Confusion (long, angry thread -- avoid)

I realize I’ve had this stupid disorder for “only” 16 months (compared to others here who’ve had it for up to 20+ years), but I’m in an exceedingly bad (and depressed) mood, so I’m going to get this off my chest. This, below, really drives me up the wall. MAV is like being asked to slay a dragon while you’re deaf, blind, have one hand tied, and don’t even know what the monster looks like, how it’ll attack, or where to strike it.

What IS “migraine-associated vertigo,” really? Sure, we know how to define it, but we don’t know what makes it work. What makes it fire up, often for no reason at all? What is so completely screwed-up that some people get stuck – sometimes for YEARS – in a state of 24/7 dizziness that the brain obviously can’t free itself from?

No one, not even a top doctor like Hain or Rauch or anyone, really knows what’s REALLY going on. Probably, “MAV” isn’t one entity but a problem that can be the fault of any of dozens of chemical or electrical malfunctions. For that matter, this all begs the question: Is the vertigo part of an active migraine? Or did the migraine set in motion some entirely new/different neurological problem?

As begins the saying, “We can get a man to the moon, but we can’t (X).” We can see electrical function, with EEG’s and so on, but we can’t check the brain’s chemicals at the synapses. If someone figures out how to do that, it’d probably mean little short of a miracle for every MAV sufferer around.

What is it with these medicines / how do you “fight” MAV?
Some members here have tried 20+ medicines. There are more than 100 known drugs used in treatment – even “weirdo” ones, like serotonin antagonists. Some folks, like Scott and Kelley, try multiple drugs of the same class (e.g., SSRI) and get worse – and then yet another drug, again from the same class, comes along and WORKS. What’s the difference?

last parts
Go through potentially endless trials? I have a hard time seeing any reason at all to believe that ANY drug should EVER do the trick. I HATE all the suffering I see happening to everyone here. I hate reliving every day over and over again, like “Groundhog Day.” Of course, we didn’t “DO” anything to deserve this. Everyone thinks the answer is to just keep going and fighting on until you find the drug that works, and not give up, no matter how incredibly hard that is to do.

Well, that’s a fine philosophy, but… “Face it, George” – I say to myself – “not even your MAV doctor knows what the hell’s going on in your brain; he doesn’t know what drug, if any, will be ‘the one’; and just like every other person on the board, you just want your life back.” Lately I find I’m getting REALLY TIRED of the whole “give myself another shot of unfounded optimism” approach. No, quite frankly, I’m NOT coping with it, and I’m tired of waking up each day knowing full well it’s going to be hell. No, I’m NOT hopeful; no, I DON’T see an end in sight; we all understand MAV as well as a signpost can understand astrophysics.

Earlier I found myself doing mental math: “If I’m just about 30, and with any luck I won’t live beyond 80, then I have only 18,000 more days to go.” And then I forced myself to concede, mentally – “If I didn’t have a loving family and a few good friends, I would, right here and now, spare myself having to get through 17,999 of those 18,000 days left.” And what’s more, I’m willing to bet I’m not the first MAV’er who’s felt like that!

Read your thread and dont worry I hear ya! and understand every word your saying but it WILL go one day! you wont have this forever! It may come and go and so on but your brain will not stay int his state for the next umpteen years its a interchangable condition so keep hope okay if not today then tommorrow . YOU will beat this ! If you want a great story of hope let me know and I will send it you from a woman who suffered 18 months of this crap it will show you thereis light at the end of this dark tunnel xx

Wow…I am totally with you on this one. I have had MAV - apparently - since August 2007…well, that was the first obvious manifestation of a vestibular disorder. I suspect that I was symptomatic for many years before but had put the episodes down to either being hungry and faint/stressed and angry or whatever. Aug 2007 I walked into the house and zoned out on the right side…like a radio being tuned out…numbness, weirdness. After about 5 mins it all stopped but the dizziness and instability started in earnest from then on. My GP hadn’t a clue…sent me to ENT who sent me for an MRI and to see some idiot General Physician who made me hyperventilate and when I got dizzy said “there’s your problem” ie you’re in panic mode. Finally, after two months off work walking on marshmallows and waking every day with a thick head, spinning in my sleep, feeling as though one side of my body was elevated or that novacaine was wearing off…I asked for a referral to a neurotologist in London. There I was put through the rigmarole of balance tests etc and finally diagnosed…by exclusion it seemed…with MAV. Topiramte nearly killed me and lamotrigine made me bloated and sick for 8 months. I just got back to work and took one day at a time. Not many of them were good. I am better than I was but some days are still pretty awful.

Now, three years on, like you, I question every day what the HELL this MAV thing is. And why has it suddenly become such a prevalent diagnosis. Almost like the disease of the day. My GP has never heard of it and thinks it is all hormonal…but maybe he is right…maybe he isn’t. So many specialists saying so many different things too: the migraine diet (tried it, drove me mad, yet something else to make llife miserable), exercise regularly (yes, I run 3 miles three times a week …don’t always want to…but I do it. No difference), sleep regularly (OK, I try but have to get up every work day at 6.00am…do I want to do that on the weekends too?)…And then there are the drugs…all of them with their myriad, maverick side effects. If the nausea and comatose effect doesn’t stop you working then the weight gain and bloating will destroy all the remainder of your self confidence. Or you’ll forget how to put two words together. Or, in my case, spend two weeks crying over Xmas/New Year with suicidal ideation. Lovely. (Still with the instability stuff going on too).

Just got to hang on in there I suppose. I don’t have any real faith in the medical boffins. I’m just thankful that I am still working full time so our family life can continue OK for money etc, and that I can still exercise without falling over.

Blah.

I can guarantee anything with ‘avoid’ in the title is bound to lure me in.

I totally identify with the sentiments expressed in these posts. I’m having a ‘good patch’ at the moment, so not actually in the clutches of MAV, but sometimes I catch myself thinking about it all objectively (or so I think) and it does beggar belief. I’ve had it for 24 years - not continously thank God - I had an 11 year remission. My first diagnosis was ‘hyperventilation’ too. Then I just did the round of psychologists and psychiatrists. I was still a teenager and the doctors managed to convince my parents it was all psychological.

I remember being told by a psychologist or doctor, I can’t remember, when 19, ‘for goodness sake girl, what are the chances you’ve got something that no one’s ever heard of and hasn’t been discovered yet?’ I had no idea how ironic this would prove to be.

I got my diagnosis 24 years later. In my 11 year remission I actually began to believe I’d imagined it all.

It is not a new phenomenon. I had it in 1988 - I’m sure there were loads of other people in the world who had it then too but we had no internet then. I think this is really significant. I thought I was the only one in the world with these symptoms. Doctors didn’t have the internet either and such easy access to contemporary research as they do now. Think of all the so called ‘possessed’ people in previous centuries, those committed to asylums and women in novels who took to their beds with vaguely termed illnesses such as neurasthenia.

As patients or sufferers of this crappy thing we for the first time have a glimmer of hope in that we can now have a reasonable discussion about this by virtue of the net. I’ve often actually thought about the fact we got a man to the moon 41 years ago and still know jack shit about the brain. I think this is changing quickly, even exponentially, and we are finding out stuff about the brain that was unthinkable ten years ago (e.g. regeneration of neurons; being able to move objects with thoughts).

Unfortunately, MAV and migraines in general aren’t ‘sexy’, not do they pull at the heartstrings or put the fear of God in people, like cancer. We need to put pressure on governments and pharma companies to fund more research, but lord knows how. There aren’t enough of us - or maybe there are - we don’t even know the true figures for this thing!

It’s the London Marathon tomorrow and I have 2 friends running for charity. One’s being sponsored to raise money for breast cancer and the other for a children’s charity - fantastic worthy causes, of course. But I doubt whether anyone’s being sponsored to run for migraine sufferers, or meniere’s sufferers, and I certainly can’t imagine going round asking people for money in aid of ‘Migraine Associated Vertigo’!

I do have days when it seems hopeless and I have contemplated the unthinkable. I also have days when I feel I am winning the latest battle (obviously not the war) and there’s no more reason to feel hopeless than there is to feel hopeful. I’m not talking blind optimism, just realism. This thing mysteriously starts and it mysteriously stops. Just when it really does seem to be Groundhog Day again, suddenly it’s not.

But yeah, it’s crap, it’s shite, and it would take a saint to be able to stoically accept it.

But for what it’s worth, I totally understand.

Dizzy Izzy

I hear you loud and clear, George and everyone else. I saw my regular old doctor last week for my yearly physical and we were having another converstion that went nowhere about my vertigo and motion sick issues. He said he doens’t know what is causing my vertigo and in most cases the cause is never really discovered. I told him I have been diagnosed with vestibular migraine and asked what he thought about that. He kind of laughed and said that is what they tell you when other causes have been exhausted and they don’t really know what else to say. In other words, it’s a nothing disease. Now I’m back to square one.

On the meds - I hear you there also. Sure there may be 100 different meds to try for this and you give each one a three month trial and have none of them work and where does that get you. Then maybe you need to try different combinations so how many more months does that take. Eventually you might feel better but that might just be a co-incidence because 6 months later you might start feeling bad again.

It keeps coming back to my mind to go to someone like Rauch but then I ask myself, is it really worth it, he’ll give me a new med, I’ll try it and after 30 or 60 days probably won’t be any better, so then what do I do, spend another $500-$1000 just for the overnight trip to go see him and have him give me another med that doesn’t work and continue this for the rest of my life.

My doctor’s advice for me last week was to stop fighting this, if meclizine or valium helps take it every day (I have been avoiding it unless absolutely necessary, trying to fight through my daily feelings of motion sickness) and let it work for me so I can get on with my life. I’m not so sure I want to go this route either, so I sit here, stumped . . . what to do?? I don’t know . . . .

Hi Book,

He said he doens’t know what is causing my vertigo and in most cases the cause is never really discovered. I told him I have been diagnosed with vestibular migraine and asked what he thought about that. He kind of laughed and said that is what they tell you when other causes have been exhausted and they don’t really know what else to say. In other words, it’s a nothing disease. Now I’m back to square one.

I’m really amazed when a doctor will say something like this – that it’s a “nothing” disease. Is the guy just arrogant? Old school? Is he familiar with any of the literature out there on migraine and dizziness/ cognitive problems? There’s solid data on the relationship between migraine and depression/ anxiety etc. To just blow it all off like that to you is so irresponsible and idiotic of him. Imagine if you had no knowledge about any of this via this forum and others how you would feel? I bet thousands of sufferers hundreds of years ago ended up in asylums with this or were just written off as crazy. And we would have gone crazy with anxiety without any meds back then.

George - I’m sorry you’re feeling so frustrated. I am too this morning to be honest. I can hardly believe sometimes how much time this disease has consumed from my life or that I need some sort of anti-depressant to feel myself and upbeat again and not dizzy … or that I can still, after all of this time, have neck pain episodes of this magnitude (the current cycle). I can barely turn my neck to the right.

Dizzyizzy - not “sexy” is so true. When you put it that way about running a marathon for something like this, it’s no wonder progress seems so slow. It’s the invisible phantom that never kills anyone so why would anyone respond? And to make matters worse we still have doctors out there who call it a nothing disease!

Scott

eScott, in defense of my doctor, I should clarify - I’m the one who said it is a “nothing disease” not him. He is the one who said this is what doctors diagnose when they don’t know what else is wrong and in my extreme frustration I took that to mean it’s a nothing disease. I don’t know how else to take his explanation. I feel the same way as when he told me I have “fibromyalgia” because no one can find the reason for my bad neck, hip and other joint/muscle/pain. I like this doctor, he’s my PCP and I’ve been seeing him for years. When I went through a terrible depression several years ago he helped me a great deal. But if something isn’t seriously wrong he attitude is kind of a “live with it.” In this day and age of 10 minute appointments and insurance this and that, and expensive office visists and testing, unfortunately this is becoming a norm. I have to visit him again in a couple of months to get forms filled out for my driver’s license renewal (cause of my vertigo issues have to go through this now) and intend to pursue this a little further. I’m very interested to know if he sees Meniere’s in the same way he sees MAV. I am quite a hypochondriac and at times can be a frustration to the doctor.

I’d love to find a doctor who will sit down with me and work with me at finding the cause of my vertigo and help me with a treatment plan but it doesn’t seem to be working out for me. The last neuroTOlogist I saw more or less told me he couldn’t do anything else for me and wished me good luck as he dumped me. I’m sick of fighting with doctors. I am grateful for this forum and access to medical articles on the web because without these I never even would have heard of MAV.

Book