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    Old 02-05-2006, 04:52 PM   #1
    MattinLA
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    another thread for us vestibular migraine/M.A.D.-ers

    Hello all! It’s been a long time since I’ve posted… and –regretfully- not because I’m cured or rid of all this awfulness…probably more just because I got tired of typing the same old stuff…
    To give a recap: I was someone who most of my life suffered from what’s called textbook/classic migraines (i.e. onset of visual aura… then horrible pain on one side of my head…by my left brow… bad nausea/vomiting…. then done with in a few hours)… BUT… I’d only get these a few times in a year (usually 2 times/yr…some years… only 1 time). I’d take Imitrex to help with the pain…. and it would - and then that was that.
    In December, 2002, my pattern changed in a weird way in that I was waking up in the morning out of my sleep with migraine pain…(meaning I had already bypassed the aura part in my sleep, I guess). This happened a few times in the course of a month. I had a very stressful month… as I was moving…. I got a cold/flu thing… not horrible… but crummy enough, and I noticed I had been feeling really ‘light-headed’ in it’s aftermath. NOW… also…to add…I’d always been kind of a jaw clencher… but not a full-on TMJ-er (if that makes sense… I’ve been to dentists , etc, and discussed TMJ with them…and I’m one of those clenchers who do it consciously…in the day… as a reaction to stress, etc…I KNOW when I’m doing it, but I don’t have pain or bite issues… and thanks to hbep on the site here…I startred taking magnesium and it’s majorly helped with that!!)…anyways one night…I was out…shortly after the cold had passed…and I caught myself clenching…and all of a sudden I started having what I thought was a little aura… but not really. It never really manifested into one. I had a little bit of what I THOUGHT was migraine pain… BUT not full-on migraine pain. I went to bed, and the next day (and from that day on…for many months) that ‘light-headedness’ had increased and solidified to a persistent thing. It was always accompanied by a hard-to-explain visual alteration. I describe it as an un-equal-ness in vision…akin to having the wrong contact lens in…YET...not that severe. I read one woman online describe it similar to the first day you get a new pair of prescription eye glasses and wear them. I relate to what people have said here… about when you’re in dimly lit or darker places… sometimes I see what looks like the FAINTEST of an aura… but…again… not that distinct.
    To clarify… my dizziness has never really been vertigo-esq. At it’s worst… when I’ll look down….doing dishes… ay my computer keyboard…I’ve gotten a slight feeling of tipping back. But that’s seldom and –again- at it’s worst. And that’s the extent of what’s been a vertigo-esq feeling. The best way I can describe my dizziness is: feeling drunk… a whirly, , light-headed, swimming sensation in my head that simply makes me want to close my eyes and have the need to rest. And… most of the times…it’s accompanied by that weird vision thing…(the unequal thing, or… sometimes things seem EXTRA/TOO contrast-y/clear… like in stores with fluorescent lights… the items on the aisles, etc.) And I know (from the many specialists I’ve seen and accounts I've read here) –all that is classic migraineous reaction. It also physically fatigues me.
    The tests: So...that firsts year (2003) I had 2 MRIs –one of my brain (clear…it obviously couldn’t show the insanity that was taking place)…. and then after I had my first ENG - which showed that there WAS some dizziness coming from my left inner-ear…(my ENT wanted me to have another MRI of my inner-ear canals to make sure they were clear. And they were.
    I also… that same year… saw the premiere neurotologist here on the west coast (he’s actually dubbed ‘Dr Dizziness’), and he brushed me off as simply having ocular migraines… which I thought was a bunch of bul#$%[email protected], because what I was experiencing was constant, everyday…all the time (as many to most of you here know all too well.) And I just figured… an ocular migraine would be cyclical… in the sense that it would have a beginning, middle, end (like a classic, textbook migraine.) (It would be years later… that the concept of ‘vestibular migraine’ would be introduced to me.) His one recommendation was for me to go on Paxil…which I did… and while it helped with my depression… I’m not sure what it, ultimately, did for my dizziness.
    The dizziness lasted for a solid 4 months… returned 2 months later… lasted for a little bit.. then pretty much went away for the remainder of the year. It would be that year (2003 - the first year) that I would have my biggest reprieve from this whole thing. A quick sidenote… that same year… I had discovered the ONLY thing I could take to simply alleviate symptoms was a small dose of xanax (while I tried to not rely on it… I’m a waiter…I don’t have the luxury of not working… and there were simply bad days where I had to take it to get by… and it did the job quite well.)
    2004: I had been dizzy-free for quite a long time now…and basically felt it was a problem of the past…UNTIL…March of that year… BAM!... I got one of my classic migraines… took my Imitrex…it worked fine on the migraine. The next day…I woke up with dizziness as bad the first time I had ever experienced it!! I was DEVASTED! I simply couldn’t believe this was happening to me AGAIN! MY neurologist (who I’ve always trusted)…said maybe I’m experiencing… a ‘migraine variant’ (but…still...at this point… not one of my Drs. had ever uttered the dxs: ‘vestibular migraines’, ‘M.A.D.’, etc.)…and it’s not like I live in some rural, small town. I live in Los Angeles. He puts me on a small dose of Topamax. I also take another ENG… (which –this time- shows nothing specific at all...no 'left-side dizziness', etc.) And I go on an anti-depressant (well-beutrin…cause I can barely handle THIS this time around.) It’s March, and I will remain consistently dizzy through May. I use xanax frequently to get me through hard days. The whole thing subsides a bit in the summer… BUT...never quite completely leaves (NOT like it did the prior first year.) On a sidenote… one thing I’m noticing at this point is that when I do my jaw-clenching thing...it makes it MARKEDLY worse. (Various doctors have explained to me that that act triggers all those nerves that signal up to the vestibular nerve and it can inflame it like that!) I’m curious if anyone here has this same habit/issue?
    Anyways… my dizziness flares up REALLY bad in the fall… to which my neurologist raises my Topamax to 75mg. AND… about 2 and a half weeks later… my dizziness starts to subside dramatically…where it’s the first time –for me- I start to make the connection… that this whole thing IS migraine related (BUT…in ways that have YET to be explained to me.) I have a great dizzy-free holiday season…. UNTIL…
    January 2005 –THE WORST flu of my life… and thus.. the worst …dizziness flare-up to come with it!! Had to be the cruelest thing in the world. After feeling like I’d FINALLY nipped it… and had been dizzy-free for a month. The flu alone was horrible… to be squashed with THIS was unbearable. It through me into a depression I couldn’t handle. Thank God I can cry in front of my neuro. Raised my Topamax WAY high (125mg)… went on a new anti-depressant (I had LONG been off the Paxil...which I hated)…I’ve been on Cymbalta for about a year now. And I like it. Though…from my readings here… I’m very much considering switching to Zoloft…since…I’m still (3 years later) suffering from all this.
    It was then that I finally came here to the health boards which kept me sane… because I thought I was going to lose my mind. I didn’t think (and still now some days don’t think) I possessed the perseverance to deal with all this. It’s funny because I’m quite aware there are many people walking around with horrible things like cancer and other terrible life-threatening diseases. It’s just that this condition –as all of you know- can make you feel so strangely altered, UNCOMFORTABLE and ‘handicapped’ in a way, and stop you from enjoying the day and the simple things you used to do. And yet you look normal to other people on the outside. AND… we’re a minority and most people have no idea what our condition is… SO… that’s why the whole thing is so cruel. This board was such a saving grace for me in this sense…as well as offering me more information.
    I finally went to what’s called The House Ear Clinic here in LA. It was there that I was given somewhat of an explanation of vestibular migraines and M.A.D. (which –ultimately- is what they think I have. Of course… as many of you who have had this forever (me… 3 years now) it’s easy to get this big chip on your shoulder where your response becomes: ‘yea, doc…now how the f#%! do I FINALLY get rid of this?” 3 years later…I truly feel like I’ve done my pennance with this thing. In addition to the Topamax, the Dr. at the House Ear Clinic put me on a special vitamin prescription high B complex called an LBC complex which is supposedly supposed to strengthen my balance nerve. Upon hbep’s recommendation here… I take a good dose of magnesium to to help me with the clenching.
    The ‘good news’ is…. there’s FINALLY a new neuro-o-tologist in town…to whom I’m seeing tomorrow. He’s younger too, and I find, sometimes… that the younger ones are actually better often… as they’re a little more progressive and not as set in their egos and ways… (as in i.e. Dr Dizziness). I’ll definitely be discussing the Zoloft thing with him.
    Lastly (and thank you all for reading this mammoth manuscript!) – do any of you ever have any quick, little minute jolts of pain or aches in the side of your ear to which you think your weakened vestibular nerve lies? Anyone else experience the jaw-clenching thing? Anyone else’s vision issue sound like mine? Some of you talked about working out: Have some of you ever experienced that… some days…where the dizziness is kinda there… that sometimes lifting weights can aggravate it or make it worse?

     
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    Old 02-06-2006, 07:34 AM   #2
    hbep
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    Re: another thread for us vestibular migraine/M.A.D.-ers

    Hi Matt,

    Sorry you're still suffering with this rubbish. In short, yes to all of your questions. I have avoided heavy lifting of any sort since the jaw clenching thing as my muscles around jaw/neck are highly sensitised and straining them can set off both headache and dizziness. What you said about vision is very consistent with what I get. The ache in your ear could be many things. I get pains in my ears and I think they are connected to both migraine and jaw clenching. The jaw and ears are intimately connected and ear pain can be a symptom of aggravated muscles from clenching. Of course ear pain can also be caused by migraine.

    Like you I am a bit at the end of my rope with all this. Was doing great a lot of last year with mini relapses but have been in a huge one for 6 wks now. I am about three and a half years in to this whole ordeal. The relapse seems to have been the result of a big stressful event and a cold/virus combined. Fed up beyond belief and working like this is no party. When you said - [I]The best way I can describe my dizziness is: feeling drunk… a whirly, , light-headed, swimming sensation in my head that simply makes me want to close my eyes and have the need to rest. Yup, that's a fairly good description of what my life is like at the moment. A new development is I spend a lot of the time hugely photosensitive - all light isn't pleasant - and the world simply looks too bright and surreal. In a nutshell, the whole thing sucks. I think I may have asked u this before but is your vision equal? Mine is unequal and I now wear contacts instead of letting one eye compensate for the bad vision in the other. Prior to the dizziness I never noticed the difference, post dizziness I think my good eye did a less good job of compensating for the bad eye and I could actually 'feel/see' the difference.

    I've just tried topamax, didn't get past 25mg, was on it for a month - hiked my tinnitus up and didn't seem to do much for me - also felt my thinking was scattered on it. Was in 2 minds about whether to stay on it, but my vertigo at night (I spin when I shut my eyes) seems to have improved since stopping so guess it wasn't the drug for me. Will have to try something else. What was your experience with it. Did it do any good for your symptoms prior to the hike in dose to 75mg?

    Anyway, sounds to me like your doctors have a good handle on what's going on with you - certainly sounds like migraine is the culprit. This sucks, I am currently indulging in a failry large pity party about the whole thing - it is so old, I am so over it, I just wish it would go away. Next stop for me is back to acupuncture as that seemed to help. And I guess then another drug.

    best,
    __________________
    hbep

     
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