Guest guest Posted December 8, 2007 Report Share Posted December 8, 2007 I presume people try melatonin in adequate quantities, up to 30 mg a night, before making recourse to this kind of stuff? Magnesium is also sometimes mildly helpful, and a lot of people do well with 500 mg of GABA at bedtime. I used to need 20-30 mg of melatonin at bedtime and it was wonderful. If you wake up after 5 hours or so 3 mg of time release melatonin added in usually fixes that (also my experience). I've talked to a very large number of people who tried these both with great success. GABA is the natural version of things like Klonopin. It only lasts a few hours in your body. Some people's livers seem to turn it into glutamate (msg) so it doesn't work for them and makes them hyper, most do well on it. There are a lot of other OTC things like kava kava that help. What I've seen with klonopin (in other people) is that for many it is wonderfully helpful, but yes it can be addictive and a tolerance can develop in which case discontinuing it abruptly is a truly miserable experience as it is with many other medications. The key here is not to get all emotional about the drug being " bad " and somehow having moral properties, but simply to recognize this as a negative it does have and decide if the positives outweigh the negatives before using it or when deciding to continue it. Klonopin is generally used for anxiety, panic attacks, absence seizures, and a lot of time in people with multiple sclerosis. Andy > > > > > > I find that it calms down my overexcited brain and allows me to > sleep. Also it actually > > helps my cognition. I have been reducing my dosage and I am down to a > little less than 1 > > mg at night. Is there something better to replace it? I know I am > addicted. It stopped my > > restless leg syndrome. I have been on it for 18 years. joyce > > > > Klonopin is really still the best choice for this kind of thing. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2007 Report Share Posted December 9, 2007 Hey Andy. I agree about your statements on Klonopin, however, I was just going to reply to say that I got REAL depressed taking only 3 mg. of melatonin, then per Ken's wishes, I found the article at the site below. http://www.apollohealth.com/melatonin_and_depression.html An excerpt: <<Melatonin is an important nighttime hormone associated with sleep and regeneration. However, excessive levels or daytime melatonin can cause depressive disorders. Medical research confirms the relationship between melatonin and mood disorders.>> While not everyone may get a mood disorder/depression by taking melatonin, I certainly wish I had had this info. before i tried it. Mike C In , " andrewhallcutler " <AndyCutler@...> wrote: > > I presume people try melatonin in adequate quantities, up to 30 mg a night, before > making recourse to this kind of stuff? Magnesium is also sometimes mildly helpful, and a > lot of people do well with 500 mg of GABA at bedtime. > > I used to need 20-30 mg of melatonin at bedtime and it was wonderful. If you wake up > after 5 hours or so 3 mg of time release melatonin added in usually fixes that (also my > experience). I've talked to a very large number of people who tried these both with great > success. > > GABA is the natural version of things like Klonopin. It only lasts a few hours in your body. > Some people's livers seem to turn it into glutamate (msg) so it doesn't work for them and > makes them hyper, most do well on it. > > There are a lot of other OTC things like kava kava that help. > > What I've seen with klonopin (in other people) is that for many it is wonderfully helpful, but > yes it can be addictive and a tolerance can develop in which case discontinuing it abruptly > is a truly miserable experience as it is with many other medications. The key here is not > to get all emotional about the drug being " bad " and somehow having moral properties, but > simply to recognize this as a negative it does have and decide if the positives outweigh the > negatives before using it or when deciding to continue it. > > Klonopin is generally used for anxiety, panic attacks, absence seizures, and a lot of time in > people with multiple sclerosis. > > Andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2007 Report Share Posted December 9, 2007 Yes, I got depressed on Melatonin too. Gail yakcamp22 wrote: > > Hey Andy. I agree about your statements on Klonopin, however, I was > just going to reply to say that I got REAL depressed taking only > 3 mg. of melatonin, then per Ken's wishes, I found the article at > the site below. > > http://www.apollohealth.com/melatonin_and_depression.html > <http://www.apollohealth.com/melatonin_and_depression.html> > > An excerpt: > > <<Melatonin is an important nighttime hormone associated with sleep > and regeneration. However, excessive levels or daytime melatonin can > cause depressive disorders. Medical research confirms the > relationship between melatonin and mood disorders.>> > > While not everyone may get a mood disorder/depression by taking > melatonin, I certainly wish I had had this info. before i tried it. > > Mike C > > In > <mailto:%40>, " andrewhallcutler " > <AndyCutler@...> wrote: > > > > I presume people try melatonin in adequate quantities, up to 30 mg > a night, before > > making recourse to this kind of stuff? Magnesium is also sometimes > mildly helpful, and a > > lot of people do well with 500 mg of GABA at bedtime. > > > > I used to need 20-30 mg of melatonin at bedtime and it was > wonderful. If you wake up > > after 5 hours or so 3 mg of time release melatonin added in usually > fixes that (also my > > experience). I've talked to a very large number of people who > tried these both with great > > success. > > > > GABA is the natural version of things like Klonopin. It only lasts > a few hours in your body. > > Some people's livers seem to turn it into glutamate (msg) so it > doesn't work for them and > > makes them hyper, most do well on it. > > > > There are a lot of other OTC things like kava kava that help. > > > > What I've seen with klonopin (in other people) is that for many it > is wonderfully helpful, but > > yes it can be addictive and a tolerance can develop in which case > discontinuing it abruptly > > is a truly miserable experience as it is with many other > medications. The key here is not > > to get all emotional about the drug being " bad " and somehow having > moral properties, but > > simply to recognize this as a negative it does have and decide if > the positives outweigh the > > negatives before using it or when deciding to continue it. > > > > Klonopin is generally used for anxiety, panic attacks, absence > seizures, and a lot of time in > > people with multiple sclerosis. > > > > Andy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2007 Report Share Posted December 9, 2007 3 mg melatonin is IMO a moderately high amt. Med literature has used higher amounts for testing, but the less the better, use only what works, is my view. Melatonin is a Hormone. If one had a melatonin *hormone deficiency*, melatonin might be appropriate - and that would include many people over 50, a few younger than that, but I would suspect very few younger than 45 yrs old, beginning at 0.5 mg and working up. 1.0-1.5 mg is often sufficient, and can complement other hormones and supplements for sleep when each is done in small amount (caution with combined amounts, be conservative, experiment slowly). Sedation can slide right over into " depression " for many people - one of those things that's obvious after the fact :-) Carol willis_protocols " yakcamp22 " <yakcamp22@...> wrote: > I got REAL depressed taking only > 3 mg. of melatonin, then per Ken's wishes, I found the article at > the site below. > > http://www.apollohealth.com/melatonin_and_depression.html > > An excerpt: > > <<Melatonin is an important nighttime hormone associated with sleep > and regeneration. However, excessive levels or daytime melatonin can > cause depressive disorders. Medical research confirms the > relationship between melatonin and mood disorders.>> > > While not everyone may get a mood disorder/depression by taking > melatonin, I certainly wish I had had this info. before i tried it. > > Mike C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2007 Report Share Posted December 9, 2007 Mike, I also tried Melatonin when it first became popular and got VERY depressed, it was very strange, I'd never felt like that. And that was even lower doses than you mention. I tried it again many years later just to see what would happen, same thing..... scary depression, I did not want to live. Marcia/Oregon > Hey Andy. I agree about your statements on Klonopin, however, I was > just going to reply to say that I got REAL depressed taking only > 3 mg. of melatonin, then per Ken's wishes, I found the article at > the site below. > > http://www.apollohealth.com/melatonin_and_depression.html > > An excerpt: > > <<Melatonin is an important nighttime hormone associated with sleep > and regeneration. However, excessive levels or daytime melatonin can > cause depressive disorders. Medical research confirms the > relationship between melatonin and mood disorders.>> > > While not everyone may get a mood disorder/depression by taking > melatonin, I certainly wish I had had this info. before i tried it. > > Mike C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 > > 3 mg melatonin is IMO a moderately high amt. It appears you aren't familiar with it and read only irrelevant (MD) literature. > Med literature has used higher amounts for testing, > but the less the better, use only what works, is my view. This is true. Use what you need, no more. Up to 20 or 30 mg. > Melatonin is a Hormone. > If one had a melatonin *hormone deficiency*, Interesting halfway accurate information. It's like calling adrenaline a hormone, which it is. Unlike what most laymen think of as 'hormones,' when you take melatonin even in vast quantities, it has no effect whatsoever on how much your body makes. Your body makes the same amount - which may or may not be enough - every day, no matter how much or little you take. The most basic rule of thumb of trying anything is very simple. If it is completely safe it doesn't do anything. Every agent that does anything at all has some risk. People with CFS etc. are biochemically different from the regular population which is who most of the subjects in journal paper research are. If you can't accept any risk, then you aren't going to be able to do anything and are condemned to a lifetime of suffering. If you CAN accept that there are risks then yes it is wise to know what they are so as to discontinue something if it is bad for you. WIth melatonin the key is if you are groggy or sleepy when you get up then your body isn't clearing it out and you are taking too much. For a few people this will happen at 3 mg, for most it starts at about 30 mg. Some people find it makes the agitated or disturbed (these are mostly very emotional people who may have been offered mood stabilizing medication at some point by their doctor), and this is an obvious reason to discontinue it. Since Melatonin IS the body's natural 'sleep hormone,' that tells your body to sleep naturally, you get far, far better sleep out of it than out of any other substance. Andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Andy-if you want to ignore testimonials, even people like me who got a mood disorder on a small amount without any history of depression, that is up to you. Also, I didn't know when I took it that it could cause a depressive state/mood disorder. Maybe it won't be a problem for everyone, but the experimental use by people on this list should be enough to give other members what they need to know-if M starts to cause a problem, don't use it. Mike C > > > > 3 mg melatonin is IMO a moderately high amt. > > It appears you aren't familiar with it and read only irrelevant (MD) literature. > > > Med literature has used higher amounts for testing, > > but the less the better, use only what works, is my view. > > This is true. Use what you need, no more. Up to 20 or 30 mg. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Mike, As I mentioned, I had also tried melatonin many many years ago and had the same response. Then years later I read a CFS study where patients were commonly already too high in melatonin. So then it made sense to me. I actually have a sizable cyst on my pineal gland (the gland that converts serotonin to melatonin). Those cysts are not 'all that' rare actually, so that may affect how I react to Melatonin, I dont' know, others might have a cyst and not be aware of it, unless you had an mri for something else and it was caught. Things are not always as they 'appear' to be I've found out over the years. Marcia/Oregon Re: klonopin > Andy-if you want to ignore testimonials, even people like me who > got a mood disorder on a small amount without any history of > depression, that is up to you. Also, I didn't know when I took it > that it could cause a depressive state/mood disorder. Maybe it won't > be a problem for everyone, but the experimental use by people on this > list should be enough to give other members what they need to > know-if M starts to cause a problem, don't use it. > > Mike C > > > > > > > > 3 mg melatonin is IMO a moderately high amt. > > > > It appears you aren't familiar with it and read only irrelevant > (MD) literature. > > > > > Med literature has used higher amounts for testing, > > > but the less the better, use only what works, is my view. > > > > This is true. Use what you need, no more. Up to 20 or 30 mg. > > > > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 20-30 mg Melatonin is extremely high dose. Either you have severe deficiency or a low potency product 0,05-5 mg is what is most often used by Endocrinologists. Id be happy to see some studies where larger dosage is used though. From wiki: It appears to have some use against other circadian rhythm sleep disorders, such as jet lag. It has been studied for the treatment of cancer, immune disorders, cardiovascular diseases, depression, seasonal affective disorder (SAD), and sexual dysfunction. A study by Alfred J. Lewy and other researchers at Oregon Health & Science University found that it may ameliorate SAD and circadian misalignment,[35] but as of 2006 it is known to affect the timing of endogenous melatonin production during long-term melatonin treatment in rats, raising the risk that it can exacerbate both clinical depression and SAD. - Also one must be aware that Melatonin often worsen adrenal conditions, causing symptoms like headache, fatigue when standing upright and low blood pressure. Therefore it is adviced to address cortisol problems and start slow. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 http://www.benzo.org.uk/ i know someone who developed psychosis coming off klonopin (rivotril in uk). please think very carefully before starting this medication. > > Cheney still uses Klonopin. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Katrina and a, I am one of the people for whom Dr. Cheney prescribed klonopin. My own experience. was becoming tolerant to the drug and suffering withdrawals while still on it, and being physically dependent on it, and then going through horrible withdrawal symptoms until I discovered Helen's water titration system. Finally, I took more than a year to withdraw from klonopin. I don't give advice to anyone about benzos any more, other than to be very CAREFUL about them. Apparently some people can take them and get off them with no problem. I was not one of those people. pjeanneus wrote: > > Katrina, Look for brief replies with *** > > I do not think it's fair o make such a declarative statement on > this list. particularly when I'm sure you're aware that Klonopin has > been used successfully by many CFS patients over the years to relieve > some of the most horrific symptoms we have. > ***I do not know one cfids patient in 13 years who has recovered in > any way on klonopin. Did it relieve symptoms? The patients I knew on > it generally were zombies. > > > > > A different matter is to post known side effects (common or rare), > or one's own individual adverse reaction (mild or severe), as you did > re Lyrica. That is very important information. > ***I am not free to repost emails I have on file of other patients > who had severe withdrawal issues with klonopin. I cannot post my own > experience in that regard as I never was willing to risk myself and > take it. > > > > > Klonopin is a top prescribed medication by Specialists in both CFS > and Dystonia, which I also have. I have seen scores of people's > experiences for many many years in both populations. > > > > The range of results is as wide as the difference between night and > day. I also have personal friends who have had the very best, > dramatic success, altering their lives significnificantly in a > positive way, and who've the most terrible nightmare experiences > (mainly in coming off of long term and not-low doses). > ***This was one of my points - it does relieve symptoms, but the > risks are very serious. > > > > > My own experience with Klonopin is that many years ago, with less > knowledge about dosing, I began on a " normal " dose. I experienced > sedation and depression. Therefore after a brief trial, I left it for > years, never planning to go near it again. > > > > Due to serious concerns about progression of damage being reported > in CFS brains, and my horrible sensory overload, (plus other patient' > positive results), I re-visited Klonopin. > > > > By then I had learned I am so exquisitely sensitive to drugs, that > at miniscule doses, I have rather immediate results, whether pro or > con. > > > > At extremely low dose, (1/4 of a .5, it instantly gave me a tool > for the horrible sensory overload. And an added one for my horrific > muscle contractions. > > > > I also have an improvement in cognitive and communicative skills. > ***The point is - when you go off it your brain is NO BETTER and may > be worse. That is a huge risk to relieve symptoms. Hey, I would take > it too, if I had to. I am taking 75mg of Lyrica at night, but I am > fully aware it will cure NOTHING and is protecting NOTHING. It is > causing ongoing damage. Like you, I cannot tolerate the nerve > problems I now have without it. These nerve problems in my case were > CAUSED by quinolones and perhaps a viral infection 2 years ago that > was unrelated to cfids or Lyme, as far as we can determine. > > > > > Becasue of Dr. Cheney's use of it for Neuroprotection, I began with > the same dose at night, moving to .5 every night. When I skip it, my > brain is again over-firing the next day. > ****There is no documentation that it protects anything. None. It > does help one get through the day or night. > > > > > I use the 1/4 sometimes in the day time, and on ocassion a little > more, or one other dose. > > > > I have never had any of the side effects on the list you posted. > > > > Sometimes I would like to try more becasue of brain damage concerns > and pain in my brain. > > > > But I've remained at this very cautious dose for 3 reasons: > > > > A) My previous depression response > > > > My MCS response to nearly everything > > > > C) The horrific time that others have had in going off of it. > > > > I prefer to use non-chemical interventions, so whenever possible I > take those that have worked, in addition or try new things. Blockers > of NMDA receptors are very helpful to me, and other things. > > > > I always recommend that PWCs (or anyone) begin pharmaceuticals at > far lower doses than normally prescribed. Both to accurately monitor > and prevent negative effects, and becasue we often do not need more > than minute doses to benefit. > > > > If I know someone on Klonopin who has depression, I make sure to > tell them my experience, and watch for that myself. > > > > a, over the years, you have rather adamantly recommended some > pharmaceuticals that many can not tolerate or which have caused > serious damage to some, even your own self. > ***The only damage I have ever had was from quinolone antibiotics > WHICH I NEVER RECOMMENDED TO ANYONE. What I have recommended was the > old Roadback Foundation protocol of low dose, pulsed minocyline and > Zithromax, low dose. The risk of these antibiotics is minimal. I was > given quinolones by a doctor who thought it was a good way to treat > Lyme disease. I have since continuously and religiously warned all > other patients against ever taking any quinolones for any reason. > There is no point in taking such a dangerous antibiotic when others > are effective and safer. > > > > > I believe it's crucial, especially in such a sensitive and ill > population, to give a fully disclosed and balanced view of treatment > results, pro and con, stressing that individuals vary widely. > > > > If we cannot do that, we should stick simply to *our own* > experience, and as fully disclosed as we are able/aware of. > ***Let me add that my experience included 5 years of attending the > support group in Charlotte, NC. I never say any patient of Cheney > recover. They were generally all on Klonopin. I think this > observation qualifies as some sort of experience along with many > postings of horror stories from patients trying to get of Klonopin. > > a Carnes > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Where can I find more information on Helen's water titration system? retractap@... wrote: > Katrina and a, I am one of the people for whom Dr. Cheney prescribed > klonopin. My own experience. was becoming tolerant to the drug and > suffering withdrawals while still on it, and being physically dependent > on it, and then going through horrible withdrawal symptoms until I > discovered Helen's water titration system. Finally, I took more than a > year to withdraw from klonopin. I don't give advice to anyone about > benzos any more, other than to be very CAREFUL about them. Apparently > some people can take them and get off them with no problem. I was not > one of those people. > > > > pjeanneus wrote: > >> Katrina, Look for brief replies with *** >> >>> I do not think it's fair o make such a declarative statement on >>> >> this list. particularly when I'm sure you're aware that Klonopin has >> been used successfully by many CFS patients over the years to relieve >> some of the most horrific symptoms we have. >> ***I do not know one cfids patient in 13 years who has recovered in >> any way on klonopin. Did it relieve symptoms? The patients I knew on >> it generally were zombies. >> >> >>> A different matter is to post known side effects (common or rare), >>> >> or one's own individual adverse reaction (mild or severe), as you did >> re Lyrica. That is very important information. >> ***I am not free to repost emails I have on file of other patients >> who had severe withdrawal issues with klonopin. I cannot post my own >> experience in that regard as I never was willing to risk myself and >> take it. >> >> >>> Klonopin is a top prescribed medication by Specialists in both CFS >>> >> and Dystonia, which I also have. I have seen scores of people's >> experiences for many many years in both populations. >> >>> The range of results is as wide as the difference between night and >>> >> day. I also have personal friends who have had the very best, >> dramatic success, altering their lives significnificantly in a >> positive way, and who've the most terrible nightmare experiences >> (mainly in coming off of long term and not-low doses). >> ***This was one of my points - it does relieve symptoms, but the >> risks are very serious. >> >> >>> My own experience with Klonopin is that many years ago, with less >>> >> knowledge about dosing, I began on a " normal " dose. I experienced >> sedation and depression. Therefore after a brief trial, I left it for >> years, never planning to go near it again. >> >>> Due to serious concerns about progression of damage being reported >>> >> in CFS brains, and my horrible sensory overload, (plus other patient' >> positive results), I re-visited Klonopin. >> >>> By then I had learned I am so exquisitely sensitive to drugs, that >>> >> at miniscule doses, I have rather immediate results, whether pro or >> con. >> >>> At extremely low dose, (1/4 of a .5, it instantly gave me a tool >>> >> for the horrible sensory overload. And an added one for my horrific >> muscle contractions. >> >>> I also have an improvement in cognitive and communicative skills. >>> >> ***The point is - when you go off it your brain is NO BETTER and may >> be worse. That is a huge risk to relieve symptoms. Hey, I would take >> it too, if I had to. I am taking 75mg of Lyrica at night, but I am >> fully aware it will cure NOTHING and is protecting NOTHING. It is >> causing ongoing damage. Like you, I cannot tolerate the nerve >> problems I now have without it. These nerve problems in my case were >> CAUSED by quinolones and perhaps a viral infection 2 years ago that >> was unrelated to cfids or Lyme, as far as we can determine. >> >> >>> Becasue of Dr. Cheney's use of it for Neuroprotection, I began with >>> >> the same dose at night, moving to .5 every night. When I skip it, my >> brain is again over-firing the next day. >> ****There is no documentation that it protects anything. None. It >> does help one get through the day or night. >> >> >>> I use the 1/4 sometimes in the day time, and on ocassion a little >>> >> more, or one other dose. >> >>> I have never had any of the side effects on the list you posted. >>> >>> Sometimes I would like to try more becasue of brain damage concerns >>> >> and pain in my brain. >> >>> But I've remained at this very cautious dose for 3 reasons: >>> >>> A) My previous depression response >>> >>> My MCS response to nearly everything >>> >>> C) The horrific time that others have had in going off of it. >>> >>> I prefer to use non-chemical interventions, so whenever possible I >>> >> take those that have worked, in addition or try new things. Blockers >> of NMDA receptors are very helpful to me, and other things. >> >>> I always recommend that PWCs (or anyone) begin pharmaceuticals at >>> >> far lower doses than normally prescribed. Both to accurately monitor >> and prevent negative effects, and becasue we often do not need more >> than minute doses to benefit. >> >>> If I know someone on Klonopin who has depression, I make sure to >>> >> tell them my experience, and watch for that myself. >> >>> a, over the years, you have rather adamantly recommended some >>> >> pharmaceuticals that many can not tolerate or which have caused >> serious damage to some, even your own self. >> ***The only damage I have ever had was from quinolone antibiotics >> WHICH I NEVER RECOMMENDED TO ANYONE. What I have recommended was the >> old Roadback Foundation protocol of low dose, pulsed minocyline and >> Zithromax, low dose. The risk of these antibiotics is minimal. I was >> given quinolones by a doctor who thought it was a good way to treat >> Lyme disease. I have since continuously and religiously warned all >> other patients against ever taking any quinolones for any reason. >> There is no point in taking such a dangerous antibiotic when others >> are effective and safer. >> >> >>> I believe it's crucial, especially in such a sensitive and ill >>> >> population, to give a fully disclosed and balanced view of treatment >> results, pro and con, stressing that individuals vary widely. >> >>> If we cannot do that, we should stick simply to *our own* >>> >> experience, and as fully disclosed as we are able/aware of. >> ***Let me add that my experience included 5 years of attending the >> support group in Charlotte, NC. I never say any patient of Cheney >> recover. They were generally all on Klonopin. I think this >> observation qualifies as some sort of experience along with many >> postings of horror stories from patients trying to get of Klonopin. >> >> a Carnes >> >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Tony, I think you can find it on a Benzo patient forum or google it. The method is not Helen's specificaly, but one she told us about. (Sorry if I left something out...others know more specifics). Katrina > > > >> Katrina, Look for brief replies with *** > >> > >>> I do not think it's fair o make such a declarative statement on > >>> > >> this list. particularly when I'm sure you're aware that Klonopin has > >> been used successfully by many CFS patients over the years to relieve > >> some of the most horrific symptoms we have. > >> ***I do not know one cfids patient in 13 years who has recovered in > >> any way on klonopin. Did it relieve symptoms? The patients I knew on > >> it generally were zombies. > >> > >> > >>> A different matter is to post known side effects (common or rare), > >>> > >> or one's own individual adverse reaction (mild or severe), as you did > >> re Lyrica. That is very important information. > >> ***I am not free to repost emails I have on file of other patients > >> who had severe withdrawal issues with klonopin. I cannot post my own > >> experience in that regard as I never was willing to risk myself and > >> take it. > >> > >> > >>> Klonopin is a top prescribed medication by Specialists in both CFS > >>> > >> and Dystonia, which I also have. I have seen scores of people's > >> experiences for many many years in both populations. > >> > >>> The range of results is as wide as the difference between night and > >>> > >> day. I also have personal friends who have had the very best, > >> dramatic success, altering their lives significnificantly in a > >> positive way, and who've the most terrible nightmare experiences > >> (mainly in coming off of long term and not-low doses). > >> ***This was one of my points - it does relieve symptoms, but the > >> risks are very serious. > >> > >> > >>> My own experience with Klonopin is that many years ago, with less > >>> > >> knowledge about dosing, I began on a " normal " dose. I experienced > >> sedation and depression. Therefore after a brief trial, I left it for > >> years, never planning to go near it again. > >> > >>> Due to serious concerns about progression of damage being reported > >>> > >> in CFS brains, and my horrible sensory overload, (plus other patient' > >> positive results), I re-visited Klonopin. > >> > >>> By then I had learned I am so exquisitely sensitive to drugs, that > >>> > >> at miniscule doses, I have rather immediate results, whether pro or > >> con. > >> > >>> At extremely low dose, (1/4 of a .5, it instantly gave me a tool > >>> > >> for the horrible sensory overload. And an added one for my horrific > >> muscle contractions. > >> > >>> I also have an improvement in cognitive and communicative skills. > >>> > >> ***The point is - when you go off it your brain is NO BETTER and may > >> be worse. That is a huge risk to relieve symptoms. Hey, I would take > >> it too, if I had to. I am taking 75mg of Lyrica at night, but I am > >> fully aware it will cure NOTHING and is protecting NOTHING. It is > >> causing ongoing damage. Like you, I cannot tolerate the nerve > >> problems I now have without it. These nerve problems in my case were > >> CAUSED by quinolones and perhaps a viral infection 2 years ago that > >> was unrelated to cfids or Lyme, as far as we can determine. > >> > >> > >>> Becasue of Dr. Cheney's use of it for Neuroprotection, I began with > >>> > >> the same dose at night, moving to .5 every night. When I skip it, my > >> brain is again over-firing the next day. > >> ****There is no documentation that it protects anything. None. It > >> does help one get through the day or night. > >> > >> > >>> I use the 1/4 sometimes in the day time, and on ocassion a little > >>> > >> more, or one other dose. > >> > >>> I have never had any of the side effects on the list you posted. > >>> > >>> Sometimes I would like to try more becasue of brain damage concerns > >>> > >> and pain in my brain. > >> > >>> But I've remained at this very cautious dose for 3 reasons: > >>> > >>> A) My previous depression response > >>> > >>> My MCS response to nearly everything > >>> > >>> C) The horrific time that others have had in going off of it. > >>> > >>> I prefer to use non-chemical interventions, so whenever possible I > >>> > >> take those that have worked, in addition or try new things. Blockers > >> of NMDA receptors are very helpful to me, and other things. > >> > >>> I always recommend that PWCs (or anyone) begin pharmaceuticals at > >>> > >> far lower doses than normally prescribed. Both to accurately monitor > >> and prevent negative effects, and becasue we often do not need more > >> than minute doses to benefit. > >> > >>> If I know someone on Klonopin who has depression, I make sure to > >>> > >> tell them my experience, and watch for that myself. > >> > >>> a, over the years, you have rather adamantly recommended some > >>> > >> pharmaceuticals that many can not tolerate or which have caused > >> serious damage to some, even your own self. > >> ***The only damage I have ever had was from quinolone antibiotics > >> WHICH I NEVER RECOMMENDED TO ANYONE. What I have recommended was the > >> old Roadback Foundation protocol of low dose, pulsed minocyline and > >> Zithromax, low dose. The risk of these antibiotics is minimal. I was > >> given quinolones by a doctor who thought it was a good way to treat > >> Lyme disease. I have since continuously and religiously warned all > >> other patients against ever taking any quinolones for any reason. > >> There is no point in taking such a dangerous antibiotic when others > >> are effective and safer. > >> > >> > >>> I believe it's crucial, especially in such a sensitive and ill > >>> > >> population, to give a fully disclosed and balanced view of treatment > >> results, pro and con, stressing that individuals vary widely. > >> > >>> If we cannot do that, we should stick simply to *our own* > >>> > >> experience, and as fully disclosed as we are able/aware of. > >> ***Let me add that my experience included 5 years of attending the > >> support group in Charlotte, NC. I never say any patient of Cheney > >> recover. They were generally all on Klonopin. I think this > >> observation qualifies as some sort of experience along with many > >> postings of horror stories from patients trying to get of Klonopin. > >> > >> a Carnes > >> > >> > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 Go to http://www.benzosupport.org (a group). Tony wrote: > > Where can I find more information on Helen's water titration system? > > retractap@... <mailto:retractap%40bellsouth.net> wrote: > > Katrina and a, I am one of the people for whom Dr. Cheney > prescribed > > klonopin. My own experience. was becoming tolerant to the drug and > > suffering withdrawals while still on it, and being physically dependent > > on it, and then going through horrible withdrawal symptoms until I > > discovered Helen's water titration system. Finally, I took more than a > > year to withdraw from klonopin. I don't give advice to anyone about > > benzos any more, other than to be very CAREFUL about them. Apparently > > some people can take them and get off them with no problem. I was not > > one of those people. > > > > > > > > pjeanneus wrote: > > > >> Katrina, Look for brief replies with *** > >> > >>> I do not think it's fair o make such a declarative statement on > >>> > >> this list. particularly when I'm sure you're aware that Klonopin has > >> been used successfully by many CFS patients over the years to relieve > >> some of the most horrific symptoms we have. > >> ***I do not know one cfids patient in 13 years who has recovered in > >> any way on klonopin. Did it relieve symptoms? The patients I knew on > >> it generally were zombies. > >> > >> > >>> A different matter is to post known side effects (common or rare), > >>> > >> or one's own individual adverse reaction (mild or severe), as you did > >> re Lyrica. That is very important information. > >> ***I am not free to repost emails I have on file of other patients > >> who had severe withdrawal issues with klonopin. I cannot post my own > >> experience in that regard as I never was willing to risk myself and > >> take it. > >> > >> > >>> Klonopin is a top prescribed medication by Specialists in both CFS > >>> > >> and Dystonia, which I also have. I have seen scores of people's > >> experiences for many many years in both populations. > >> > >>> The range of results is as wide as the difference between night and > >>> > >> day. I also have personal friends who have had the very best, > >> dramatic success, altering their lives significnificantly in a > >> positive way, and who've the most terrible nightmare experiences > >> (mainly in coming off of long term and not-low doses). > >> ***This was one of my points - it does relieve symptoms, but the > >> risks are very serious. > >> > >> > >>> My own experience with Klonopin is that many years ago, with less > >>> > >> knowledge about dosing, I began on a " normal " dose. I experienced > >> sedation and depression. Therefore after a brief trial, I left it for > >> years, never planning to go near it again. > >> > >>> Due to serious concerns about progression of damage being reported > >>> > >> in CFS brains, and my horrible sensory overload, (plus other patient' > >> positive results), I re-visited Klonopin. > >> > >>> By then I had learned I am so exquisitely sensitive to drugs, that > >>> > >> at miniscule doses, I have rather immediate results, whether pro or > >> con. > >> > >>> At extremely low dose, (1/4 of a .5, it instantly gave me a tool > >>> > >> for the horrible sensory overload. And an added one for my horrific > >> muscle contractions. > >> > >>> I also have an improvement in cognitive and communicative skills. > >>> > >> ***The point is - when you go off it your brain is NO BETTER and may > >> be worse. That is a huge risk to relieve symptoms. Hey, I would take > >> it too, if I had to. I am taking 75mg of Lyrica at night, but I am > >> fully aware it will cure NOTHING and is protecting NOTHING. It is > >> causing ongoing damage. Like you, I cannot tolerate the nerve > >> problems I now have without it. These nerve problems in my case were > >> CAUSED by quinolones and perhaps a viral infection 2 years ago that > >> was unrelated to cfids or Lyme, as far as we can determine. > >> > >> > >>> Becasue of Dr. Cheney's use of it for Neuroprotection, I began with > >>> > >> the same dose at night, moving to .5 every night. When I skip it, my > >> brain is again over-firing the next day. > >> ****There is no documentation that it protects anything. None. It > >> does help one get through the day or night. > >> > >> > >>> I use the 1/4 sometimes in the day time, and on ocassion a little > >>> > >> more, or one other dose. > >> > >>> I have never had any of the side effects on the list you posted. > >>> > >>> Sometimes I would like to try more becasue of brain damage concerns > >>> > >> and pain in my brain. > >> > >>> But I've remained at this very cautious dose for 3 reasons: > >>> > >>> A) My previous depression response > >>> > >>> My MCS response to nearly everything > >>> > >>> C) The horrific time that others have had in going off of it. > >>> > >>> I prefer to use non-chemical interventions, so whenever possible I > >>> > >> take those that have worked, in addition or try new things. Blockers > >> of NMDA receptors are very helpful to me, and other things. > >> > >>> I always recommend that PWCs (or anyone) begin pharmaceuticals at > >>> > >> far lower doses than normally prescribed. Both to accurately monitor > >> and prevent negative effects, and becasue we often do not need more > >> than minute doses to benefit. > >> > >>> If I know someone on Klonopin who has depression, I make sure to > >>> > >> tell them my experience, and watch for that myself. > >> > >>> a, over the years, you have rather adamantly recommended some > >>> > >> pharmaceuticals that many can not tolerate or which have caused > >> serious damage to some, even your own self. > >> ***The only damage I have ever had was from quinolone antibiotics > >> WHICH I NEVER RECOMMENDED TO ANYONE. What I have recommended was the > >> old Roadback Foundation protocol of low dose, pulsed minocyline and > >> Zithromax, low dose. The risk of these antibiotics is minimal. I was > >> given quinolones by a doctor who thought it was a good way to treat > >> Lyme disease. I have since continuously and religiously warned all > >> other patients against ever taking any quinolones for any reason. > >> There is no point in taking such a dangerous antibiotic when others > >> are effective and safer. > >> > >> > >>> I believe it's crucial, especially in such a sensitive and ill > >>> > >> population, to give a fully disclosed and balanced view of treatment > >> results, pro and con, stressing that individuals vary widely. > >> > >>> If we cannot do that, we should stick simply to *our own* > >>> > >> experience, and as fully disclosed as we are able/aware of. > >> ***Let me add that my experience included 5 years of attending the > >> support group in Charlotte, NC. I never say any patient of Cheney > >> recover. They were generally all on Klonopin. I think this > >> observation qualifies as some sort of experience along with many > >> postings of horror stories from patients trying to get of Klonopin. > >> > >> a Carnes > >> > >> > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 Im sorry , did Helen get off Kolonopin before she passed, I ask this becasue I wonder if her withdrawal had anything to do with her passing, not going to change my mind though as far as titrating off. KIndest Regards Mike @...: retractap@...: Fri, 6 Jun 2008 22:30:58 -0400Subject: Re: Re: Klonopin Katrina and a, I am one of the people for whom Dr. Cheney prescribed klonopin. My own experience. was becoming tolerant to the drug and suffering withdrawals while still on it, and being physically dependent on it, and then going through horrible withdrawal symptoms until I discovered Helen's water titration system. Finally, I took more than a year to withdraw from klonopin. I don't give advice to anyone about benzos any more, other than to be very CAREFUL about them. Apparently some people can take them and get off them with no problem. I was not one of those people.pjeanneus wrote:>> Katrina, Look for brief replies with ***> > I do not think it's fair o make such a declarative statement on> this list. particularly when I'm sure you're aware that Klonopin has> been used successfully by many CFS patients over the years to relieve> some of the most horrific symptoms we have.> ***I do not know one cfids patient in 13 years who has recovered in> any way on klonopin. Did it relieve symptoms? The patients I knew on> it generally were zombies.>> >> > A different matter is to post known side effects (common or rare),> or one's own individual adverse reaction (mild or severe), as you did> re Lyrica. That is very important information.> ***I am not free to repost emails I have on file of other patients> who had severe withdrawal issues with klonopin. I cannot post my own> experience in that regard as I never was willing to risk myself and> take it.>> >> > Klonopin is a top prescribed medication by Specialists in both CFS> and Dystonia, which I also have. I have seen scores of people's> experiences for many many years in both populations.> >> > The range of results is as wide as the difference between night and> day. I also have personal friends who have had the very best,> dramatic success, altering their lives significnificantly in a> positive way, and who've the most terrible nightmare experiences> (mainly in coming off of long term and not-low doses).> ***This was one of my points - it does relieve symptoms, but the> risks are very serious.>> >> > My own experience with Klonopin is that many years ago, with less> knowledge about dosing, I began on a " normal " dose. I experienced> sedation and depression. Therefore after a brief trial, I left it for> years, never planning to go near it again.> >> > Due to serious concerns about progression of damage being reported> in CFS brains, and my horrible sensory overload, (plus other patient'> positive results), I re-visited Klonopin.> >> > By then I had learned I am so exquisitely sensitive to drugs, that> at miniscule doses, I have rather immediate results, whether pro or> con.> >> > At extremely low dose, (1/4 of a .5, it instantly gave me a tool> for the horrible sensory overload. And an added one for my horrific> muscle contractions.> >> > I also have an improvement in cognitive and communicative skills.> ***The point is - when you go off it your brain is NO BETTER and may> be worse. That is a huge risk to relieve symptoms. Hey, I would take> it too, if I had to. I am taking 75mg of Lyrica at night, but I am> fully aware it will cure NOTHING and is protecting NOTHING. It is> causing ongoing damage. Like you, I cannot tolerate the nerve> problems I now have without it. These nerve problems in my case were> CAUSED by quinolones and perhaps a viral infection 2 years ago that> was unrelated to cfids or Lyme, as far as we can determine.>> >> > Becasue of Dr. Cheney's use of it for Neuroprotection, I began with> the same dose at night, moving to .5 every night. When I skip it, my> brain is again over-firing the next day.> ****There is no documentation that it protects anything. None. It> does help one get through the day or night.>> >> > I use the 1/4 sometimes in the day time, and on ocassion a little> more, or one other dose.> >> > I have never had any of the side effects on the list you posted.> >> > Sometimes I would like to try more becasue of brain damage concerns> and pain in my brain.> >> > But I've remained at this very cautious dose for 3 reasons:> >> > A) My previous depression response> >> > My MCS response to nearly everything> >> > C) The horrific time that others have had in going off of it.> >> > I prefer to use non-chemical interventions, so whenever possible I> take those that have worked, in addition or try new things. Blockers> of NMDA receptors are very helpful to me, and other things.> >> > I always recommend that PWCs (or anyone) begin pharmaceuticals at> far lower doses than normally prescribed. Both to accurately monitor> and prevent negative effects, and becasue we often do not need more> than minute doses to benefit.> >> > If I know someone on Klonopin who has depression, I make sure to> tell them my experience, and watch for that myself.> >> > a, over the years, you have rather adamantly recommended some> pharmaceuticals that many can not tolerate or which have caused> serious damage to some, even your own self.> ***The only damage I have ever had was from quinolone antibiotics> WHICH I NEVER RECOMMENDED TO ANYONE. What I have recommended was the> old Roadback Foundation protocol of low dose, pulsed minocyline and> Zithromax, low dose. The risk of these antibiotics is minimal. I was> given quinolones by a doctor who thought it was a good way to treat> Lyme disease. I have since continuously and religiously warned all> other patients against ever taking any quinolones for any reason.> There is no point in taking such a dangerous antibiotic when others> are effective and safer.>> >> > I believe it's crucial, especially in such a sensitive and ill> population, to give a fully disclosed and balanced view of treatment> results, pro and con, stressing that individuals vary widely.> >> > If we cannot do that, we should stick simply to *our own*> experience, and as fully disclosed as we are able/aware of.> ***Let me add that my experience included 5 years of attending the> support group in Charlotte, NC. I never say any patient of Cheney> recover. They were generally all on Klonopin. I think this> observation qualifies as some sort of experience along with many> postings of horror stories from patients trying to get of Klonopin.>> a Carnes>> [Non-text portions of this message have been removed] _________________________________________________________________ Search that pays you back! Introducing Live Search cashback. http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyoubac\ k Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 Mais non, Katrina. Helen and several friends developed the water titration system which is still used by many. Others have, of course, copied it, and the concept was not new. The water titration system developed by Helen and friends is located at benzosupport dot org kattemayo wrote: > > > Tony, > > I think you can find it on a Benzo patient forum or google it. The > method is not Helen's specificaly, but one she told us about. > > (Sorry if I left something out...others know more specifics). > > Katrina > > > > > > > >> Katrina, Look for brief replies with *** > > >> > > >>> I do not think it's fair o make such a declarative statement on > > >>> > > >> this list. particularly when I'm sure you're aware that Klonopin has > > >> been used successfully by many CFS patients over the years to relieve > > >> some of the most horrific symptoms we have. > > >> ***I do not know one cfids patient in 13 years who has recovered in > > >> any way on klonopin. Did it relieve symptoms? The patients I knew on > > >> it generally were zombies. > > >> > > >> > > >>> A different matter is to post known side effects (common or rare), > > >>> > > >> or one's own individual adverse reaction (mild or severe), as you did > > >> re Lyrica. That is very important information. > > >> ***I am not free to repost emails I have on file of other patients > > >> who had severe withdrawal issues with klonopin. I cannot post my own > > >> experience in that regard as I never was willing to risk myself and > > >> take it. > > >> > > >> > > >>> Klonopin is a top prescribed medication by Specialists in both CFS > > >>> > > >> and Dystonia, which I also have. I have seen scores of people's > > >> experiences for many many years in both populations. > > >> > > >>> The range of results is as wide as the difference between night and > > >>> > > >> day. I also have personal friends who have had the very best, > > >> dramatic success, altering their lives significnificantly in a > > >> positive way, and who've the most terrible nightmare experiences > > >> (mainly in coming off of long term and not-low doses). > > >> ***This was one of my points - it does relieve symptoms, but the > > >> risks are very serious. > > >> > > >> > > >>> My own experience with Klonopin is that many years ago, with less > > >>> > > >> knowledge about dosing, I began on a " normal " dose. I experienced > > >> sedation and depression. Therefore after a brief trial, I left it for > > >> years, never planning to go near it again. > > >> > > >>> Due to serious concerns about progression of damage being reported > > >>> > > >> in CFS brains, and my horrible sensory overload, (plus other patient' > > >> positive results), I re-visited Klonopin. > > >> > > >>> By then I had learned I am so exquisitely sensitive to drugs, that > > >>> > > >> at miniscule doses, I have rather immediate results, whether pro or > > >> con. > > >> > > >>> At extremely low dose, (1/4 of a .5, it instantly gave me a tool > > >>> > > >> for the horrible sensory overload. And an added one for my horrific > > >> muscle contractions. > > >> > > >>> I also have an improvement in cognitive and communicative skills. > > >>> > > >> ***The point is - when you go off it your brain is NO BETTER and may > > >> be worse. That is a huge risk to relieve symptoms. Hey, I would take > > >> it too, if I had to. I am taking 75mg of Lyrica at night, but I am > > >> fully aware it will cure NOTHING and is protecting NOTHING. It is > > >> causing ongoing damage. Like you, I cannot tolerate the nerve > > >> problems I now have without it. These nerve problems in my case were > > >> CAUSED by quinolones and perhaps a viral infection 2 years ago that > > >> was unrelated to cfids or Lyme, as far as we can determine. > > >> > > >> > > >>> Becasue of Dr. Cheney's use of it for Neuroprotection, I began with > > >>> > > >> the same dose at night, moving to .5 every night. When I skip it, my > > >> brain is again over-firing the next day. > > >> ****There is no documentation that it protects anything. None. It > > >> does help one get through the day or night. > > >> > > >> > > >>> I use the 1/4 sometimes in the day time, and on ocassion a little > > >>> > > >> more, or one other dose. > > >> > > >>> I have never had any of the side effects on the list you posted. > > >>> > > >>> Sometimes I would like to try more becasue of brain damage concerns > > >>> > > >> and pain in my brain. > > >> > > >>> But I've remained at this very cautious dose for 3 reasons: > > >>> > > >>> A) My previous depression response > > >>> > > >>> My MCS response to nearly everything > > >>> > > >>> C) The horrific time that others have had in going off of it. > > >>> > > >>> I prefer to use non-chemical interventions, so whenever possible I > > >>> > > >> take those that have worked, in addition or try new things. Blockers > > >> of NMDA receptors are very helpful to me, and other things. > > >> > > >>> I always recommend that PWCs (or anyone) begin pharmaceuticals at > > >>> > > >> far lower doses than normally prescribed. Both to accurately monitor > > >> and prevent negative effects, and becasue we often do not need more > > >> than minute doses to benefit. > > >> > > >>> If I know someone on Klonopin who has depression, I make sure to > > >>> > > >> tell them my experience, and watch for that myself. > > >> > > >>> a, over the years, you have rather adamantly recommended some > > >>> > > >> pharmaceuticals that many can not tolerate or which have caused > > >> serious damage to some, even your own self. > > >> ***The only damage I have ever had was from quinolone antibiotics > > >> WHICH I NEVER RECOMMENDED TO ANYONE. What I have recommended was the > > >> old Roadback Foundation protocol of low dose, pulsed minocyline and > > >> Zithromax, low dose. The risk of these antibiotics is minimal. I was > > >> given quinolones by a doctor who thought it was a good way to treat > > >> Lyme disease. I have since continuously and religiously warned all > > >> other patients against ever taking any quinolones for any reason. > > >> There is no point in taking such a dangerous antibiotic when others > > >> are effective and safer. > > >> > > >> > > >>> I believe it's crucial, especially in such a sensitive and ill > > >>> > > >> population, to give a fully disclosed and balanced view of treatment > > >> results, pro and con, stressing that individuals vary widely. > > >> > > >>> If we cannot do that, we should stick simply to *our own* > > >>> > > >> experience, and as fully disclosed as we are able/aware of. > > >> ***Let me add that my experience included 5 years of attending the > > >> support group in Charlotte, NC. I never say any patient of Cheney > > >> recover. They were generally all on Klonopin. I think this > > >> observation qualifies as some sort of experience along with many > > >> postings of horror stories from patients trying to get of Klonopin. > > >> > > >> a Carnes > > >> > > >> > > >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 She withdrew from klonopin years before her death in Sept 2007. Unfortunately, she had started back on a small dosage of klonopin shortly before she died due to extreme problems. She was still under Dr. Cheney's care and she was doing his stem cell protocol as well as taking other prescriptions from him. There are anecdotal tales of people dying while withdrawing from benzos. You'll probably find some on the benzo support site. Personally, I do not know of anyone who has died from benzo withdrawals, nor have I read any studies saying this has happened. If you do the water titration route, I don't think you'll have any problems. If you do experience withdrawal symptoms starting, you are in control, so you can slow the rate of withdrawal. For myself, I took a year to get off that last 1mg because I preferred pain free to fast. Other people might prefer to go faster and suffer a little. Best, Mike Dessin wrote: > > > Im sorry , did Helen get off Kolonopin before she passed, I > ask this becasue I wonder if her withdrawal had anything to do with > her passing, not going to change my mind though as far as titrating off. > KIndest Regards > Mike > > @... > <mailto:%40From>: > retractap@... <mailto:retractap%40bellsouth.netDate>: > Fri, 6 Jun 2008 22:30:58 -0400Subject: Re: Re: > Klonopin > > Katrina and a, I am one of the people for whom Dr. Cheney > prescribed klonopin. My own experience. was becoming tolerant to the > drug and suffering withdrawals while still on it, and being physically > dependent on it, and then going through horrible withdrawal symptoms > until I discovered Helen's water titration system. Finally, I took > more than a year to withdraw from klonopin. I don't give advice to > anyone about benzos any more, other than to be very CAREFUL about > them. Apparently some people can take them and get off them with no > problem. I was not one of those people.pjeanneus wrote:>> > Katrina, Look for brief replies with ***> > I do not think it's fair o > make such a declarative statement on> this list. particularly when I'm > sure you're aware that Klonopin has> been used successfully by many > CFS patients over the years to relieve> some of the most horrific > symptoms we have.> ***I do not know one cfids patient in 13 years who > has recovered in> any way on klonopin. Did it relieve symptoms? The > patients I knew on> it generally were zombies.>> >> > A different > matter is to post known side effects (common or rare),> or one's own > individual adverse reaction (mild or severe), as you did> re Lyrica. > That is very important information.> ***I am not free to repost emails > I have on file of other patients> who had severe withdrawal issues > with klonopin. I cannot post my own> experience in that regard as I > never was willing to risk myself and> take it.>> >> > Klonopin is a > top prescribed medication by Specialists in both CFS> and Dystonia, > which I also have. I have seen scores of people's> experiences for > many many years in both populations.> >> > The range of results is as > wide as the difference between night and> day. I also have personal > friends who have had the very best,> dramatic success, altering their > lives significnificantly in a> positive way, and who've the most > terrible nightmare experiences> (mainly in coming off of long term and > not-low doses).> ***This was one of my points - it does relieve > symptoms, but the> risks are very serious.>> >> > My own experience > with Klonopin is that many years ago, with less> knowledge about > dosing, I began on a " normal " dose. I experienced> sedation and > depression. Therefore after a brief trial, I left it for> years, never > planning to go near it again.> >> > Due to serious concerns about > progression of damage being reported> in CFS brains, and my horrible > sensory overload, (plus other patient'> positive results), I > re-visited Klonopin.> >> > By then I had learned I am so exquisitely > sensitive to drugs, that> at miniscule doses, I have rather immediate > results, whether pro or> con.> >> > At extremely low dose, (1/4 of a > .5, it instantly gave me a tool> for the horrible sensory overload. > And an added one for my horrific> muscle contractions.> >> > I also > have an improvement in cognitive and communicative skills.> ***The > point is - when you go off it your brain is NO BETTER and may> be > worse. That is a huge risk to relieve symptoms. Hey, I would take> it > too, if I had to. I am taking 75mg of Lyrica at night, but I am> fully > aware it will cure NOTHING and is protecting NOTHING. It is> causing > ongoing damage. Like you, I cannot tolerate the nerve> problems I now > have without it. These nerve problems in my case were> CAUSED by > quinolones and perhaps a viral infection 2 years ago that> was > unrelated to cfids or Lyme, as far as we can determine.>> >> > Becasue > of Dr. Cheney's use of it for Neuroprotection, I began with> the same > dose at night, moving to .5 every night. When I skip it, my> brain is > again over-firing the next day.> ****There is no documentation that it > protects anything. None. It> does help one get through the day or > night.>> >> > I use the 1/4 sometimes in the day time, and on ocassion > a little> more, or one other dose.> >> > I have never had any of the > side effects on the list you posted.> >> > Sometimes I would like to > try more becasue of brain damage concerns> and pain in my brain.> >> > > But I've remained at this very cautious dose for 3 reasons:> >> > A) > My previous depression response> >> > My MCS response to nearly > everything> >> > C) The horrific time that others have had in going > off of it.> >> > I prefer to use non-chemical interventions, so > whenever possible I> take those that have worked, in addition or try > new things. Blockers> of NMDA receptors are very helpful to me, and > other things.> >> > I always recommend that PWCs (or anyone) begin > pharmaceuticals at> far lower doses than normally prescribed. Both to > accurately monitor> and prevent negative effects, and becasue we often > do not need more> than minute doses to benefit.> >> > If I know > someone on Klonopin who has depression, I make sure to> tell them my > experience, and watch for that myself.> >> > a, over the years, > you have rather adamantly recommended some> pharmaceuticals that many > can not tolerate or which have caused> serious damage to some, even > your own self.> ***The only damage I have ever had was from quinolone > antibiotics> WHICH I NEVER RECOMMENDED TO ANYONE. What I have > recommended was the> old Roadback Foundation protocol of low dose, > pulsed minocyline and> Zithromax, low dose. The risk of these > antibiotics is minimal. I was> given quinolones by a doctor who > thought it was a good way to treat> Lyme disease. I have since > continuously and religiously warned all> other patients against ever > taking any quinolones for any reason.> There is no point in taking > such a dangerous antibiotic when others> are effective and safer.>> >> > > I believe it's crucial, especially in such a sensitive and ill> > population, to give a fully disclosed and balanced view of treatment> > results, pro and con, stressing that individuals vary widely.> >> > If > we cannot do that, we should stick simply to *our own*> experience, > and as fully disclosed as we are able/aware of.> ***Let me add that my > experience included 5 years of attending the> support group in > Charlotte, NC. I never say any patient of Cheney> recover. They were > generally all on Klonopin. I think this> observation qualifies as some > sort of experience along with many> postings of horror stories from > patients trying to get of Klonopin.>> a Carnes>> [Non-text > portions of this message have been removed] > > __________________________________________________________ > Search that pays you back! Introducing Live Search cashback. > http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyoubac\ k > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 My apologies to the group. I thought I had sent this privately to Mike. retractap@... wrote: > > She withdrew from klonopin years before her death in Sept 2007. > Unfortunately, she had started back on a small dosage of klonopin > shortly before she died due to extreme problems. She was still under > Dr. Cheney's care and she was doing his stem cell protocol as well as > taking other prescriptions from him. > > There are anecdotal tales of people dying while withdrawing from > benzos. You'll probably find some on the benzo support site. > Personally, I do not know of anyone who has died from benzo withdrawals, > nor have I read any studies saying this has happened. > > If you do the water titration route, I don't think you'll have any > problems. If you do experience withdrawal symptoms starting, you are in > control, so you can slow the rate of withdrawal. For myself, I took a > year to get off that last 1mg because I preferred pain free to fast. > Other people might prefer to go faster and suffer a little. > > Best, > > > Mike Dessin wrote: > > > > > > Im sorry , did Helen get off Kolonopin before she passed, I > > ask this becasue I wonder if her withdrawal had anything to do with > > her passing, not going to change my mind though as far as titrating off. > > KIndest Regards > > Mike > > > > @... > <mailto:%40From> > > <mailto:%40From>: > > retractap@... <mailto:retractap%40bellsouth.netDate> > <mailto:retractap%40bellsouth.netDate>: > > Fri, 6 Jun 2008 22:30:58 -0400Subject: Re: Re: > > Klonopin > > > > Katrina and a, I am one of the people for whom Dr. Cheney > > prescribed klonopin. My own experience. was becoming tolerant to the > > drug and suffering withdrawals while still on it, and being physically > > dependent on it, and then going through horrible withdrawal symptoms > > until I discovered Helen's water titration system. Finally, I took > > more than a year to withdraw from klonopin. I don't give advice to > > anyone about benzos any more, other than to be very CAREFUL about > > them. Apparently some people can take them and get off them with no > > problem. I was not one of those people.pjeanneus wrote:>> > > Katrina, Look for brief replies with ***> > I do not think it's fair o > > make such a declarative statement on> this list. particularly when I'm > > sure you're aware that Klonopin has> been used successfully by many > > CFS patients over the years to relieve> some of the most horrific > > symptoms we have.> ***I do not know one cfids patient in 13 years who > > has recovered in> any way on klonopin. Did it relieve symptoms? The > > patients I knew on> it generally were zombies.>> >> > A different > > matter is to post known side effects (common or rare),> or one's own > > individual adverse reaction (mild or severe), as you did> re Lyrica. > > That is very important information.> ***I am not free to repost emails > > I have on file of other patients> who had severe withdrawal issues > > with klonopin. I cannot post my own> experience in that regard as I > > never was willing to risk myself and> take it.>> >> > Klonopin is a > > top prescribed medication by Specialists in both CFS> and Dystonia, > > which I also have. I have seen scores of people's> experiences for > > many many years in both populations.> >> > The range of results is as > > wide as the difference between night and> day. I also have personal > > friends who have had the very best,> dramatic success, altering their > > lives significnificantly in a> positive way, and who've the most > > terrible nightmare experiences> (mainly in coming off of long term and > > not-low doses).> ***This was one of my points - it does relieve > > symptoms, but the> risks are very serious.>> >> > My own experience > > with Klonopin is that many years ago, with less> knowledge about > > dosing, I began on a " normal " dose. I experienced> sedation and > > depression. Therefore after a brief trial, I left it for> years, never > > planning to go near it again.> >> > Due to serious concerns about > > progression of damage being reported> in CFS brains, and my horrible > > sensory overload, (plus other patient'> positive results), I > > re-visited Klonopin.> >> > By then I had learned I am so exquisitely > > sensitive to drugs, that> at miniscule doses, I have rather immediate > > results, whether pro or> con.> >> > At extremely low dose, (1/4 of a > > .5, it instantly gave me a tool> for the horrible sensory overload. > > And an added one for my horrific> muscle contractions.> >> > I also > > have an improvement in cognitive and communicative skills.> ***The > > point is - when you go off it your brain is NO BETTER and may> be > > worse. That is a huge risk to relieve symptoms. Hey, I would take> it > > too, if I had to. I am taking 75mg of Lyrica at night, but I am> fully > > aware it will cure NOTHING and is protecting NOTHING. It is> causing > > ongoing damage. Like you, I cannot tolerate the nerve> problems I now > > have without it. These nerve problems in my case were> CAUSED by > > quinolones and perhaps a viral infection 2 years ago that> was > > unrelated to cfids or Lyme, as far as we can determine.>> >> > Becasue > > of Dr. Cheney's use of it for Neuroprotection, I began with> the same > > dose at night, moving to .5 every night. When I skip it, my> brain is > > again over-firing the next day.> ****There is no documentation that it > > protects anything. None. It> does help one get through the day or > > night.>> >> > I use the 1/4 sometimes in the day time, and on ocassion > > a little> more, or one other dose.> >> > I have never had any of the > > side effects on the list you posted.> >> > Sometimes I would like to > > try more becasue of brain damage concerns> and pain in my brain.> >> > > > But I've remained at this very cautious dose for 3 reasons:> >> > A) > > My previous depression response> >> > My MCS response to nearly > > everything> >> > C) The horrific time that others have had in going > > off of it.> >> > I prefer to use non-chemical interventions, so > > whenever possible I> take those that have worked, in addition or try > > new things. Blockers> of NMDA receptors are very helpful to me, and > > other things.> >> > I always recommend that PWCs (or anyone) begin > > pharmaceuticals at> far lower doses than normally prescribed. Both to > > accurately monitor> and prevent negative effects, and becasue we often > > do not need more> than minute doses to benefit.> >> > If I know > > someone on Klonopin who has depression, I make sure to> tell them my > > experience, and watch for that myself.> >> > a, over the years, > > you have rather adamantly recommended some> pharmaceuticals that many > > can not tolerate or which have caused> serious damage to some, even > > your own self.> ***The only damage I have ever had was from quinolone > > antibiotics> WHICH I NEVER RECOMMENDED TO ANYONE. What I have > > recommended was the> old Roadback Foundation protocol of low dose, > > pulsed minocyline and> Zithromax, low dose. The risk of these > > antibiotics is minimal. I was> given quinolones by a doctor who > > thought it was a good way to treat> Lyme disease. I have since > > continuously and religiously warned all> other patients against ever > > taking any quinolones for any reason.> There is no point in taking > > such a dangerous antibiotic when others> are effective and safer.>> >> > > > I believe it's crucial, especially in such a sensitive and ill> > > population, to give a fully disclosed and balanced view of treatment> > > results, pro and con, stressing that individuals vary widely.> >> > If > > we cannot do that, we should stick simply to *our own*> experience, > > and as fully disclosed as we are able/aware of.> ***Let me add that my > > experience included 5 years of attending the> support group in > > Charlotte, NC. I never say any patient of Cheney> recover. They were > > generally all on Klonopin. I think this> observation qualifies as some > > sort of experience along with many> postings of horror stories from > > patients trying to get of Klonopin.>> a Carnes>> [Non-text > > portions of this message have been removed] > > > > __________________________________________________________ > > Search that pays you back! Introducing Live Search cashback. > > > http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyoubac\ k > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck> > > > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck>> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 I am not sure where I stand on the klonopin issue, but ironically my new computer has a program that has been trying to clean out old email and a message I sent to myself 2 yrs ago was brought to my attention, I don't know where I got the interview with cheney or how old it is but this is verbatiom what I copied and sent myself from somehting I found on the web. If any people more familiar with cheney and klonopin want to comment please do and if the moderator feels its too long I humbly accept, it just struck me as so fitting to questions in these threads right now about k. begin excerpt: ** " On the other hand, trouble arises when someone who still has an injured brain tries to come off Klonopin. It's like a thyroid patient stopping their thyroid medication. Dr. Cheney warned, " All hell breaks loose " . However, it's not because the drug is addicting, and it's not withdrawal. The condition still exists, and the body lets you know it has a legitimate physical need for the drug. Cheney stated, " When a CFIDS patient who is still experiencing the underlying mechanisms of brain injury goes off Klonopin, there is a burst of excess neural firing and cell death. That's the havoc we hear about that is mistakenly called withdrawal. " whole article: Many CFIDS specialists prescribe the drug Klonopin. In the October 1999 issue of The Fibromyalgia Network, nine CFS/FM specialists summarized their most effective treatments, and six included Klonopin. Interestingly, the three who did not are primarily FM specialists. Dr. Cheney prescribes Klonopin to address a condition associated with CFIDS called " excitatory neurotoxicity. " To explain this condition to patients, he draws a line with " seizure " on the far left and " coma " on the far right. A big dot in the middle represents where healthy people are when awake. A dot somewhat to the right of the middle indicates where healthy people are when asleep – slightly shifted toward coma. He highlights in red the left portion of the line, from seizure to the middle, and labels it " Neurotoxic State " (damaging to the brain). He highlights in blue the right portion of the line, from coma to the middle, and labels it " Healing State. " In CFIDS, an ongoing injury to the brain shifts patients toward seizure. A dot to the left of the middle, marked " injury, " represents the position of CFIDS patients. This puts us in the red " Neurotoxic " zone. When we shift toward seizure, we often experience " sensory overload. " It's as if our brain's " radar " is too sensitive. Our neurons (nerve cells) are sensing stimuli and firing when they should not. This causes amplification of sensory input. Light, noise, motion and pain are all magnified. At the beginning of their illness, many patients report feeling exhausted, yet also strangely " wired. " The " wired " feeling is the slight shift towards seizure that occurs as a result of the excitatory neurotoxicity. Cheney frequently uses the term " threshold potential " when discussing excitatory neurotoxicity. (Think of the threshold - bottom - of a doorway. The lower it is, the more accessible it is. When it is at floor level, everything can enter. When it is raised, access is restricted to taller people. If it is too high, no one can enter.) Threshold potential refers to how much stimulus it takes to make neurons fire. If the threshold potential is too low, even slight stimulation is " allowed to enter " and is detected by the neurons. This causes the neurons to fire, resulting in sensory overload. If the threshold is dropped to nothing, all stimuli get through and the neurons fire continuously, resulting in a seizure. If the threshold is raised, only stronger stimuli can make neurons fire. A healthy person's threshold potential naturally rises at bedtime, promoting sleep. If the threshold potential is too high, you feel drugged or drowsy. If the threshold potential is raised extremely high, coma results. Two receptors in the brain, NMDA and GABA, determine the threshold potential. During the waking hours of a healthy person, NMDA and GABA should be equally active. This balances the person in the middle of the seizure/coma continuum. NMDA stimulates, and GABA inhibits. If NMDA increases, one moves toward seizure. If GABA increases, one moves toward coma. In CFIDS, NMDA is more activated than GABA, lowering the threshold potential. This causes neurons to fire with very little stimulation, resulting in sensory overload. This condition of excitatory neurotoxicity is dangerous. Dr. Cheney emphasizes that in an attempt to protect itself, the body will eventually kill neurons that fire excessively. He states that brain cell loss can result if this condition isn't addressed. How can the brain be protected against excitatory neurotoxicity? Klonopin. This long acting benzodiazepine has been Dr. Cheney's most effective drug for CFIDS over the years. He believes that Klonopin and the supplement magnesium may be two of the most important treatments for CFIDS patients because of their neuroprotective qualities. He recommends two or more 0.5 mg tablets of Klonopin at night. Paradoxically, very small doses (usually a quarter to a half a tablet) in the morning and mid-afternoon improve cognitive function and energy. If the daytime dose is low enough, you'll experience greater clarity and think better. If the daytime dose is too high, you'll become drowsy. Adjust your dose for maximum benefit, taking as much as possible without drowsiness. Adjust the morning dose first, then take the same amount mid-afternoon if needed, then take three to four times the morning dose at bedtime. Dr. Cheney recommends doubling the dose during severe relapses. Dr. Cheney most frequently prescribes the combination of Klonopin and Doxepin, along with the supplement " Magnesium Glycinate Forte. " Magnesium Glycinate alone is a good choice for the more budget minded(www.ImmuneSupport.com sells it as " Magnesium Plus " .) A common dosage of magnesium is 200 mgs at bedtime. Too much magnesium can cause diarrhea, though glycinate is usually the best tolerated form. Cheney prescribes Doxepin in the form of a commercial elixir (10mg/ml). At low doses, this tricyclic antidepressant acts as a very potent antihistamine and immune modulator. Doxepin acts synergistically with Klonopin to assist sleep, and may improve pain. Patients tend to be very sensitive to Doxepin, which can cause morning fog and fatigue if the dose is too high (5 to 10 mg or higher). He recommends starting at two drops a night and gradually increasing the dose until " morning fog " becomes a problem. Most patients can't tolerate more than half a cc. On a handout entitled " Neuroprotection via Threshold Potentials, " Cheney lists six substances that can protect the brain. Under the category " NMDA Blockers " Cheney lists: 1. Parenteral magnesium and taurine (intramuscular injections of magnesium and taurine, usually given with procaine) 2. Histamine blockers (Doxepin Elixir) Under the category " GABA Agonists " (increases GABA) Cheney lists: 3. Klonopin 4. Neurontin 5. Kava Kava 6. Valerian Root Klonopin is taken " day and night " ; Neurontin " night, or day and night " ; kava kava " daytime only " ; and valerian " nighttime only. " The first four are by prescription, the last two are herbs. In my limited experience, only certain patients are put on magnesium/taurine injections, and then only for a limited period before switching to oral supplements. Many myths abound concerning Klonopin. When asked about these myths, Dr. Cheney shared the following information. MYTH NUMBER ONE: THE GENERIC IS JUST AS GOOD. When the generic Clonazepam came on the market, many patients switched to it because it was less expensive than Klonopin. Cheney then began hearing that most patients had to take more Clonazepam to get the same effect. Generics aren't exactly identical to the original products, and with most drugs the slight variations don't matter. However, most CFIDS patients can tell the difference between Klonopin and its generic form, Clonazepam. Most find Klonopin to be more effective. MYTH NUMBER TWO: KLONOPIN IS ADDICTIVE. Dr. Cheney was adamant that Klonopin is not addictive. In treating thousands of patients, he has never seen a patient become addicted to Klonopin. He reviewed the definition of addiction, stating that it involves: (1) psychosocial disruption, (2) accelerated use, (3) inappropriate use, and (4) drug seeking behavior. Dr. Cheney said a case might be made that Klonopin is habituating. It's true that it can't be stopped suddenly. You must taper off of it gradually. However, he was cautious about even calling it habituating. The process of tapering off a drug is not the same thing as withdrawal, a term that implies addiction. Dr. Cheney said to keep in mind that Klonopin is given for a physiological problem – excitatory neurotoxicity. It's prescribed to adjust the threshold potential: to keep neurons from firing inappropriately and being destroyed. He stressed that Klonopin should never be given unless you intend to raise the threshold potential. He stated, " Problems arise when you begin to use benzodiazapines for reasons other than threshold manipulation. " However, CFIDS patients have a " threshold potential aberration " and need Klonopin (or something similar) to avoid brain injury. Dr. Cheney has never seen a recovered patient have difficulty coming off Klonopin. He stated, " When you no longer need the drug, coming off it is very easy. " On the other hand, trouble arises when someone who still has an injured brain tries to come off Klonopin. It's like a thyroid patient stopping their thyroid medication. Dr. Cheney warned, " All hell breaks loose " . However, it's not because the drug is addicting, and it's not withdrawal. The condition still exists, and the body lets you know it has a legitimate physical need for the drug. Cheney stated, " When a CFIDS patient who is still experiencing the underlying mechanisms of brain injury goes off Klonopin, there is a burst of excess neural firing and cell death. That's the havoc we hear about that is mistakenly called withdrawal. " MYTH NUMBER THREE: KLONOPIN DISRUPTS STAGE 4 SLEEP. Dr. Cheney said that he honestly doesn't understand this concern. He believes Klonopin might disrupt the sleep of people who take it for conditions other than the threshold potential aberration found in CFIDS. He also acknowledged that if you are looking just for drugs to facilitate sleep, Klonopin is certainly not the first one to come to mind, nor should it be used to induce sleep in " ordinary " patients. It's not a sleep drug per se. However, a large part of the sleep disorder of CFIDS is excitatory neurotoxicity and the resulting shift toward seizure. If you treat this condition with Klonopin, then you have treated a large part of the sleep disorder in CFIDS. Most importantly, he said he simply does not see stage 4 sleep disruption in his patients on Klonopin. Towards the end of this discussion on Klonopin, Cheney smiled, and remarked, " But suppose I'm wrong about the brain injury and the threshold potential aberration and the shift toward seizure? What if I'm wrong about your need for Klonopin? I'm absolutely sure I'm right, but what's the worst case scenario? Do you know what long-term studies on Klonopin have shown? Reduced incidence of Alzheimer's Disease. Alzheimer's Disease is a complicated and convoluted way of knocking out your neurons, and Klonopin protects your neurons. Now it's believed that Klonopin didn't actually stop Alzheimer's. It just delayed its onset so long that everyone died of something else before they ever got it - which is to say you won't get Alzheimer's. You'll die of something else first. " The last question Cheney addressed concerned the dose: what happens if the dose is too high? He said the only down side was that if you took a little too much (we are not talking overdose here) it would shift you toward coma on the continuum. It would shut your brain down to some degree, and thus impact your ability to function. This is inconvenient, but it's not harmful. In fact, it shifts you into the " healing state " on the continuum. You may feel like a zombie, but your brain is protected and your neurons are not getting fried. However, not being able to function isn't an option for most of us, so we need to find the maximum dose that doesn't make us drowsy. Dr. Cheney emphasized that Klonopin, Doxepin, and magnesium are very, very good at protecting the brain from cell death due to excess firing. However, they can't stop the underlying mechanisms of CFIDS that are injuring the brain in the first place. Though it can't stop the underlying mechanisms causing the injury, Klonopin can protect your brain and keep your neurons from being destroyed. Then, as Cheney put it, " When you come out on the other side of this, you'll have more of your brain left. " end excerpt >> > > > Katrina, Look for brief replies with ***> > I do not think it's fair o > > > make such a declarative statement on> this list. particularly when I'm > > > sure you're aware that Klonopin has> been used successfully by many > > > CFS patients over the years to relieve> some of the most horrific > > > symptoms we have.> ***I do not know one cfids patient in 13 years who > > > has recovered in> any way on klonopin. Did it relieve symptoms? The > > > patients I knew on> it generally were zombies.>> >> > A different > > > matter is to post known side effects (common or rare),> or one's own > > > individual adverse reaction (mild or severe), as you did> re Lyrica. > > > That is very important information.> ***I am not free to repost emails > > > I have on file of other patients> who had severe withdrawal issues > > > with klonopin. I cannot post my own> experience in that regard as I > > > never was willing to risk myself and> take it.>> >> > Klonopin is a > > > top prescribed medication by Specialists in both CFS> and Dystonia, > > > which I also have. I have seen scores of people's> experiences for > > > many many years in both populations.> >> > The range of results is as > > > wide as the difference between night and> day. I also have personal > > > friends who have had the very best,> dramatic success, altering their > > > lives significnificantly in a> positive way, and who've the most > > > terrible nightmare experiences> (mainly in coming off of long term and > > > not-low doses).> ***This was one of my points - it does relieve > > > symptoms, but the> risks are very serious.>> >> > My own experience > > > with Klonopin is that many years ago, with less> knowledge about > > > dosing, I began on a " normal " dose. I experienced> sedation and > > > depression. Therefore after a brief trial, I left it for> years, never > > > planning to go near it again.> >> > Due to serious concerns about > > > progression of damage being reported> in CFS brains, and my horrible > > > sensory overload, (plus other patient'> positive results), I > > > re-visited Klonopin.> >> > By then I had learned I am so exquisitely > > > sensitive to drugs, that> at miniscule doses, I have rather immediate > > > results, whether pro or> con.> >> > At extremely low dose, (1/4 of a > > > .5, it instantly gave me a tool> for the horrible sensory overload. > > > And an added one for my horrific> muscle contractions.> >> > I also > > > have an improvement in cognitive and communicative skills.> ***The > > > point is - when you go off it your brain is NO BETTER and may> be > > > worse. That is a huge risk to relieve symptoms. Hey, I would take> it > > > too, if I had to. I am taking 75mg of Lyrica at night, but I am> fully > > > aware it will cure NOTHING and is protecting NOTHING. It is> causing > > > ongoing damage. Like you, I cannot tolerate the nerve> problems I now > > > have without it. These nerve problems in my case were> CAUSED by > > > quinolones and perhaps a viral infection 2 years ago that> was > > > unrelated to cfids or Lyme, as far as we can determine.>> >> > Becasue > > > of Dr. Cheney's use of it for Neuroprotection, I began with> the same > > > dose at night, moving to .5 every night. When I skip it, my> brain is > > > again over-firing the next day.> ****There is no documentation that it > > > protects anything. None. It> does help one get through the day or > > > night.>> >> > I use the 1/4 sometimes in the day time, and on ocassion > > > a little> more, or one other dose.> >> > I have never had any of the > > > side effects on the list you posted.> >> > Sometimes I would like to > > > try more becasue of brain damage concerns> and pain in my brain.> >> > > > > But I've remained at this very cautious dose for 3 reasons:> >> > A) > > > My previous depression response> >> > My MCS response to nearly > > > everything> >> > C) The horrific time that others have had in going > > > off of it.> >> > I prefer to use non-chemical interventions, so > > > whenever possible I> take those that have worked, in addition or try > > > new things. Blockers> of NMDA receptors are very helpful to me, and > > > other things.> >> > I always recommend that PWCs (or anyone) begin > > > pharmaceuticals at> far lower doses than normally prescribed. Both to > > > accurately monitor> and prevent negative effects, and becasue we often > > > do not need more> than minute doses to benefit.> >> > If I know > > > someone on Klonopin who has depression, I make sure to> tell them my > > > experience, and watch for that myself.> >> > a, over the years, > > > you have rather adamantly recommended some> pharmaceuticals that many > > > can not tolerate or which have caused> serious damage to some, even > > > your own self.> ***The only damage I have ever had was from quinolone > > > antibiotics> WHICH I NEVER RECOMMENDED TO ANYONE. What I have > > > recommended was the> old Roadback Foundation protocol of low dose, > > > pulsed minocyline and> Zithromax, low dose. The risk of these > > > antibiotics is minimal. I was> given quinolones by a doctor who > > > thought it was a good way to treat> Lyme disease. I have since > > > continuously and religiously warned all> other patients against ever > > > taking any quinolones for any reason.> There is no point in taking > > > such a dangerous antibiotic when others> are effective and safer.>> >> > > > > I believe it's crucial, especially in such a sensitive and ill> > > > population, to give a fully disclosed and balanced view of treatment> > > > results, pro and con, stressing that individuals vary widely.> >> > If > > > we cannot do that, we should stick simply to *our own*> experience, > > > and as fully disclosed as we are able/aware of.> ***Let me add that my > > > experience included 5 years of attending the> support group in > > > Charlotte, NC. I never say any patient of Cheney> recover. They were > > > generally all on Klonopin. I think this> observation qualifies as some > > > sort of experience along with many> postings of horror stories from > > > patients trying to get of Klonopin.>> a Carnes>> [Non-text > > > portions of this message have been removed] > > > > > > __________________________________________________________ > > > Search that pays you back! Introducing Live Search cashback. > > > > > http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyoubac\ k > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck> > > > > > > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck>> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 , In a post elsewhere, in the days before Helen died, she mentioned having switched from Lyrica to Neurontin, and spoke of Klonopin only in the past tense. I will write to you by email. TC, Katrina >> > > Katrina, Look for brief replies with ***> > I do not think it's fair o > > make such a declarative statement on> this list. particularly when I'm > > sure you're aware that Klonopin has> been used successfully by many > > CFS patients over the years to relieve> some of the most horrific > > symptoms we have.> ***I do not know one cfids patient in 13 years who > > has recovered in> any way on klonopin. Did it relieve symptoms? The > > patients I knew on> it generally were zombies.>> >> > A different > > matter is to post known side effects (common or rare),> or one's own > > individual adverse reaction (mild or severe), as you did> re Lyrica. > > That is very important information.> ***I am not free to repost emails > > I have on file of other patients> who had severe withdrawal issues > > with klonopin. I cannot post my own> experience in that regard as I > > never was willing to risk myself and> take it.>> >> > Klonopin is a > > top prescribed medication by Specialists in both CFS> and Dystonia, > > which I also have. I have seen scores of people's> experiences for > > many many years in both populations.> >> > The range of results is as > > wide as the difference between night and> day. I also have personal > > friends who have had the very best,> dramatic success, altering their > > lives significnificantly in a> positive way, and who've the most > > terrible nightmare experiences> (mainly in coming off of long term and > > not-low doses).> ***This was one of my points - it does relieve > > symptoms, but the> risks are very serious.>> >> > My own experience > > with Klonopin is that many years ago, with less> knowledge about > > dosing, I began on a " normal " dose. I experienced> sedation and > > depression. Therefore after a brief trial, I left it for> years, never > > planning to go near it again.> >> > Due to serious concerns about > > progression of damage being reported> in CFS brains, and my horrible > > sensory overload, (plus other patient'> positive results), I > > re-visited Klonopin.> >> > By then I had learned I am so exquisitely > > sensitive to drugs, that> at miniscule doses, I have rather immediate > > results, whether pro or> con.> >> > At extremely low dose, (1/4 of a > > .5, it instantly gave me a tool> for the horrible sensory overload. > > And an added one for my horrific> muscle contractions.> >> > I also > > have an improvement in cognitive and communicative skills.> ***The > > point is - when you go off it your brain is NO BETTER and may> be > > worse. That is a huge risk to relieve symptoms. Hey, I would take> it > > too, if I had to. I am taking 75mg of Lyrica at night, but I am> fully > > aware it will cure NOTHING and is protecting NOTHING. It is> causing > > ongoing damage. Like you, I cannot tolerate the nerve> problems I now > > have without it. These nerve problems in my case were> CAUSED by > > quinolones and perhaps a viral infection 2 years ago that> was > > unrelated to cfids or Lyme, as far as we can determine.>> >> > Becasue > > of Dr. Cheney's use of it for Neuroprotection, I began with> the same > > dose at night, moving to .5 every night. When I skip it, my> brain is > > again over-firing the next day.> ****There is no documentation that it > > protects anything. None. It> does help one get through the day or > > night.>> >> > I use the 1/4 sometimes in the day time, and on ocassion > > a little> more, or one other dose.> >> > I have never had any of the > > side effects on the list you posted.> >> > Sometimes I would like to > > try more becasue of brain damage concerns> and pain in my brain.> >> > > > But I've remained at this very cautious dose for 3 reasons:> >> > A) > > My previous depression response> >> > My MCS response to nearly > > everything> >> > C) The horrific time that others have had in going > > off of it.> >> > I prefer to use non-chemical interventions, so > > whenever possible I> take those that have worked, in addition or try > > new things. Blockers> of NMDA receptors are very helpful to me, and > > other things.> >> > I always recommend that PWCs (or anyone) begin > > pharmaceuticals at> far lower doses than normally prescribed. Both to > > accurately monitor> and prevent negative effects, and becasue we often > > do not need more> than minute doses to benefit.> >> > If I know > > someone on Klonopin who has depression, I make sure to> tell them my > > experience, and watch for that myself.> >> > a, over the years, > > you have rather adamantly recommended some> pharmaceuticals that many > > can not tolerate or which have caused> serious damage to some, even > > your own self.> ***The only damage I have ever had was from quinolone > > antibiotics> WHICH I NEVER RECOMMENDED TO ANYONE. What I have > > recommended was the> old Roadback Foundation protocol of low dose, > > pulsed minocyline and> Zithromax, low dose. The risk of these > > antibiotics is minimal. I was> given quinolones by a doctor who > > thought it was a good way to treat> Lyme disease. I have since > > continuously and religiously warned all> other patients against ever > > taking any quinolones for any reason.> There is no point in taking > > such a dangerous antibiotic when others> are effective and safer.>> >> > > > I believe it's crucial, especially in such a sensitive and ill> > > population, to give a fully disclosed and balanced view of treatment> > > results, pro and con, stressing that individuals vary widely.> >> > If > > we cannot do that, we should stick simply to *our own*> experience, > > and as fully disclosed as we are able/aware of.> ***Let me add that my > > experience included 5 years of attending the> support group in > > Charlotte, NC. I never say any patient of Cheney> recover. They were > > generally all on Klonopin. I think this> observation qualifies as some > > sort of experience along with many> postings of horror stories from > > patients trying to get of Klonopin.>> a Carnes>> [Non-text > > portions of this message have been removed] > > > > __________________________________________________________ > > Search that pays you back! Introducing Live Search cashback. > > http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyoubac\ k > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 As I said before, I was on klonopin, prescribed by several doctors including Dr. Cheney, for more than 16 years. I began to have terrible problems with it, being unable to sleep, muscle spasms, headaches, and other problems, and decided to go off it. It took me two years to get completely off. I have been off klonopin for more than a year now and I did not experience the dire consequences to which Dr. Cheney refers. In addition, I am now able to sleep without medications. I do not make any attempt to generalize my experiences into advice for others. I am simply stating my experience. idarchetype2000 wrote: > > I am not sure where I stand on the klonopin issue, but ironically my > new computer has a program that has been trying to clean out old email > and a message I sent to myself 2 yrs ago was brought to my attention, > I don't know where I got the interview with cheney or how old it is > but this is verbatiom what I copied and sent myself from somehting I > found on the web. If any people more familiar with cheney and klonopin > want to comment please do and if the moderator feels its too long I > humbly accept, it just struck me as so fitting to questions in these > threads right now about k. > begin excerpt: > > ** " On the other hand, trouble arises when someone who still has an > injured > brain tries to come off Klonopin. It's like a thyroid patient stopping > their > thyroid medication. Dr. Cheney warned, " All hell breaks loose " . However, > it's not because the drug is addicting, and it's not withdrawal. The > condition still exists, and the body lets you know it has a legitimate > physical need for the drug. Cheney stated, " When a CFIDS patient who is > still experiencing the underlying mechanisms of brain injury goes off > Klonopin, there is a burst of excess neural firing and cell death. That's > the havoc we hear about that is mistakenly called withdrawal. " > > whole article: > Many CFIDS specialists prescribe the drug Klonopin. In the October 1999 > issue of The Fibromyalgia Network, nine CFS/FM specialists summarized > their > most effective treatments, and six included Klonopin. Interestingly, the > three who did not are primarily FM specialists. > > Dr. Cheney prescribes Klonopin to address a condition associated with > CFIDS > called " excitatory neurotoxicity. " To explain this condition to > patients, he > draws a line with " seizure " on the far left and " coma " on the far > right. A > big dot in the middle represents where healthy people are when awake. > A dot > somewhat to the right of the middle indicates where healthy people are > when > asleep -- slightly shifted toward coma. He highlights in red the left > portion > of the line, from seizure to the middle, and labels it " Neurotoxic State " > (damaging to the brain). He highlights in blue the right portion of the > line, from coma to the middle, and labels it " Healing State. " > > In CFIDS, an ongoing injury to the brain shifts patients toward > seizure. A > dot to the left of the middle, marked " injury, " represents the > position of > CFIDS patients. This puts us in the red " Neurotoxic " zone. When we shift > toward seizure, we often experience " sensory overload. " It's as if our > brain's " radar " is too sensitive. Our neurons (nerve cells) are sensing > stimuli and firing when they should not. This causes amplification of > sensory input. Light, noise, motion and pain are all magnified. At the > beginning of their illness, many patients report feeling exhausted, > yet also > strangely " wired. " The " wired " feeling is the slight shift towards > seizure > that occurs as a result of the excitatory neurotoxicity. > > Cheney frequently uses the term " threshold potential " when discussing > excitatory neurotoxicity. (Think of the threshold - bottom - of a > doorway. > The lower it is, the more accessible it is. When it is at floor level, > everything can enter. When it is raised, access is restricted to taller > people. If it is too high, no one can enter.) Threshold potential > refers to > how much stimulus it takes to make neurons fire. If the threshold > potential > is too low, even slight stimulation is " allowed to enter " and is > detected by > the neurons. This causes the neurons to fire, resulting in sensory > overload. > If the threshold is dropped to nothing, all stimuli get through and the > neurons fire continuously, resulting in a seizure. If the threshold is > raised, only stronger stimuli can make neurons fire. A healthy person's > threshold potential naturally rises at bedtime, promoting sleep. If the > threshold potential is too high, you feel drugged or drowsy. If the > threshold potential is raised extremely high, coma results. > > Two receptors in the brain, NMDA and GABA, determine the threshold > potential. During the waking hours of a healthy person, NMDA and GABA > should > be equally active. This balances the person in the middle of the > seizure/coma continuum. NMDA stimulates, and GABA inhibits. If NMDA > increases, one moves toward seizure. If GABA increases, one moves toward > coma. > > In CFIDS, NMDA is more activated than GABA, lowering the threshold > potential. This causes neurons to fire with very little stimulation, > resulting in sensory overload. This condition of excitatory > neurotoxicity is > dangerous. Dr. Cheney emphasizes that in an attempt to protect itself, > the > body will eventually kill neurons that fire excessively. He states that > brain cell loss can result if this condition isn't addressed. > > How can the brain be protected against excitatory neurotoxicity? > Klonopin. > This long acting benzodiazepine has been Dr. Cheney's most effective drug > for CFIDS over the years. He believes that Klonopin and the supplement > magnesium may be two of the most important treatments for CFIDS patients > because of their neuroprotective qualities. He recommends two or more > 0.5 mg > tablets of Klonopin at night. Paradoxically, very small doses (usually a > quarter to a half a tablet) in the morning and mid-afternoon improve > cognitive function and energy. If the daytime dose is low enough, you'll > experience greater clarity and think better. If the daytime dose is too > high, you'll become drowsy. Adjust your dose for maximum benefit, > taking as > much as possible without drowsiness. Adjust the morning dose first, then > take the same amount mid-afternoon if needed, then take three to four > times > the morning dose at bedtime. Dr. Cheney recommends doubling the dose > during > severe relapses. > > Dr. Cheney most frequently prescribes the combination of Klonopin and > Doxepin, along with the supplement " Magnesium Glycinate Forte. " Magnesium > Glycinate alone is a good choice for the more budget > minded(www.ImmuneSupport.com sells it as " Magnesium Plus " .) A common > dosage > of magnesium is 200 mgs at bedtime. Too much magnesium can cause > diarrhea, > though glycinate is usually the best tolerated form. > > Cheney prescribes Doxepin in the form of a commercial elixir > (10mg/ml). At > low doses, this tricyclic antidepressant acts as a very potent > antihistamine > and immune modulator. Doxepin acts synergistically with Klonopin to > assist > sleep, and may improve pain. Patients tend to be very sensitive to > Doxepin, > which can cause morning fog and fatigue if the dose is too high (5 to > 10 mg > or higher). He recommends starting at two drops a night and gradually > increasing the dose until " morning fog " becomes a problem. Most patients > can't tolerate more than half a cc. > > On a handout entitled " Neuroprotection via Threshold Potentials, " Cheney > lists six substances that can protect the brain. Under the category " NMDA > Blockers " Cheney lists: > > 1. Parenteral magnesium and taurine (intramuscular injections of > magnesium > and taurine, usually given with procaine) 2. Histamine blockers (Doxepin > Elixir) Under the category " GABA Agonists " (increases GABA) Cheney > lists: 3. > Klonopin 4. Neurontin 5. Kava Kava 6. Valerian Root > > Klonopin is taken " day and night " ; Neurontin " night, or day and > night " ; kava > kava " daytime only " ; and valerian " nighttime only. " The first four are by > prescription, the last two are herbs. In my limited experience, only > certain > patients are put on magnesium/taurine injections, and then only for a > limited period before switching to oral supplements. > > Many myths abound concerning Klonopin. When asked about these myths, Dr. > Cheney shared the following information. > > MYTH NUMBER ONE: THE GENERIC IS JUST AS GOOD. > > When the generic Clonazepam came on the market, many patients switched > to it > because it was less expensive than Klonopin. Cheney then began hearing > that > most patients had to take more Clonazepam to get the same effect. > Generics > aren't exactly identical to the original products, and with most drugs > the > slight variations don't matter. However, most CFIDS patients can tell the > difference between Klonopin and its generic form, Clonazepam. Most find > Klonopin to be more effective. > > MYTH NUMBER TWO: KLONOPIN IS ADDICTIVE. > > Dr. Cheney was adamant that Klonopin is not addictive. In treating > thousands > of patients, he has never seen a patient become addicted to Klonopin. He > reviewed the definition of addiction, stating that it involves: (1) > psychosocial disruption, (2) accelerated use, (3) inappropriate use, > and (4) > drug seeking behavior. > > Dr. Cheney said a case might be made that Klonopin is habituating. > It's true > that it can't be stopped suddenly. You must taper off of it gradually. > However, he was cautious about even calling it habituating. The > process of > tapering off a drug is not the same thing as withdrawal, a term that > implies > addiction. > > Dr. Cheney said to keep in mind that Klonopin is given for a > physiological > problem -- excitatory neurotoxicity. It's prescribed to adjust the > threshold > potential: to keep neurons from firing inappropriately and being > destroyed. > He stressed that Klonopin should never be given unless you intend to > raise > the threshold potential. He stated, " Problems arise when you begin to use > benzodiazapines for reasons other than threshold manipulation. " However, > CFIDS patients have a " threshold potential aberration " and need > Klonopin (or > something similar) to avoid brain injury. Dr. Cheney has never seen a > recovered patient have difficulty coming off Klonopin. He stated, > " When you > no longer need the drug, coming off it is very easy. " > > On the other hand, trouble arises when someone who still has an injured > brain tries to come off Klonopin. It's like a thyroid patient stopping > their > thyroid medication. Dr. Cheney warned, " All hell breaks loose " . However, > it's not because the drug is addicting, and it's not withdrawal. The > condition still exists, and the body lets you know it has a legitimate > physical need for the drug. Cheney stated, " When a CFIDS patient who is > still experiencing the underlying mechanisms of brain injury goes off > Klonopin, there is a burst of excess neural firing and cell death. That's > the havoc we hear about that is mistakenly called withdrawal. " > > MYTH NUMBER THREE: KLONOPIN DISRUPTS STAGE 4 SLEEP. > > Dr. Cheney said that he honestly doesn't understand this concern. He > believes Klonopin might disrupt the sleep of people who take it for > conditions other than the threshold potential aberration found in > CFIDS. He > also acknowledged that if you are looking just for drugs to facilitate > sleep, Klonopin is certainly not the first one to come to mind, nor > should > it be used to induce sleep in " ordinary " patients. It's not a sleep > drug per > se. However, a large part of the sleep disorder of CFIDS is excitatory > neurotoxicity and the resulting shift toward seizure. If you treat this > condition with Klonopin, then you have treated a large part of the sleep > disorder in CFIDS. Most importantly, he said he simply does not see > stage 4 > sleep disruption in his patients on Klonopin. > > Towards the end of this discussion on Klonopin, Cheney smiled, and > remarked, > " But suppose I'm wrong about the brain injury and the threshold potential > aberration and the shift toward seizure? What if I'm wrong about your > need > for Klonopin? I'm absolutely sure I'm right, but what's the worst case > scenario? Do you know what long-term studies on Klonopin have shown? > Reduced > incidence of Alzheimer's Disease. Alzheimer's Disease is a complicated > and > convoluted way of knocking out your neurons, and Klonopin protects your > neurons. Now it's believed that Klonopin didn't actually stop > Alzheimer's. > It just delayed its onset so long that everyone died of something else > before they ever got it - which is to say you won't get Alzheimer's. > You'll > die of something else first. " > > The last question Cheney addressed concerned the dose: what happens if > the > dose is too high? He said the only down side was that if you took a > little > too much (we are not talking overdose here) it would shift you toward > coma > on the continuum. It would shut your brain down to some degree, and thus > impact your ability to function. This is inconvenient, but it's not > harmful. > In fact, it shifts you into the " healing state " on the continuum. You may > feel like a zombie, but your brain is protected and your neurons are not > getting fried. However, not being able to function isn't an option for > most > of us, so we need to find the maximum dose that doesn't make us drowsy. > > Dr. Cheney emphasized that Klonopin, Doxepin, and magnesium are very, > very > good at protecting the brain from cell death due to excess firing. > However, > they can't stop the underlying mechanisms of CFIDS that are injuring the > brain in the first place. > > Though it can't stop the underlying mechanisms causing the injury, > Klonopin > can protect your brain and keep your neurons from being destroyed. > Then, as > Cheney put it, " When you come out on the other side of this, you'll have > more of your brain left. " > > end excerpt > > >> > > > > Katrina, Look for brief replies with ***> > I do not think it's > fair o > > > > make such a declarative statement on> this list. particularly > when I'm > > > > sure you're aware that Klonopin has> been used successfully by many > > > > CFS patients over the years to relieve> some of the most horrific > > > > symptoms we have.> ***I do not know one cfids patient in 13 > years who > > > > has recovered in> any way on klonopin. Did it relieve symptoms? The > > > > patients I knew on> it generally were zombies.>> >> > A different > > > > matter is to post known side effects (common or rare),> or one's own > > > > individual adverse reaction (mild or severe), as you did> re Lyrica. > > > > That is very important information.> ***I am not free to repost > emails > > > > I have on file of other patients> who had severe withdrawal issues > > > > with klonopin. I cannot post my own> experience in that regard as I > > > > never was willing to risk myself and> take it.>> >> > Klonopin is a > > > > top prescribed medication by Specialists in both CFS> and Dystonia, > > > > which I also have. I have seen scores of people's> experiences for > > > > many many years in both populations.> >> > The range of results > is as > > > > wide as the difference between night and> day. I also have personal > > > > friends who have had the very best,> dramatic success, altering > their > > > > lives significnificantly in a> positive way, and who've the most > > > > terrible nightmare experiences> (mainly in coming off of long > term and > > > > not-low doses).> ***This was one of my points - it does relieve > > > > symptoms, but the> risks are very serious.>> >> > My own experience > > > > with Klonopin is that many years ago, with less> knowledge about > > > > dosing, I began on a " normal " dose. I experienced> sedation and > > > > depression. Therefore after a brief trial, I left it for> years, > never > > > > planning to go near it again.> >> > Due to serious concerns about > > > > progression of damage being reported> in CFS brains, and my horrible > > > > sensory overload, (plus other patient'> positive results), I > > > > re-visited Klonopin.> >> > By then I had learned I am so exquisitely > > > > sensitive to drugs, that> at miniscule doses, I have rather > immediate > > > > results, whether pro or> con.> >> > At extremely low dose, (1/4 of a > > > > .5, it instantly gave me a tool> for the horrible sensory overload. > > > > And an added one for my horrific> muscle contractions.> >> > I also > > > > have an improvement in cognitive and communicative skills.> ***The > > > > point is - when you go off it your brain is NO BETTER and may> be > > > > worse. That is a huge risk to relieve symptoms. Hey, I would > take> it > > > > too, if I had to. I am taking 75mg of Lyrica at night, but I am> > fully > > > > aware it will cure NOTHING and is protecting NOTHING. It is> causing > > > > ongoing damage. Like you, I cannot tolerate the nerve> problems > I now > > > > have without it. These nerve problems in my case were> CAUSED by > > > > quinolones and perhaps a viral infection 2 years ago that> was > > > > unrelated to cfids or Lyme, as far as we can determine.>> >> > > Becasue > > > > of Dr. Cheney's use of it for Neuroprotection, I began with> the > same > > > > dose at night, moving to .5 every night. When I skip it, my> > brain is > > > > again over-firing the next day.> ****There is no documentation > that it > > > > protects anything. None. It> does help one get through the day or > > > > night.>> >> > I use the 1/4 sometimes in the day time, and on > ocassion > > > > a little> more, or one other dose.> >> > I have never had any of the > > > > side effects on the list you posted.> >> > Sometimes I would like to > > > > try more becasue of brain damage concerns> and pain in my > brain.> >> > > > > > But I've remained at this very cautious dose for 3 reasons:> >> > A) > > > > My previous depression response> >> > My MCS response to nearly > > > > everything> >> > C) The horrific time that others have had in going > > > > off of it.> >> > I prefer to use non-chemical interventions, so > > > > whenever possible I> take those that have worked, in addition or try > > > > new things. Blockers> of NMDA receptors are very helpful to me, and > > > > other things.> >> > I always recommend that PWCs (or anyone) begin > > > > pharmaceuticals at> far lower doses than normally prescribed. > Both to > > > > accurately monitor> and prevent negative effects, and becasue we > often > > > > do not need more> than minute doses to benefit.> >> > If I know > > > > someone on Klonopin who has depression, I make sure to> tell them my > > > > experience, and watch for that myself.> >> > a, over the years, > > > > you have rather adamantly recommended some> pharmaceuticals that > many > > > > can not tolerate or which have caused> serious damage to some, even > > > > your own self.> ***The only damage I have ever had was from > quinolone > > > > antibiotics> WHICH I NEVER RECOMMENDED TO ANYONE. What I have > > > > recommended was the> old Roadback Foundation protocol of low dose, > > > > pulsed minocyline and> Zithromax, low dose. The risk of these > > > > antibiotics is minimal. I was> given quinolones by a doctor who > > > > thought it was a good way to treat> Lyme disease. I have since > > > > continuously and religiously warned all> other patients against ever > > > > taking any quinolones for any reason.> There is no point in taking > > > > such a dangerous antibiotic when others> are effective and > safer.>> >> > > > > > I believe it's crucial, especially in such a sensitive and ill> > > > > population, to give a fully disclosed and balanced view of > treatment> > > > > results, pro and con, stressing that individuals vary widely.> > >> > If > > > > we cannot do that, we should stick simply to *our own*> experience, > > > > and as fully disclosed as we are able/aware of.> ***Let me add > that my > > > > experience included 5 years of attending the> support group in > > > > Charlotte, NC. I never say any patient of Cheney> recover. They were > > > > generally all on Klonopin. I think this> observation qualifies > as some > > > > sort of experience along with many> postings of horror stories from > > > > patients trying to get of Klonopin.>> a Carnes>> [Non-text > > > > portions of this message have been removed] > > > > > > > > __________________________________________________________ > > > > Search that pays you back! Introducing Live Search cashback. > > > > > > > > http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyoubac\ k > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck> > > > > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck>> > > > > > > > > > > > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck> > > > > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck>>> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 do you have a hole in your heart? >> > > > > > Katrina, Look for brief replies with ***> > I do not think it's > > fair o > > > > > make such a declarative statement on> this list. particularly > > when I'm > > > > > sure you're aware that Klonopin has> been used successfully by many > > > > > CFS patients over the years to relieve> some of the most horrific > > > > > symptoms we have.> ***I do not know one cfids patient in 13 > > years who > > > > > has recovered in> any way on klonopin. Did it relieve symptoms? The > > > > > patients I knew on> it generally were zombies.>> >> > A different > > > > > matter is to post known side effects (common or rare),> or one's own > > > > > individual adverse reaction (mild or severe), as you did> re Lyrica. > > > > > That is very important information.> ***I am not free to repost > > emails > > > > > I have on file of other patients> who had severe withdrawal issues > > > > > with klonopin. I cannot post my own> experience in that regard as I > > > > > never was willing to risk myself and> take it.>> >> > Klonopin is a > > > > > top prescribed medication by Specialists in both CFS> and Dystonia, > > > > > which I also have. I have seen scores of people's> experiences for > > > > > many many years in both populations.> >> > The range of results > > is as > > > > > wide as the difference between night and> day. I also have personal > > > > > friends who have had the very best,> dramatic success, altering > > their > > > > > lives significnificantly in a> positive way, and who've the most > > > > > terrible nightmare experiences> (mainly in coming off of long > > term and > > > > > not-low doses).> ***This was one of my points - it does relieve > > > > > symptoms, but the> risks are very serious.>> >> > My own experience > > > > > with Klonopin is that many years ago, with less> knowledge about > > > > > dosing, I began on a " normal " dose. I experienced> sedation and > > > > > depression. Therefore after a brief trial, I left it for> years, > > never > > > > > planning to go near it again.> >> > Due to serious concerns about > > > > > progression of damage being reported> in CFS brains, and my horrible > > > > > sensory overload, (plus other patient'> positive results), I > > > > > re-visited Klonopin.> >> > By then I had learned I am so exquisitely > > > > > sensitive to drugs, that> at miniscule doses, I have rather > > immediate > > > > > results, whether pro or> con.> >> > At extremely low dose, (1/4 of a > > > > > .5, it instantly gave me a tool> for the horrible sensory overload. > > > > > And an added one for my horrific> muscle contractions.> >> > I also > > > > > have an improvement in cognitive and communicative skills.> ***The > > > > > point is - when you go off it your brain is NO BETTER and may> be > > > > > worse. That is a huge risk to relieve symptoms. Hey, I would > > take> it > > > > > too, if I had to. I am taking 75mg of Lyrica at night, but I am> > > fully > > > > > aware it will cure NOTHING and is protecting NOTHING. It is> causing > > > > > ongoing damage. Like you, I cannot tolerate the nerve> problems > > I now > > > > > have without it. These nerve problems in my case were> CAUSED by > > > > > quinolones and perhaps a viral infection 2 years ago that> was > > > > > unrelated to cfids or Lyme, as far as we can determine.>> >> > > > Becasue > > > > > of Dr. Cheney's use of it for Neuroprotection, I began with> the > > same > > > > > dose at night, moving to .5 every night. When I skip it, my> > > brain is > > > > > again over-firing the next day.> ****There is no documentation > > that it > > > > > protects anything. None. It> does help one get through the day or > > > > > night.>> >> > I use the 1/4 sometimes in the day time, and on > > ocassion > > > > > a little> more, or one other dose.> >> > I have never had any of the > > > > > side effects on the list you posted.> >> > Sometimes I would like to > > > > > try more becasue of brain damage concerns> and pain in my > > brain.> >> > > > > > > But I've remained at this very cautious dose for 3 reasons:> >> > A) > > > > > My previous depression response> >> > My MCS response to nearly > > > > > everything> >> > C) The horrific time that others have had in going > > > > > off of it.> >> > I prefer to use non-chemical interventions, so > > > > > whenever possible I> take those that have worked, in addition or try > > > > > new things. Blockers> of NMDA receptors are very helpful to me, and > > > > > other things.> >> > I always recommend that PWCs (or anyone) begin > > > > > pharmaceuticals at> far lower doses than normally prescribed. > > Both to > > > > > accurately monitor> and prevent negative effects, and becasue we > > often > > > > > do not need more> than minute doses to benefit.> >> > If I know > > > > > someone on Klonopin who has depression, I make sure to> tell them my > > > > > experience, and watch for that myself.> >> > a, over the years, > > > > > you have rather adamantly recommended some> pharmaceuticals that > > many > > > > > can not tolerate or which have caused> serious damage to some, even > > > > > your own self.> ***The only damage I have ever had was from > > quinolone > > > > > antibiotics> WHICH I NEVER RECOMMENDED TO ANYONE. What I have > > > > > recommended was the> old Roadback Foundation protocol of low dose, > > > > > pulsed minocyline and> Zithromax, low dose. The risk of these > > > > > antibiotics is minimal. I was> given quinolones by a doctor who > > > > > thought it was a good way to treat> Lyme disease. I have since > > > > > continuously and religiously warned all> other patients against ever > > > > > taking any quinolones for any reason.> There is no point in taking > > > > > such a dangerous antibiotic when others> are effective and > > safer.>> >> > > > > > > I believe it's crucial, especially in such a sensitive and ill> > > > > > population, to give a fully disclosed and balanced view of > > treatment> > > > > > results, pro and con, stressing that individuals vary widely.> > > >> > If > > > > > we cannot do that, we should stick simply to *our own*> experience, > > > > > and as fully disclosed as we are able/aware of.> ***Let me add > > that my > > > > > experience included 5 years of attending the> support group in > > > > > Charlotte, NC. I never say any patient of Cheney> recover. They were > > > > > generally all on Klonopin. I think this> observation qualifies > > as some > > > > > sort of experience along with many> postings of horror stories from > > > > > patients trying to get of Klonopin.>> a Carnes>> [Non-text > > > > > portions of this message have been removed] > > > > > > > > > > __________________________________________________________ > > > > > Search that pays you back! Introducing Live Search cashback. > > > > > > > > > > > http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyoubac\ k > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck> > > > > > > > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck>> > > > > > > > > > > > > > > > > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck> > > > > > > > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck > > <http://search.live.com/cashback/? & pkw=form=MIJAAF/publ=HMTGL/crea=srchpaysyouba\ ck>>> > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 > > I am not sure where I stand on the klonopin issue, but ironically my new computer has a program that has been trying to clean out old email and a message I sent to myself 2 yrs ago was brought to my attention, I don't know where I got the interview with cheney or how old it is but this is verbatiom what I copied and sent myself from somehting I found on the web. to go faster and suffer a little. > > > Hi, Thanks for posting this. I remember this! It was a little frightening to me because I was brain-fogged and couldn't grasp the concept of coma vs seizure (well, I could grasp it but didn't like it). I cut out a paragraph because I wanted to make a comment based on our recent conversations on the board. This paragraph seems to me to equate Klonipin to us as insulin is to a diabetic. They can be very ill until the insulin is administered. So, one could argue that they are " addicted " to insulin. I am beginning to view Klonipin as insulin for our off-balance brain chemistry. I have been intending to deal with gluatamate/GABA through diet (removing excitotoxins, not easy) to supplementing with GABA. " The last question Cheney addressed concerned the dose: what happens if the dose is too high? He said the only down side was that if you took a little too much (we are not talking overdose here) it would shift you toward coma on the continuum. It would shut your brain down to some degree, and thus impact your ability to function. This is inconvenient, but it's not harmful. In fact, it shifts you into the " healing state " on the continuum. You may feel like a zombie, but your brain is protected and your neurons are not getting fried. However, not being able to function isn't an option for most of us, so we need to find the maximum dose that doesn't make us drowsy. " I have recently found out from an autistic child's mom that removing excitotoxins from diet does not necessarily correct the imbalance (as countless autistic children's parents have learned). The brain seems to generate the imbalance. Having said that, I have gone off excitotoxins for two weeks and then visited a friend for Memorial Day and a few things had chemicals. I recognized the " wired, but tired " issues returning and had much difficulty sleeping, again. Didn't last more than the one night. So, diet may help, I suggest reading Dr. Blaylocks's book and googling Feingold Diet. So if Cheney and others are correct, then Klonipin or GABA would be a lifetime supplement and if we begin to feel drowsy over time then it is possible that would be able to get off Klonipin. AND, if our brains had resolved the issue, then withdrawl would be easy and not the painful process that we hear and read about. Are my assumptions on target? I would be willing to submit a set of questions to Dr. Baraniuk regarding Klonipin if someone will help me generate a concise list. Here's a few to start with.... 1. Is GABA/Glumatate issue generated in brain or or a metabolic issue controlled by diet? 2. Is Klonipin a substance that is correcting (cure) an imbalance or is " bypassing " the cause of the imbalance (treatment) and therefore a lifelong requirement? 3. Would withdrawal for a normal person without GABA/glutamate imbalance be easy and free of symptoms? Therefore, if ME/CFS patient needs Klonipin, withdrawal would be painful. Cort, did you and Dr. B. have a conversation re: Klonipin? I would have loved to have been in the room during your conversation - I bet it was enlightening (in terms of the future of research). Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 One problem with clonazepam (Klonopin) is that you become dependent on it, and if you have to stop it suddenly you can have have severe--even dangerous--withdrawal symptoms. In New York State it is a controlled substance, a Class IV (I think) drug. The doctor has to make a carbon copy of the prescription and send it to the state. This seems to make some doctors very nervous about prescribing it, and they can change their minds on a whim, which leaves the patient in a very bad position. Other doctors have been known to use it as a sort of blackmail: Do such-and-such or I won't renew your clonazepam prescription. So you start on clonazepam at a low dose, and after a while you need a higher dose just to get the same benefits. Your brain, which might have been functioning somewhat normally to begin with, loses the ability to perform certain functions--and when the clonazepam is withdrawn you will probably be more sensitive to sound, light and color than you were. If you have to go off clonazepam " cold turkey, " this sensitivity can increase to disastrous levels. And one other thing. Many people report that after a while, clonazepam seems to cause severe insomnia, in addition to a sort of fog and sometimes depression. It's not like taking a vitamin. Anyone who is thinking of initiating a lifelong dependence on this drug should do some reading on the downsides first. Sue B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Clonazepam can be a real life saver. Like all -zepam drugs you have to be aware and sensible but I am getting a bit tired of the let's-get-thrills-and-get-scared with clonazepam. Not everybody becomes dependent. I have been taking it, on and off for years and I take whatever I need, especially useful for bad face and head neuralgia (bad, bad, bad and only clonazepam helps, like today for eg). Every drug has possible side effect/undesirable effects otherwise they wouldn't be active substances. Every time you take a drug, you take a risk, just have to balance benefits/risks and be sensitive to how your body reacts. Nelly Re: Klonopin One problem with clonazepam (Klonopin) is that you become dependent on it, and if you have to stop it suddenly you can have have severe--even dangerous--withdrawal symptoms. In New York State it is a controlled substance, a Class IV (I think) drug. The doctor has to make a carbon copy of the prescription and send it to the state. This seems to make some doctors very nervous about prescribing it, and they can change their minds on a whim, which leaves the patient in a very bad position. Other doctors have been known to use it as a sort of blackmail: Do such-and-such or I won't renew your clonazepam prescription. So you start on clonazepam at a low dose, and after a while you need a higher dose just to get the same benefits. Your brain, which might have been functioning somewhat normally to begin with, loses the ability to perform certain functions--and when the clonazepam is withdrawn you will probably be more sensitive to sound, light and color than you were. If you have to go off clonazepam " cold turkey, " this sensitivity can increase to disastrous levels. And one other thing. Many people report that after a while, clonazepam seems to cause severe insomnia, in addition to a sort of fog and sometimes depression. It's not like taking a vitamin. Anyone who is thinking of initiating a lifelong dependence on this drug should do some reading on the downsides first. Sue B. ------------------------------------ This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.