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Thought it was Vestibular Neuritis, now it appears to be VM


#1

Hi everyone, new to the forum. I’ve had the “dizziness”, really mostly that standard offbalance in motion, brain on a slight time delay, type of feelings that it seems most of you describe, every single day since February. Before this I may have had similar episodes that only lasted hours, days, or a couple of weeks in the 2-3 years before this year, but back then I chalked it up to my health anxiety and never paid as close attention as this year, since, well it’s hard not to pay attention to it when it is every day!

After going through the quick gambit of docs who had no clue what was happening, it finally seemed clear that I had more of a long-term case of vestibular neuritis than the typical 3 weeks. That diagnosis seemed legit as from March on through August, as it seemed like each month got a little bit better, and the typical longterm case of VN seems to take 6-12 months to achieve normal or near normal status. By August I felt pretty good and had an appointment with Dr. Hain then, and was ‘almost’ feeling normal. Dr. Hain concluded that I may have some sort of seasonal recurring vestibular neuritis (rare) but more likely it was a sort of seasonal vestibular migraine…even though i have no headaches.

Well then Sept rolled around and I noticed I got slightly worse…and unlike other blips along the way it hasn’t gone back to ‘new baseline’ after a few days, and October so far has continued to trend the wrong direction.

The more this goes on the more it seems likely that the VM opinion is the accurate one…I’m even feeling a bit of low level pressure in my head a lot lately. Weather is changing a lot, I felt worse after a couple strings of consecutive days involving social alcohol, etc. TheraSpecs seem to have offered significant improvement in flourescent lighting areas like the office, mall, even had success with them at a Vegas casino! I had actually come across them as a potential help for VN, which the sales rep kindly pointed out was not their primary thing to treat but that it was reported to have some success with some people with VN so I went ahead and got a pair. Of course, what they are primarily supposed to help is… migraine!

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So I’m curious about a couple of questions about things I can do, and hoping to see what feedback those in this similar crappy situation think based on your own experiences.

  • I was doing a few VRT exercises at home almost every day while I thought it was a VN problem - to “retrain the brain” after the alleged nerve damage. But if the problem is migraine does that mean there is no nerve damage and therefore nothing to retrain? My tests at Dr. Hain’s came back clear… Do VM patients notice improvement (or lack of getting worse at least) doing consistent VRT exercises? Might there be different exercises?

  • In trying to find food triggers, just how long of avoiding something should it take to notice just some improvement? I know that Buchholz’s recommendation is 4 months…but well, I am addicted to pizza and cheese…and this is very disheartening to find that my great friend might well be a great enemy! lol. Is the 4 months for total improvement or only to finally begin detecting improvement??

Also, the way this goes through my day is very consistent, really 90% of my days follow the following format, whether it is a bad day or a ‘not so bad but still there’ day. Doesn’t matter what I’m doing either home, work, social, etc. Curious if anyone has any insight into what that might mean in the scope of VM.

  • first half hour or so upon getting up: not terrible issues (although very tired, but I’m not a morning person)
  • the rest of the morning: the worst part of the day
  • sometime after lunch/afternoon: symptoms feel significantly improved from the morning (still there though, just not as intense), brain is much clearer, energy level up
  • In the later parts of the evening: symptoms seem to come down some from the afternoon high, but still usually not as bad as during the morning.

Hope this isn’t too much for one thread! Thank you to anyone who takes the time to read this and/or respond!


#2

welcome here!
re diet: i have been doing the diet for 3
months, and it seems that it takes more like 4 months before you can reintroduce foods.

my symptoms vary throughout the day, mornings are good, midday/ afternoon not great, nights better.

sleep, exercise and diet are good places to start. Magnesium also.


#3

sorry, vrt, ive done a lot of vision therapy and have several vrt exercises. I think all is helping a bit, but i am also taking 150 mg effexor. vrt therapist told me that doing everyday activities is the best vrt.

re alcohol, i would limit it or eliminate for a few months, same with caffeine.


#4

Hi and welcome though sorry it’s come to this for you all the same. I’m no medic, just a MAV sufferer as it seems you might well be. Your piece certainly raises some interesting points.

I’ve had MAV for years and no headaches. It’s not uncommon that but I’ve never heard a specialist mention ‘seasonal vestibular migraine’ but it’s no surprise. Except where I live it gets attributed to ‘labrynthitis’. Certainly comes in clusters which could seem odd. Theory is Labs and VN tend to be one off’s, otherwise it’s considered to be VM/MAV.

Theraspecs were designed to help migraine by reducing a trigger that is light sensitivity as no doubt you’ve realised.

VRT: many people with MAV find VRT can make it much worse until it is controlled and stable following diet, lifestyle changes, meds etc.

This MAV patient found after 6 months of VRT she was very very much worse. @turnitaround. Dr S an emminent balance specialist recently told @janb If he thought she needed it, he’d tell her.

Diet.

The attached might give you a clue or two.

All the best with yr journey
Helen


#5

The way you described your day is very similar to mine.

I usually feel ok for the first 30 minutes of the day, and then the worst part is from then until mid afternoon. The evenings are usually much better, I still have symptoms but they tend to include much less anxiety once it’s dark. I can usually go to dinner with friends or hit the gym in the evening.

I have a job as a computer programmer, and I work from home. So 95% of my days I’m inside feeling dizzy as hell, but forcing myself to work while lying on the couch. Luckily I really enjoy my job, so when I get stuck into a programming problem it helps me forget about the dizziness.

When the evening comes that’s when I become active and social. I’ve even had people comment that I never want to do anything during the day. I live in a non-western country with a culture where men can’t really talk about these kinds of health issues, so I just always blame it on work.


#6

Thank you for the warm welcome!

@DIzzy3 Re - “the diet” - tomorrow I’m seeing a nutrition-type doctor who is also a PCP that I’ve been to in the past (not my normal PCP though), I am hoping she can educate me better on MSG and its various forms/names and where I could eat out at. I am single and just don’t know how to cook much, this diet sounds very overwhelming to me at this point. So I get 4 months, but what happens if I cheat here or there? Like if I had a pizza or alcohol once a month…does that negate the whole experiment? Or only a small impact overall? Luckily I already don’t ingest caffeine for several years, so at least one part of it I already have down.

I have started magnesium a few days ago. I understand it takes a long time to see if that has an impact also but that’s an easy one to do. Dr. Hain also recommended Effexor to me(37.5mg) but thought trying diet and magnesium should come first. Of course I ignored it like an idiot because I thought my symptoms were healing at that time and would soon be in the rearview mirror of my life experience…but alas not the case.

@Onandon03 - Dr. Hain said a seasonal thing isn’t particularly common even in his busy dizzy practice, but that it happens. Although I am not so sure it’s seasonal as I felt “something” every day since February…perhaps seasonally exacerbated though.

As for VRT, it sure as heck felt like it was the most influential thing to make me improve in late spring/summer…but maybe it was just coincidence with the season and I would have improved then anyway? A question for Dr. Hain perhaps. I can say it hasn’t seemed to help the past couple of weeks like it may have earlier. Just walking still seems to help a little though, at least temporarily. Thank you for posting that link!

@Nathan - Yes you sound just like my experience. I kind of use that to mentally get through the workday, knowing it will likely feel at least a little better later in the day. I work at home once or twice a week at least, and that provides some much needed respite. I’m not sure if I could handle 5 days a week at work when I’m at my worst.

Today was a whopper. I haven’t felt this messed up since March or April. I even felt dizzy rolling around in bed and usually I feel completely normal in bed, it’s kind of my “safe place” lol. The temperature dropped from 85 to 45 (Fahrenheit) here in Chicago yesterday, I can only expect that it must have had a huge factor in how I feel today, although I’ve never really measured or thought about changing weather as a trigger before now.

I think even more than the physical symptoms, the mental struggle is the hardest. In the winter/spring it was extreme anxiety because I thought I was about to keel over and die, now that I at least know for sure it’s vestibular, I don’t so much have anxiety but now I just feel depressed because my symbol of hope - the slow gradual decrease in symptoms over time - has vanished and it feels like this will always be a struggle for me, as I’m sure many on this forum can understand. I feel like my social life and dating life (which was already a struggle!) are just going to fall apart for good. On a day like today I can’t even fathom going to meet a woman for a date and on top of that I’m not supposed to have a drink or two either or eat most restaurant food! Oh boy…

I mean, I don’t even care if it completely goes away, if I could just stabilize at my July/August level where I felt about 80-90% normal, I will be ecstatic even if that is how it is for the next 50 years! Heck I went to Las Vegas, danced at a wedding, did quite a few things. At that point although I still felt ‘off’, I still felt like I was living ‘life’.

(btw I’m 36, male, single, live alone, Chicago USA)


#7

Good distraction is so important … how do you find the computer screens?

(btw Welcome to the forum, Nathan!)


#8

Welcome to the forum jray!

This whole virus thing feels like a total BS explanation for what is probably a more benign but far more complex issue. Too many doctors blame viruses. It’s so easy to say it to a patient, give them some pills and then let them go away.

The lack of middle and low frequency hearing loss really speaks volumes to me about how it’s unlikely HF frequency hearing loss is due to viruses. Why would a virus, freely floating in perilymph only attack HF hearing neurons? No, it’s almost certainly due to a reduction in sensitivity brought about by an increase in pressure, which would also explain the tinnitus.

In addition, normal viral infections last days not months and it’s been demonstrated that stable lesions in the vestibular system can be compensated for in a matter of weeks, not months (it’s clear MAV is not a stable lesion and this probably explains the migraines too).

The aetiology of balance conditions, let alone inner ear based ones is poorly understood, even now in 2018!

Medicine cannot yet explain how inner ear fluids are kept in balance and explain all the influences and how these are controlled. (although it’s making some progress, see the work of Alec Salt)


#9

Hi

Oh, dear. MAV’s a queer beast. Takes some getting your head around and no doubt all the more difficult the younger you are. I don’t think @turnitaround will mind if I repeat something he once said to me which stuck in my mind ‘when MAV hit him, it was the first time ever he’d had to take his foot off the accelerator’.

Although it termed ‘migraine’, I think that’s rather misleading for newbies because, to the uninitiated ‘migraine’ can seen very simple, ‘just a queer sort if headache’ and everybody knows somebody who gets migraine, crawls off to bed for a few hours with a mouthful of strong painkillers, and the rest of the time you’d never notice a thing wrong with them. Er, bad news is, MAV’s not like that. Dr S, top eminent UK balance specialist often refers to it as a ‘migraine variant balance disorder’. As a MAV sufferer I’d happily inserted the word ‘chronic’ in front of that description, MAV now appear to arrive overnight but it doesn’t ever depart the same. It tends to become something one is ‘stuck with’ and, as such, requires long-term diet and lifestyle changes as well as often some meds though they needn’t be more than a temporary measure, by which I mean for a year or two, not a lifetime.

The best non-pharmaceutical treatment for MAV is trigger avoidance but of course one has to identify them first, hence the diet, lifestyle changes etc. MAV can prove a difficult nut to crack so I’d say best not to cheat, certainly not at the beginning anyway.

MAV morphs constantly, that’s about the only constant thing about it. It keeps changing. Some plp find VRT does help considerably. Or as you say could be Coincidence. Of course generally balance disorders are better in consistent light so maybe the summer sun? Often it’s imposdible to reach a definite conclusion. Much a case of ‘trial and error’. You don’t seem to be too badly affected and have a very reasistic outlook in terms of expections which is excellent so I’m sure, if you persevere with the required changes and meds, in a while, you’ll be where you wanna be again.


#10

Hi Jray
Hello and welcome. Sorry that you are experiencing this horrible thing - it is quite debilitating. When I was first succumbed to MVBD I imagined the worst and my anxiety levels hit the roof. It took quite awhile for me to calm down , but I was left feeling most depressed which was an unusual feeling for me. I defy anyone with this not to feel depressed though. I have been making steady progress towards recovery since June with quite a few ups and downs along the way and no doubt there will be more of the same to come, but I am about 90-95% better than I was in April when it began. I am on the diet and take Pizotifen, which seems to be working. I haven’t had any VRT because as @Onandon03 said my neuro-otologist Dr S said that he didn’t think I needed it and I have improved with out it so far.
I hope things settle down for you soon - hang on in there. Jan


#11

Thanks everyone!

The doctor I went to today was of no help unfortunately, she just kept pushing her nutrition plans and meditation classes to get more money and barely listened to what I wanted to know about MSG, processing, what to eat when out, etc. Ironically she was the doctor I went to with my very first dizziness complaints back in Sept 2015 that I hardly remember…I asked if I could see the notes from that visit to see how it compared to my symptoms now and she wouldn’t do it! She just said “ok clearly it wasn’t just anxiety back then it must have been vestibular migraine then too”

I’ll read through the “diet” section here and after that i may just start a new thread in that section with questions specific to how to implement the diet in my life.


#12

Have you studied the diet at the end of the Lauren Kossack article I forwarded… it’s the same as the John Hopkins one end of Our’ Diet Section. MSG is easy. It’s in virtually every ready meal, gravy powder, sauce, stock cube, tin or canned food on the market.

One very simple rule is to only eat fresh, plain food. Plain grilled meat, fresh or fresh frozen veg, fresh fruit. Eating out is a nightmare on any diet, I’ve been there, but just takes some getting your head around it, and a bit of luck. It’s pretty boring but then it’s not for ever and it might just get you out of this fix. Helen


#13

I did take a look. At first glance it seems easy but it really isn’t easy! One thing is I am not a very good cook, I can steam some chicken breast in a covered pan or put a steak or burger on my Foreman grill and heat up some canned veggies, but that’s about it, and I’m not even good at those. I suppose with more practice I will keep getting better. I have to try and find out how to cook fresh fish. I’ve relied on a frozen salmon in a steam bag as my healthy seafood…but that’s out too now, the lemon garlic sauce in the bag with it is labeled with maltodextrin - more MSG-stuff (which I’m seeing everywhere)

The other thing is that there’s contradictions on it. For example, it says processed/American cheese is OK (even though also terribly unhealthy compared to the cheese that we can’t have) so I’m thinking great I can make grilled cheese sandwiches…but no, the bread slices say they contain malted barley flour (source of MSG) and thiamin mononitrate (a nitrate) among other ingredients labeled ‘soy XXX’ that I’m not sure about. But then on the list it says commercial bread is OK…at least I was able to find one cheese package at the store that didn’t have any “banned” ingredients but most did. Sounds like deli sandwiches are out, since lunchmeat is a nono, even if I find bread that’s permissible.

Pastas (but without parm sigh) and rice are on the OK list but they have thiamin mononitrate too on their ingredients. And breakfast? I don’t usually eat breakfast in the first place but they say don’t skip meals, and cereal is OK on the list…but nope so far all the cereals I’ve seen (that I have eaten before and know I like) have malt flavor, BHT, and/or more thiamin mononitrate. More MSG. Pancakes or waffles? Maybe. My mix has whey protein in it (more MSG!) but it’s a protein laden mix on purpose so maybe other brands don’t have that. And I’m out of syrup so I’ll have to check those labels too. Can’t even have my nutrition-laden protein shakes anymore either…

At least I can eat most fruits and veggies but that’s not very filling. I need 2000 calories! Salad isn’t a meal. So all of that’s the source of the confusion and frustration for at-home eating.

And as far as lunch during the workdays I go to the office (3-4x/week)…I just have no idea. The healthiest thing I could think of is a chicken panini at Panera Bread…but oh fresh baked bread and the chicken is smoked. Can’t even get a Subway sandwich because that’s fresh baked bread too! Work is stressful sometimes (or at least the people there can be!) and I have to leave for lunch to stay sane (although I guess I’m not very sane at the moment anyway…lol) And we have a convention during what seems to be “prime season” for my issues…March…so that’s 10 straight days away from home with no cooking, always eating out at either restaurants or the convention center and who knows what’s in that food (although it’s probably fresh at least)! Three of the last 4 years I have been hit progressively harder that time of year. (for some reason 2017 did not affect me one bit…I really am trying to figure out why! It was a warm winter here) I have to figure out some restaurant options that are viable. Not to mention social life. I can’t just stay home alone all the time even when I feel like crap. Seeing friends or meeting dates is vital to staying in mental shape and vital for my spirit.

Please don’t take this as a rant against your post Helen, I am very thankful for yours and everyone’s help so far. I’m just venting I guess more than anything. I have no outlet to do so. Heck I wanted to just let loose and cry into a pillow the other day for the first time but the HYH book says crying is a migraine trigger so I distracted myself/held it in … lol.

I’m just really frustrated and overwhelmed at what seems like an insurmountable obstacle. Honestly I think it’s causing me more stress and symptoms just thinking about it than it would be to just keep my usual diet! But a few days isn’t enough to tell for sure. The best I think I can do is slowly cut things out with the occasional cheat or try to find the “lesser of the two evils” sometimes. I feel like I can handle the balance/dizziness/“slow brain” for the most part. It’s a struggle but I’ve been doing it already for 8 months. It has been the hardest 8 months of my life but I’m still working, I still have friends, well dating has been scarce because that’s hard to focus on meeting someone new but during the summer wasn’t as tough. At least with long-time friends if I spaced out a bit here and there while out they’re not going to judge me like a new date would be analyzing everything I do and say. But my life isn’t what i would say “ruined”…just difficult.

But now that it seems clear that my problem is vestibular migraine, I’m scared now that I’ll make it worse if I don’t make these changes. Or at best that it just won’t get better. Maybe I should stop thinking about what it is. When I thought it might be vestibular neuritis I was ok…what you don’t know can’t hurt perhaps? lol Guess the cat is out of the bag now though. I haven’t had fast food in 3 weeks now, that’s not too tough on its own and is healthier for me in general anyways. Keeping out pizza and cheeses can be done too but will be tough since I crave them so much. I mean if you ask people to describe me in one word they will probably say ‘Pizza’! I can stop alcohol for the most part unless a drink or two is needed for a particular social gathering. I don’t drink caffeine or eat desserts or snacks already, never really have. It’s just eating the usual meals. Finding MSG-free and my cheese cravings are the toughies. Sigh…

I need to visit Dr. Hain again I think. But it will take another 2 months to get an appointment as he’s obviously a very popular guy among people with issues like ours! At least I have an anxiety therapist already but that appointment isn’t for another week yet. Maybe in the meantime I will just try to start up weekly VRT sessions again and see what happens.

I’m not even totally convinced that my diet has anything to do with this, as I never had problems before 2015 and had the same diet (or worse) my whole life…but obviously it is worth trying to find out!


#14

I very much doubt diet caused your issue. (Although I sometimes wonder if too much coffee might be a risk factor)

Don’t freak out on the diet. The diet is there to provide some relief. Not all of it works for everyone, everyone is different.

My condition has only ever improved, longer term … but it’s taken years. I have never been that disciplined about the diet, yet I have improved in any case.

I’ve never found dairy an issue, you may not either. I don’t find one or two glasses of alcohol an issue either.

The biggest issue for me is caffeine but only if I go a bit crazy and have more than 2 coffees and more than a little chocolate.

YMMV.


#15

Hi jray

Hope you feel bit better now you’ve got it off your chest. I totally understand. It’s a new ballgame entirely and living alone, there’s nobody to mull it over with. Thank you so much for your apology. Much appreciated but I hadn’t taken it personally at all.

Anybody ever told you, you worry too much? Stress is another trigger so RELAX, try a bit of deep breathing. Meditate. Take up Tai Chi. Then it’s time to learn to think outside the box. Everybody has their own way of living and cannot initially imagine any other way but MAV~’s a bit like getting married. Suddenly things change and, to keep the peace, we all have to adapt. Keeps us out the divorce courts. As @turnitaround sats nobody said your diet caused the MAV. It’s part if the programme to reduce its effects. That’s all. If you suddenly binge on a pizza or drink a gallon of strong coffee, the World won’t stop spinning though you might start. You may pay for the lapse next day or the one after and the trouble with lapses. They tend to be repeated until one ends up back where one started and the ‘good intentions’ are forgotten.

You got it. Good start. Don’t beat yourself up about it.

MSG - minimise it, you’ll drive yourself nuts trying to eliminate it entirely. Minimise everything at least to start with. Sounds like you need to find some different bread. Cannot be impossible. Granary flour is the only obe here in UK one couldn’t have on the diet. You might find sandwiches in supermarkets instead which, by their very processing are not fresh baked that day. This is what I mean by thinking outside the box. Don’t get stressed by anomalies, it’s probably more likely to wind the MAV up than eating the Banned Food in the first place. Nobody’s going to die because of it. It’s not an insurmountable obstacle, honest. If you can steam chicken breast, you can steam fresh fish. Try to THINK FRESH with food. Think ‘plain’. Butter, not sauces. Fresh frozen is good. Steam frozen veggies. Steam ‘In the bag’, even. Microwave jacket potatoes. The internet’s covered with recipes. The distraction of looking will do you good. Take your mind off ‘your current plight’. Vestibular migraine’s a pain, it can be scary. Most unlikely you’ll make it worse by not following the diet but you are not going to help make it better either, obviously. If it gets worse, it’s because it’s going to get worse. Finding and Avoiding triggers may well, combined with meds, supplements and/or meds, control MAV. The diet is part of that procedure. Some consultants don’t subscribe to diet restrictions at all. I guess most US ones do but here in UK very much less so, Lauren Kossack found the diet changes alone put her right in a few weeks without other interventions. For some that makes the diet an incentive in its own right, Helen