First off...I need to say 'hello'...I haven't been on since a really bad set-back in the beginning of the year, and so special 'hellos' go out to hbep and crazylabyrinth, who -in that time- offered me extra special support. ... (and everyone here on the site)...well...first off sorry for what everyone's going through!! Anyways -to review my 'case'...I'm 36 years old and was someone who -when this first started 2 and a half years ago... (I'm sure I just started to freak everyone here out who's in the new/early stages with this 'thing' with THAT statement)...I was someone who -had NEVER had problems with dizziness or ear issues. Now I was someone who always had had classic migraines... but anyways...after a cold/flu thing like 2 and a half years ago, I started to get a progressivlely light-headed-dizzy-feeling (but never actual vertigo)..as well as, visually, things just looked kinda funny... from a feeling of unequal vision (almost like a subtle version of having the wrong contact lens in...though not that extreme)..to extra glare-ish when I was in dimly-lit rooms at night (sometimes...I thought I might be getting a migraine aura...but...again..never that extreme/specific)..well..needless to say...I completely FREAKED out...went down the whole road (like all of us) of tests...ENGs, MRIs, lame doctors, good doctors, etc...the first year...after several months...it went way. I was so happy. Year 2: I got a classic migraine one night...took my migraine drug at the time (immitrex)...it worked great on the migraine...next day I woke up...dizzy like I hadn't been since the first year it hit me (more than a full year prior). I was so upset and disheartened. That 2nd year was horrible. Worse than the first. From then on...I really struggled. Only a had a few months where it really reprieved. By the way, I found the only thing that ever really relieved me of my sympytoms is a low dosage of Xanax...and some days it works better than others. Because my docs were starting to think it might be MAD (migraine associated dizziness)..they put me on a migraine-preventitive (topamax)... was doing OK...but it flared up really bad by the end of the year last year....they raised my dose on it by late fall...and it completely stabilized and things got great and I finshed off the year well....Then at the beginning of this year, I got the worst flu of my life and guess what??..BAM!!! the worst resurgence of this friggin thing ever. It was then that I found this board, and ...like I said, the support and shared commonality of sympotoms helped me greatly...cause here in LA I simply feel most of the time I'm the ONLY person with this. Anyways... they raised my Topamax dose AGAIN (and I went on an anti-depressant...cause the whole thing REALLY got me down BAD), and it was then that I went to a special ear place here in LA (it's premiere for stuff like this)..and the doc there said I'm basically having vestibular migraines...but there's very little they know on them....in the sense that he definitely feels I have a damaged balance/vestibualar nerve (from whatever took place, originally, 2 years prior)...but it's kind of like a "what came first? -the chicken or the egg?" theory...in the sense that they're not really sure if the enflamed vestibular nerve continues to trigger migraneous activity.... or if the migraneous activity keeps the nerve enflamed. I, personally, think it's kind of a vicious cycle. They also just recently up-d my Topamax again...because....after a few good months of feeling decent after this year's resurgence (it's never felt like it's 100% gone away...but those of us who suffer with this know that if you're at like 10-15%...where -it's just a teeny bit there.... that almost feels like nothing compared to 65-75%...or God forbid, more.)...it recently resurged again in the last 6 weeks...and I didn't have any flu or anything...I'm just insanely frustrated. What's really weird now is... it seems to be on this pattern where one day is pretty good, then the next day sucks...then it's decent the next day, then it's bad the next day...etc, etc, etc. I'm also on a special prescription 'LCB vitamin complex' (very high in alot of 'Bs' and some C) which is supposed to be strengthening my vestibular nerve. (Been wondering about that lately though.) Also..no real ear issues...except every once and awhile I'll get really subtle quick, fast aches in my left ear...just for a sec...(almost as if the nerve is trying to adjust or something)..but -for anyone here who is told they have MAD or vestivbular migraines...or have basically had what I have for along time now....does it affect you visually? Hard to explain... but things almost kind of look like when you put a new prescription of eye glasses on for the first day? Or a feeling of unequal vision a little bit? Or extra glarely...like a real subtle migraine aura...but no way near as intense as that. Also....like I said... I never get true vertigo...just a 'whirly', drunk feeling in my head. I've also definitely noticed that...because jaw-clenching is a bad habit I have...it gets immediately worse if I start to clench my jaw the second I start to clench it...so (needless to say)...that's something i'm trying to conscientiously stop doing...and am thinking about getting a night guard in time.) (My dentist told me that he didn't think I had full-fledged TMJ, though)...What's interesting is...now...I've noticed...on a day when it's falring up...if I force myself to be active...even if it feels bad for a while while I'm doing it...it's almost as if the activity, in the end, ends up making it better...and the dizziness sensation can start to relax a little bit and go down. I don't know. I'm truly out of answers. Feels like the docs have never really had that many great answers themselves, anyways. And so here I am with this friggin thing 2 and a half years later. Wondering if, one day, I'll ever get to feel, and see the world from a normal perspective again...like I guess I used to take for granted. :(

Hi Martinla

Just wanted to say hello. I'm new here and only had my first real dizzy thing at the beginning of May.

Did want to say, though, that my first dizzy correlated with when I decided to start taking my SSRI (Zoloft) properly instead of haphazardly. I was told on Monday that I probably had Labyrinthitis of Vestibular "something" I can't recall what they said, I was too nervous and wanted to GET OUT of that weird chair. Also very relieved that they reckoned I had no signs of acoustic neuroma - so I blew that disco real quick.

Back to the SSRI, my own individual tests (over about 4 -5 days) with taking Zoloft are that when I *had* my initial Labyrinthitis attack I noticed that by 3pm, I'd feel sorta OK. So I would take my Zoloft and then, 3 hours later would freak out with spinning again. I stopped Zoloft and have not taken *any* since. NOT good to do apparently, but I had no choice. I was spinning enough from my ear and didn't need an artificial spin on things as well.

My mother reckons I sound more "normal" and less depressed when I am OFF Zoloft, so does my partner of 15 years. So, I'm staying OFF my SSRI. It was very difficult at first. I have two young children and at first, their kid noise really, really grated on me. I would jump when they squealed or laughed loudly - normal kid stuff but when I was first off Zoloft their noise was excrutiating.

I still have fleeting dizzy attacks during the day, but they are reducing in intensity and frequency. I am *less* anxious now I'm off Zoloft. When on Zoloft, I couldn't go to the Dr by myself as I was too scared of what the result would be. Since being off this drug I have managed to see an oral maxo faxo surgeon to get my bad teeth out BY MYSELF! I even went to the hospital BY MYSELF to see the ENT guys (so proud of me;)

So, for me, Zoloft is not good IMNSHO. For me. YMMD, but that is my take on how SSRIs affected me.

Hi Karmais,

I'm not surprised that Zoloft wasn't good for you. It had the same nasty effect on me too. But I just wanted to point out that the SSRIs act differently with everyone and you usually have to find the one that sits with you and doesn't exacerabte anxiety. They can actually be a really great way to treat dizzy disorders not because the person is depressed but because they blunt the firing off of the anxiety centre (well not Zoloft in our case) that is so often aggravated by labyrinthitis and other inner ear problems. Chronic anxiety will slow or stop compensation and fuel the problem. I think it's worth trying another brand if you cannot stop the anxiety although it sounds like you may be on top of it anyway.

Best...Scott :cool:

Hi Matt,

Sorry you're feeling crap. Sounds like the docs have given you a similiar explanation to me re migraine or vestibular damage - not knowing exactly what's going on but some mixture of the two. Like you, I do v. well for a while with the odd huge set back, usually down to some trigger - stress - hormonal, illness, lack of sleep etc....

Frustrating, I know, but it looks like you're in good hands re treatment and they are doing the right things. Further suggestions are, yes, get a nightguard and try and prevent the clenching - that IS a migraine trigger, I'm now sure of this in myself. I recently wrote a long post about B2 and magnesium and studies which have shown they can help migraine. Magnesium is a natural muscle relaxant and can also help stop clenching. Check out the post I wrote about this - if you put my name in advanced search+magnesium it'll bring it up. Touch wood, but I've been trying it for 2 wks and it's potentially helping (hard to say with such a variable condition.) The other things is - have you cut back on migraine trigger foods - it's worth a shot - aged cheese, red wine, chocolate - there's loads of info on the net about this + an excellent book by a doc at John Hopkins called 'Heal Your Headache' by David Bucholz. Also, if you have sustained vestibular damage - have u tried vestibular rehab therapy - particularly the visual exercises - they can help to boost your ability to compensate. Other than that, I suppose you could try a different migraine drug - but it does sound like some of the time the topamaz works well.

You said- Hard to explain... but things almost kind of look like when you put a new prescription of eye glasses on for the first day? Or a feeling of unequal vision a little bit? Or extra glarely...like a real subtle migraine aura...but no way near as intense as that. The answer is yes to all of this. Although re - seeing more out of one eye than the other - have u had your eyesight checked? Eyesight can really hold you back re compensating for dizziness if it isn't 100%. Prior to getting ill I didn't wear my glasses as one of my eyes was 20/20, whereas the other was crap. When I got this my brain had enough to contend with, without one of my eyes being off, and the other eye having to compensate for the bad vision. I got contact lenses and now wear them all the time and it helped tremendously. Worth checking if your eyesight is 100%, and if not, definitely rectify that. People with vestibular disorders need the best vision they can get. I think that was one of the reasons why I saw out of one eye more than the other. Regarding the feeling of wearing the wrong glasses, I felt like that for a solid year of this - it's better now, although it can come back. I have heard numerous migraineurs talking abut the extra glarey vision - I get it very occasionally.

I tried an SSRI once but had a bad time with it - felt extra spacey and out of it, plus a weird migraine aura in my right eye, so came off it. Didn't try another one, so can't comment on that.

Fraid that's all I have to offer. It's basically everything I've tried. I am doing good on the dizzy front at the moment, but for some reason my right ear is killing me - think it's tmjd related. If it's not one thing it's another, lol.

best,

HBEP:

I asked my doctor a few of the questions you brought. First about MAV. He said he doubted it but their is a great Neuro who runs the headache institute in NYC. Problem is he does not except insurance and is 1,000 dollars.

Then I asked him about my diagnosis about vestibular problem not being specific. He gave me a well explained answer that made me kinda depressed that I am going to be stuck like this forever. He said most people have very non specifc symptoms such as dizziness, nausea, disequilibrium. You rule out all fatal and very serious ( like this is not serious I laughed) conditions with other tests such as scans and GI tests. Problem is there is no test that takes a picture of the entire vestibular system. We have tests that test certain areas and how they function such as the ENG etc.... They know something is not working correct with the vestibular system. They do not know however on a lot of occasions what is causing this and what specific area of the Vestibular system is causing the problems. Sometimes the test they have can lead them in the right direction. VRT is what works for a lot of the vestibular disorders so they try this on most except a few like Meniere's. Other than that the only thing they can try is to give medications like ant-nausea or anti-dizziness and see if that works. Basically I got out of this is they are trying to help you but they just do not have the resources to understand everything.

Which is why people take a long time to compensate and some do better than others. I feel like I am stuck with this forever. Very sad today. I am not giving up and still sticking to my VRT and such. But very sad.


Howie

Howie,

I just want you to know that I know how you feel. I can't seem to stop crying today which makes my vision worse. I am going to go for a walk. It usually makes me feel a little better.

I was just wondering how this all started for you. Was it out of the blue or were you sick with a cold or something? Do you have tinnitus too?

I like to read ALSme and hbep's posts under my original question "Does it ever go away". Some how the positive post makes me feel better. Maybe it will help you too.

Gloria

Hi Matt,

Just wanted to say that the way I've always used the same eye glasses analogy to describe my dizziness. I don't get true vertigo either –*just the strange, seemingly vision-oriented dizziness, as well as a vague sense of movement "in my head." I'm in month 11 of this thing, non-stop, everyday, all day, along with headaches/ head pressure, and really weird, random pains that occur suddenly in my head from time to time.

I'm in Orange County, by the way, so that at least makes the 2 of us in the So Cal area (unless by LA you meant Louisiana :P). I believe jadeearth was in L.A. up until recently too. Good luck.

Hey moogeneric,

thanks for the reply... yeah...I'm in Los Angeles... and yup..it sure is a bummer, huh?! What's been most disheartening is that the first year I came down with the whole thing (2003)...once it went away... it stayed away for a very long time, and I thought.... "cool...I'm done with it! :) " It wasn't until year #2 ... when I got a classic migraine that the next day I woke up and it was -all of a sudden- back in full force... you can imagine my extreme shock and upset. Now... more than a year after that.... (so it's a total of 2 and a half years afters after the original beginning of the whole thing)... I still pretty much consistently struggle with this thing, and I rarely get that much of a reprieve from it... a few months here and there throughout the course of the year. Up here in LA, there's the House Ear Clinic...kind of the premier place to go for stuff like this.. and they pretty much determined I'm having vestibular migraines... a phenomenon brought on by a 'messed up' vestibular nerve triggering migraneous dizziness. Oh wells... kinda like.. what am I supposed to do with that??..ya know!! So that's why they have me on the migraine preventatative and then a vitamin complex to strenghthen the V-nerve, but lately...it's been pretty jacked up. I'm assuming, moogeneric, that being in fluorecescent-lit stores can make you go crazy sometimes (a Target, a grocery store ... i.e. the aisles of items, etc).... also...I can be a jaw clencher and that automatically makes my dizziness worse... have you ever experienced that??... just curious. thanks for your contact! Best, Matt

I can imagine how frustrating it must be to have been back to "normal" for a time, only to have it come back again, especially when you've had to deal with this thing for so long. I'm certain you'll feel good again... I know there are many other medications you can try if the one you're on now turns out to be a dud. At LEAST you feel better here and there – maybe these periods will last longer and longer until it's finally gone for good. :)

Lighting definitely has an effect on me, from fluorescent store lighting to dim-lighting, like in restaurants and such. I think all the visual stimuli in stores and such is a factor too, as our dizziness sometimes seems "visual" in nature (I have the hardest time explaining this to people). But, it HAS gotten slowly, but not completely, better just in the last 6 months or so, though the effect can still be pretty intense if I'm going through a particularly bad spell that day, week, month, etc. The only significant relief from all this dizziness crap I've had was, oddly enough, when I had a terrible cold for a week at the end of December. Even the headaches were almost gone! I caught a fairly bad cold again a couple of weeks ago, but unfortunately, the dizziness did not decrease this time around.

I don't know if I'm "officially" a jaw-clencher... I was looking into TMJ a few months back, but never really had it checked out. But I do wake up from sleep sometimes and find that my jaws are clenched. I think this might also contribute to some of the head pressure I experience, especially across my nose and forehead. When this gets bad, my dizziness is bad too. I think TMJ is a migraine trigger... hbep knows a lot in this area.

Anyway, I hope you have some luck with the medication and vitamins. Please keep us updated with your progress and take care!