The Vestibular Migraine Community

MAV for the third time in my Life. Help


#1

Hello everyone, I’ve been a long sufferer of MAV. I had my first encounter with MAV when I was 21 back in 2001. Happened right after I was prescribed the wrong med by my doctor. I got sick and then got hit MAV right after. I had all usual symptoms: brain fog, Brian burn, light headed, dizzy, blurred vision, Motion sickness Nausea, floor drops etc…the works! I went through every singe test, ear, heart, blood MRI. All clear. I nor did anyone else know what was wrong with me. At the time I didn’t have migraines or any out of the ordinary headaches that Tylenol couldn’t fix. That’s why I didn’t know it was MAV. However it eventually went away by itself after six months.

11 years later in 2012, I was in a high stress job, stress at home trying close a mortgage and sell my current house where the buyer didn’t have the funds on closing. So I had to scramble to relist our house and bridge my new mortgage. All of a sudden MAV came creeping back. Luckily by then I was married to a nurse who had connections with the right specialists. Once again, all tests came back normal. My last specialist and last resort was a neurologist. At the time I didn’t think a nero would be able to figure out what was was wrong with me as again I didn’t have any migraines or headaches that Tylenol couldn’t fix. After my first assessment my Nero told me I have migraines. I didn’t believe her but she told me these kinds of symptoms are also caused my migraines. I went home that night, did my google research on migraines and dizzyness and came across this forum and was so surprised and relieved that I’m wasn’t the only one who had the same symptoms as me. Finally I knew what was wrong with me.

My first attempt at meds was amtytriptyln. After one week of usage I experience my first serious encounter of migraines. I stopped taking the meds right after and started doing more research on meds people were taking and having success with on this forum. At the time it seemed that Sandomigraine had a lot of success. So I asked my Nero if I could be prescribed this med. after a year of MAV, it only took a month for it to start to go away. After 3 months I was feeling 90% which was amazing.

Which brings me to present day. I’ve been on Sandmigraine since then (6mg). Once again in Feb of 2017, it was a very stressful time at work and life. And ofcourse MAV had creeped back even while on Sandomigraine.

What should I try next. I’ve read that Effexor is pretty successful, but am terrified by all the bad media around SSRIs and all the horror stories of withdrawal trying to get off Effexor.

I’ve read Hains process of evaluating MAV.
Has anyone tried Norotriptylin, and or have been on it with Sandomigraine at the same time with success?

Any help would be appreciated !


#2

Hey, sorry you had to ‘come back’! Whilst stress is a fact of life I’m pretty sure its one of the big causes of MAV! I injured my ear initially, but the resulting acute imbalance cleared up within weeks. It wasn’t until 5 months after that I got chronic MAV and that was after a period of about 2 months of incredible stress (some of which was to do with a house too!)

I’m on Amitriptyline and a diuretic at the moment (in an attempt to lower hypertension) … so I’ll defer to the rest of the board on the meds …


#3

Hi,

I have had MAV for 4 years. When I was first diagnosed, Dr Surenthiran prescribed Nortryptyline. I found that at first the medication makes you feel really groggy then after a few weeks you start to feel better and certain symptoms disappear. I increased the meds, 10mg at a time until I reached 90mg and was 95% better,it was fantastic and I was symptom free for around 18 months until I overdid it and had a relapse. I tried to increase the Nort to 120mg on Dr Surenthiran’s instruction but it didnt help. Dr S then gave me Pitzotifen (Sandomigran). It has helped and im currently on Nort 110mg and Pitzotifen 4.5mg per day. I think Nort was great for me but of course we all know that the meds have a different effect on everybody. I notice that you are on 6mg of Sandomigran, is that the maximum dose for that medication? I have been taking Sandomigran for around 9 weeks and am starting to feel a bit better but think i need to increase.


#4

@rainbow555, up until my third relapse I was only taking 3mg. I started taking 6mg (which is max on paper my Nero says) as of Feb to now. I’m going to my Nero this afternoon to ask for Nortryptyline in combination with Sandomigran.


#5

im taking 80mg of propranalol and the only side effect i can see is my heart rate sometimes goes down to 47ish…It is stopping vertigo and migraines and my night time sleep attacks. I havent tried any other medication but ive had that much success with propranalol i figure why upset the apple cart. It hasnt stopped my blurry vision and some head pains but I can live with that. I reckon a bit of back of the head pain is a good way of letting me know Ive still got the horrible thing and not take anything for granted…and just try to enjoy life. paul.


#6

Your story of MAV coming and going for many years is also my story. I have so much to share about this and about getting in control that I put it all at my blog site (no ads). I finally went on Nortriptyline, the migraine diet, trigger avoidance and stress reduction (stress is a major trigger for those predisposed to MAV). Most have been under undo stress for 18 to 24 months prior to the first big episode. You are not alone with this problem and there are ways to get control. You just have to wrap your head around the solutions and it is not easy. Lifestyle changes are needed but you can do it. Many have. Good luck and I am sorry that we are no longer carefree. mvertigo has many helpful articles - especially the 2014 survival guide listed in archives. (www.vertigotalesandtastes.blogspot.com)