My MAV

Hello,

my name is martin and I’m from Germany. I have MAV since 2003. The first diagnose was Menieres Disease. But now the symptoms are more like MAV my doc says.
My problems are fluctuating hearing loss at the low frequency with tinntus and vertigo. And rotational and fluctuating vertigo.

I tried Betahistin (48 mg), Bisoprolol (5mg), Propanolol and Flunarizin (10 mg). Now I’m taking 5mg Bisoprolol and 10 mg Flunarizin and I think Flunarizin helps a little bit. But not enough. Today I had a horrible vertigo and a hearing loss at the left ear 2 weeks ago.

What could I do more? What is helping you with such problems?

Thanks for your answers and sorry for my English :wink:

Martin

Hi Martin
Sorry to hear you are having such problems. Was the doctor who gave you the diagnosis a neurologist with experience in treating MAV? There are plenty of meds that can help - there is a lot of info about them here on the forum. Print a list(s) off & take to your doc - you could then discuss which meds would be suitable for you to trial.
I have tried a few meds before finding some to help so don’t give up! Your English is great - couldn’t get past two words in German!
Barb

Hi Barb,

thank you very much for your answer. Yes, my Doc is a neurologist with experience in treating migraine and MAV. He gave me Flunarizine and it helps but not enough. Now he gave me Trimipramine. I hope this helps because I have Anxiety and voltages too.

Its funny but Beer is helping me. When I drink 1-2 Beers, the vertigo and also the hearing loss goes away. Knows someone this?

Thanks

Martin

Hi Martin,

For a lot of people on here it’s been a process of trial and error to find the best medication. There is no right/wrong answer, as you will see on here from the wide range of meds that people take. Personally I found a combination of propranolol and pizotifen to be the best for me.

I would also focus on trying to identify any triggers you have, and eliminating them where possible. Again, these vary a lot between people. My own personal triggers are flickering lights, not eating regularly, lying in bed too long in the morning, and alcohol. But regarding alcohol, although I find it a major trigger for my balance problems, you will find other people on here who - like you - seem to find it offers them some relief from their symptoms.

It’s a tough journey trying to find what helps, but hopefully you will soon get your MAV under better control.

Hi Beechleaf,

Not sure if you will see this but I was wondering if you were still on that combo of meds? Did you have bad balance/walking issues? If so which one or did both help with that? I wish I could try pizotifen but they don’t prescribe it in the U.S. unfortunately ugh.

Hi Sarah,

No I’ve not stayed on that combo of meds. I improved enough that I don’t take anything now :slight_smile:
The piz was really good for the balance issues. I was unsteady walking and got a lot of feelings like I was falling when I was standing or sitting still, as well as a constant rocking feeling, and it helped with all of these. I’d have stayed on it forever to be honest, had it not been that I was gaining a lot of weight. Once my MAV was stable I came off them. I’m kind of 95%, but I did feel better on the medication. However, I was miserable about the weight gain, so it’s been a trade off!

I hear you about the weight gain- I have gained 20 lbs from trialing meds…UGH! How much did you gain on the piz? I would LOVE to try it as it seems like people have great success with it, but I don’t think they prescribe it in the U.S. If only I could convince someone to rx it to me lol…glad to hear you are still doing well and thank you for hanging around the forum still!

Probably a similar amount to that, although I’d lost a few pounds to start with, so it was probably around 15lb more than usual. However, I’d not staibilised so would have carried on gaining weight, I think. I know it’s not a huge gain for most people but I’ve got a really small build and felt like I looked like I was pregnant, so that was not good for my self-confidence!