FWIW my MM (really MAV, I think) was/is caused by two long term infections (both bacterial) that defied all attempts at identification. During this 10-20 year period, these were pumping my system with toxins (which are proteins), and my body would try to store them away (sequester the protein). Now that I have both infections "cured" (no active infections as far as I can tell), I'm dealing with the long term damage and also with trying to rid myself of toxins. So far I have identified fat as one way the body sequesters toxins, if you've got bad toxins, the immune system uses cholesterol to sequester the proteins. But the body will eventually try to release these toxins back into the blood stream during times when you're exercising or dieting. So, if exercise or low-calorie diets make you sick, it's not in your mind. I hadn't hear the term "sequestered proteins" until I saw June post it. I've googled it and apparently I've got lots more to learn. Thanks June! While I think my gut infections were primarily responsible for the MAV symptoms, I also think it was the perfect storm of the dental infections that caused everything to go to hell. For those of you who haven't been around more than five or six years, I missed 35 sick days from work in 2009, many more when I would have vertigo attacks in the office, and then those days where the brain fog was such that I was practically worthless anyway. I haven't had regular vertigo since 2010, but every once in a while I'll stir up the toxins and still get some, but it's been months since I've had one (knock on wood) and usually if I feel it coming, I'll stick a meclazine under my tongue and lay down for a while). Dealing with the toxins, I still have moderate-severe tinnitus in my left ear, my right ear is A-OK. Every months or so, I may have a few blessed minutes with no tinnitus or hearing loss in my left year, but they're not often enough for me. I'm able to work most of the time as long as I follow the detox protocol that my PCP and an integrated medicine doc at Duke. My main issues these days are fatigue and periodic difficulties with concentration and other cognitive issues. Manageable as long as I follow the detox, worse when I forget.
If this were the case, then why is Meniere's hereditary in some people? (not saying it's impossible, just a question) "About one in three patients with Menieres disease have a first-degree relative with Menieres disease. In theory, hereditary predisposition might be related to differences in anatomy of fluid channels within the ear or differences in immune response (see later).Sep 20, 2015" Dr. Timothy C. Hain http://www.dizziness-and-balance.com/disorders/menieres/men_eti.html
I didn't know that Menieres is heredity. In fact, I think I was told is wasn't. Is it?mis there any research on it?
Consider this - it may be "hereditary", not in the genetic sense, but in the gut flora that is passed from mother to child during birth and breast feeding. My Mom had MM, and I figured out later she had severe signs of a systemic yeast infection. Perhaps it's the gut flora (or skin flora?) that a Mom passes on to the child. Anybody here with MM also have a Dad with MM? What about a Mom?
^ I really need to add the disclaimer that term Menieres is a highly technical term which means (in laypersons' terms) "We don't know what you have". Plus, I'm not a doctor, nor did I stay at a Holiday Inn Express recently. In the couple of years I spent here earlier (2009-2010), I'd get all excited that I'd figure it all out, only to learn that everyone here has different causes and what would work for me wouldn't work for everybody. Alka Selzer Gold, for instance. It helped some, didn't others. What I experienced is MAV. I'm betting a lot of people with migraine have similar issues, but other people have head pain and we get vertigo. If you think you have MAV, some of this may be of interest to you. Many folks here have been helped by anti-virals. They didn't help me, but there are a lot of stealth infections a person can have, viral, bacterial, whatever. Once your immune system gets over-loaded, it starts doing weird things. Like June said, a perfect storm. Gut dysbiosis and dental infections are very common. So are viral infections. Some people have wonky gall bladders, others have lyme or brucellosis. It was SoCalCyclist who put me on to the idea that it might be diet related. I didn't think it made any sense at all, but I was pretty desperate so I tried cutting wheat out of my diet, and two weeks later was much improved. Alas, if your gut is damaged, whatever you eat the most of usually turns into a trigger, so every time I'd cut out a food, I'd feel better for a week or two before the symptoms returned again. The idea that a yeast overgrowth in the gut could cause migraine was taboo in 2009. I found a good doctor who treated it, but it was sort of hush-hush, treat for food allergies. Then in 2013 I started seeing an integrated medicine doc at Duke who proudly advertises that they treat leaky gut. How much difference four years made in what doctors are allowed to treat. A year of anti-fungals and metro to knock out the yeast and clostridium, with a restricted diet and more probiotics than you could imagine, in every form, at every meal. Probiotic capsules, yogurt, kefir, live-culture sauerkraut, live-culture beets, live-culture kimchi, along with supplements (lysine? I'll have to look it up). I also took some biofilm busting supplement. I don't know if the biofilm buster helped, but they certainly didn't hurt. The thing is, if you have a yeast overgrowth in the gut severe enough to bring you to menieres.com, you've also probably got a systemic yeast infection, so you're probably past the point where improving your diet and taking probiotics can turn your health around. Anti-fungals and metronidazole can knock the bad stuff out of the gut and the blood stream. I can only speak for what I've experienced, but I think the infections I had are common, and generally not well known. I drifted away from hanging out here after I had the MM stuff pretty much under control*, and went off to solve the rest of my issues. I'm now one year since cleaning out the third (and hopefully final) dental infection. I'll save that story for later as it's pretty involved as well. Dental infections are being implicated with dementia, diabetes, heart disease, and some "auto-immune" issues. Mine dental infections (two "internal resorptions" and bone infection in the jaw) were essentially undetectable by standard means as I'd been getting my teeth cleaned twice a year that whole time. * "under control" is a relative term. I have 20 years of toxins built up in my system, some of which can still trigger MM symptoms if I stir them up too much, but at least I'm not collecting new toxins and I don't live in fear of daily vertigo like I did in 2009. I do keep meclizine with me because that knocks out the spins for me better than valium.
And last thing tonight: I went to a number of support web sites for lyme and other issues. I can definitely say that this is the COOLEST and BESTEST support web site I saw, hands down.
Thanks for writing that up and coming back, PapaJoe. I just talked with my ENT (and I'm very fortunate to have one that is quite open to considering possibilities beyond the "party line") about fungal infections today, because I notice that when I eat sugar my tinnitus gets louder and my ear often stuffs up, and I'm not talking a whole lot of sugar either. She thought that if I had a systemic fungal infection I'd probably have fungal infections elsewhere, like the nails for example. Does that ring true to your experience? Interesting about eating all the probiotic foods. I had been eating a lot of them and making my own sauerkraut even, but then I learned that foods with probiotics are a migraine trigger (I get MAV and migraine headaches, both), so I've reduced it down to a bit of yogurt every day. I think probiotics are important for all of us, so that's been a confusing one.
That's a good question. I did not have any other signs of a fungal infection, and I've seen other folks with fungus on the nails without any of the migraine symptoms or food intolerance symptoms. The best answer I have is that it might be a different species of fungus. According to most literature I've ready, Candida yeast is the most common species in the gut. Perhaps it's a non-yeast fungus that infects the nails or causes thrush. The Dr who started me out is an ENT who also trained as an allergy doctor. He started out as an ENT, then developed a yeast gut himself. Yeast gut usually has an element of food intolerance (aka non-traditional food allergy) so after solving his problem, he went back to train as an allergy doctor too. As an aside, he trained as a Navy doctor in California, and used to hang out with Dr. House (of the House Clinic). Dr House used to invite all the young ENTs in the area for cookouts and the like. The first step, before any drugs were given, was to verify that I had food intolerance. He put me on an elimination diet (eliminate the foods you normally eat). The diet helped the over-all MAV symptoms. I was able to identify a whole bunch of food triggers, so that pretty much confirmed that I had food intolerance. From food intolerance to gut damage is a bit of a leap of faith, but even in 2009 there had been enough research on food intolerance and gut damage to suggest a link. My ENT/Allergy doc started me out on nystatin. This is a anti-fungal drug that is limited to the gut. In other words, it attacks yeast in the gut, but doesn't enter the blood stream, so there are fewer side effects. Nystatin is generally considered safe. Systemic anti-fungals can stir up stuff that can damage your liver, so they're not something that a doctor would give without some evidence that they're needed. After a few weeks on Nystatin, I could tell a big difference. At this point, the Nystatin was having positive effects, so we switched to a systemic anti-fungal to continue, then had to add in metronidazole after clostridium-like symptoms showed up. If you suspect gut problems/food intolerance, you can confirm them yourself with a trial elimination diet. It's not "easy" in that you have to give up pretty much every food that you normally eat for a month. There are a lot of info on the web about elimination diets for food intolerance. You'll eat meat, vegetables and limited fruit for a month. Cut out dairy, wheat, grains, any fruit or vegetable that are a normal part of your diet, cut out carbs especially. The idea behind migraine and leaky gut is that with a damaged gut lining, food molecules which normally would remain in the gut "leak" into the blood stream, triggering the immune system. So the foods that you normally eat, especially those you eat the most, become your triggers, even your probiotic foods. But it takes a bit of time before a new food triggers an immune response. The elimination diet removes the foods your immune system is already familiar with, thereby lightening the load and making you feel better. Eventually though, without further treatment, your immune system would start reacting to your new foods. If you notice an improvement after a few weeks on the diet, that's evidence that it might be worthwhile to move on to the Nystatin phase. If the Nystatin helps, it might be worthwhile to move on to the systemic anti-fungal/metro stage. It's tough if you can't eat probiotic foods. Can you take probiotic capsules without triggering? How about kefir? It may sound like a contradiction to say to eat yogurt and kefir while cutting out dairy, but I got some kefir grains and grew my own using coconut milk instead of dairy milk. Coconut milk also has anti-microbial properties so that was a bonus. Since probiotics by themselves can't cure a damaged gut, it's possible that if you identify food issues and start taking antifungals, that you would be able to tolerate probiotics.
Papa i agree with everything you say 100 percent, i have MAV and not meniers, but it was all triggered by poor diet and dental infections weakening my immune system and allowing the yeast to overgrow and leading to this condition For treating the yeast i recommend DR Daniels turpentine protocol
Since "Menieres" is a highly technical term that means "we don't know what you have", knowing you have MAV is a step up because migraine is better understood and there are protocols for dealing with it. Anybody here still discuss the book "Heal Your Headache"? I'll have to look up the turpentine protocol. I'm always a bit dubious until I learn the details. It might be effective, but it might also have side effects. I'll look it up and let you know what I think in a couple of days. The anti-fungal meds are designed to kill yeasts, and doctors understand what they are and how to use them. They understand that if you feel better that you must have had a fungus. Much of what I've tried to do over the last few years is to separate the internet wisdom from medical science in a way that I can present it to a doctor without being look at as a crazy person. I will say that everything I've been posting about that has been effective for me has been discussed with my doctors and are based on scientific studies, etc. I worked out my detox protocol with the director of Duke University Medical Center's Center for Integrative Medicine, and my PCP. So, even though I've taken my "own path" at times in the last few years, I've always tried to move back to established practice so that my doctors take me seriously, and so that I can educate them for future patients. My OTO trained at the House Clinic. At first, he was ready to operate and sever my nerve until I discovered the food/MAV issues. He was quite interested. As luck would have it, I'm going back to see him next month for the first time in six years, and I'll fill him in on my progress and see if any of our previous conversations has stuck. FWIW - my right ear is 100%. My left ear depends on how my tinnitus is doing. When I had the hearing test a couple of weeks ago, I had 44% word comprehension in my left ear. I also took the caloric test. For some reason, I never took it before. It knocked me on my butt for a couple of days.
My yeast overgrowth has been confirmed on stool test, Organic acids test and also blood test, i have been actively working on using diet and herbal antifungal remedy's and recently stumbled across the turpentine protocol, the turps protocol has been great for me so far, would you mind sharing your detox regime with me? i would be interested to know, you could PM me if you don't want it to be shown in public forum
Cool! When I was starting my journey, few doctors would ever consider the results of a stool test as a sign of yeast overgrowth, because "you're supposed to have yeast in the gut". I'll go into greater detail later, but my main issues these days are cognitive (poor concentration, short term memory problems) and neuropathy (including horrible cases of gout). As long as I'm on my regimen, it's tolerable. If I forget to take my meds (which I do on the weekends sometime), the pain from the neuropathy gets pretty bad, and if I get gout, the pain gets worse. My wife is now helping me remember to take my meds. During the week I usually remember. I also have a calendar reminder on my computer now. My final issue is skin eruptions. It was originally diagnosed as foliculitis, then later as rosacia, but I have lots of acne and boils. My detox includes: Cholestyramine, a bile binder which lowers cholesterol by binding with bile in the gut. Bile is used to help rid the body of toxins, but in my case, much of the bile (and the toxins) were being reabsorbed in the intestines. A non-standard stool test from my Duke doc showed that I had a very healthy gut (due to the antifungals/diet/probiotics) but that I had a very high level of bile acids. Our discussion about what the high bile acid result meant led to him recommending the Cholestyramine. Most cholesterol lowering meds lower cholesterol before it's had a change to help trap and process the toxins, which leaves the toxins in your system. Cholestyramine lowers cholesterol by binding to it in the gut after it has trapped the toxin, and helps eliminate the toxins through the stool. Activated charcoal acts in a similar fashion. I've chosen the Cholestyramine because it makes my PCP happy, it's effective, and my insurance covers it. I think the Chol. works better, but I've never tried charcol vs Chol. for a valid comparison. If, for some reason, I couldn't get the Chol. any more, I'd use activated charcoal. I also take Benicar, a BP medication. I wouldn't take a BP med because I've had bad reactions with the others he'd had to try (hctz, I think, would trigger gout attacks). But Benicar is known for it's anti-inflammatory properties. So I take Benicar because it makes my PCP happy, I tolerate it well, and because it's anti-inflammatory. Colchicine helps keep the gout away. It also helps prevent heart issues. Even though my heart is generally healthy, taking makes my PCP happy, and it's effective in reducing inflammation. If I screw up and have a gout attack, I can take extra to help knock it out. I also take Vitamin D because everyone says I should. Warfarin, because I had a PE a long time ago and they couldn't figure out why, so they put me on warfarin for life. Thats it. Cholestyramine Warfarin Benicar Vitamin D Four meds and generally healthy eating keeps me on track as long as I remember to take it. I'll be working to learn more about the protein sequestration June mentioned. I believe skin is one of the organs that helps the body detox, and I'm hoping I can learn something that can help me keep the skin issues under control. I think my skin is loaded with toxins from the last 20 years or so, and the acne and eruptions are the body's way of getting them out of the system. Instead of getting a splinter and having it fester out, the toxin proteins are being festered out naturally. Anybody here ever have a PE, or ever have check pains associated with pleurisy?
Papajoe, it's good to see how knowledgeable you are in controlling you symptoms! I wish you continued success.
Papa Have you ever considered getting an infra red sauna, you can buy them off amazon, i have one and use it at least once per week, it really helps getting rid of toxins
Thank you, but the reason I'm coming back to post is to let folks know there might still be hope and what I've found that helps me might help some of you. I learned a long time ago that one size doesn't fit all, but I expect some of what I found out can help some people here. Upgrader, for instance, seems to have been dealing with the same things I have. (upgrader, I do visit a steam room occasionally (not often enough) and I have started sitting in the attic of my garage some on hot days so I can sweat) I'll definitely look for the IR sauna. I'm posting piece-meal right now, but hope to put it all together in a (semi) coherent posting.