Hi Just looking for some advice on whether I might have MAV.
In 2007 I got sudden vertigo shortlived followed by general dizziness? Labyrinthitis, it settled quickly as I remember probably within a few weeks
In 2013 I had a sudden severe attack which followed with a panic attack, they put it down to something cardiac and investigated that- all clear. My GP mentioned labyrinthitis , said it should settle and suggested any remaining dizziness could be anxiety. I remember periodically having dizziness but assumed it was anxiety related. It went within a few months, although I have had very brief episodes since especially turning over in bed which woke me up
4 weeks ago I suddenly went down with severe internal vertigo, palpitations, shaky, nauseous. I had felt off for a few days, with pressure in my ears.Checked over in A and E - nothing cardiac. Given stemitil which helped a bit. Discharged with ENT follow up ? Labyrinthitis. Saw a ‘very’ junior doctors in ENT who felt labyrinthitis should settle. Sent me for MRI inner ear to rule out acoustic neuroma as had tinnitus for a number of years but it had got worse with this- that was clear. Since then I’ve been following a pattern of attacks whereby I get internal vertigo, have to lie completely still in dark and quiet, if I move any part of me it intensifies, nausea/vomiting, neck pain, strange feeling on one side of body like I’ve had a stroke and anxious. This lasts 5 or more hours then in between I’m left wobbly, dizzy and off balance until the next attack. There doesn’t seem to a pattern to them but there at least every 2 days the last 2 weeks, sometimes every day. GP has given me serc and I’ve had a CT head which was clear. Could this be MAV? I will go back to discuss with GPS but this forum seems very knowledgeable and would love some advice. Are GPs likely to be willing to try some medication for migraines or want to refer me on?
Thanks for any insights
Hey, sorry you are here, Helen, but it’s the right place by the reading of your post.
I’d be very suspicious of diagnoses of recurring Labyrinthitis as viral outbreaks that deep in the body are supposed to occur only once or twice every lifetime (nearly as likely as being hit by a lightning strike they say!)
Your attacks sounds EXACTLY like a vestibular migraine. I used to have them in increasing frequency up to once every two days, at which point they seemed to become self fulfilling due to lack of sleep. Go to see a specialist (e.g. neuro-otologist) straight away via referral. In meantime if the migraines persist ask your GP if you can take amitriptyline (starting at low dose of 10mg - 10mg was enough to knock out my migraines but your experience may differ), I’m sure that will be far better than serc if its migraine! If he/she is not comfortable to prescribe, get that referral asap. There are other meds to try but that is one of the first line of defence drugs. If amitriptyline works you won’t need serc I don’t think - those don’t sound like meniere’s attacks (and in any case serc use is contentious)
Most people have clear MRI’s & CT’s. I had a clear MRI (thank goodness - neuroma is far more serious)
Good luck and let us know how you get on - this condition is HORRID but the meds can make life FAR FAR more bearable.
James
Thank you, that’s very helpful.
Would I need to go private to see a neuro-otologist do you think? Not sure what there is available in Norfolk!
I will go and see my GP asap and discuss the medication, hopefully they’ll be willing to try it
I am a bit fed up after 4 weeks of this but also relieved after having the clear scans it’s something that will get better eventually
Thanks again
This board will be the best thing you ever found. The specialists don’t offer a cure for this - they can help by ruling out anything more sinister and with symptom management. The only cure for MAV is time and patience, and some say a healthy lifestyle with lots of exercise. It’s not entirely the specialists fault - there is presently no scan to see exactly what is going on in the inner ears - they can only do hearing and balance tests and look for nystagmus (movement of eyes) along with your description of symptoms.
You may be very lucky and this will clear up soon, but I will warn you it can be a long haul - I’m about 1 year in of my chronic phase. This board has seen people generally get better after a couple of years or more and some of those remain on migraine medication.
In any case you can get it much more bearable if you take meds and/or supplements. User ‘liv85’ has posted at length on how she has replaced medication with supplements and maintained relief.
Get familiar with Dr. Hain’s website, its the best on the web, but try not to do a lot of web reading, you can give yourself health anxiety and that is not pleasant and will make you feel worse.
This is his page on MAV:
And his guide to drugs for vertigo:
Thanks again. I figured it might be a long journey till I was 100% again. If I can get to the stage whereby I can function even just to walk my kids to school I’ll be happy. Going back to work will happen when it happens.
I will look into the info you gave.
I appreciate the help
No problem. I’m also UK based, London, btw, and I know there are several users from the UK and we have lots of European, U.S.and Canadian friends on here 
Yes, you will get back to functioning. I’m back at work nearly full time now but it took a while on the meds for me to get to that point.
I do plenty of exercise - its very important you don’t limit yourself and do not avoid any activity (within reason) as that can start to affect you mentally. Its best to try and lead as normal a life as possible. I found going to the supermarket quite challenging before I started medication because of the artificial lighting everywhere, but now no issue.
I run every two or three days, I cycle, I walk to work (I do not feel at all dizzy on bicycles, go figure!)
I love exercise. I’m normally at the gym 4-5 times a week. I will get back to it as soon as I can.
Will try and see a GP at my surgery who I know is helpful- there a few really good ones there.
Thanks for the welcome
Pleasure.
In the meantime I would recommend not drinking caffeine, alcohol or eating chocolate. Herbal tea is the order of the day!
You can experiment re-introduction once you are stable and migraine free.
Just to update
Saw my GP this morning. He was kind of skeptical about the idea of MAV but was willing to Google it, had a read and agreed to a trial of betablockers. So I have propranolol to try. He still thinks it’s probably labyrinthitis that will just settle.
I think I will look into seeing a neuro-otologist privately anyway. It would be interesting to see what they say.
That’s a reasonable drug to try first (see Dr. Hain’s workflow). I didn’t get on with it though your mileage may vary. If it doesn’t stop the migraines (give it a couple of weeks) request another drug. As I posted, you don’t get repeated bouts of Labyrinthitis - they are lifetime one-offs. These days acute vertigo episodes are now called ‘acute unilateral vestibularopathy’ as experts generally don’t like to assume a specific cause without a lot of evidence. And you can just imagine how many people are told they have had ‘labyrinthitis’ for acute episodes that resolve on their own. There is no burden on them to prove that you’ve had it as for many people its simply the only experience they ever have of vertigo and for many it never comes back so the doctor never has to take further action.
Thanks. I will give a few weeks and see how I go.
He’s signed me off work another 2 weeks which is a relief, no way can I go back yet.
Thanks for the helpful advice
Absolutely you can’t go back with these horrible migraines. Take your time and try to relax (hard I know!)
Just here to update
The propanolol helped a lot with all my symptoms but unfortunately it started to give me shortness of breath and palpitations. Saw my GP yesterday and I’ve switched to amytriptylline. Started last night and had the best night sleep I’ve had in weeks. Today though I feel drowsy and more dizzy. Am having a quiet day. Hopefully I’ll see some improvements with it soon.
I had the same problem with Propranolol and Amitriptyline suited me much better. Yes, initially you may feel drowsy in the mornings - try not to take it too late in the evening: I usually have mine around 9:30pm.
I listed the side effects I’ve had here:
http://www.mvertigo.org/t/amyltriptaline-or-norotriptaline/13007
But I felt night and day better within days!
What dose are you one and have been told to climb to?
I’m on 10mg. He didn’t discuss increasing the dose, I will see how the next few weeks go.
Thanks for the info, really hope this works well for me
No problem. FYI I went up to and stayed at 20mg, but everyone is different (the Neuro recommended 30mg but that just made me dizzier, although that is supposed to pass after a few days)
What meds did u take for it I need help