Hi all! I'm enjoying the conversation. Yellowboy - the tinnitus is part of the 'holy trinity' of MD symptoms (vertigo, tinnitus, pressure) so while the tinnitus and pressure could go on for weeks before a vertigo episode (then really ratchet up during one like a siren of tinnitus), they all go hand in hand. It's like the vertigo is the last thing to "explode". So when my diet is good, improvement on all fronts. I wouldn't say I have zero tinnitus now - but it's only a very slight static sound in the dead of night. But I use the tinnitus as the "canary in the coal mine" to warn me when things might be moving in the wrong direction. For example, we just came out of Easter weekend and I was not good with my diet and didn't follow through with my supplementation properly. Just tonight I noticed that the tinnitus is a little more noticeable. That is telling me I've been bad and that I need to behave the rest of the week to bring things back down. Linda and others asking about leaky gut - well, the good thing is that it's pretty much the same diet either way. The only thing is that bone broth is is actually NOT recommended with histamine intolerance because the slow cooking creates a high histamine situation. Stemcell - I'm a huge fan of essential fatty acids as well for their anti-inflammatory properties and more. I haven't come across any other transdermal mode of delivery so for the average person taking Omega 3 Fatty acids (containing EPA and DHA) is highly recommended (and I did so in my document). Thank you for taking the time to comment!
I have IBD being tested again for SIBO . Carbs bother me quickly not like years ago also sugar. Feels at times heavy toxins going thru my system like flu or virus. Yes bone broth helps calms system down.
Thanks for the new approach, Rubygirl. Is there any evidence that such an intolerance can develop after age 50?
Hello Mountain Man! Well, there is nothing specific to point to in terms of age (and Menieres does affect younger people, with an average age of onset being 40-60) but then for so many illneses, they appear well into adulthood and usually that's because the body is capable of considerable repair and/or immune system protection when you are younger but that declines as we age. How many times has someone said "I used to be able to eat/do that when I was younger but not any more!" And then there is a cumulative effect on other factors. So for example, things that would affect DAO production in the gut such as imbalances in the types of microbes living there - that changes over the years and will worsen and worsen with certain lifestyle factors such as use of antibiotics, poor diet, etc. Inflammation in the gut will take it's toll over time too and cause more and more damage to the gut lining (which produces the DAO so less is made). If we are talking about people who may have a genetic predisposition to impaired HNMT activity ... well, it's not that there is zero activity (as that's not compatible with life) but that it's slow. To keep that functioning as best we can requires all the necessary vitamins and cofactors from one's diet. As we get older our digestion is not as good (we produce less hydrochloric acid for example which is a necessary step in our digestion) and we therefore may not be absorbing what we need even if we are trying (also impacted if there is gut inflammation). For sure there is a decline in all hormone levels across the board (which affects histamine metabolism and HNMT activity), and usually the long term effects of stress are starting to show with the body becoming less able to suppress inflammation and fend of viruses and the like. So really just all the same things that make use prone to cancer, diabetes, arthritis and practically any other disease of adulthood. At least that's how it seems to me....
Further to my reponse to Mountain Man, it's just a fact that the activity of many if not most enzymes simply declines with age and this histamine metabolism thing is very dependent on various enzymes. If you Google "aging enzyme activity decline" for example, you'll get many examples of this including HNMT which is key for histamine degredation in the body.
Hello Rubygirl, thank you very much for your comments. It all sounds logical and plausible to me. I'll have to look into the subject in more depth. Is there anything to consider with the DAO medication?
Hello! Well, DAO appears to be a safe supplement except it would not usually be suitable for vegetarians or people whose faiths don't allow pork consumption as it is usually derived from porcine (pig) kidneys. I believe there are alternatives from plant sources but that would require some research. And as I mentioned, DAO only works on the histamine that is present in the foods you are eating. There are a whole bunch of other foods and additives that cause your body to release histamine elsewhere in your body (versus in your gut). So it only does half the job, but it still is an important part of it and I take mine! The other supplements and just food avoidance helps with the rest.
Hello, thanks for your reply and your excellent document, which I have now read. I understand that you have to look at the issue as a whole. However, I eat in a canteen from time to time and it's difficult to get everything to my liking. I could imagine using the DAO supplement here.
Hello Mountain Man! Yes, exactly, you've got the idea. You have to manage with real life. For example, I was at a wedding last night where I have no control over what is served. However, I made sure to bring my DAO with me and took it with my meal. And I just did my best to avoid the obvious bad stuff. For example, I know lemon/citrus/citric acid is the worst of the worst for me and tomato (full of citric acid) is also a danger zone item. So it meant eating the mushroom risotto but not the tomato-sauced pasta. Or passing on the fruit sorbet dessert (which is heavy on the lemon juice) and then waiting for the late night dessert table (I don't seem to have an issue with gluten so happily had some cannoli and wedding cake). And again, if you are good most of the time, unless it is a really excessive buffet of bad stuff, your body should be able to deal with a meal here or there that has some triggering items. Try also to root out bad things that you don't know about in the day to day or ask questions at restaurants about how things are prepared. For example, I found out the hard way that these fruit sorbets are loaded with lemon juice... because I experienced MD attacks from having some berry sorbet... then started reading labels and voila! Offensive lemon juice I wasn't expecting! Or before buying some middle eastern food and asking them if their meats are marinated in lemon and sure enough they all are! I'm learning every day. So just do the best you can - I'm sure you'll find the balance that works for you and you'll get to know what you can get away with and what you can't!
Many thanks for your tips. Unfortunately, I don't know what the trigger is for me. I recently heard well for a week and then very badly again for 2 weeks. I don't know why it gets better or worse. But it's desperate I have seen that there is a herbal DAO from a company in Switzerland. It is called “Mildao”. I think I can try that in addition to changing my diet.
I hadn't heard of MilDAO but yes, it appears that this "histamine intolerance" idea is gaining a lot of traction. I had mentioned that there was a product from Life Extension Foundation that was their DAO offering and these guys are all about the science. They don't play around with nonsense. So the fact that they are putting their name on it tells me that this has been researched and verified. And figuring out our own triggers is "the work" here. What is a trigger for me may not be for you. Either we remove everything, feel better, then experiment, or we track everything and then try to figure it out when we have a bad flare up. I think feeling better as quickly as possible is the preferred way to go where you are expermenting from a place of health rather than from a place of illness and misery! Best of luck on your journey with this!
Hi Rubygirl, Thank you so much for taking the time to put this information together. I am on week two of giving it a try. My vertigo was better within three days. I am still getting some here and there, but I was on a three week run of daily spins before I started. So I am cautiously hopeful. However, for the record, I am also taking antivirals (month two of famciclovir, after three months of valcyclovir), lysine (3 times per day for 4 months) and I was finishing a 14 day course of Medrol (1 week of 8 mg, 1 week 4 mg) per recommendation of Dr. Mark Gacek (he actually recommended prednisone but I had Medrol on hand so took that instead; he states that the steroid and the antiviral work synergistically to produce better results). During my first week on the steroid my vertigo mostly subsided and I began to feel better overall. But as soon as I decreased my dose to 4 mg, the vertigo returned. I then came across your post and jumped right in. So, really, the change in vertigo could be due to any, or none, of these things. But it seems worth it to me to continue the dietary changes and see. It is a heck of a lot of work to completely change how you eat. I am a very healthy eater overall but this is still a big change. You don’t realize how much you shop, prepare, cook and eat on autopilot until you have to stop and think about everything you’re doing. I am trying to keep your sentiment of “low, low, low” instead of “no, no, no” in mind. I was wondering if you had any other symptoms of histamine intolerance or was this just an avenue to deal with the MD? Have you noticed any other changes due to eating this way? Also, you might be interested in reading the Gacek article behind this forum that JOH shares, as it addresses your question as to how and why a virus (in this case the herpes virus) effects the ear. In talking to Dr. Gacek (son of the author of the above article, who incidentally made the viral connection with Menieres 25 years ago, then told his father, Dr. Richard Gacek, about it who did not initially buy into the connection until he came across physical evidence of it in the temporal bones while doing other research) the whole game in treating MD is to get the body to a point where it can get control over the virus and cause it to go into dormancy. The virus will always be present, it’s just whether it is active or not (like chicken pox/shingles). Maybe the histamine levels in some people affect their body’s ability to do this. Or maybe there are indeed multiple causes of MD. Thanks again, Rubygirl, for the post and accompanying information!
Hello KJR! Thanks for the information! And I am glad to hear that you are feeling better, whatever the source of the improvement. I can certainly get on board with MD having a viral component, though as you mentioned, there may be some additional compounding factors with histamine levels (or different causes for different people). In looking at the Gacek research, it appears that he does agree there is endolyphatic hydrops present. He just argues that from there it's toxic viral nucleic acid release (and not potassium release) in to the perilymph that triggers the symptoms. But other research suggests that histamine can induce endolymphatic hydrops itself as well as affect the perilymph too so maybe the two (histamine and virus) act synergistically as the perfect "partners in crime", amplifying each other's activity on the vestibular and auditory systems. Gacek also refers to the HSV (Herpes virus) in particular and if you Google the incidence of that virus, apparently 2/3 of people under 50 have this virus.... yet why is it that the incidence of MD is relatively low in the population? So the presence of the virus alone may not be enough to cause MD but when you add to that a predisposition to elevated histamine levels and that may push people over the edge. I don't know - all I do know is that to me, there appears to be a connection with histamine levels, and this is something that the average person does have some control over. The feeling of powerlessness is one of the worst parts. And in reading the forums, it's not easy for folks to find a doctor to prescribe antivirals. But I'm all for doing anything and everything you can to get better and whatever works - Amen!
For me, only L-lysine helps-nothing else. That’s why I believe viruses (most likely herpes viruses) play a role in my atypical Meniere’s disease. However, I am quite certain that this is not the whole story. About eight weeks before my first hearing loss episode, I hit my head in a minor bicycle accident. It wasn’t serious-I did not lose consciousness and had no concussion-but I am convinced that this incident is related to my Meniere’s symptoms. Perhaps blood vessels were affected. There is evidence in the literature that head or neck trauma can be linked to the later development of Meniere’s disease, even if the trauma was mild and occurred weeks, months, or even years before the onset of symptoms. Such trauma may disrupt blood flow or cause subtle damage to the inner ear structures, which could contribute to the pathogenesis of Meniere’s. Some studies have shown that patients with a history of head or neck injury are more likely to develop balance problems and vestibular dysfunction. Given that there is also a known association between Meniere’s and Alzheimer’s disease, I suspect that Meniere’s is strongly related to poor blood supply to the head and brain, and that this could be triggered by trauma. Unfortunately, chiropractors have not been able to help me so far. I also think that Meniere’s could result from a combination of viral inflammation (possibly herpes viruses) and impaired blood flow in the head or brain.
Addition: 30% of the population suffer from seasonal allergies. This also is a major contributor to histamine levels in the body. Many of you may wonder why your symptoms seem to worsen in the Spring and Summer months. Even my friends without Meniere's complain about "blocked ears" at this time. You may be able to track the pollen levels (on any weather site) and see if they match your symptoms (moderate to high levels? You may feel lousy). Well, if pollen is causing inflammation through the sinuses, ears and mucous membranes of "normal" people then it makes sense that we'd be experiencing similar at this time too but more focused on our inner ears. Unfortunately there isn't much we can do for the trees and grasses but awareness is important, and antishistamines to help, and working on what you can control (like don't add more with your diet). I will add a section to my document in the next couple of weeks on additional antihistamine supplements/support for this time of year specifically....but just reading up on seasonal allergy strategies in general may help.
Your email was fortuitous. Usually I have a trigger occurence followed within less then 48 hours by at least two more related occurences Wednesday I went for a grant interview. To support my research and market the products. Thursday my wife decided on spring cleaning. In doing so she found mold under the wooden dining room table. This answer a puzzle that i have before me for months. Why, when i stood in a location near the table, I would be sufffer vertigo so bad I would have to apply the lotion or leave the house. Everybody cleans the top of their table, but how often underneath. She used vinger and water to disinfect. I swabbed the underneath and took a look under the microscrope. And there were the rodd of the mold budding away. Today I got your Email. I will will report a 70% drop in morning symptoms. I would suggest that all wooden furniture be disenfected paying close attention area that are unlite. Now I know ,why for years aircondition affected me. Mold in the damp airconditioner, concentrated by the cool air and recirculated. Your are correct about triggers. Once a major trigger happens almost anything can be a secondary trigger. In terms of antihistamines, I avoid them. Some have bad side affect. But, I am lucky I make my own. As a suggestion. If one takes a fatty acid as an antiinflammatory. Take 50mg L-Arginine with it. The L-arginine increases the circulation to where the inflammation is, carrying the fatty acid. Thanks for sharing Larry
@Rubygirl My family doctor measured a “histamine level” in my blood. He says it is not suspicious. I don't know what to make of this. Do you have any experience with this?