Guest guest Posted July 2, 2007 Report Share Posted July 2, 2007 So what basis are you deciding that mold or tetracyclines are not causative factors? How do you know? I don't personally care if they are factors or something else is, but if you always operate under such assumptions then you may be dismissing something that IS a factor. This is why Tony & I got so frustrated with you before. We'd been telling you for ages what to expect and you always said it wasn't your problem. Then you end up just like the rest of us. I understand the tendency to not focus on things that don't seem relavent to you, but you have to keep an open enough mind to make connections and maybe prevent further deterioration. If I were you, I'd think seriously about every possible cause of inflammation and ICH, which includes things like the tetracycline family and mold and a variety of bacteria rather than dismissing them out of hand. I am in a similar situation as you are. I just reread a letter that I received regarding a CT scan I had done a couple of years ago using Simplant 3D imaging technology. The woman sent me a rather alarming letter saying that my scans showed fluid densities (build up) behind my orbital septum, which usually protects the eye from infection and inflammation. This area, she said, "contains sensitive vascular channels that go to your cranial venous sinuses (particularly the cavernous sinus) and...represent a potentially dangerous situation" She also felt my history of migraines could support what she was seeing. So here I am two years later with increasingly frequent headaches, almost daily now. My point is, this took a long time to get this much worse. Maybe something similar is going on with you as well? It's been there for a long time, but takes a while to reach critical mass to the point of discomfort. I've decided to try to find a decent neurologist, now that my headaches are occurring so frequently, to find out if there's anything to what she said, and also to see if there's any justification to be concerned about a thrombotic clot as she feared. Wish me better luck than any of us have had up 'til now with the world of neurology. pennypjeanneus <pj7@...> wrote: Penny,What worries me about my reasoning is that I still have a headache and inability to reason after a year.But is mold a trigger to this headache? Probably not. Certainly tetracyclines are not even in the picture FOR ME at this time. Inflammation is in the picture. Is this causing swelling of blood vessels, compression of spinal fluid flow? Is there a mechanical way to remove one piece of the problem? For instance, if you could improve blood and spinal fluid flow perhaps that would help the body to reduce infection and inflammation. For some patients mechanical issues may be the whole problem. Certainly, in my case, inflammation is the BIG clue. Yes, I get your point about the old stuff causing the new stuff. But maybe removing some of the old stuff also helps one to do better. I avoid mold as much as possible. My point in sorting through my current headache is that I have not had increased mold exposure, nor did I have a major mold exposure at the time of the start of my headache. Also, the few times we have stayed at a hotel where I could tell there was mold (or walked through a casino - all mold infested) the headache does not change. I wish I had the answers. Thanks to all who have shared ideas with me.a>> Yes, what worries me about your reasoning with your symptoms is that you always say..."I've had such and such for a long time and it never caused a problem before." > > The truth of the matter is that the chronic nature of our illness and the coinicinding strenghthening of the microbes slowly breaks down systems until they no longer work properly. It's rarely a fast process with any discernable cause and effect. That's why we get lumped under the 'chronic/autoimmune labels', because they can't make any obvious connections. > > I'm not saying mold's the cause of your headaches. I really don't know your situation. But I'm realizing that mold is a trigger for mine, despite never having any obvious reactions to mold for years. I do know now that when we had undetected mold under our kitchen floor, I couldn't tolerate being in that room at all. I didn't get headaches, but I'd get so brainfogged and woozy I'd feel like I was going to fall off my kitchen bar stool. We cleaned up the mold and that doesn't happen in there anymore. I can sit in my kitchen and think clearly. However, I now can smell mold all over the neighborhood, and anytime I do I immediately try to get away from it. If I'm exposed for even a couple of minutes, I definitely start feeling woozy, and now I find it triggering headaches as well. > > Remember, as Tony says, if you've got a bacterial infection, mold in many cases is a natural antagonist. Think penicillin. If the bacteria which are comfortably ensconced in your head, suddenly feel a threat from something like mold, or some other lightweight antimicrobial, they're going to fire up the defenses. And that firing up could be causing the inflammation which is causing the headaches. > > penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2007 Report Share Posted July 2, 2007 WOW!!!! You never know with this junk, do you? Thanks for sharing this. a > > a, neurologists couldn't help my daughter's chronic daily headaches that went on for months. When one told me to take her to a psychiatrist, I got so annoyed I said phooey on all of you and started interviewing chiros. She started going to one daily and her headaches were gone in a week. The vertabrae up near the base of her skull kept going out and he kept putting it back, took her off all dairy, and she got well. > > penny > > > > pjeanneus <pj7@...> wrote: > Matt wrote: > > I'm aware that the ICH literature repeatedly lists Lyme as a cause. > > I've made that point ad nauseum. I said that the Lyme literature > > and commentary rarely reciprocate. It's not the ICH folks who are > > dropping the ball. It's the Lyme folks. Did you even read the post > > I cited about the three " Lyme " patients and their " herxing " ? Three > > separate " Lyme " patients reported antibiotic-induced ICH symptoms, > > all in a single thread. They reported headache, pulsatile tinnitus > > and blurry vision. Not one word of ICH in the whole thread. Do you > > believe that Lyme activism is doing a remotely adequate job in > > educating patients to recognize ICH symptoms? It happens > > occasionally. Dawn is doing her best. > > Matt, > I have read everything you posted and all the links. I joined the > pseudotumor message board and read quite a bit there. I have not found > cases where minocycline caused PERMANENT damage, but you have, so I > certainly think those cases I just missed those posts. (Tetracyclines > have nothing to do with my headache, but in others it may, who knows, > so I wasn't really looking for that.) > > Your concern that the Lyme community is ignoring ICH is funny in a > sarcastic way. I would laugh except it hurts my head. I say this > because everybody in each camp is ignoring everybody else. It's been > this way for awhile. Have you read the stuff about Valcyte? Of course > you have, I just can't remember, right? > > I don't plan to join another email list at this point to learn more > about ICH. I did just ask Dawn some questions on another list we are > both on. I plan to continue being treated by a chiropractor - the > first relief I have had in over one year. I also plan to see a neuro- > opthamologist to get a valid diagnosis, if one can be had. > > Currently I have trouble recalling words. For instance I was trying to > tell my husband about a rabbit cage. I could see the cage, but could > not recall the word for " cage. " So you don't need to ask me if I " even > read " what you posted. I shall try to focus on rabbit cages and cute > furry animals just for today. Tomorrow I get to see the chiropractor. > Last Friday I had no headache for one whole day after his treatment. > > In hopes I may come across something that will help you, I will post > how I am doing with the chiropractic treatment asap. > > a > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2007 Report Share Posted July 3, 2007 I think it's becuase they don't think antibiotics cause any problems except Candida. It's Exactly why I avoid those lists now. In the last 4 years I think the term HERX has been bastardized, and I'm tired and weary (i.e. JADED - duh -yet again) about all the Lyme lists because of this error that runs thru all the lists and taints all info.... Barb --- In infections , " phagelod " <mpalmer@...> wrote in part: > They reported headache, pulsatile tinnitus and blurry vision. Not one word of ICH in the whole thread. Do you believe that Lyme activism is doing a remotely adequate job in educating patients to recognize ICH symptoms? It happens occasionally. Dawn is doing her best. Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2007 Report Share Posted July 10, 2007 Matt, Thanks for your very detailed response. The irony of it though is that my head/eyes are too sore for me to really take it all in. I was actually looking for something really simple at this stage, like : try such or such and see if it eases the ICH pain. I have a lot of inflammation everywhere, not just in my head/eyes, nothing seems to touch it. I will go back to your post when I feel capable of reading more than a paragraph In short: what will reduce inflammation inside brain/eyes/spine? Any suggestion appreciated, it is driving me mad Nelly [infections] Re: GABA >> Matt,> > So ICH would actually contribute to infection through immune suppression. Do you think anything that decreases ICH even temporarily and even without getting to the cause of the ICH (ie infection/inflammation) would actually restore immune function and therefore help break the circle?**********ICH doesn't get a lot of research, so few statements regarding the mechanics of the disease can be made with confidence. As I said recently:http://tinyurl.com/2xu6r9there is a trend towards viewing venous sinus stenosis as a final common pathway for many instances of ICH. The ICH may be provoked by any of a variety of factors but if the stenosis forms then the ICH may persist even after the instigating factor is gone. This would predict that stenting the stenosis would be therapeutic. Yet the evidence on this is inconsistent. Some reports (on PubMed and on forums) are positive; others not so much. Perhaps the theory is inadequate. Or perhaps the stents only work well for those who have progressed to a chronic, self-perpetuating phase whereas they don't work so well for patients still suffering from the instigating factor(s).ICH is often temporary. In cases where ICH has not been present for years and where the instigating factor is no longer present, I think your hope of breaking the cycle may be valid. But the stenosis (the narrowing of the vein) probably leads in time to a permanent loss of the vessel's integrity. I'm guessing, that is, that the vein becomes more collapsible the longer it is forced to adopt the narrowing. I'm basing this in part on what tends to happen with apnea. As a patient with apnea creates a vacuum in his/her airway hundreds of times per night, the airway becomes ever more collapsible over the years. This aggravates the apnea. So if the "final common pathway" is true, and if the venous sinus loses its integrity over many years of ICH, then I doubt that a temporary intervention can break that particular cycle.But you have a different cycle in mind, I think. A handful of papers on PubMed report that Lyme can provoke ICH. Since ICH may be immune suppressive, it may aggravate the infection. If you have both ICH and Lyme, then I would think a coordinated approach would be most likely break that cycle. Other "occult" infections (where I'm using "occult" to distinguish it from bacterial meningitis which I doubt is a problem for PWCs visiting this forum) might provoke ICH, but to my knowledge none are as well documented for this as is Lyme.But even if that case applies to you, it doesn't mean that the first self-perpetuating cycle isn't also operative--you could still have a self-perpetuating venous sinus stenosis.I was suggesting a different scenario. One in which the infection is not contributing to the ICH, but rather the infection is entirely a secondary phenomenon--secondary to the ICH. Sort of like infections that are secondary to untreated diabetes.To get a clearer view on this, my goal is to have a lumbar puncture with enough CSF drained to normalize the pressure. Some of the ICH patients feel fantastic for half a day to several days (before the pressure builds back up). I'd also like to see Dr. Glueck about possible clotting disorders (a cause of ICH via venus sinus thrombosis).> > Would diamox or other similar substances, do the trick?*********I plan on trying a diamox/prilosec combo in a while. I don't know what options you have in France, but there are two papers on PubMed reporting efficacy of marijuana for ICH (apparently the therapeutic mechanism is the same as that for glaucoma, but I'm not sure). I can find those citations if you want.> > What role do you see for GABA (inhibitors?)?******I know virtually nothing about GABA. I was wondering, though, if the inexplicable physical anxiety some of have (not emotional for me; just a physical/muscular tension) is due to sympathetic activation by way of ICH, not to some underlying dysfunction of a neurochemical pathway. I'm wondering, that is, if GABA works for some people by relieving some of the negative consequences of ICH without relieving the ICH itself.> > I get massive, dreadful ICH type headaches on a regular basis*******The conventional approach is to be evaluated for papilledema by a neuroophthalmologist. Despite what many doctors might regurgitate from their textbooks, the absence of papilledema doesn't rule out ICH, but if you have papilledema then this is useful info to have. I read one paper on ICH reporting the continous monitoring of intracranial pressure in an ICH patient. When the pressure would spike (called a pulse wave, or waveform) the patient would feel worsening head pain. The point is, the relationship between spikes in intracranial pressure and head pain has been documented.Matt> > Nelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2007 Report Share Posted July 10, 2007 Have you tried Curcumin? Singular also helps me. Marie --- Nelly Pointis <janel@...> wrote: > Matt, > > Thanks for your very detailed response. The irony of > it though is that my head/eyes are too sore for me > to really take it all in. I was actually looking for > something really simple at this stage, like : try > such or such and see if it eases the ICH pain. I > have a lot of inflammation everywhere, not just in > my head/eyes, nothing seems to touch it. I will go > back to your post when I feel capable of reading > more than a paragraph > > In short: what will reduce inflammation inside > brain/eyes/spine? Any suggestion appreciated, it is > driving me mad > > Nelly > [infections] Re: GABA > > > > > > > Matt, > > > > So ICH would actually contribute to infection > through immune > suppression. Do you think anything that decreases > ICH even > temporarily and even without getting to the cause > of the ICH (ie > infection/inflammation) would actually restore > immune function and > therefore help break the circle? > > > **********ICH doesn't get a lot of research, so > few statements > regarding the mechanics of the disease can be made > with confidence. > As I said recently: > > http://tinyurl.com/2xu6r9 > > there is a trend towards viewing venous sinus > stenosis as a final > common pathway for many instances of ICH. The ICH > may be provoked > by any of a variety of factors but if the stenosis > forms then the > ICH may persist even after the instigating factor > is gone. This > would predict that stenting the stenosis would be > therapeutic. Yet > the evidence on this is inconsistent. Some > reports (on PubMed and > on forums) are positive; others not so much. > Perhaps the theory is > inadequate. Or perhaps the stents only work well > for those who have > progressed to a chronic, self-perpetuating phase > whereas they don't > work so well for patients still suffering from the > instigating factor > (s). > > ICH is often temporary. In cases where ICH has > not been present for > years and where the instigating factor is no > longer present, I think > your hope of breaking the cycle may be valid. But > the stenosis (the > narrowing of the vein) probably leads in time to a > permanent loss of > the vessel's integrity. I'm guessing, that is, > that the vein > becomes more collapsible the longer it is forced > to adopt the > narrowing. I'm basing this in part on what tends > to happen with > apnea. As a patient with apnea creates a vacuum > in his/her airway > hundreds of times per night, the airway becomes > ever more > collapsible over the years. This aggravates the > apnea. So if > the " final common pathway " is true, and if the > venous sinus loses > its integrity over many years of ICH, then I doubt > that a temporary > intervention can break that particular cycle. > > But you have a different cycle in mind, I think. > A handful of > papers on PubMed report that Lyme can provoke ICH. > Since ICH may be > immune suppressive, it may aggravate the > infection. If you have > both ICH and Lyme, then I would think a > coordinated approach would > be most likely break that cycle. Other " occult " > infections (where > I'm using " occult " to distinguish it from > bacterial meningitis which > I doubt is a problem for PWCs visiting this forum) > might provoke > ICH, but to my knowledge none are as well > documented for this as is > Lyme. > > But even if that case applies to you, it doesn't > mean that the first > self-perpetuating cycle isn't also operative--you > could still have a > self-perpetuating venous sinus stenosis. > > I was suggesting a different scenario. One in > which the infection > is not contributing to the ICH, but rather the > infection is entirely > a secondary phenomenon--secondary to the ICH. > Sort of like > infections that are secondary to untreated > diabetes. > > To get a clearer view on this, my goal is to have > a lumbar puncture > with enough CSF drained to normalize the pressure. > Some of the ICH > patients feel fantastic for half a day to several > days (before the > pressure builds back up). I'd also like to see > Dr. Glueck about > possible clotting disorders (a cause of ICH via > venus sinus > thrombosis). > > > > > > Would diamox or other similar substances, do the > trick? > > > *********I plan on trying a diamox/prilosec combo > in a while. I > don't know what options you have in France, but > there are two papers > on PubMed reporting efficacy of marijuana for ICH > (apparently the > therapeutic mechanism is the same as that for > glaucoma, but I'm not > sure). I can find those citations if you want. > > > > > > What role do you see for GABA (inhibitors?)? > > > ******I know virtually nothing about GABA. I was > wondering, though, > if the inexplicable physical anxiety some of have > (not emotional for > me; just a physical/muscular tension) is due to > sympathetic > activation by way of ICH, not to some underlying > dysfunction of a > neurochemical pathway. I'm wondering, that is, if > GABA works for > some people by relieving some of the negative > consequences of ICH > without relieving the ICH itself. > > > > > > I get massive, dreadful ICH type headaches on a > regular basis > > > *******The conventional approach is to be > evaluated for papilledema > by a neuroophthalmologist. Despite what many > doctors might > regurgitate from their textbooks, the absence of > papilledema doesn't > rule out ICH, but if you have papilledema then > this is useful info > to have. I read one paper on ICH reporting the > continous monitoring > of intracranial pressure in an ICH patient. When > the pressure would > spike (called a pulse wave, or waveform) the > patient would feel > worsening head pain. The point is, the > relationship between spikes > in intracranial pressure and head pain has been > documented. > === message truncated === Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2007 Report Share Posted July 10, 2007 yes, tried curcumin (turmeric) didn't help. I don't know what singular is N [infections] Re: GABA> > > > >> > Matt,> > > > So ICH would actually contribute to infection> through immune > suppression. Do you think anything that decreases> ICH even > temporarily and even without getting to the cause> of the ICH (ie > infection/inflammation) would actually restore> immune function and > therefore help break the circle?> > > **********ICH doesn't get a lot of research, so> few statements > regarding the mechanics of the disease can be made> with confidence. > As I said recently:> > http://tinyurl.com/2xu6r9> > there is a trend towards viewing venous sinus> stenosis as a final > common pathway for many instances of ICH. The ICH> may be provoked > by any of a variety of factors but if the stenosis> forms then the > ICH may persist even after the instigating factor> is gone. This > would predict that stenting the stenosis would be> therapeutic. Yet > the evidence on this is inconsistent. Some> reports (on PubMed and > on forums) are positive; others not so much. > Perhaps the theory is > inadequate. Or perhaps the stents only work well> for those who have > progressed to a chronic, self-perpetuating phase> whereas they don't > work so well for patients still suffering from the> instigating factor> (s).> > ICH is often temporary. In cases where ICH has> not been present for > years and where the instigating factor is no> longer present, I think > your hope of breaking the cycle may be valid. But> the stenosis (the > narrowing of the vein) probably leads in time to a> permanent loss of > the vessel's integrity. I'm guessing, that is,> that the vein > becomes more collapsible the longer it is forced> to adopt the > narrowing. I'm basing this in part on what tends> to happen with > apnea. As a patient with apnea creates a vacuum> in his/her airway > hundreds of times per night, the airway becomes> ever more > collapsible over the years. This aggravates the> apnea. So if > the "final common pathway" is true, and if the> venous sinus loses > its integrity over many years of ICH, then I doubt> that a temporary > intervention can break that particular cycle.> > But you have a different cycle in mind, I think. > A handful of > papers on PubMed report that Lyme can provoke ICH.> Since ICH may be > immune suppressive, it may aggravate the> infection. If you have > both ICH and Lyme, then I would think a> coordinated approach would > be most likely break that cycle. Other "occult"> infections (where > I'm using "occult" to distinguish it from> bacterial meningitis which > I doubt is a problem for PWCs visiting this forum)> might provoke > ICH, but to my knowledge none are as well> documented for this as is > Lyme.> > But even if that case applies to you, it doesn't> mean that the first > self-perpetuating cycle isn't also operative--you> could still have a > self-perpetuating venous sinus stenosis.> > I was suggesting a different scenario. One in> which the infection > is not contributing to the ICH, but rather the> infection is entirely > a secondary phenomenon--secondary to the ICH. > Sort of like > infections that are secondary to untreated> diabetes.> > To get a clearer view on this, my goal is to have> a lumbar puncture > with enough CSF drained to normalize the pressure.> Some of the ICH > patients feel fantastic for half a day to several> days (before the > pressure builds back up). I'd also like to see> Dr. Glueck about > possible clotting disorders (a cause of ICH via> venus sinus > thrombosis).> > > > > > Would diamox or other similar substances, do the> trick?> > > *********I plan on trying a diamox/prilosec combo> in a while. I > don't know what options you have in France, but> there are two papers > on PubMed reporting efficacy of marijuana for ICH> (apparently the > therapeutic mechanism is the same as that for> glaucoma, but I'm not > sure). I can find those citations if you want.> > > > > > What role do you see for GABA (inhibitors?)?> > > ******I know virtually nothing about GABA. I was> wondering, though, > if the inexplicable physical anxiety some of have> (not emotional for > me; just a physical/muscular tension) is due to> sympathetic > activation by way of ICH, not to some underlying> dysfunction of a > neurochemical pathway. I'm wondering, that is, if> GABA works for > some people by relieving some of the negative> consequences of ICH > without relieving the ICH itself.> > > > > > I get massive, dreadful ICH type headaches on a> regular basis> > > *******The conventional approach is to be> evaluated for papilledema > by a neuroophthalmologist. Despite what many> doctors might > regurgitate from their textbooks, the absence of> papilledema doesn't > rule out ICH, but if you have papilledema then> this is useful info > to have. I read one paper on ICH reporting the> continous monitoring > of intracranial pressure in an ICH patient. When> the pressure would > spike (called a pulse wave, or waveform) the> patient would feel > worsening head pain. The point is, the> relationship between spikes > in intracranial pressure and head pain has been> documented.> === message truncated === Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2007 Report Share Posted July 10, 2007 Nelly, if I have good results with the gallium, I'll definitely post, so please stay tuned. I'm really hoping this can help us as much as it seems to help those lame horses and people with arthritis, etc. pennyNelly Pointis <janel@...> wrote: Matt, Thanks for your very detailed response. The irony of it though is that my head/eyes are too sore for me to really take it all in. I was actually looking for something really simple at this stage, like : try such or such and see if it eases the ICH pain. I have a lot of inflammation everywhere, not just in my head/eyes, nothing seems to touch it. I will go back to your post when I feel capable of reading more than a paragraph In short: what will reduce inflammation inside brain/eyes/spine? Any suggestion appreciated, it is driving me mad Nelly [infections] Re: GABA >> Matt,> > So ICH would actually contribute to infection through immune suppression. Do you think anything that decreases ICH even temporarily and even without getting to the cause of the ICH (ie infection/inflammation) would actually restore immune function and therefore help break the circle?**********ICH doesn't get a lot of research, so few statements regarding the mechanics of the disease can be made with confidence. As I said recently:http://tinyurl.com/2xu6r9there is a trend towards viewing venous sinus stenosis as a final common pathway for many instances of ICH. The ICH may be provoked by any of a variety of factors but if the stenosis forms then the ICH may persist even after the instigating factor is gone. This would predict that stenting the stenosis would be therapeutic. Yet the evidence on this is inconsistent. Some reports (on PubMed and on forums) are positive; others not so much. Perhaps the theory is inadequate. Or perhaps the stents only work well for those who have progressed to a chronic, self-perpetuating phase whereas they don't work so well for patients still suffering from the instigating factor(s).ICH is often temporary. In cases where ICH has not been present for years and where the instigating factor is no longer present, I think your hope of breaking the cycle may be valid. But the stenosis (the narrowing of the vein) probably leads in time to a permanent loss of the vessel's integrity. I'm guessing, that is, that the vein becomes more collapsible the longer it is forced to adopt the narrowing. I'm basing this in part on what tends to happen with apnea. As a patient with apnea creates a vacuum in his/her airway hundreds of times per night, the airway becomes ever more collapsible over the years. This aggravates the apnea. So if the "final common pathway" is true, and if the venous sinus loses its integrity over many years of ICH, then I doubt that a temporary intervention can break that particular cycle.But you have a different cycle in mind, I think. A handful of papers on PubMed report that Lyme can provoke ICH. Since ICH may be immune suppressive, it may aggravate the infection. If you have both ICH and Lyme, then I would think a coordinated approach would be most likely break that cycle. Other "occult" infections (where I'm using "occult" to distinguish it from bacterial meningitis which I doubt is a problem for PWCs visiting this forum) might provoke ICH, but to my knowledge none are as well documented for this as is Lyme.But even if that case applies to you, it doesn't mean that the first self-perpetuating cycle isn't also operative--you could still have a self-perpetuating venous sinus stenosis.I was suggesting a different scenario. One in which the infection is not contributing to the ICH, but rather the infection is entirely a secondary phenomenon--secondary to the ICH. Sort of like infections that are secondary to untreated diabetes.To get a clearer view on this, my goal is to have a lumbar puncture with enough CSF drained to normalize the pressure. Some of the ICH patients feel fantastic for half a day to several days (before the pressure builds back up). I'd also like to see Dr. Glueck about possible clotting disorders (a cause of ICH via venus sinus thrombosis).> > Would diamox or other similar substances, do the trick?*********I plan on trying a diamox/prilosec combo in a while. I don't know what options you have in France, but there are two papers on PubMed reporting efficacy of marijuana for ICH (apparently the therapeutic mechanism is the same as that for glaucoma, but I'm not sure). I can find those citations if you want.> > What role do you see for GABA (inhibitors?)?******I know virtually nothing about GABA. I was wondering, though, if the inexplicable physical anxiety some of have (not emotional for me; just a physical/muscular tension) is due to sympathetic activation by way of ICH, not to some underlying dysfunction of a neurochemical pathway. I'm wondering, that is, if GABA works for some people by relieving some of the negative consequences of ICH without relieving the ICH itself.> > I get massive, dreadful ICH type headaches on a regular basis*******The conventional approach is to be evaluated for papilledema by a neuroophthalmologist. Despite what many doctors might regurgitate from their textbooks, the absence of papilledema doesn't rule out ICH, but if you have papilledema then this is useful info to have. I read one paper on ICH reporting the continous monitoring of intracranial pressure in an ICH patient. When the pressure would spike (called a pulse wave, or waveform) the patient would feel worsening head pain. The point is, the relationship between spikes in intracranial pressure and head pain has been documented.Matt> > Nelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Singular is perscription anti inflammatory --- Nelly Pointis <janel@...> wrote: > yes, tried curcumin (turmeric) didn't help. I don't > know what singular is > N > [infections] Re: GABA > > > > > > > > > > > > Matt, > > > > > > So ICH would actually contribute to > infection > > through immune > > suppression. Do you think anything that > decreases > > ICH even > > temporarily and even without getting to the > cause > > of the ICH (ie > > infection/inflammation) would actually restore > > immune function and > > therefore help break the circle? > > > > > > **********ICH doesn't get a lot of research, > so > > few statements > > regarding the mechanics of the disease can be > made > > with confidence. > > As I said recently: > > > > http://tinyurl.com/2xu6r9 > > > > there is a trend towards viewing venous sinus > > stenosis as a final > > common pathway for many instances of ICH. The > ICH > > may be provoked > > by any of a variety of factors but if the > stenosis > > forms then the > > ICH may persist even after the instigating > factor > > is gone. This > > would predict that stenting the stenosis would > be > > therapeutic. Yet > > the evidence on this is inconsistent. Some > > reports (on PubMed and > > on forums) are positive; others not so much. > > Perhaps the theory is > > inadequate. Or perhaps the stents only work > well > > for those who have > > progressed to a chronic, self-perpetuating > phase > > whereas they don't > > work so well for patients still suffering from > the > > instigating factor > > (s). > > > > ICH is often temporary. In cases where ICH > has > > not been present for > > years and where the instigating factor is no > > longer present, I think > > your hope of breaking the cycle may be valid. > But > > the stenosis (the > > narrowing of the vein) probably leads in time > to a > > permanent loss of > > the vessel's integrity. I'm guessing, that > is, > > that the vein > > becomes more collapsible the longer it is > forced > > to adopt the > > narrowing. I'm basing this in part on what > tends > > to happen with > > apnea. As a patient with apnea creates a > vacuum > > in his/her airway > > hundreds of times per night, the airway > becomes > > ever more > > collapsible over the years. This aggravates > the > > apnea. So if > > the " final common pathway " is true, and if the > > venous sinus loses > > its integrity over many years of ICH, then I > doubt > > that a temporary > > intervention can break that particular cycle. > > > > But you have a different cycle in mind, I > think. > > A handful of > > papers on PubMed report that Lyme can provoke > ICH. > > Since ICH may be > > immune suppressive, it may aggravate the > > infection. If you have > > both ICH and Lyme, then I would think a > > coordinated approach would > > be most likely break that cycle. Other > " occult " > > infections (where > > I'm using " occult " to distinguish it from > > bacterial meningitis which > > I doubt is a problem for PWCs visiting this > forum) > > might provoke > > ICH, but to my knowledge none are as well > > documented for this as is > > Lyme. > > > > But even if that case applies to you, it > doesn't > > mean that the first > > self-perpetuating cycle isn't also > operative--you > > could still have a > > self-perpetuating venous sinus stenosis. > > > > I was suggesting a different scenario. One in > > which the infection > > is not contributing to the ICH, but rather the > > infection is entirely > > a secondary phenomenon--secondary to the ICH. > > Sort of like > > infections that are secondary to untreated > > diabetes. > > > > To get a clearer view on this, my goal is to > have > > a lumbar puncture > > with enough CSF drained to normalize the > pressure. > > Some of the ICH > > patients feel fantastic for half a day to > several > > days (before the > > pressure builds back up). I'd also like to > see > > Dr. Glueck about > > possible clotting disorders (a cause of ICH > via > > venus sinus > > thrombosis). > > > > > > > > > > Would diamox or other similar substances, do > the > === message truncated === Quote Link to comment Share on other sites More sharing options...
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