Quick background: For the past 12 years, I’ve had all the symptoms you are all probably familiar with: brain fog, dizziness, head tightness, feeling like my head is suspended in water, imbalance, cognitive/memory issues, visual problems, feeling like I’m falling out of bed, ear fullness etc…
After 12 years of being told I “probably” have VN or Meniere’s I am convinced that I have MAV. My mother has “classical” migraine symptoms. I have had “typical” migraines (throwing up, etc.) a few times, I’ve always been motion intolerant even as a kid (I was most miserable in a car), I hate bright light and loud noise, etc. etc. All the symptoms I’ve read about associated with MAV are very familiar to me. All my symptoms are 24x7 but when a low pressure weather system rolls in, I feel worse. My brother also has dizziness problems.
I’ve tried the migraine diet to no avail and I’ve tried Verapamil (320mg/day for a few weeks) before the side effects were too much to bear. I would say there were two days when I felt noticeably better. After Verapamil, I am now on Nortitriptiline. When I hit 75mg/day I probably felt the best I have felt in 12 years but only for a couple of days. I increased too fast to 125mg/day and now I’ve dropped back down to 75mg/day. I’ve been at 75mg/day for about a six weeks. I have not felt good like I did for those few days when I first hit 75mg.
I’ve been to probably 15-20 doctors over the last 12 years and none of them have been of any use. I have no hearing loss and no tinnitus and no episodic symptoms but one neuro-oto I saw said he was 90% sure I had Meniere’s. I told him I disagreed with his dx and he got pretty rude.
I’m thinking the fact I have noticed significant improvement two times on MAV preventative meds solidifies my thinking of a MAV dx. What do you think? Also, if you take nortitriptiline, how much do you take and how long before you noticed a benefit? I’m still on the MAV diet but I think I cheat too much. I will have to try harder to stay the course.
Hi, I may not be much help but I thought I would pass this along. The migraine Drs that I have seen have all said that they likely wouldn’t go above 50 mg for Nortriptyline and migraine prevention. While I don’t think 75 mg is too high, I may start to pause above that. I tried Nortriptyline but didn’t make it past 10 mg due to side effects (extreme anxiety and high blood pressure). Good luck! Ben
Hi,
It certainly sounds a lot like MAV, I believe one of the factors used to differentiate btwn MAV and menieres is hearing loss. If you’ve had this for years and have seen a number of doctors over that time, you may have more luck now. I’ve had this for 7 yrs and there is certainly more understanding and education amongst doctors about it now then when I first got ill. The fact you have classical migraines and your mother suffers from migraine plus a dizzy brother would suggest it is migraine too. It is hereditary. It is actually possible to have both menieres and mav, although again I would expect hearing loss for that diagnosis.
Are you in the The States? If so someone will be able to suggest a good neuro or neurotologist near you who knows MAV and can diagnose properly. Many people on the board have consultations with some of the top specialists. I am in England so could advise re specialists if you’re here.
It can take a while for any preventative to work, they normally quote anything from six weeks to three months, but of course it’s trial and error, many preventatives simply don’t work for some people, or make them worse. You just have to feel your way and if you think you’re getting nowhere with one, then dump it and try another.
In your shoes I’d ask advice about doctors and try and see someone who definitely knows their stuff. My guess is you almost certainly have MAV, but I’m not a doctor, just someone who unfortunately knows a lot about this stuff as sadly I have this annoying condition.
It definitely sounds like you’re a migraineur to me as well and I would have also doubted the Meniere’s dx. If there’s no hearing loss I’d say it’s unlikely as Hannah pointed out. Strange how you were good for two days on Nori and then it died. No explanation for that. Not sure if you saw this in the Rauch sticky, but he states the following about Nori:
“In my own patient practice, my first choice of migraine suppressant is nortriptyline, a tricyclic. This class of drugs was invented over 50 years ago for treatment of psychotic depression. Dosing for that use was typically 300 mg three times daily. Nortriptyline works well as a migraine suppressant and typically achieves significant symptom control at doses of 30-50 mg/day (1/30th the dose used for the psychiatric indication). I typically start patients at 10 mg each night and increase the dose by 10 mg every 2 weeks until we get symptom control or unmanageable side effects. The maximum dose would be 100 mg.”
I was on nortriptyline with good results for close to a year. I started out at 20 mgs. I remember it taking a while to work. Probably 6 weeks or so. I would feel 80% normal most days on it. Never got to 100%. It also seemed like every 2-3 months my body would adjust to the medicine & I’d have to increase my dose. I don’t think I ever got as high as 75 mg. At about the 10 month point, my resting heart rate was so fast the doctor made me go off the med. I was very disappointed because it has been the only thing to help me that much!
Hi Dizzygrl,
How frustrating to have to go off a med that actually works b/c of side effects! I know others on the forum have had similar experiences with a variety of meds. Have you found another med that has helped you as much as nortriptyline?
Thanks,
Lisa
Let me take a wild guess, based on Scott’s quote of Dr. Rauch:
You said you were going up too fast. So perhaps you were using 25 mg pills, and the dose before 75 mg was 50mg (one of the doses Dr. Rauch finds to be optimal). Very often when you’re on a certain dose, it doesn’t start working til after you’ve been on it awhile - it might possibly even start working during the first couple days AFTER you’ve switched to the next higher dose. Maybe 50 mg is what really made you feel well, but maybe you unknowingly began to undo the good it was doing by starting to take 75 mg - or too much of a good thing?
Interesting MaryAlice. I hadn’t thought of that. I’ve been maintaining at 75mg/day now fow several days. I’m going to just hold there for a while. I’ve still been feeling ‘not good’ but I’m going to try and stick it out a bit longer.