Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 I am > at a very very low functionality level and I feel I need all kinds of > help to get well, along with MP, to get out of this 15 years of ill > health. > > > Thanks, > Gayathri. Hi Gayathri, Thanks for the update. You sound as dysfunctional as me. I can only get out of bed and sit in the chair next to it most days while only occassionally going out when I absolutely have to for some reason. Two questions for you: 1) Do you feel the release of head pressure you've experienced on the MP also gives you a greater sense of well-being(improved neurotransmission) and a capacity to " think effortlessly " ? 2) Do you notice any perceptable improvement in the quality of sleep(towards refreshing perhaps) and with a reduction in sleep med. requirements to do so? I noticed Dr Marshall commented that the disappearance of fatigue and the establishment of restorative sleep were the last things to happen 6 months to a year into his protocol for many Sarc patients who experience these same problems. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Hello Dave, > 1) Do you feel the release of head pressure you've experienced on the MP also gives you a greater sense of well-being(improved >neurotransmission) and a capacity to " think effortlessly " ? My reply: It is hard to explain the release of head pressure I experienced with benicar. It was the first symptom improvement I experienced. And I felt that after the second dose :-). I started feeling a bit more positive when this heaviness and cloggy feeling reduced. And there was a slight enhancement in clarity of thought. I still cant read books - brain gets tired soon. so use up the limited brain energy to read emails. And teh head pressure does return if i concentrate too much etc. I tried increasing teh dose to every 6 hrs and that did not help much. > > 2) Do you notice any perceptable improvement in the quality of sleep (towards refreshing perhaps) and with a reduction in sleep med. requirements to do so? Unfortunately, I have not seen any improvement in this area. I need nearly 11 hours of solid sleep. I use doxepin and melatonin for this. And since i had to wake up after 8 hrs to take Benicar, my sleep was more disrupted and made me more exhausted in the morning. After I take my morning dose i found it hard to sleep- my brain became very wired while my body was very very tired. So, I am planning to sleep for 10 hrs and then take Benicar. take care, Gayathri. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 gayu, I find that melatonin, if I take too much gives me a very wired feeling. It may be messing with the hormone adjustment going on with the drop in the 1,25D hormone. Have you tried sleeping without the melatonin? penny > Hello Dave, > > 1) Do you feel the release of head pressure you've experienced on > the MP also gives you a greater sense of well-being(improved > >neurotransmission) and a capacity to " think effortlessly " ? > > My reply: It is hard to explain the release of head pressure I > experienced with benicar. It was the first symptom improvement I > experienced. And I felt that after the second dose :-). I started > feeling a bit more positive when this heaviness and cloggy feeling > reduced. And there was a slight enhancement in clarity of thought. > > I still cant read books - brain gets tired soon. so use up the > limited brain energy to read emails. And teh head pressure does > return if i concentrate too much etc. I tried increasing teh dose to > every 6 hrs and that did not help much. > > > > > > 2) Do you notice any perceptable improvement in the quality of sleep > (towards refreshing perhaps) and with a reduction in sleep med. > requirements to do so? > > Unfortunately, I have not seen any improvement in this area. I need > nearly 11 hours of solid sleep. I use doxepin and melatonin for this. > And since i had to wake up after 8 hrs to take Benicar, my sleep was > more disrupted and made me more exhausted in the morning. After I > take my morning dose i found it hard to sleep- my brain became very > wired while my body was very very tired. > > So, I am planning to sleep for 10 hrs and then take Benicar. > > take care, > Gayathri. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Penny, I tried to do without melatonin. I cant sleep without it- kind of addicted to it. I take 3 mg - I tried reducing the dosage but it did not work either. I have been taking melatonin for 5 years now. Gayu. > gayu, I find that melatonin, if I take too much gives me a very > wired feeling. It may be messing with the hormone adjustment going > on with the drop in the 1,25D hormone. Have you tried sleeping > without the melatonin? > > penny > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 That is probably because melatonin lowers cortisol levels, low in most people with CFS. Have you been assessed for subclinical adrenal insufficiency? Blake Re: MP update > gayu, I find that melatonin, if I take too much gives me a very > wired feeling. It may be messing with the hormone adjustment going > on with the drop in the 1,25D hormone. Have you tried sleeping > without the melatonin? > > penny > > > > Hello Dave, > > > 1) Do you feel the release of head pressure you've experienced > on > > the MP also gives you a greater sense of well-being(improved > > >neurotransmission) and a capacity to " think effortlessly " ? > > > > My reply: It is hard to explain the release of head pressure I > > experienced with benicar. It was the first symptom improvement I > > experienced. And I felt that after the second dose :-). I started > > feeling a bit more positive when this heaviness and cloggy feeling > > reduced. And there was a slight enhancement in clarity of thought. > > > > I still cant read books - brain gets tired soon. so use up the > > limited brain energy to read emails. And teh head pressure does > > return if i concentrate too much etc. I tried increasing teh dose > to > > every 6 hrs and that did not help much. > > > > > > > > > > 2) Do you notice any perceptable improvement in the quality of > sleep > > (towards refreshing perhaps) and with a reduction in sleep med. > > requirements to do so? > > > > Unfortunately, I have not seen any improvement in this area. I > need > > nearly 11 hours of solid sleep. I use doxepin and melatonin for > this. > > And since i had to wake up after 8 hrs to take Benicar, my sleep > was > > more disrupted and made me more exhausted in the morning. After I > > take my morning dose i found it hard to sleep- my brain became > very > > wired while my body was very very tired. > > > > So, I am planning to sleep for 10 hrs and then take Benicar. > > > > take care, > > Gayathri. > > > > > 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 July 22, 2004 Report Share Posted July 22, 2004 , it's ridiculous only if you don't understand the necessity for keeping the full angiotensin II blockade in place. If you let the inflammation get the upper hand, then you're back where you started. It used to be that if I woke up, I could never go back to sleep. NOt a problem anymore. Once I started the Benicar, I would always wake up when it was time for a dose (I don't own an alarm clock) mainly because I could tell it was wearing off. I'd take the pill and immediately go back to sleep. I'm sleeping so well now, and the pain is not coming back the way it used to, so that, yes, sometimes I am a little late with the dose, but never more than 8 hours. I feel way too good with all this inflammation in check and my body knows it. I wake up automatically. Not a problem. No alarm clock needed. :-) The good news is that there's tissue repairing going on, because if I do for some reason forget my Benicar now, the pain doesn't come raging back like it did in the beginning. :-) penny > > Gayathri, that is exactly what I would do in the first place. There is no > way I would interupt my sleep to take a Benicar just so I could be right on > schedule for 8 hours. That's rediculous to me. Besides that, with so many > people's attempt to naively follow the protocol to the T, no one has discussed > that since the body's metabolism slows down once you go to sleep it may not > matter that you go longer than 8 hours so long as you are sleeping. Sleep > comes first. Common sense must prevail. If you wake up w/i 4-6 hours after you > sleep however, it may be a good idea to already have a glass of water and a > pill near bedside so that you can just open one eye and drink it down and > gently go back to sleep almost uninterupted. But please, no alarm clocks. Maybe > I'm wrong, but I doubt it. > > > In a message dated 7/21/2004 2:23:56 PM Eastern Daylight Time, > writes: > > Unfortunately, I have not seen any improvement in this area. I need > nearly 11 hours of solid sleep. I use doxepin and melatonin for this. > And since i had to wake up after 8 hrs to take Benicar, my sleep was > more disrupted and made me more exhausted in the morning. After I > take my morning dose i found it hard to sleep- my brain became very > wired while my body was very very tired. > > So, I am planning to sleep for 10 hrs and then take Benicar. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 I would gladly wake up in the middle of the night to take the Benicar, if it meant an improvement in my health and functioning. After years of interrupted sleep in the middle of the night from insomnia, it can't be any worse than that. And it certainly isn't as bad as some of the other extremely difficult, hair brained, expensive and risky things I've done in an attempt to get well. When you are as sick as I've been, you'll do just about anything to get well, and get what's left of your life back. I've scheduled an appointment in a couple months with a doctor who has prescribed the Marshall protocol for several of his patients. I have no guarantees that he'll be willing to do it for me. I'll have to travel more than 11 hours one way, and I usually end up in major pain and crash from more than an hour of travel. And I'll have to put up with a lot of major stressors in the process. I realize that I may be risking getting worse, and there's a risk that this won't work. And I realize that I may have to wait weeks or months to see improvement. (Three days of Benicar when you're not following the entire protocol is NOT a trial of it. There are many people who don't feel any changes in any symptoms for weeks, don't start herxing for days or weeks, or worse, start herxing and seem to herx forever, or who don't see any improvement for months. Taking it for three days isn't a trial.) I'm so determined to get well, and I'm fighting mad at this illness and determined to kick it's butt. Loosing sleep is nothing in comparison to what I've already gone through. lindaj@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 If you think about it, this point should be moot if one just tries it both ways and determines for themselves the results. If one indeed wakes up after 10 hours of sleep, having taken their last pill right before going to sleep, and then feel better than they did when waking themselves up with an alarm clock to take Benicar exactly at 8 hours, then they should continue sleeping straight through. This way would be better anyway b/c then they would be left with 14 hours of awak time where they could then take Benicar every 7 hours which would be slightly better than 8 hours. Gayathri, try it and see and report results please. In a message dated 7/22/2004 1:40:22 PM Eastern Daylight Time, writes: I would gladly wake up in the middle of the night to take the Benicar, if it meant an improvement in my health and functioning. Quote Link to comment Share on other sites More sharing options...
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