It took me a while to make it to the forum! I’ve had been feeling much better (up until a week ago) thanks to Adams help who suggested I try Topamax about 6 weeks ago. I’m from the DL. I had my first bout of vertigo in May and now I think I’m on doctor #7 or 8. I’ve been dx with Labrynthitis, vestibular neuritis, BPPV and basically self diagnosed with the help of Adam with MAV.
I’ve been trying to convince doctors here that MAV is real, but with no success. I saw a neurologist last week and he actually wanted to take me off the Topamax! It’s the only med that has given me any relief or hope. I told him that I thought there was a correlation between my dizziness and my migraines and it was quickly dismissed. I told him I was also taking a small dosage of amitriptyline and he took me off that suggesting it wasn’t a good combination with the Topamax. I agreed because I was complaining of cognitive issues: memory etc…and he thought he might be a contributing factor. He also started me on the anti-depressant Lexipro. And because my memory is so bad, I forgot to ask the dr to refill the Topamax (which I was out of) and that night I only had half the dosage I had been taking. Up until then, most days, I felt ok, as long as I got plenty of sleep.
The next day I felt horrible…just like I did before I started taking the Topamax. (I feel jittery, off balance and now feel a migraine coming on.) I wonder if it has anything to do with with not taking the amitriptyline? I was able to get the prescription the next day and began taking the same dosage I had been taking (50 mg). The only difference in the med was I was taking 2 - 25 mg tablets and now I’m taking 1 - 50 mg. I know that doesn’t seem to matter, but that’s all I can think of. I wonder if I should increase the dosage? It’s been a week and I feel awful.
I’ve gone to every type of doctor I can think of here. I guess I’m going to have to look somewhere else. If anyone is aware of a doctor in the Dallas area that specializes in MAV, please let me know!!
I was dx with MAV in Jul. 2005 at an ENT clinic in FT. Wayne, Indiana by Dr. Disher at their balance clinic run by Tom Boismier. I have been on Topamax since early Aug. and tapered up to 100mg. The Topamax has improved a lot of my dizziness, but I still have daily movement provoked dizziness. The constant daily nausea is about 85% improved and so is the extreme motion sensitivity I was having and that is a relief.
My rheumetologist prescribed Nortriptyline at a low dose for another medical problem and when I stopped it after only 5 - 6 days it brought on a migraine headache, nausea, motion intolerance and increased dizziness - all the symptoms the Topamax had improved. The setback to the previous symptoms lasted for about 4 days and then I felt better again. While Nortriptyline is different than Amitriptyline, it’s still in the same class of anti-depressants, so maybe it can react with the Topamax and cause a setback especially if you had to take a lower dose of the Topamax. You have to be really careful with the Topamax because missing doses can cause seizures in someone not prone to seizures. Now the doctor is trying me on Amitriptyline which I just started Fri. I find it interesting that your doctor didn’t think it was a good combination. I questioned the prescribing doctor about it and reminded her I was on Topamax to make sure it was ok and she said it was.
The Vestibular Disorders Association (VEDA) has a web site with a list of ENT docs (some are neurotologist) by state that show an interest in treating those with dizziness problems. The web link is vestibular.org/resource. Call and ask how many patients they have treated with MAV so you know before you waste your time on an appt if they even have experience in dx this problem. The VEDA site also lists some VRT therapists, they may know of a doctor that can dx MAV so try contacting them as well (Ann Katz in Austin is extremely knowledgeable and very helpful).
The nuerologist that diagnosed me with MAV actually told me that I am probably experiencing “Vestibular Migraines.” From everything that I have researched and conversations with my primary care doctor, this is just another term for MAV. Adam, feel free to correct me if I am wrong.
Just a suggestion, when you are calling around maybe you might want to ask about vestibular migraines as well as MAV.
Jeannette…I called the neurologist back yesterday after a week of misery and have yet to get a call back. So, last night I decided to start taking the amitriptyline again. It’s the only thing I could blame how I felt on. Today, although I don’t feel great, I feel better - maybe it’s in my head (LOL), but you can only go so long feeling like that. Thanks for the link - I’m going to start researching a doctor somewhere else. My kids are in school in Austin, so that would be great to go there. Does the Topamax give you any cognitive problems? The neurologist told me that was the biggest complaint he hears about with that drug? Sometimes I feel like my brain just stops working! I can’t think of words, I can’t compute numbers in my head, I basically have NO memory!! You should see my posts before I proof them 12 times…it’s like reading a foreign language. It’s embarrassing! I feel like I’m 90. I hope it’s the medicine. The doctor said I might have some permanent damage…I hope that doesn’t mean BRAIN damage!
Brian…thanks for suggesting the “vestibular migraine” rather than just “migraine”. I have realized that most doctors have never heard of MAV.
I have talked with a few people that call Topomax, “dopomax.” Myself, I didn’t have a problem with cognative abilities, but a big problem with temper. I tried another med in the same family and I did have cognative problems. I have since found one that seem to help most of my symptoms without the side effects causing more problems than the med was fixing. I think that once you find the right medication or eliminate the right triggers, the cognative problems should go away.
My cognitive skills in general have slowed down since I started having dizzy problems and fatigue, so it’s hard to tell if the Topamax has changed that yet. I do know before I started the Topamax when I was in Europe in Jul., I had a hard time converting American dollars to Euros or Forents, the currency in Hungary. This normally would have been very simple for me to figure out since I usually have a good head for math. I was having memory problems and word retreival problems and a hard time thinking and getting my thought out when I write something, but again these things all started before I started the Topamax. The Topamax did seem to make me more sleepy initially, but after the adjustment period I seemed to be back to the typical fatigue I had before I started it. Now with the Amitriptyline it seems to energize me to the point I don’t sleep well. It doesn’t hype me up as bad as the Nortriptyline did, so I will give it a few more days until I see the doctor next Mon. to see if it settles down. I don’t mind the extra daytime energy, but I can’t have it keeping me awake night after night.
Brian…I like your suggestion for “vestibular migraine” too. Many doctors don’t even seem to understand that dizziness can occur as a regular daily symptom of migraines - even the headache specialist…
I saw two nuero’s and the first one was actually trained by the second, and he was not aware that migraines could cause dizziness, just like you point out. I had to go to a neuro that specialized in dizzy and balance disorders to get the vestibular migraine diagnoses.
I’m glad to hear the Topamax was helping. It sounds like the amitryptiline was helping as well… so I’m glad you’re still
on the Topamax and back on the amitryptiline. It sounds like that combination is working reasonably well for you other
than the cognitive issues.
Don’t worry about it too much - it’s bothersome but its definitely a side-effect of Topamax and not something more
daunting. This side effect does get better - it’s almost like your brain sometimes rewires itself once it realises something is amiss
and this side effect may just disappear altogether.
The fact that these drugs are helping you indicate you are on the right path. Don’t feel too disillusioned by some doctors
being skeptical or knowing nothing about it - most of them will know about the association between episodic vertigo and migraine
(a lot of people have obvious auras beforehand or have a throbbing headache during) - but far far less know that it can cause
chronic symptoms. You are doing the right thing and I applaud you for making the decision to go back with the combination
that was working - regardless of the doctor’s opinions on the issue. It sounds like you definitely need time to deal with the side
effects - lets hope they go away! In the grand scheme of things, you’re on pretty low doses of both drugs and there are many other
migraine drugs out there. So if you don’t have success with one combination, at least you know there are more options for you
and you are on the right track.
Just had another thought - are you able to travel interstate? I know it can be hard both physically (motion sickness!)
and financially if you’ve been unable to work.
If you are able to - is there any possibility you could travel to California? Dr Robert W Baloh at UCLA is a world authority
on migraine, vertigo and ataxia syndromes. It would be interesting to see if he agrees with your self-diagnosis (it sounds likely)
and what treatment options he has to offer you. He said to a patient of his not too long ago (this is not a direct quote, but it went
along these lines)… ‘we will have a real solution to this problem within the next 10 years’. Heartening news…!
He may be hinting at gene therapy - his team has found many gene mutations as the cause of migraine and ataxia sydnromes -
but they haven’t found all of them yet.
Hey Adam…it’s good to hear from you. I did actually find a doctor from the vestibular.org website that Jeanette suggested. He’s in Austin and I was told he’s treats lots of people with MAV - so I’m hopeful! I’ve got an appt. a week from Thursday!! The neurologist that I went to finally did call me back and said to increase the Topamax which I had already done and told me to stop taking the Elavil again - which I’m not going to do… I’m getting a little frustrated, because I increased the Topamax to 75 mg, and felt better for a couple of days, but am feeling really bad again. Maybe part of it is some kind of aura, although the only kind I’ve ever had is spots of light, but this is more like head pressure, pressure in my sinus cavities and when I’m typing this, all of a sudden the letters are tilting to the left - crazy! I guess I’ll increase the Topamax a little more. You say I’m taking a “low dosage” so, I can increase it without worrying that I’m taking too much?
Thanks for the Dr’s name in California. If this Dr. in Ausin doesn’t work out, I’ll definitely consider it. I took a trip this weekend and the traveling didn’t seem to worsen anything (I don’t think anyway). I didn’t do any of the driving! I’ve tried, but that doesn’t work!! It makes me feel really bad!
The general guidelines for maximum dosage for migraine is about 150mg but there are quite a few people over on the Headache forums on BrainTalk who are taking as much as 300mg. That’s not to say taking that much is a good idea or is easily tolerable - but you’ve got some room yet. Losing effectiveness is definitely a sign that you might not be on the right dose just yet… but keep plugging away
I’m glad you found a doctor from the VEDA list. I hope he turns out to be a really good doctor for you. The first doctor I got from the list didn’t work out, but the other one did so just remember to keep looking if it doesn’t work. I’m glad you got an appt. so quickly.
It’s still amazing to me how many different opinions there are about the meds that are prescribed to us. Your doc says to stop the Elavil and mine says its okay. Just remember with the Topamax not to increase it too fast. My doctor had me increase it slowly staying on each new dose for a week. When I got to 75mg I stayed there for 2 weeks by choice because I was feeling more tired the first 4 days every time I increased it and that week I had too much to do to be tired.
My vision tilts sometimes too when I’m at the computer and at other times so your not alone with that sx or crazy.
Maybe the Topamax will give you enough relief so you will be able to drive again without it making you feel worse.
Jeanette…Thanks for the advice about increasing the Topamax slowly. I knew I should go slow, but I don’t think I went slow enough. I ended up getting really sick. I took 100 mg 2 days and ended up feeling worse than I have felt in a very long time. I couldn’t really even get out of bed. So, I started back down a little. It’s been 5 days and I’m finally feeling better. I had terrible headaches…today is the first day I haven’t had one in over a week!! : ) So, I think I’ll stay at this dosage until I see the new doctor next week.
I’m really hoping that this new doctor knows something about what I have (that will be more than the last 8 doctors I’ve seen!), but if not, I’m not giving up. I appreciate your encouragement! I’ll let you know how it goes.
Tresa…I was thinking about you this morning…it is morning right now in Calif…wishing you luck at your doctor’s appt. I posted a msg the other day, but it must have gotten lost when the web site went down the other day.
I live in the Bay and am curious if Baloh found the cure, email me if so or if he’s worth the drive (I just have dizziness aka neurologists have said migraines (ent’s all say it’s just migraines) firstname.lastname@example.org