Hi
I have been on the Menieres board for some years and recently was directed to this forum. I’d like some help to accurately describe my experience if people can assist.
My GP and ENT have diagnosed menieres variant.Have had two mri scans about a year apart, 6 years ago to rule out other things - both clear. I have no significant hearing loss and have been vertigo free for 2 years. In the last 12 months I have had monthly vertigo/tinitus coinciding with my hormonal cycle- which is why I was directed here to explore MAV. Most dizzy episodes only last 1 - 4 days. This time its lasted two weeks. Not strictly vertigo but very dizzy, eyes don’t track things properly when I move my head from side to side, and bad balance, nausea if I move around too much. It makes me very tired and I feel as though my memory and grasp of general life issues is cloudy at these times.
I have once in my life (2 years ago) had a classic typical visual migraine with no headache that lasted about 30 minutes. None since. Never had a typical headache migraine.
My dizziness has been explored as BPPV - but I can’t work out if it is or it isn’t. It certainly has never been resolved by the manouvers but the nystagmus can be worsened by the manouvres. So I watched the video here on the MEP and if I lie back with my head turned so its my right ear down and left ear up and my nystagmus worsens then which is the affected side? at other times I have had very distinct episode of positionally triggered severe vertigo and the manouvres can bring this on and if I wait in the position sometimes it resolves but a couple of times it hasn’t and I just can move in any direction with out it coming on. Often after the vertigo resolves I am left with dizziness and imbalance for some days - what is this? Are these all separate symptoms or can they be described more suitably than my attempt here?
thanks
Hi - welcome… I can’t answer all of your questions, but I will say that it really does sound like MAV, in that hormonal changes are a trigger (my MAV kicked off with perimenopause - groan). Also, when my ENT first was narrowing it down between MAV and Meniere’s (before I had my MRI to rule out other possible issues), I believe the deciding factor was that I don’t have any hearing loss (though I do have constant ear pressure and tinnitus), and Meniere’s generally presents with hearing loss and MAV doesn’t.
Hope that helps a bit! 
Be sure to look around at the info here on the site - there are lots of great articles and folks who’ve been dealing with MAV for a while and have great insights…
(Have you tried any meds yet - migraine preventatives or otherwise?)
Thanks Erika,
I have tried serc and for a while I thought it did nothing and then I thought it was actually working (took 3 per day for a year) but when I felt the episodes disappeared I went off them completely. Have taken them for about 4 years now.
I"ll take valium if the vertigo is really bad - but mostly I take nothing.
I am yet to suggest the migraine theory to the Dr…
Sorry, didnt quite understand your post, did you mean you took the Serc for a year then came off them or that you then took them again for 4 years? Are you still on them? I was diagnosed with menieres, then they said it wasnt, I was back and forth from neurology to ENT, had all the ENT tests etc. some small abnormalities found, but in the end they said it was vestibular migraine.
Your symptoms sound like mine. I stayed on the Serc as although it hasnt cured things, I think, long term, it has improved things and I know I feel worse if I come off them.
Christine
Sorry - yes that was a bit unclear…
2004 first episode of dizziness - came each day in the evening for about two weeks and in the months that followed it escalated into clear sudden episodes of vertigo that would strike without warning and be very debilitating. these would happen roughly ten time in a year? (but it was not regular) and i had background dizziness often.
2005 - 2008 I took serc regularly 3 times a day but it wasn’t until 2007-2008 that I started to be vertigo free - and so by about 2009 I stopped taking serc. Even after stopping it i only had ocassional short episodes that were not too disturbing (24-72 hours maybe 1-2 times a year) Then in Mid 2011 I started to get more severe bouts of true vertigo and background dizziness that lasted 3-5 days and coming on every month very regularly. I didn’t restart the serc because it seemed to take 2 years to work the first time! and I dont’ know whether the effect of serc was coincidental… but I did at the time feel it was helpful in controlling things… but it was never good at acute treatment.
So - current update this week - my GP suggested Vestibular Migraine and gave me topamax (the episodes are getting longer and currently I have been dizzy/vertiginous for nearly 3 weeks) - I have had just one dose and already I feel I have had my first straight day in nearly three weeks - is this possible to have such a promising result so quickly?
Yes, the Serc takes a long time to kick in and it is so subtle, its hard to notice at first. I have been on it for years now, but as you say, it is no cure and doesnt help the sudden attacks of vertigo. I have been trying to add a preventative med for years but seem to get side effects from everything. I dont get any from Serc.
That would be brilliant if the Topamax is helping you so quickly. There are quite a few people on here taking Topamax and getting relief from it.
Christine
so a bit of an update - the topamax didn’t go so well. I had terrible tingling, nightmares, and sometimes I slept well and sometimes I was awake most of the night, but mostly the biggest issue was the lactose and the upset stomach feeling (symptoms I only get when I eat wheat, lactose and fructose) -all on just 25 mgs - stuck it out for ten days lost 2kgs I don’t need to lose - so ditched it and went back on serc. I have NO SIDE EFFECTS of this at all - I have decided to take it three times a day and see how I go. In the past I have had long period of no vertigo - i just don’t know if they were because of serc or coincidental… because the relationship was not clearly one way or the other…and because I am supposed to use it 3 times a day - I forget - and when I’m straight I forget - so when I’m well I might only take it once a day or sometimes twice… so really hard to track its effectiveness…
I am today, straight, for the first time in five weeks, and I’ve no idea what to attribute the change to…but its about time !!! i also (in desperation to find a trigger) took off my toenail polish! to rule out as many things as possible. Another coincidence???
so… is it MM… or is it MAV… who knows, ?? I guess I lean towards the MAV (i have no headaches) mainly because the initial episodes 8 years ago came on like clockwork - 4pm every day for 3 hours for 3 weeks. like a cluster headache… and at other times the vertigo has arrived with my monthly cycle. I also don’t have any sustained hearing loss… However… I think MM can present like this too can’t it? If it responds to serc does that mean its not migraine?
Thanks (in advance) for ideas
Tangled, sorry the Topamax didnt work, but it sounds like the Serc might be helping you so I would keep on with it. I have been on it for years now (no side effects) and believe me, I get side effects with just about everything else! I think the vertigo at certain times of the month could be to do with the fluid change in the ears (the serc will help that). I was going back and forth from ENT to Neurology for years, told I had menieres, then migraine then both etc. etc. In the end, you can only find the meds that work and make you feel better. If Serc helps you, just a bit, I would take it, I do, then maybe look for another preventative med to take with it, if you need to. I do think you need to take the Serc 3 times a day. I am guilty of missing one or sometimes two tablets a day, when I do that for two or three days in a row, I notice the difference.
Christine