I had a phone consultation with Dr. Hain a couple of months ago (he diagnosed me with MAV) and since our conversation, per his recommendation, I have tried Effexor 37.5mg/day for a couple of months and though I sense a bit less ear pressure, the dizziness remains.
I tried to go up to 75mg but could not stand the side effects. I plan on working with a local doctor and add a beta blocker. If that fails (effexor+beta blocker), I plan on trying effexor+verapamil. If that fails, next would be topamax. I have already tried nortriptyline and verapamil both individually and combined and that all failed to reduce my symptoms.
My question is, if the topamax, effexor and beta blocker (and the appropriate combinations) all fail, do I not have MAV? I’ve tried the migraine diet but didn’t notice much of a difference.
I understand your concern, as I worry about that as well. I guess we just have to be hopeful that a medication will eventually work. We also cannot consider a drug a failure unless we get to the therapeutic dose on it. what dose did you reach on Nortriptyline and Verapamil? I got up to 480 on Verapamil and it didn’t relive my dizziness whatsoever. I also tried nortriptyline, and it didn’t help me. however, I only got up to 20mg, which isn’t a good trial. I will most likely be retrialing Nortriptyline in a month after I have the baby, since it is my docs first choice. I wish you a lot of luck. i hope we all find treatments that help us. what are your current symptoms?
To add to what Lisa said – no, failed drug-trials don’t disprove your diagnosis.
The medicines you mention are certainly Hain’s favorites (for the most part), but he has a LOT of “alternate” drugs that he goes to when the major ones fail. I’m of the opinion that no two cases of MAV are identical, which is why there’s so much trial-and-error involved with the drugs.
Also, I’m not sure the “migraine diet” helps as much with MAV as much as it does with migraine headaches. If you have constant dizziness (rather than episodes of it), dietary changes probably won’t help right now (it can help prevent future migraine attacks, but for now you have to kill the current migraine).
I got up to 150mg of the norti and 360mg of verapamil. currently i’m on 37.5mg of effexor. just scared that it took me 11 years to get a dx of MAV and what happens if none of these meds work:
verapamil
norti
effexor
propandal
topamax
I too have the same fear. I have been virtually bedridden for 2 years, with 24/7 suffering, even during the night. I have given verapamil a good 5 month trial with zero effect on my MAV symptoms. I have been on clonazepam for 2 years with no help. I am currently on topamax for over 2 months and almost at 100 mg (start next week) with zero effect on my MAV symptoms. It is quite scary and yes I know there are many drugs out there, but time passes and we continue to suffer and I can definitley empathize with what you have written Tekksan. I am not sure of your functionality but I do share greatly in your fear.
I am so sorry to hear how long you were ill before getting a dx. It just seems like some meds work for some, and not for others. so frustrating. what was hain’s take on verap and nortriptyline not working? how debilitating are your sxs? again, so very sorry that you 've been sick for so long, and I wish you much better days. I’ve been sick a lot less than you - 2 1/2 years - but it is evident to me that this illness can go on and on and on until appropriately treated. We all need crystal balls to tell us what meds will help. until then, the trial and error is quite tough, but the only way to beat this.
I’m glad I read the e-medicine article early on (a link to it is in the articles section) - it states that for migraine associated vertigo, dietary changes help less than 25-30% of patients. Since I’m a chocoholic, I’d hate to think that I’d have to give it up (give me chocolate or give me death - escpecially the dark kind, since it’s good for me and since I don’t want my “drug of choice” diluted).
On the other hand, a quarter of us is a pretty big contingent - and managing this beast by changing what foods & beverages we consume would eliminate the side effects issue for the most part (well, you might get “irregular” or something if you’re not taking in what your gut is used to).
But we do have to take a long view because many of the treatments for this take a long time to titrate up to a therapeutic dose, and then they don’t work right away - often not for weeks - even when you reach that dose. No quick fix.
It’s so very hard, but try to remain hopeful that there is a treatment for you, whether it’s one medication or a combination, that will make things better. Since Scott’s been talking about the book Migraine Brain, I decided to order it - after just skimming it, I realized that I need to do much better self-care than I’ve been doing: while I get an A for sleep hygiene (I get my 7 or 8 hours EVERY night), I do NOT get enough exercise, and my migraine brain would be better off if I did. That gives me hope that there’s still room for improvement in terms of what I can do to help myself, and I have an appointment Friday with my neurologist which also gives me hope that maybe there’s some medication adjustment we can do too.
Hope helps everything. Even if it’s just a glimmer.
You’ve asked a good question and it is something I have wondered about also. I’ve been on nortriptyline for almost two weeks and so far have noticed no difference at all, if anything I feel slightly worse. And it isn’t having the sedating effect on me that it is supposed to, instead I have the worst insomnia, night after night. It is getting a little better though, instead of 3-4 hours of sleep, I’m up to about 5.
If this doesn’t work for me I don’t know what I will do. I had problems with Topamax; beta-blockers are out. Because my blood pressure is on the low side, the doctor doesn’t want me to try a calcium blocker. I think I took effexor years ago (for depression, not MAV) and had side effect problems with that. At this point my options are few so I’m trying to stick with the nort, hoping it will kick in soon.
I do avoid the biggies on the migraine diet, such as wine, cheese, msg, caffeine but do not stick with the diet 100%, I’m closer to 90%. My vertigo spells started AFTER my doctor told me I needed to bring my cholesterol down. I gave up a lot of stuff then, frozen dinners, canned soup, chocolate, etc. Sometimes I think maybe I should go back to my high fat diet. Seems I was better off then. I really haven’t been able to find any food triggers for either the eposidic vertigo I have or for the near constant feeling of motion sickness.
Like you, I’m also wondering, if nothing works does this mean I don’t have MAV? And if not MAV,then what?
Dr. Hain reviewed my medical data and said he doesn’t think I have MM (probably because I have no hearing loss and all my ear tests are normal-including the ECOGS, etc.) He thinks my most likely dx is MAV though he suggested fibromyalgia could be suspect (but I don’t have any pain excluding my neck and upper shoulders and my understanding is with fibro, the pain is widespread and very obvious). I suspect he thinks fibro may have something to do with my issues because its symptoms can mimic MAV. My basic symptoms for the past 12.5 years are 24x7:
dizziness
feel like I’m wearing hat (tight feeling around head mostly on the right side though)
ear fullness
stiff/crunchy neck
brain fog
visual problems
fatigue
My mother has migraines and my brother has the same type issues as I do (24x7 dizziness, etc.) though he claims to have found some relief by putting tubes in his ears.
I’ve tried all kinds of treatments imaginable. This all started when I turned 25, out of the blue!
I suspect he thinks fibro may have something to do with my issues because its symptoms can mimic MAV.
In what ways did he think fibro mimicked MAV besides neck pain? Did he say it could cause dizziness? That would be the first I would have heard of that.
About the firbro, only thing that makes me think that is an unlikely dx for me is I don’t have widespread pain. From my reading, fibro patients have widespread deep muscle pain and I don’t really have that. I just have pain/stiffness in the neck. I also don’t have sleep problems to speak of. All so confusing…
I am so glad I read this…It gives me some hope…I have been on meds and nothing seems to work well for MAV…Tapering off of gabapentin…almost done and feeling as horrible as can be now…Is it possible to have no withdrawals and then they start just when you are about to stop it completely???