VM and Ménière’s

[youngdavid]

I have had suffered the symptoms of vestibular migraine and some cross over ones of Ménière’s 24/7 for last 7 months. Taken Propranolol for 3 - 4 months with marginal effect. Doctors not suggesting solutions other than keep taking the tablets and vestibular rehab exercises.

My symptoms are often quite severe what are other sufferers experiences?

[meggiemog]

Hi,

I am only started on a similar path as you - only been taking propanolol for a month now - but looking at a headache diary I was asked to keep - it has helped me to a degree. I do not have Menieres type symptoms though - I am just unsteady - like on a ship. I am having vestibular tests next week (never been done) I also have quite bad one sided deafness which doesn't help!

I am not sure there is much more the doctors can do - perhaps a change in meds? Or maybe dose needs tweaked. I take 80mg slow release propanolol at bedtime once a day. When I am having a bad hearing day I still get a banging bad head - but it has decreased quite a bit. I was getting a bad head almost every day - migraines about 4 times a week - i would say that has halved . I would also say for me personally alcohol is a no-no as this can effect me for a couple of days. Do you suffer from tinnitus as well? I don't think that helps bad heads either! Mine seems to ramp up with a migraine.

I'm sorry I can't really give you answers - but absolutely understand your situation.

[youngdavid in reply to meggiemog]

Thank you for the reply and I sympathise with your plight! Like you and the ship I seem to walk on water filled mattresses often in a dizzy state. Headaches tolerable but discomfort from light so adult I need to be in the dark and cannot easily watch tv or read.

I do have quite aggressive tinnitus multiple noises and physical discomfort in my ear.

I am on the same medication as you but also have a night time 80mgs.

I hope your vestibular tests are helpful and I personally find vestibular rehab exercises do make a difference.

Good luck hope all goes well.

[Gambit62]

there is an interesting podcast specifically on vestibular migraine in the heads up series produced by the national migraine centre that is worth listening to

nationalmigrainecentre.org....

episode 9

[youngdavid in reply to Gambit62]

I have listened to it and it is very good. I may have to listen to it again though as I am not sure I picked up anything practical I can use at this time.

The young ladies account of her illness was very interesting .

[Gambit62 in reply to youngdavid]

I can't honestly remember the detail of individual pod casts but it may be that looking at some sort of preventative might be useful to you. I'm pretty sure that they mentioned the use of physiotherapy. I was having problem with balance at the start of this year - manifested as sense of weakness in my ankles - I visited a physio I went to when I had a broken ankle a few years ago and she gave me some exercises to strengthen the ankle/awareness of the ankle and they really have helped me so it may be worth considering referral to a physio ... or looking for a more relevant physio if you have consulted before.

[scottlondon]

Check out the rock steady group on Facebook for tinnitus also look up videos by joey remenyi on YouTube which will intrest you I’m sure.

Also worth your time is any groups on Facebook for tms or tension myositis syndrome also a group called pain free you.

[debraoliver]

My husband has Meniere's and had surgery several years ago in St. Louis. that has helped him so much. The local doctors were clueless and misdiagnosed him. But before and since he has gone to an extreme low sodium diet and is now Gluten Free and no alcohol. Those dietary changes have brought his recurrent dizziness down to a manageable place. Also takes hydrochlorothiazide every day as a diuretic.