Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 True. If the pressure is secondary to a disease like Lyme (or something else entirely)- I would think it would be hard to determine what the cause was if the headache DID subside after draining some fluid.. you wouldn't be any farther ahead (pardon the pun) in knowing the actual cause. Then.. could it send you down the wrong path? i.e.possibly only treating a secondary symptom? I'm not trying to argue- It's just the way my brain takes appart a problem. Barb Matt wrote in part: I haven't been diagnosed with intracranial hypertension. I think there are numerous pitfalls, and I haven't yet formulated a plan of action. Many people who suffer intracranial hypertension feel great relief for a few days when they have some CSF drained. I would love to try this. This would give me information that is at least as important as the opening pressure reading itself. Having a high pressure doesn't guarantee that reducing the pressure will resolve all the symptoms (the pressure could itself be secondary to some other fatigue-provoking process, e.g., Lyme disease, though I also believe that some people being treated for Lyme disease actually have intracranial pressure in the absence of Lyme.). So I wouldn't want to opt, say, for a shunt without first knowing if normal pressure will relieve my fatigue. This is why I think it is so critical to have some CSF drained by lumbar puncture and see how that makes me feel. There are many pitfalls here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 Hey Barb What I'm looking for isn't just a relief of headache, but a relief of fatigue/brainfog. ICH doesn't just cause headache, it compromises cerebral blood flow. If draining CSF relieves not only my dull headache, but makes me feel much better generally, then I'll have my answer. Although there are multiple reports of Lyme-induced ICH on PubMed, most Lyme patients don't appear to have ICH. Yet they often suffer greatly. So a Lyme patient that has comorbid ICH and feels relief of headache when their CSF is drained should nevertheless continue to feel considerable malaise. Alternatively, if most of the malaise is relieved by CSF drainage then either the ICH is primary, or the Lyme (or whatever) is causing my worst complaint (fatigue/brainfog) by way of ICH. The whole point of a trial CSF drainage, as I see it, is to discriminate between these two possibilities--is ICH primary or secondary? I've been sick for about 23 years now. While it has waxed and waned over time, the general trend has been steady. Even if I have some pathogen, that pathogen doesn't seem to be gaining serious ground over time. If that pathogen is the ultimate cause of ICH and I could get major relief by treating the ICH, then I'd be happy to do that, get on with my life, and let that pathogen exact what would, in that scenario, appear to be a modest non-ICH price. I'd gladly trade 10 years of longevity, for 20 years of quality of life. And if I had some quality of life, then I'd actually be able to pursue any putative pathogen more effectively. At this point, it's all I can muster just to maintain a career. Matt > > True. > > If the pressure is secondary to a disease like Lyme (or something > else entirely)- I would think it would be hard to determine what the > cause was if the headache DID subside after draining some fluid.. you > wouldn't be any farther ahead (pardon the pun) in knowing the actual > cause. > > Then.. could it send you down the wrong path? i.e.possibly only > treating a secondary symptom? > > I'm not trying to argue- It's just the way my brain takes appart a > problem. > > Barb > > > > > Matt wrote in part: > I haven't been diagnosed with intracranial hypertension. I think > there are numerous pitfalls, and I haven't yet formulated a plan of > action. Many people who suffer intracranial hypertension feel great > relief for a few days when they have some CSF drained. I would love > to try this. This would give me information that is at least as > important as the opening pressure reading itself. Having a high > pressure doesn't guarantee that reducing the pressure will resolve > all the symptoms (the pressure could itself be secondary to some > other fatigue-provoking process, e.g., Lyme disease, though I also > believe that some people being treated for Lyme disease actually > have intracranial pressure in the absence of Lyme.). So I wouldn't > want to opt, say, for a shunt without first knowing if normal > pressure will relieve my fatigue. This is why I think it is so > critical to have some CSF drained by lumbar puncture and see how > that makes me feel. > > There are many pitfalls here. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 I know people ( not you guys here on this list) never really beleived me when I'd tell them I had a continual head ache for about 8 years - of some intensity or another. SOmetimes I'd wake up at night with a really bad one- and it'd be a little better in the am- but I bet i didn't have 2 headache free days a month. I could NEVER tip my head down ( like below my knees) for very long or my head would POUND- and fluid (edema) would quickly accumulate around my eyes - then stay there for quite some time. I think that if my head aches were allevaited I would have felt generally better - not just - Oh my head ache's gone - That's what I meant - But I hear ya on the quality of life issue. And I hear ya when you say you get to a point where it doesn't really matter what anybody calls your situation - you just want releif. Can you find a DOc that'll do a tap? Barb > > > > True. > > > > If the pressure is secondary to a disease like Lyme (or something > > else entirely)- I would think it would be hard to determine what > the > > cause was if the headache DID subside after draining some fluid.. > you > > wouldn't be any farther ahead (pardon the pun) in knowing the > actual > > cause. > > > > Then.. could it send you down the wrong path? i.e.possibly only > > treating a secondary symptom? > > > > I'm not trying to argue- It's just the way my brain takes appart a > > problem. > > > > Barb > > > > > > > > > > Matt wrote in part: > > I haven't been diagnosed with intracranial hypertension. I think > > there are numerous pitfalls, and I haven't yet formulated a plan > of > > action. Many people who suffer intracranial hypertension feel > great > > relief for a few days when they have some CSF drained. I would > love > > to try this. This would give me information that is at least as > > important as the opening pressure reading itself. Having a high > > pressure doesn't guarantee that reducing the pressure will resolve > > all the symptoms (the pressure could itself be secondary to some > > other fatigue-provoking process, e.g., Lyme disease, though I also > > believe that some people being treated for Lyme disease actually > > have intracranial pressure in the absence of Lyme.). So I wouldn't > > want to opt, say, for a shunt without first knowing if normal > > pressure will relieve my fatigue. This is why I think it is so > > critical to have some CSF drained by lumbar puncture and see how > > that makes me feel. > > > > There are many pitfalls here. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 I have swollen optic nerve heads, which were said to be drusen about 5 years ago. I suspect it's papilledema, not drusen and I could get a neuroophthalmologist to make that call. That should get me a tap via conventional channels, but this is very problematic. The opening pressure would be nice to know. But they are unlikely to drain CSF unless it is especially high. If they don't drain, then I won't be able to judge the extent to which the pressure is the immediate cause of my suffering, vs a secondary consequence of something else. And if they agree to drain they may drain too quickly and herniate my cerebellum and/or insist on overdraining leading to low-pressure headache which would compromise my subjective judgment on the value of pressure normalization. And even if I get a diagnosis, then what? They'll prescribe diamox. Maybe that would work. But when it doesn't, most docs seem to blame the patient. After all, the text book makes this " rare " disease seem simple to diagnose and straight forward to treat. Daimox also often causes fatigue on its own, which docs don't seem to be sympathetic to. They don't usually agree to insert shunts unless you're going blind from the papilledema, and I stents are so new for this condition that I don't think it's being done in the US yet. You just can't believe the failure rate on shunts unless you spend time reading the forums. I think the record, for the posts I've seen, involved 12 surgical revisions in something like 2 years. But many people need routine revisions, and often have to beg indifferent surgeons to care. There are alternative therapies like anticoagulants and Dr. Glueck agrees to consult with local physicians intrested in trying this, but you do have to have a local doc and I don't think I will be able to find a doc interested in doing this, at least in my health plan. And the anticoagulants only help some patients. Marijuana has been reported (on PubMed) to work with ICH (apparently for the same reason it works for glaucoma) but.... At some point I'll roll the dice. I'm sort of psychologically paralyzed for now. Matt > > > Can you find a DOc that'll do a tap? > > Barb > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Barb, Penny and Matt, That is why for now I have decided to not have further tests run. My doc gave me Valtrex and Greenstone Zithromax. I started on an elimination diet today, but I doubt this is a food allergy that just came out of the blue. Matt, I do see two fingers on the right side when I do the test you described. I also get worse head pressure when I lean down like picking something up off the floor. I will keep posting and let you know if anything resolves. If it doesn't I will have to go back to someone and get more tests run. Oh, I am walking around the block now every day - exercise sometimes does help. We shall see. Penny, if csf is leaking from your brain that sounds like a situation ripe for infection getting into the brain. I did read that CPAP machines sometimes force bacteria into the brain if there is some opening. I use a CPAP, so wonder if this contributed to a low grade brain infection in my case following the cut in the back of my sinuses when my vocal cords were examined. a Carnes > > True. > > If the pressure is secondary to a disease like Lyme (or something > else entirely)- I would think it would be hard to determine what the > cause was if the headache DID subside after draining some fluid.. you > wouldn't be any farther ahead (pardon the pun) in knowing the actual > cause. > > Then.. could it send you down the wrong path? i.e.possibly only > treating a secondary symptom? > > I'm not trying to argue- It's just the way my brain takes appart a > problem. > > Barb > > > > > Matt wrote in part: > I haven't been diagnosed with intracranial hypertension. I think > there are numerous pitfalls, and I haven't yet formulated a plan of > action. Many people who suffer intracranial hypertension feel great > relief for a few days when they have some CSF drained. I would love > to try this. This would give me information that is at least as > important as the opening pressure reading itself. Having a high > pressure doesn't guarantee that reducing the pressure will resolve > all the symptoms (the pressure could itself be secondary to some > other fatigue-provoking process, e.g., Lyme disease, though I also > believe that some people being treated for Lyme disease actually > have intracranial pressure in the absence of Lyme.). So I wouldn't > want to opt, say, for a shunt without first knowing if normal > pressure will relieve my fatigue. This is why I think it is so > critical to have some CSF drained by lumbar puncture and see how > that makes me feel. > > There are many pitfalls here. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 Just chiming in on my opinion with what may be occuring. Bacteria are constantly producing gases and they will tend to put pressure in your csf...An egs of this may be a rotten tooth taken home in a plastic bag.. after a day or two the plastic bag turns inot a balloon.So to think your not on track when doing the right chaemotherapy with antibiotics may be a bad idea.The unfortunate truth may be that many bacteriostatic drugs may stimulate the bacteria to prduce more gases rather than killing them. tony > > > > > > > Can you find a DOc that'll do a tap? > > > > Barb > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 My head pressure and associated problems are non existent at the moment..... So by soaking my head in antimcrobials has seen me avoid all the pitfalls of trying to have a succesfull surgery or embrace any of the other therapies on offer..So I'm not really interested in learning any new angles on these conditions, I feel the ones presented have been enough of a learning curve.. tony > > > > > > > > > > > Can you find a DOc that'll do a tap? > > > > > > Barb > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2007 Report Share Posted May 4, 2007 Dear The fact that it's wortsened by antimicrobials is due to several factors IMO. Firstly low levels of drugs are reaching the bugs inciting them into action. Secondly the bacteriostatic drugs are not a good idea against many infections-this is documeneted widely in the use of established heart infections and bacteriostatic drugs.They may be a better option alongside a good bacteriacidal(penicillin, cephalasporin, aminoglycoside) IMO.And thirdly and possably the most important micro- circulation and coagulation issues.I notice that when I bust my hump at soccer training I feel better over the next few days because I think I'm pushing hard into my microcirculation and getting it kick started, not to mention my lymphatics kick started as well.I feel that alot of the biofilm that driblles down the throat on a regular basis deposits into the microcirculation/lymphatics and stops alot of there processes from working...Also IMO there's a consequence to the body from suffering long term pain cycles and it's JUST DAMAGE- that unfortunately no-one knows or bothers to locate or describe... > > > > > > > > > > > > > > > Can you find a DOc that'll do a tap? > > > > > > > > Barb > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2007 Report Share Posted May 4, 2007 , When I was hunting for causes of intracranial pressure I found that mino and doxy can CAUSE it. I don't know about metronidazole. Since I have taken so much Zithromax I looked to see if there is any link with it. So far I have not found one. Are you still taking mino or doxy? Like Tony, I would be hesitant to have surgery. So I am looking for some other solution. One stopgap help I found is to put heat on my head during the night. When I do this I am able to go back to sleep. a Dear TonyI'm glad that you were successful, mine is worsened by Mino, Doxy and metronidazole.RegardsR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2007 Report Share Posted May 4, 2007 It's been a long time since I could play soccer - a long time. But I am finding if I even walk the head pressure is relieved somewhat, for a time. I'm focusing now on walking and diet to lose weight. I did read that obesity makes it statistically more likely to get this problem - asssuming I even know what the problem is. I am on Valtrex and have heard from a couple of folks they lost weight on Valtrex - interesting in light of the fact that scientists are finding links between rapid weight gain and viruses - you know those fat mice vs. skinny mice. a Dear The fact that it's wortsened by antimicrobials is due to several factors IMO. Firstly low levels of drugs are reaching the bugs inciting them into action. Secondly the bacteriostatic drugs are not a good idea against many infections-this is documeneted widely in the use of established heart infections and bacteriostatic drugs.They may be a better option alongside a good bacteriacidal(penicillin, cephalasporin, aminoglycoside) IMO.And thirdly and possably the most important micro- circulation and coagulation issues.I notice that when I bust my hump at soccer training I feel better over the next few days because I think I'm pushing hard into my microcirculation and getting it kick started, not to mention my lymphatics kick started as well.I feel that alot of the biofilm that driblles down the throat on a regular basis deposits into the microcirculation/lymphatics and stops alot of there processes from working...Also IMO there's a consequence to the body from suffering long term pain cycles and it's JUST DAMAGE- that unfortunately no-one knows or bothers to locate or describe... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2007 Report Share Posted May 9, 2007 Thanks, for the thought. My skin's not dry overall. It's really smooth except those areas where I'm exposed to the sun. The photosensitivity thing is literally baking my hands, which get the most exposure from driving. They're red all the time and very chapped/leathery. Kind of shiny in places too, just like real burns. penny > Dear a > Unfortunately Metronidazole is on the list as is Vitamin A (which I was taking to reduce the photosensitization from Doxy) > I've stopped taking both Mino and Doxy (and will stop the Vit A as well). So far , no real change in headaches. > The only surefire cure I can think of at this stage is a headectomy :-). > I'll keep you posted after my next visit to the duc. > R > [infections] Re: Intracranial Pressure > > > , > When I was hunting for causes of intracranial pressure I found that mino and doxy can CAUSE it. I don't know about metronidazole. Since I have taken so much Zithromax I looked to see if there is any link with it. So far I have not found one. Are you still taking mino or doxy? > > Like Tony, I would be hesitant to have surgery. So I am looking for some other solution. > > One stopgap help I found is to put heat on my head during the night. When I do this I am able to go back to sleep. > > a > > Dear Tony > I'm glad that you were successful, mine is worsened by Mino, Doxy and metronidazole. > Regards > R > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2007 Report Share Posted May 10, 2007 Report back on diamox soon--dosage, therapeutic response, side effects, etc. Have you looked into potassium or sodium to mitigate some of the side effects? Thanks, Matt > As an aside, > I started on Diamox yesterday, what a rollercoaster ride this may be. Bizarre responses to exercise, diuresis, weird tremors and feeling off the planet . > R > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2007 Report Share Posted November 16, 2007 I have looked at the site you list below and I can't find the item on Intracranial Pressure - can you tell me where you found it? I have a friend who has attempted suicide because of this kind of Pressure, and we can't seem to find out much about it. Thanks you. Glen from NJ [ ] Intracranial Pressure Hi Im a bit worried about my partner, he took a few days abx (2x250mg) azithro and then after that a few days penecillin (worked up to 3x250mg). He has developed a blistering headache and has had night sweats for 2 nights in a row so that he had to change clothes and his vision is slightly blurry. I read on Dr Jemsek's website about Intracranial Pressure (www.jemsekspecialty.com) and I'm wondering if the symptoms are this. If this is the case, is it better to let it go away on its own, or should he see a doctor? How much of a headache do people normally put up with on Abx treatment? Are they the worst headaches you ever had and do they go on for days or weeks? Thanks for your help. Lara x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2007 Report Share Posted November 17, 2007 Thank you DO much for this response. From what I know of her; this " pulling and pressure " as she describes it, is present to some extent most of the time, but is ALWAYS worse when she takes abx OR ingests anything at all that could cause the kill-off or even reaction or disturbance of the foreign organism(s) she is hosting. The ONLY suggesting that was ever given came from Dr. who has treated young people who have Lyme with Diamox to relieve this kind of Intracranial Pressure...but those who treat her where she is refuse to administer this or even take a look at the suggestion of using it. They at this Care Center are also going nothing what-so-ever concerning her Lyme disease. She is on a huge amount of psych. drugs and enough pain medication to sink a rather good sized elephant - (all of which are causing their own very noxious side effects so that it is even difficult to know if her symptoms/behavior stems from her illnesses or from the drugs present in her system). She has had a history or REFUSING to take any abx or even supplements because she has such fear of the head pressure. Now many who treat her are going by the hypothesis that all of this is a manifestation of a severe psychological illness. Thank you again. To read this does not surprise me, especially in her case. Glen from NJ. [ ] Re: Intracranial Pressure Hi Glen I am so sorry to hear about your friend. Did she only get this reaction on antibiotics or was it one of her lyme symptoms? It comes from very serious CNS involvement so I've read - perhaps IV antibiotics would help it I don't know. Here is the link: Regards Lara http://www.jemsekspecialty.com/lyme_detail.php?sid=10 Section 10: The Herxheimer Reaction Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2007 Report Share Posted November 18, 2007 To all Lyme Patients: Please look into DIAMOX which is a diuretic that has the effect of reducing intracranial pressure. After years of Celebrex, we found it more effective and much safer. This was recommended by a pharmacist and father of a Lyme patient. > > Thank you DO much for this response. From what I know of her; this " pulling and pressure " as she describes it, is present to some extent most of the time, but is ALWAYS worse when she takes abx OR ingests anything at all that could cause the kill-off or even reaction or disturbance of the foreign organism(s) she is hosting. The ONLY suggesting that was ever given came from Dr. who has treated young people who have Lyme with Diamox to relieve this kind of Intracranial Pressure...but those who treat her where she is refuse to administer this or even take a look at the suggestion of using it. They at this Care Center are also going nothing what-so- ever concerning her Lyme disease. She is on a huge amount of psych. drugs and enough pain medication to sink a rather good sized elephant - (all of which are causing their own very noxious side effects so that it is even difficult to know if her symptoms/behavior stems from her illnesses or from the drugs present in her system). She has had a history or REFUSING to take any abx or even supplements because she has such fear of the head pressure. Now many who treat her are going by the hypothesis that all of this is a manifestation of a severe psychological illness. > Thank you again. To read this does not surprise me, especially in her case. > > Glen from NJ. > Quote Link to comment Share on other sites More sharing options...
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