mezombie (bppv)

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Feb 6, 2007.

  1. Slayadragon

    Slayadragon New Member

    I was reading your bio and noted the part about the vertigo. I don't know if you've read the post below, which I wrote in September, but I thought I'd give it to you anyway.

    This is by far the scariest thing that has happened to me throughout my illness. If this is what you have, I absolutely can see why you're in such bad shape. I would be totally unable to function _at all_ if I hadn't managed to get rid of it.

    Let me know what you think.

    Best, Lisa


    Okay, here's my story.

    In 1995, I was learning to ice skate and fell down on the back of my head. I lost consciousness briefly and went to the emergency room. They took an X-ray of my head and then sent me home (actually to my hotel).

    The next morning I woke up and the room was spinning around violently. I vomited several times. I went to the emergency room and they did a CT-scan of my head. They said they didn't find anything of significance, gave me some kind of anti-nausea drug (can't remember the name....very exhausting to take) and sent me away.

    After about a day, the nausea went away. I had other aftereffects from the head injury (loss of concentration, anxiety, etc.) but no more vertigo or nausea.

    A couple of years later, I went to an osteopath, who did some cracking stuff on my back (including my neck). The next day I got the same symptoms as I did right after the head injury. I called the osteopath and he blew me off (said something stupid like "you must be going back through it"). I took a bit more of the stuff that they had prescribed at the hospital right after my head injury. By the time the one dose of medicine I took had worn off (in several hours), the vertigo was no longer present without it.

    A couple more times over the next eight years, I had some episodes where the room felt like it was spinning around. (One time was after a violent sneeze; I'm not sure what could have prompted the others.) The sensation lasted for only half an hour or so when I was in certain positions, and I didn't have any vomiting.

    About three months ago (12 years after the head injury), I happened to be out of town. I noticed that the room started spinning and that I felt sort of nauseated when I held my head in certain ways. It wasn't debilitating, just sort of unnerving.

    The day afterwards, the room started to spin around violently and I vomited several times. This continued for hours. Remaining in a specific still position in bed stopped it temporarily and for the most part (i.e. I was still feeling a little spinning but not enough to make me vomit). However, as soon as I would roll over even a bit (much less get up), it started again.

    I was by myself and didn't especially want to call an ambulence to take me to the emergency room (that seemed sort of drastic unless I really had no alternative), and so I tried to consider what the problem might be and how I could fix it. My first thought was that maybe it was an infection of the inner ear and that some decongestant would help. I happened to have some Sudafed with me, and so I took some of that. Within a short time, things became much, much more stable. I still felt a little queasy when I held my head in certain ways, but was okay enough to get to the emergency room on my own.

    There I met a very nice and extremely smart doctor who said he had attended a seminar on this topic at a medical conference about six months earlier. He examined me and then had me do some lying down/sitting up exercises while he looked at my pupils to see if they reacted as they do in BPPV (I think by flashing or something?). They did. He then told me about BPPV, including about how crystals dislodge in the inner ear and cause imbalance.

    I mentioned how much better I felt on the Sudafed, and he said he thought that I had a sinus infection that was pressing on the inner ear, making the symptoms much worse than would be with just the crystals. I've had sinus iinfections numerous times in the past, and so that made lots of sense to me.

    He then showed me how to do the exercises mentioned in that article and gave me some Antivert (meclizine). The Antivert (especially mixed with the Sudafed) worked pretty well, and I got home.

    Except for one time, all my sinus infections in the past have been caused by yeast. Antibiotics (and an antibiotic cream that my CFS doctor cooked up) did nothing or made the problem worse. Diflucan (an antifungal drug), on the other hand, invariably relieved my symptoms within one day. (The symptoms were primarily extreme sleepiness and fogginess, along with a large amount of postnasal drip and some sinus pressure/headaches.)

    I made an appointment with my CFS doctor and in the meantime decided to try taking the Diflucan (100 mg) on a daily basis. The vertigo symptoms remained with me (except when I was taking the Antivert and/or Sudafed) until about a day after I started the Diflucan. After that, I occasionally had a spell when the room would spin a bit (especially when I lay down or sat up quickly in a particular way), but there certainly wasn't any vomiting. After a couple of weeks, the symptoms died down to the point where I sometimes was getting a little bit of vertigo, but not anything that was worth mentioning.

    I stayed on the Diflucan for one month. I did the exercises that the recommended sporadically. Since stopping the Diflucan, I haven't had any symptoms to speak of.....just a little bit of unevenness if I move into the wrong position to quickly, on an occasional basis (a couple of times a week). I recently made a list of the health problems I currently was experiencing, and didn't even remember to put this on the list because it has been so slight.

    It was extremely lucky that I tried taking that Sudafed (even if it was for the wrong theoretical reason) and happened upon that wonderful doctor in the emergency room. (My CFS doctor might have come up with the answer on his own, when I eventually got to see him, but I'm not sure of it.) I realized that BPPV could be a totally debilitating disease to have over a long period of time, even if it was in a milder form than what I experienced. I was pretty scared that one awful day, both because I didn't know what was causing it and (more importantly) because I would have been totally incapacitated if it had continued. Probably some people do remain totally incapacitated with it over weeks or months (or even years). I can't imagine how horrible that would be.

    P.S. Since, writing this post in mid-September, I talked to Dr. Guyer about the problem. He said the following:

    1) Yeast can grow into the inner ear. Thus, this problem can occur even without the crystals being dislodged.

    2) Sometimes patients have Diflucan-resistant yeast. This is especially true if they have used a lot of Diflucan in the past.

    3) If I have a problem like this again, he is going to order a compounding pharmacy to create an ointment that has ampotericin-b in it. Ampotericin-b is good at getting rid of resistant yeast. The ointment would be applied to the inside of the nostril with a Q-tip. (This would be invented just for me, but he is confident it would work.)

    4) A bacterial sinus infection could press on the inner ear and make crystals problematic too. If my infection were bacterial, he would order a similar ointment with an anti-bacterial in it. I previously did use such an ointment that he ordered up for a bacterial sinus infection. It worked quite well, without causing yeast to erupt in the rest of my system as an oral antibacterial would. (Note: bacterial sinus infections often can be spotted on lab tests. Fungal sinus infections usually cannot be spotted on lab tests.)

    4) Colloidal silver nasal spray might help at least somewhat with either kind of sinus infection.

    5) Avoiding this kind of infection requires one to be fastidious about keeping yeast out of the digestive tract. (His recipe for this is no sugar or flour; 40 billion probiotic organisms per day; as much vitamin C as the bowel can tolerate; herbs such as oregano oil; and colon hydrotherapy to make die-off easier. Nystatin or ampotericin-b may be used if absolutely necessary.) This will not relieve sinus infections very well, but will keep them from occurring in the first place.

    My own comment: ampotericin-b in capsules is readily available in capsules from compounding pharmacies. I would imagine that you could make your own ointment for nasal use (applied with a Q-tip), just by mixing the powder from the capsules with some vaseline.

  2. Slayadragon

    Slayadragon New Member

  3. Slayadragon

    Slayadragon New Member

  4. mezombie

    mezombie Member

    Hi there, Lisa,

    Thanks for taking the time to look at my bio and considering what might be causing some of my symptoms.

    I had a bad flare -- migraine and flu symtoms-- yesterday, which is why it's taken me so long to get back to you.

    I'm currently having an unusully difficult time with reading, so I've printed out your e-mail as well as everything on the website you referred to.

    I will try to respond in more detail when I can get through all of that information.

    In the meantime, I can report this:

    My neurologist referred me several years ago to one of the so-called "best" physicians dealing with dizziness and related problems. This doctor tested me extensively for supposedly everything, including BPPV. He performed the Dix-Hallpike test and used Frenzel lenses (both are referred to as diagnostic tools on the BPPV website) as part of his workup.

    His conclusion was that my visual motion sensitiviy is due to vestibular migraines.

    Treatment for vestibular migraines is the same as for regular migraines. As I've already gone through every migraine medication on the market and now only get relief from my migraines from Botox injections (which do not help with the visual stimulation problem), this is not exactly a helpful Dx. My neurologist also is a bit suspicious about the Dx, as I was the fourth person in a row he referred to this "expert" who came back with a Dx of "vestibular migraine".

    I'm not at all sure I fit the profile for BPPV, even if I was misdiagnosed. My symptoms are different, and I didn't have the type of reaction you did to the physical maneuvering used to detect this problem. I also never had an ear infection. I punctured my ear at one point after the neuro consult, and received a very thorough ENT exam. There was no sign of infection. I have tested negative for yeast. I don't have sinusitis, either.

    I've tried Antivert. Unfortunately, it doesn't help.

    My neurologist would like to explore the possibility of perilamphatic fistula, which is a tear in a part of the inner ear. To diagnose this, I would have to undergo surgery of the inner ear. That's just to diagnose! I've been warned by vestibular rehab specialists that the exploratory surgery itself can cause even more symptoms, and even if a tear is found, surgery still does not solve the problem and often makes it worse. This is the one thing my neuro and I disagree on.

    But hey, the exercises on that website look easy enough to do, and may help. I also found some other exercises that I really should try. And I really need to get my strength up to find someone else to give me a second opinion!

    I appreciate your concern.

    Warm regards,
    Your local Zombie
  5. mezombie

    mezombie Member

    I hope you see this.
  6. Slayadragon

    Slayadragon New Member

    I had no idea until I read your bio that you have this vertigo thing. Having experienced just a tiny bit of it myself, I honestly don't know how you can stand it. Everything else I've ever gone through pales almost totally in comparison.

    I feel really bad and wish I could help you, and have been trying to figure out what this might be. The fact that you've seen Dr. Cheney and a variety of specialists in this area makes it seem unlikely that I'm going to hit on anything, but I've been thinking about it nonetheless.

    I suppose you have read the book "Chronic Fatigue Syndrome: A Treatment Guide" by Erica Verrillo and Lauren Gellman? It's about a decade old, but it has more in it about weird CFS symptoms than anything else I've ever seen.

    It brings up a whole bunch of explanations for vertigo-like symptoms, including:

    * Viral labyrinthitis---or more specifically, a viral infection called "endolymphatic hydrops." It says: "Patients with this condition are unable to adjust to the difference between what they are seeing and what their inner ear is telling them about their balance. They may feel their bed is on its side and clutch it so as not to fall off, even though they can see it is upright." Did your vertigo get better when you took the acyclovir? (Of course, it could be a non-herpes virus, meaning that herpes AV's wouldn't help.)

    * Seizure activity. Flickering lights, television, excess stimuli of any kind, and emotional upsets are listed as possible triggers. This sounds possible since Klonopin has a mild anticonvulsant effect and seems to be of small help to you. If your CFS was preceded by a head injury (as is the case with many people, including me), this is a more likely possibility. (Often seizures don't show up for a while until after head injuries, I believe.) I'm not sure why typical anticonsulsants (Lamictal, Depakote, etc.) aren't listed in this book as a treatment though. Have you ever used an anticonvulsant?

    * Sensitivity to rapid eye movements. This seems another viral problem, although there's an eye movement desensitization protocol that is said to help.

    * BPPV doesn't really sound right, if head movements don't cause problems. That seems to be the hallmark of that disease.

    * I'd like to suspect yeast since it's a neat and tidy explanation, but you've kind of talked me out of it. Still, it might be worth a bit more consideration.

    I believe there are a lot of buried sinus infections that people don't find. I wish I knew more about the inner ear....are we sure that people could find fungus in it? I've had a lot of fungus in my sinuses that nobody ever seems to be able to find. (Obviously it was fungus since Diflucan cleared it up immediately. I've never been suggestible with any other treatment, and so I don't know why I would have been with that one.)

    And if it were _just_ yeast, the head movements wouldn't be an issue. There wouldn't be crystals rolling around in your inner ear.....just yeast pressing up against it, all the time.

    Did you ever try Diflucan for a while? If it were fungus, and you've not taken a lot of Diflucan for other reasons, it probably would clear it up really fast (i.e. within a week). Unlikely based on everything you've said, but (since you have little to lose) possibly worth consideration.

    * I'm sure you'd know if the small amount of Sinequan you're taking were responsible. The NMH you've addressed, and anyway wouldn't be triggered by flashing lights.

    * The fact that the book lists allergies makes me think of my #2 suspect when it comes to weird symptoms, food allergies.

    Now that I think about it, this is an interesting possibility. The problem with saying that it's a "vestibular migraine" is that it hasn't helped you. And migraine headaches are _caused_ by something, even if we don't know what the cause is.

    For instance, my husband grew up in Taiwan and had migraines on a regular basis. Everyone attributed them to anxiety, since he would tend to have them before school exams and at other important times.

    After he came to the U.S., he had the migraines less frequently, but they were still problematic. The last time he had one, I noted that he had eaten a huge bag of Japanese crackers the evening before. The ingredients said that they had MSG. This made me start thinking that he undoubtedly had consumed a whole lot of MSG in Taiwan (he mostly was in boarding schools), and still occasionally did here (since he was inclined to packaged Asian foods even though he ate a lot of other things). So I forbade the MSG. No more migraines.

    Of course, my husband is _very_ suggestible, and it's possible that my informing him that I had a solution kept him from having them by itself. Still, I've read various places that MSG (as well as other foods like chocolate and red wine) cause migraines.

    This makes me wonder if some other food could be causing your migraines and related symptoms. The elimination of food allergies made a tremendous difference in my own well-being, and I just read that at least 50% of CFS patients suffer from them. (My guess is that the number is higher than that.) Again, when weird symptoms appear in CFS patients, I first suspect the classic problems that most of us suffer from. Yeast and food allergies are at the top of the list.

    Unfortunately, of the stuff on this list, the viral explanation seems the most plausible.....especially if the Acyclovir helped with that particular symptom. Did you stop taking the acyclovir, or did the positive benefits just fade away?

    Still, if you haven't done this, trials of Diflucan (etc.) and an anticonvulsant might be worth a try.

    Great Smokies does a food allergy panel that my doctor believes is pretty accurate these days. I just had one done, and will be finding out the results in a couple of weeks. I will see how well it corresponds to the one I had done a long time ago and the foods that I've subjectively and through pulse testing found to have an effect on me.

    "The Pulse Test" by Arthur Coca M.D. is an older book, but I've found it to be quite useful. In particular, it identified corn as a problem for me, which the blood test I had done at the beginning of my illness did not. Since corn makes me very depressed (and since I used to eat large quantities of it), I am grateful to have figured that one out. My CFS doctor says that the test method can give false negatives (i.e. you're allergic to the food but the test says not) but that its positives are pretty accurate.

    In your case, it sounds like you're having migraines on a regular (maybe even daily) basis. If a food allergen is causing the problem, it would have to be something you're eating on a regular basis. In that case, it would be easy to eliminate the foods you eat most frequently from your diet one at a time to see if you got any change. (It could be that more than one allergen is causing the migraines, but it seems more likely to me that one particular thing would be doing it.)

    Probably a week of not having a food would be enough to tell what kind of an effect it's having. (As with most CFS treatments, feeling worse for a while means that you've stumbled on something significant.) In your case, I'd be careful to avoid even a touch of the food while you're testing though (e.g. even a little corn syrup if you're testing for corn). If this is a food allergy, you must be really really sensitive to it, and so even a little bit could be doing you in.

    I hope I'm not coming across as too pushy or whatever. Again, you've had really good doctors, and so probably you considered all of these possibilities (and many others) long ago. It's just that I feel really bad for you and wish that this problem could be solved. CFS is bad enough on its own, but this thing sounds like a nightmare.

    If you have addressed all these things already though, let me know. Maybe if I spend a bit more time, I'll be able to come up with some other possibilities.

    Best, Lisa

    [This Message was Edited on 02/09/2007]
  7. mezombie

    mezombie Member

    Hi, Lisa,

    I haven't forgotten about you!

    Right now I'm trying to preserve my energy to actually go "out" this weekend. That means I need to do as much resting and as little thinking as possible at present.

    You have some interesting thoughts on this matter. I will definitely respond when I can. Remember, it's visual stimulation, such as what I'm putting myself through right now as I type this, that's most likely to trigger the so-called "vestibular migraine".

    I hope you understand the reasons for my delay in responding.
  8. Slayadragon

    Slayadragon New Member

    Well, flickering lights make me immediately think seizures.

    I learned this a very long time ago, when I was thinking of trying out a gadget sold at Shaper Image to see if it would reduce my husband's anxiety. It had lights that flashed on and off in certain patterns and that were supposed to push the brain into a more relaxed state (alpha? theta? something like that).

    By the time I got to the store, I found that they had recalled it due to a small chance that it might cause seizures. I was taking Lamictal at the time for my manic-depression (which followed a concussion), and so I found that interesting.

    (Later on, I was observing my husband's anxiety "attacks" and came to the conclusion that they were pretty similar to m-d too......extreme hyperactivity due to anxiety followed by collapses during which he would do nothing. I got him to try Lamictal, which worked quite well at keeping the problem at bay. He had a serious head injury when he was a child. Anyway, I guess it's good that I didn't get the Sharper Image gadget for him.)

    The stuff in my note above suggests that TV etc. can prompt seizures as well. So maybe that's a particularly likely thing to consider.

    i wouldn't put anything past viruses though. And food allergies can have much weirder effects than you ever could imagine. (Obviously there would be an interaction effect between the visual stimulation and the allergy.....but most health problems are interactions.)

    Candida growth into the inner ear, probably a lot less likely. Possibly still worth considering.

    Certainly there's no reason for you to write back within a certain time frame. Take it easy and do what you can to be well.

    Best, Lisa

  9. Slayadragon

    Slayadragon New Member

    Bumping for stovetop
  10. monicaz49

    monicaz49 New Member

    So is it candida or cfs? Do we treat with diflucan or experiment with an antiviral?
    Im off balance and dizzi 24/7 among other things. I have nystatin but was told yeast isnt possible to get unless you have an issue like hiv or something. Thats what my doc said.
    They said they dont have a test to check systemic yeast.
  11. Slayadragon

    Slayadragon New Member

    I don't know what problem you have. I'm just presenting information on what you _could_ have, which is all that's appropriate to do online.

    And, um, yes......many or most of us on this list do have "an issue like HIV or something."

    The "something" is CFS.

    I will bump a post called "Controlling Yeast" for those interested in reading about the topic.

    Best, Lisa

    [This Message was Edited on 02/15/2007]
  12. mezombie

    mezombie Member

    Please accept my apologies for taking so long to finally ponder and respond to your comments. I’ve had migraines most of this week, and one of my doctors is closing her practice, so it has been a bit of a difficult time for me.

    I think you suggestion that seizures may be at issue could be right on target. Erikmoldwarrior suggested googling “Photosensitive Epilepsy” on another “dizziness” thread. I did, and I swear what I read described my situation better than any other possible diagnosis I’ve come across. And you’re right, it could easily explain why the Klonopin helps. Anti-seizure medications are prescribed for this condition. If I could just adjust the Klonopin dosage, taking small amounts several hours apart, that may even do the trick. I have an appointment with my neuro two weeks from now, and will e-mail him some medical articles to peruse prior to that. This could be it! I fervently hope so. I did try Depakote, but I think that was for the migraines. I had to discontinue for some reasons. I’ll definitely check my notes to figure out why. Of course, I would prefer to fiddle with the Klonopin rather than add yet another drug to the chemical stew in my body.

    I still suspect that the underlying cause is a virus. These symptoms showed up at the same time all my others did. I don’t remember if they got better when I improved on the Acyclovir, but I assume so because the improvement was global. Unfortunately, despite continued use, the benefits of the Acyclovir subsided until I was back to where I started from. Dividing dosage and trying to boost it didn’t help. I tried it again several years ago, with no effect. I’m a bit worried that I may now have an Acyclovir-resistant strain of virus in me. Yipee.

    You know, the Verillo and Gellman book is one of the few I have not read. I will definitely check it out. I know I’m not the only person who has CFS and this type of problem. By the way, it is less dizziness than disorientation, I think. I’ve had vertigo, and this is different. I remember coming out of movie theaters to find that the floor was on the ceiling and vice-versa. It was he**. My problem is lingering photosensitivy, nausea, and disorientation, in that order.

    As to yeast, I was tested for it at Great Smokies and several other labs over the years. The tests results never were the same: sometimes negative, sometimes slightly positive. I was put on Diflucan for about six weeks. The stuff nearly killed me. I think you’re right that yeast is something to explore and treat with diet and kinder, gentler nutritional supplements! Unfortunately it’s difficult for me to cook, because even moving around the kitchen brings on the symptoms were discussing.

    Luckily, I don’t have any major food allergies. Again, I was tested at Great Smokies and other labs. At least one test was a RAST test; I can’t remember at the moment what that stands for. That one did show a moderate sensitivity to tomatoes and corn. But frankly, I don’t eat either one of these foods that often because I find I don’t digest them well. However, they don’t make me feel “sick”. By the way, I do rotate my foods all the time. This is easy as I get bored eating the same thing all the time! I also eat lots of fresh veggies and fruits, which I’ve always loved. So I think I’m doing everything I can on the diet front as well.

    My migraines: They started when I reached 18. I have spent a lot of time and energy looking for triggers. Wine and chocolate, all the other well-known triggers, aren’t the cause for me.
    Apparently, this is not unusual. Changes in the barometric pressure often bring them about, as does low humidity when I’m heating my condo.

    You mentioned Sinequan as a possible trigger for the vestibular symptoms. I’m only taking 20 mg at bedtime, but I will ask my neuro about this, as well.

    Thanks again for your thoughts on this problem. And do google “Photosensitive Epilepsy”! It’s a real eye-opener (no pun intended).

    Take care,
    Me (thinking of strangling all those doctors) Zombie
  13. mezombie

    mezombie Member

    How sweet of you to share your thoughts on this matter! I've been following your Valcyte saga with great interest.

    So you ended up with the Dx of "virally induced vestibular neuritis"? That's very interesting. I responded wellto Acyclovir for a brief period of time, so I know there's some viral activity involved in my case.

    If you read my post above to Lisapetrison, you'll see that I'm very intrigued by the possiblity that I have "Photosensitive Epilepsy", an idea Erikmoldwarrior came up with on another thread.

    You mention that there are several drugs that calm the vestibular system. Antivert didn't help me either, nor, unfortunately, has Phenergan. What other treatments did you try? I'm not going to assume my neurologist knows of them. I've been to three neurologists, and they all specialized: one in strokes, another in MS, and this one in pain. However, he is very open to any suggestions I have. If you could give me the names of some of the drugs you tried or were offered, that would help. Otherwise, I no doubt will be referred to yet a fourth neurologist. What fun.

    So the Valcyte got rid of your vertigo? That's wonderful. I would like to try it someday. Right now I really can't afford to go through the "herx from he**" as my support system is already stretched. I'm at about 30% of my former self (and that's only because I have people already helping). I'm quite sure I'd be bedridden and in need of 24 hour care if I went on Valcyte.

    By the way, I also read that Laura Hillenbrand has vertigo (though apparently not photosensitivity as she wrote Seabiscuit). I assumed it was neurological, but hadn't read that. Where did you find that out?

    Thanks again for taking the time to add to this thread. I hope you continue to improve on the Valcyte. You are one of my heroines for taking it!

    Take care,
    The Zombie
  14. Slayadragon

    Slayadragon New Member


    I read once that Laura Hillenbrand (sp?) wrote much of the Seabiscuit book by hand with her eyes closed because of the vertigo.

    This was in some mainstream article, not one having to do with CFS in particular. My thought at the time was that it seemed like she must have been really compulsive, to go through that in order to write a book about a horse.

    On the other hand, I guess if you're going to spend your life with your eyes closed and have at least part of your mind left, using it to write about a horse seems as good an idea for what to do as anything. And she did make a lot of money to support herself as a result.

    Upon reflection, this may be significant. One would think that she would have enough resources to have pursued all possible treatments for that particular component of her illness by now and perhaps gotten it under control.

    If you could find out what she's done, perhaps it would give you some ideas on how to proceed. I would imagine that she'd be willing to share if you were to contact her.

    I will respond to the rest of your posts later.

    Best, Lisa

    [This Message was Edited on 02/16/2007]
  15. mezombie

    mezombie Member

    The last I heard, she was still dealing with the vertigo. I believe she's a patient of an internist who is sympathetic to CFS, but certainly not cutting edge. His emphasis is on pacing. I hope Laura is learning to do this. She really collapsed after writing her book. I understand she's working on another one now, hopefully at a slower pace with her health in mind.
  16. mezombie

    mezombie Member

    I read Laura Hillenbrand's New Yorker article, too. Did you know she won some national award for best essay of the year for that? It doesn't surprise me. She really is an excellent writer. I've read absolutely everything written by her and about her. She did a terrific job speaking out on our behalf when Seabiscuit was published and when the movie came out.

    I agree that her vertigo sounds absolutely awful. I call what I have "dizziness" because I feel unsteady, not that everything around me is moving. And the unsteadiness only appears after it's triggered by visual stimuli. In other words, it's not constant, and I can avoid or minimize the triggers.

    Ironically, using this message board often triggers the mess. On the other hand, it is so useful for the information and support it provides. It also makes me feel good when I'm able to help someone else.

    I have tried every migraine preventative on the market. None worked, or I wasn't able to tolerate the medication. Topomax made me very sleepy. I've also tried the anti-seizure drug Depakote, but had to stop that for some reason as well. The only thing that works for my migraines at this point are Botox injections.

    I tried vestibular rehabilitation at a local hospital, but couldn't get to the twice-weekly appointments because of the CFS. They considered me an "uncooperative" patient, even though I, not my doctor, suggested this treatment! I also tried vision therapy. That didn't seem to stick,either.

    There are some exercises called Cawthorne-Cooksey which I really could and should be doing at home. They appear to be best suited to my situation. I suspect I'll find more balance exercises online that I can also do without leaving my home. Thanks for the reminder.

    It is light that I am most sensitive to, especially any flashing or flickering light. That includes fluorescent lights. They actually do flicker. It's imperceptible to most, but my brain notices it! The same goes for TV and computer screens. I now have an LCD computer screen, and that has made quite a difference. I also use light blue glasses a lot (like right now!).

    I suspect my doctor will want me to do an EEG. When I googled "photosensitive epilepsy", I came across something that suggested a specific type of EEG that includes visual stimulation. That makes sense to me. I had an EEG done while reading, responding, calculating, etc. many years ago. It documented my cognitive problems.

    If I'm going to get an EEG, I want it done right!
  17. mezombie

    mezombie Member


    I think we may have different triggers for our symptoms.

    I came up with the link between my migraines and barometric pressure changes long before I got CFS. I've had migraines since the age of 18. I think what happens in winter is that I get more dehydrated, and that can easily trigger a migraine. If I diligently drink lots of water during the day, I'm less likely to wake up with one the next morning.

    Now the pattern of my migraines changed with the CFS onset. They were more frequent and painful. Now, they are still very frequent (unless I get Botox injections), yet not as painful. They actually respond to Excedrin Plus (really just an aspirin, tylenol, caffeine combination). But daily use of that is not good. It can cause rebound headaches. I am definitely due another Botox session!

    I am so sorry that you are so sensitive to mold and other mycotoxins. Is there anything (other than retreating to your RV) that helps you? I noticed your a fan of Dr.Ritchie Shoemaker. Any luck with him? I took his online neurotoxin test, and passed with flying colors. I was actually upset, because I was so sure that was the culprit! Then it would just have been a question of trying his treatment.
  18. Slayadragon

    Slayadragon New Member

    I'm not sure that it's an either/or thing when it comes to epilepsy and viruses. Maybe it could be both?

    There is a very fine line (if any) between the "agitated exhaustion" of CFS and the "mixed states" of rapid cycling manic-depression, for instance. And of course, that kind of manic-depression seems to be an caused by seizures of the frontal lobe, since it responds to anti-seizure medications.

    One of my doctors says that CFS patients seem to respond to Lamictal. Forebearance says that it has mild anti-viral qualities, which could be part of it. But the anti-seizure action could be the other part.

    Then there's the idea that the unidentified bright objects in MRI's appear to show up in two groups---manic-depressives and CFS sufferers. That suggests that there are similar causes too.

    (I am more suspicious of Cheney's idea that those problems on the MRI's are caused by small strokes. When I used Provigil, my brain functioning became _entirely_ normal---if only for one day---which suggests that permanent brain damage had not occurred. The fact that AV's improve brain functioning also suggest that brain damage is not permanent.)

    I'm afraid this is not very clear. My brain is not entirely functional at the moment.

    Anyway, I kind of doubt you're going to be able to take enough Klonopin to take care of true epilepsy. Its anticonvulsant properties are pretty mild, and obviously you can't take too much of it.

    There are certain people on the board who have not been able to take Lamictal, but I've found it to be terrific. I'm pretty sensitive to drugs mother says I always have been. The only drugs (prescription or OTC) that I've ever been able to tolerate in my life without side effects have been Lamictal, Klonopin/Xanax and Moclobomide (an antidepressant made by Roche that is available in every country in the world except the U.S.). It's relatively mild, but I'm not sure that your convulsions are that severe. Just frustrating.

    If you were to take Lamictal though, I would think you might want to go _really_ slowly with regard to increasing the dose. This is the protocol required by the manufacturer anyway, but if you're sensitive to drugs, going twice as slow might be a good idea.

    There's a very small chance that a deadly rash could occur from the drug, but this has been reported almost solely when it's taken in conjunction with Depakote and fades to basically nothing if the drug is titrated up slowly. The rash is not deadly if the drug is discontinued when the rash first appears, too. Anyway, the drug occasionally---at least amongst some CFS patients---has other side effects, but these are much reduced with very slow titration too.

    This makes Lamictal sound really dangerous, but it's a great drug if it's tolerated. I know at least a half-dozen people on it in my real life (and I don't talk to people much about drugs). My psychopharmacologist really likes it too.

    I can see why you might have had problems with Depakote though. It's a pretty toxic drug even for "normal" epileptic or manic-depressives.

    As for Laura Hillenbrand.....I would think she would be getting top-notch CFS treatment, but it seems not. Money is much less a barrier to getting treated than lack of self-efficacy and/or priorities, I guess.

    I recall thinking when I read that article that the reason that she was so sick was because she worked too hard on that horse book, and that she was a good example of why I shouldn't push myself too hard. it's too bad that she hasn't resolved the vertigo problem though.

    Anyway, it sounds to me like epilepsy and/or viral problems are prime suspects for you. And this is a good thing, since there are drugs that can fix those problems (even if you're not ready to take them). Ten to fifteen years ago, that would not have been the case.

    I would be really glad for you if you can get this fixed. It does sound like a pretty awful way to live your life.....especially since, like me, your natural inclination is toward academic study.

    Best, Lisa

  19. mezombie

    mezombie Member

    You've all added a lot of good information and ideas.

    I'm resting up so I can go out and have a little fun tonight.

    I'll respond tomorrow individually to you tomorrow, hopefully.

  20. Slayadragon

    Slayadragon New Member

    BTW, have you ever had a head injury?

    I had only a very small amount of mild bipolar (cyclothymia) until I had a head injury at age 30. (I got the CFS a year later, undoubtedly partially because of the stress to my system due to the injury.) Obviously epilepsy often stems from head injuries as well.

    Not that it matters (epilepsy can be idiopathic and, it seems, possibly viral as well), but I'm still curious.

    Also, did you start getting the migraines before the CFS? And did they always have the photosensitivity component?

    Best, Lisa