Some questions please

Hi all, Just wanted to ask a few questions to people who are more clued up about this illness than me:

  1. Is MAV progressive? Do the symptoms change over time into more severve symptoms (generally speaking) - does the migrane mechinism ever change back to “normal” migraines without attacking the vestibular system

  2. How would you describe your dizziness? For me, it started with a two very brief spinning / swaying sensations then progressed into a feeling of being on a boat then balance issues, then into subjective-spinning sensations, then into sinking feelings. Although my balance since 3 months ago has improved as I was having days of regaining my balance and then losing it and it was pretty much all over the place, now my balance seems a lot more stable. Is this MAV changing, or is this compensation of the brain?

  3. I have forced myself to sit on a chair during the day instead of lying in bed all day and I try and get out walking on the days where I feel well enough to do so. However I keep myself levitated from the ground using my legs and objects dont seem to move up and down whilst doing this but if I take away my legs as support and sit in a NORMAL position, it starts happening - has my brain compensated to this strange way of sitting or am I just insane?

  4. Is caloric testing / VNG is a good idea during this illness? I was told by a neuro who diagnosed me with MAV yesterday that they would be a waste of time. But I have them tomorrow at 1.30pm.

  5. This question is entirely based on the individual but I want to ask this anyway - How long did it take you to start living a half normal life again? I miss sitting normaly or being able to sit on a sofa, or doing some DIY stuff around my flat. I miss not living at home, I am stuck at my grandmas at the moment and I really want to go home but everytime I start making preperations things get worse and its like there is no escape.

I dont know how or where to turn to make my life better. I have no friends and due to this I have lost my job which was my only social outlet. I dont feel well enough to join exercise activitys. I miss having any chance of a life, going out to visit people. Will I ever be able to just walk outside and feel normal, or go shopping, or take care of myself again? I feel like I am in such a mess and I dont know how to push forward now.

Also can anyone provide a link to the best piece of literature written about this illness which I could read? I have read How to heal your headache - great for understanding migraine is not just a headache but I was hoping for something more vestibular specific.

Hi Jimmy, you ask some good questions and ones I myself would like to know the answer to. I will try to answer as best I can on the experience I have had but am no expert as have only just realised after 3.5 yrs of constant suffering that it may be MAV and not labs/VN as I originally believed it to be.

  1. I believe that MAV can be progressive or it can go away completely, it can be managed with meds and lifestyle changes, it can change and fluctuate with time and the symptoms can vary and change day to day, hour to hour, year to year. There don’t appear to be any rules or guarantees.

  2. My dizziness started suddenly when I got up one day and felt disequilibrium, the feeling got more and more severe and triggered serious panic attacks. I felt brain fogged, exhausted, my brain felt overwhelmed. I wanted to lie down still in a quiet room all the time. Over many many months the disequilibrium lessened, however at about 5 months in I started to feel more dizzy and pulled to one side. Over several years the disequilibrium remained but gradually and in a non-linear way got less and I got used to it more. Then this summer I had proper spinning vertigo attacks, my dizziness got a lot worse and I felt just as dizzy as right at the start and I am slowly trying to recover again. It’s a tedious process and I cannot believe it happened again to me.

  3. I am not quite sure about the levitating legs thing you mention. However, I will say that I find it hard to sit on a chair, I want to lie down and rest my head all the time.

  4. Caloric testing is not perfect or 100% accurate in detecting all vestibular damage, however it is a good start and I believe you should have it to see if you have any significant vestibular damage. The extra dizziness it can produce isn’t fun but wears off quickly or should do. I think you should have it done for your own knowledge and information.

  5. It took me 2-3 years and giving up my job to feel half normal again. I completely empathise with all the things you want to do but can’t. I am totally gutted that my vestibular system got attacked again and now I am starting at the beginning again. I can only hope that this time the medication I am on (nori) will help me to recover a bit quicker than the first time when I didn’t have any medication.

I feel all the things you describe about what you lost and what you want to do. I am frustrated at the lack of medical knowledge and understanding. I am gutted it has taken me 3.5 years to find out what is probably wrong with me, although glad it wasn’t even longer. I just wish you all the best and hope you find a way to move forward with this awful condition. I know I haven’t been hugely positive but I think it helps to know you are not alone x

With regards to literature, this website is the best source of MAV info I ever found. In relation to vestibular disorders generally then ‘Finding Balance’ by Sue Hickey is interesting, although I am not sure how helpful from a medical perspective.

(NB from admin: these images link to products members have found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. Thanks for your support!)

“Finding Balance”
More recommended books here

Thanks for your response. So the outlook doesnt look promising in the slightest and it is likely this is going to get worse, excellent!

I am not sure I said that. I was just giving you my experience but everyone’s experience is different. For a start, you sound as though you have already worked out you probably have MAV so you have a major head start on me. It took me over 3 years and a major relapse to get to where you are now. I am not the most positive and optimistic person by nature but then MAV is enough to test the patience of a saint. I hope what I said hasn’t made you feel more despondent. I really just wanted to give you my honest story. If you get the correct diagnosis and find a med that suits you like many on here have, then you will get your life back x

— Begin quote from “jimmyc123”

Thanks for your response. So the outlook doesnt look promising in the slightest and it is likely this is going to get worse, excellent!

— End quote

Did you actually listen to anything I said in the other thread Jimmy? smacks head against desk

I know it can seem as though there’s no light at the end of the tunnel, but there is. It requires patience and unfortunately recovery isn’t linear. You need to learn as much as you can, get on the medication, be kind to yourself and with time, you will be able to manage your illness well.

I am 1year7months in and I’m very happy with my life. Happier than I was before actually. This thing has made me appreciate life much more and changed who I am for the better. I function at 85% on a good day and 40% on a bad. I’m pissing around with my medication at the moment and have got hormonal issues all over the shop so I know that when I have a bad day, it’s ok because there’s reasons and I have a good doctor who is working with me to fix it.

You MUST accept this is a journey with ups and downs but that you WILL get better. A wise woman who isn’t around much anymore cos she’s busy living a life in New Zealand now (Miss Muppo) told me one my first few days here that you WILL get better, it won’t be tomorrow or next week, next month or even maybe this year, but you WILL. And she was right.

Lastly, try Hain’s website out: … index.html … e/mav.html

Sorry, I appreciate your honesty - I suppose its just not what I want to hear. I’ve just kind of already had enough and I just want to have a normal life already! Just feels like my whole young life has been taken away from me as having to deal with the past 5 years has been hard enough without this adding to the mixture. Thanks for the information I will give that a read.

I’m sorry if my words seemed harsh… I just know that if you can accept the illness for what it is, it will reduce your anxiety, and will help in itself.

I know I’m making it sound easy too, when it’s not. But you can do it.

It’s NOT a life sentence. I promise you.

You didn’t say what country you’re in? Which neuro are you seeing and which person’s doing your balance testing?

I dont think your words seemed harsh atall and I appreciate what you are saying as well I guess I’m just a bit lost at the moment - kind of wish this was a straight forward thing instead of so difficult to diagnose/treat. I’m in the UK in Newcastle Upon Tyne, your from the UK too, right? This is the neuro who gave me the diagnosis.

Balance tests are conducted at the hospital I dont know who is doing that - it was just through an ENT doctor, although the neuro yesterday said not to bother going for them if it was him. So I dont know what to do, the caloric is still kind of putting me off too.

I am going to try and go anyway though. Maybe I can just do the VNG part if I didnt feel up for the calorics. :frowning:


Have you read thru the information vault here on the forum? Very good info there.

I had an attack with the rotational vertigo 11 years ago that cleared up by itself in about 10 or 11 months. No diagnosis, no meds. It happens. I still had ear symptoms; fullness and tinnitus, even migraines, but at the time no one knew they were related only thought I had a really long bout with Labyrinthitis.

This time it’s taken 4 drugs to fail before I have found a combo that is seeming to work (crossed fingers). I take two medicines now, after 10 1/2 months will attempt to go back to work part time next week. I feel I can function now at around 60%?? and keep getting better all the time.

Don’t give up! I know how blue this can make you, believe me. Read all the threads here, all the doctor interviews, so you have info when you see your neuro. Knowledge is power, and also will make you feel more in control. Also the people on this board can be a major support; I had no one that even came close to understanding me, even my first doctor!

I think you should go to the tests; IMHO ruling out everything else is a good idea. Get an MRI too.

Take care!!!


I get it–I’m actually trolling around on here today because I’m feeling a bit sorry for myself as well. I was diagnosed this year (East Coast of the US) and am thankful for a diagnosis, but having a bit of trouble accepting it completely–yes I’ve read the 10 commandments, and I’ve been doing better with them in the past 3 months than I have in the past year–small steps.

This thing smacked me in the head (symbolically) in August 2011. I remember that fall as the worst I’ve ever lived through. I was sick, off balance, completely fog brained, anxiety ridden and thought for sure I was dying. Yet every test (cardiac, MRI, blood work, Emergency room, carotid doppler etc etc etc) came back “normal.” I had vestibular testing which showed normal everything with the exception of mild right beating nystagmus with my eyes closed–and really, I should have been ecstatic. I had no brain tumor!!! WHich I had convinced myself was the only thing that could have caused all of this out of nowhere.

Suddenly my right pupil was sometimes larger than my left, I would go “stuffy” in my right ear, or I’d have weird headaches–but NONE that I would call “MIGRAINE” in terms of pain levels. I’d feel like someone pulled a rug out from under me or like I needed a tire adjustment/alignment and was pulling left all the time–but there was NOTHING SHOWING UP WRONG. And–there were days (are days) when I’m “fine” and then suddenly, out of nowhere–bam BOOM I’m sick–nauseous and exhausted, in need of a bed and hours of sleep. It takes me up to three days to recover completely from these days–but never do I get the drilling headaches–for which I am thankful by the way. But, none of this is “typical” and all of it is alarmingly frightening. Especially since it seemed to come out of nowhere, with no warning and with no prior history or injury. Suddenly I’m just “migrainous.” What’s up with that?

I read your post Jimmy–and I hear the frustration–kind of like, so this will get worse and I’m stuck with it–fan flipping tastic. I’ve felt that way off and on–but I feel it less lately (although this week’s been really hard). I thought I was well on my way with some topomax, migravent, good habits and a recent “giving in” to the diagnosis. I thought that would be a tie breaker, you know, letting go of the past, recognizing my new me, accepting my limitations and learning my new life–maybe figuring out how to get as close to “normal” as possible. I’ll get there–so will you–but the set backs are scary–and they make me wonder–and worry–which doesn’t help any of us…

I get it…

— Begin quote from “jimmyc123”

I dont think your words seemed harsh atall and I appreciate what you are saying as well I guess I’m just a bit lost at the moment - kind of wish this was a straight forward thing instead of so difficult to diagnose/treat. I’m in the UK in Newcastle Upon Tyne, your from the UK too, right? This is the neuro who gave me the diagnosis.

Balance tests are conducted at the hospital I dont know who is doing that - it was just through an ENT doctor, although the neuro yesterday said not to bother going for them if it was him. So I dont know what to do, the caloric is still kind of putting me off too.

I am going to try and go anyway though. Maybe I can just do the VNG part if I didnt feel up for the calorics. :frowning:

— End quote

Although I’ve said you need patience and time, it’s not absurd or unusual to get results on the first med you try. I tried Amitriptyline first and got well enough to work again in about 12 weeks. From there it was a case of adding a med, and now adjusting etc. So you can get a lot better quickly. I think it’s unusual not to see any benefit on the first 2 types of drugs you try.

Try to do the calorics if you can- it will make you feel dizzy but thats because your vestibular system is working. Its better to have the test than not.

Yep I’m just outside of London hence why I’m able to easily see Dr S… I asked where you are as it’d be good to be able to recommend you an actual MAV specialist.

I see Dr Goldsmith says he is a specialist in ‘movement’ disorders but perhaps thats different to balance/dizziness. I know a lot of people here get frustrated with regular neurologists who don’t seem to know too much about MAV.

Before I saw Dr S I was seeing a top neuro on Harley Street. I thought surely, he’s a doc on Harley St, he’ll be the best… He was a good neurologist of course, but he didnt seem to know much about MAV and he didnt have any ideas much past Amitriptyline but more over, his attitude didn’t seem to be that he wanted to make me better, he just didn’t seem bothered. I guess I didn’t have epilepsy or stroke, so it didn’t seem ‘exciting’ to him!? It seems that a lot of them don’t know too much about MAV in any case. I was surprised that you said Dr G didnt seem to be under the impression that MAV requires medication… Unfortunately I can’t recommend any specialists aside from Dr S or Dr Silver who is in Liverpool… (could be a trip for you?) but really, you could just arm yourself with the info found here, … es2012.pdf and if you can get your GP to be prepared to work with you and try you out on different medications then you can do just as well like that.

I had a look on the Dr Foster website for you. I searched 50miles from Newcastle and didn’t come up with any dizzy specialists, but if you search 100miles out, you get this guy in Leeds privately … 8a215e2441

You might want to do another search from scratch and click on each specialists name to see if there’s any others.

Hope you manage to have a nice evening xx


Thank you for the information - I think if I was going to go private I would want to go the best specialist available I have read about Surenthrian and would probably try and get an appointment with him (how fun the journey down there would be). I suppose a part of me wants to get these tests over and done with but I hear all the horror stories of people having the calorics and feeling terrible for days afterwards, plus it induces true spinning which is not something I would really like to experience.

Hi jimmy. I read with interest the bit in your post about sitting on your sofa. I haven’t been able to sit on my sofa for a year. Makes me feel weird and dizzy. I can only sit on a hard back chair with my feet up and knees to my chest. I can’t sit normally without feeling the world moving. Weird that you feel same. I can’t explain it either. I thought was in my head but have tried many times to cut makes me feel so ill. Very odd. Angela

Irconically the hospital called early this morning to inform me they would have to reschedule my tests as the audiologist has rang in sick today…

angdunc. I can totally relate to what you are saying, although I am happier that I can atleast sit on a chair now - I am starting to get really uncomfortable and sore sitting in this wierd position. I too have tried to go with it a few times but find myself feeling strange after a while. The wierd thing is I can sit in the doctors office or the hospitial or something (only places I have visited in the past 3 months :? ) on the chair and it doesnt feel too bad. Are you on mediciation as well? I am really hoping when I start mediciation this would be something that would go, its bad enough worrying all time let alone not being able to sit in a relaxing position.

Me too jimmy about sitting in hospital and doctors. Twelve months on and I an still stuck in kitchen on a chair. I started pizotifen a week ago. Not helped dizzy or balance yet but my daily headache gone. Will give them 6 weeks like you should and see if helps. What k disappointment about your tests. Hope they re arrange soon. Angela

Hi - i have to say i don’t think this is something that is progressive at all.
MAV, as far as i understand, is at the good end of a vestibular problem. You do not have severe vestibular damage if you have MAV and this is a good thing!
This means that you CAN recover, you just have to find the right way and method that works for YOU.

This can take time, and in that time, you can have ups and downs - as you start new meds/ hormone changes for women/ food triggers/ stress triggers in life.
But with every set back, if indeed there are any, you will learn something new about what to avoid in the future.

For example, i have just started amitriptyline, and i feel worse, but i know it is in the view of feeling better eventually. . . Sometimes we have to try different medications, sometimes we luck out the first time round.

I have only just been diagnosed with MAV, so i am in the new moments;but i can tell you that my dizziness symptoms are:

  • Began with rotaional vertigo attacks every ten minutes which lasted about 2-3 seconds.
  • One day woke up with constant rocking vertigo and imbalance/ disequilibrium
  • The rocking motion stays with me constantly but the issues of feeling like i am floating/ being pulled around/ falling when walking are up and down.
  • My vision shifts ever so slightly constantly (This is worse when i’m having a migraine (which are never headaches in my case) but generally stays the same.) - It is these symptoms of imbalance, rocking vertigo and rocking vision (like you’re in a boat cabin) that are helped by the medication.

I am currently trialing the medication and am looking forward to working out a way to reduce my symptoms. I am also about to embark on the migraine diet in the book you spoke about.

I think as FRUSTRATING and low as this is, you have to remain positive and know that MAV is not always like this. The one thing you can have faith in is that there will be less-bad moments and you have to enjoy those for what they are until you find a way to stop them completely, which DOES and CAN happen.


Some success stories come back and visit, and that is amazing for us - who are currently in the midst of it - to see. I know i will be coming back WHEN i am better to share my story and give people hope and i hope you will too. (notice how i say when i am better not IF)

You will get better.
Have faith and don’t obsess too much ( i know it’s easy) with other people’s symptoms. We are all different. We all attract different triggers and we all react to different meds. But we are going to get better and it’s going to be soon, because we are on the right track.

Hi Jimmy, as someone who had the calorics last week, i can tell you that i only felt peaky for about 30 minutes afterwards, i was then just slightly more unsteady that usual so had to get a taxi home, and i decided, of my own accord, to go to bed for the afternoon to rest as i knew my system had taken a slight shock. The tests aren’t pleasant, but they are quick, you are safe, and the people who carry them out are trained for all eventualities and very understanding.

You really need to have these tests to get to the stage of proper diagnosis so you can begin to get better. It will be fine.I promise!