Sunday, September 12, 2010

Living with Vertigo

Remember when you were little, did you ever play that game where you spin and spin and spin in one direction and then STOP! The whole world seemed to whirl and swirl around and your head with it! You couldn't walk at all and you would fall about laughing like a giddy fool with no direction and no bearings. How fun that game was. But the sensation only lasted a few minutes, before normality and balance returned – but just imagine feeling like that all the time. Imagine, if like me, that had been your reality day after day for an entire year!

How it all started…..

I suffer from a condition called Migraine Variant Vertigo – bit of a mouthful, so we'll call it MVV. I believe MVV is a fairly uncommon form of the illness and certainly one I had never heard of before. It started last July after what had been a pretty typical day at the office, you know the sort I mean phones ringing non-stop, clients calling to rearrange meetings you'd moved heaven and earth to arrange in the first place, a to do list that was growing by the second and the half eaten remains of something which should have been filed in the nearest trash receptacle in the first place! Around early evening I began noticing that strangely I was seeing smoke. Though there was no smoke around me, through my eyes it appeared as though every room was filled with a hazy cloud. Naturally I assumed this was due to tiredness and decided to have an early night and THAT'S when it all started!

Having not been a migraine sufferer before, the head ache I developed that night was so severe that I actually thought I was going to die. Anyone who has ever had a migraine will know exactly what I'm talking about. The muscles in my neck, around my scalp and face were getting tighter and tighter which made my head feel like pressure was building up inside ready for an explosion! I wasn't able to open my eyes, couldn't speak, and couldn't move. No-one could help me, no-one could comfort me.

I'm not sure how I managed to sleep that night, because none of my normal pain relief tablets had worked, but by morning, thank God, the head ache had gone. However, I did notice that I was feeling slightly dizzy, but returned to work regardless. No sooner than I had got back into the bright office lights , computers screens, people talking and lots of movement all around me, the "slight dizziness" immediately escalated into a major earth quake and I was back in the playground age 6 spinning and spinning and spinning totally disorientated , confused and knowing something was very wrong indeed.

Time to Call the Doctors……..

I went to see my GP straight away. I'd had a couple bouts of vertigo before over the last 10 years but those had been caused by ear infections. On full examination my ears were fine, blood pressure was fine, there was no fever and nothing to indicate any other cause for my symptoms. Yet I still felt dizzy and as the hours went on so the dizziness was increasing. My GP prescribed Stemetil a drug I'd taken before. After a few days of taking Stemetil and feeling even worse, my GP referred me to an Ear Nose and Throat specialist. Luckily the ENT specialist that I was assigned to happened to be one of if not "the" MVV specialist in the whole of the South East, a Consultant Neuro-otologist called Dr Surenthiran. By the time I saw Dr Surenthiran , which was 4 days after I'd had the migraine, I had gone from feeling like I was a little tipsy to feeling like I was in a tiny boat sailing on a very very rough sea. By that stage I was in a pretty bad way . I wasn't able to drive at all , I wasn't even able to walk unaided. I couldn't stand without holding onto something or someone otherwise I would sway violently. I couldn't sit without my head being supported otherwise it would literally bob up and down uncontrollably.  My eyes would catch every single movement around me. I couldn't bear bright light or loud sound, even lying in bed I felt as though I was moving. I was exhausted from all the movement in me and around me and yet all I was able to do was SIT! And this is how it was from morning till night, day after day after day!

Dr Surenthiran immediately diagnosed me with MVV. He explained that what had happened, in very simple terms, was that the migraine had caused damage to the nerves between the balance system in the ears and the brain. My brain was now no longer trusting the messages it was getting from my eyes, ears and muscles regarding the position of my body resulting in total confusion and zero balance. After an MRI scan and a whole series of Vestibular Function Tests he was able to assess how severe the problem was and decide on the best plan of action.

The Treatment …….

Dr Surenthiran was great – the first thing he told me was "this is probably going to get much worse before it gets better!" Don't you just love doctors? But he wasn't trying to scare me, he'd seen hundreds of patients like me before some much worse, what he was doing was PREPARING me.

Straight away he:

• Took me off Stemetil

• Put me on a special diet that cut out things like caffeine, dairy products, citrus fruits, chocolate and red wine (this was going to be tough!)

• Started me on daily Vestibular Rehabilitation exercises three times a day.

• Prescribed a drug called Nortriptyline.

Dr Surenthiran also told me that I had to eat regular meals and get PLENTY of rest. He explained this condition was not easy to treat and that I was going to have to be patient, but in the early days I didn't quite realise what being patient really meant and quite what he was asking of me when he told me to take it easy!

Six months have gone by and I'm still off sick!....

Picture The Scene – Christmas had been and gone. I'd been off chocolate and red wine for a long time and was not a happy girl! I'd been taking Nortriptyline for months and was up to maximum strength plus taking another medication on top. I still wasn't driving, I'd been house bound for what seemed a life time. I'd feel better for a week and then have an attack which would wipe me out for three . This would result in a dose increase in my medication which meant I'd get another week or so of feeling OK and then WHAM another attack! It was like being on a terrible "illness roller coaster" I was really feeling desperate by this point and having promised my boss I'd be back at work in the New Year, I felt like I was letting everyone down by just not getting better. I was seeing Dr Surenthiran every 6 weeks and thinking "this is NEVER going to end!" Then during one of those appointments I finally had a breakthrough.  My consultant told me that I had to stop putting unreasonable demands on myself that I had to JUST LET GO!  He said that I had to accept I was no longer able to run around cramming a million and one things into my day as I used to before and that, for now, I was just going to have to focus on GETTING BETTER and not on GETTING BACK TO ANYTHING! That suddenly made so much sense. Having always had zero patience, my body was now making me stop and teaching me patience. The lesson I was learning was that the harder I was kicking myself to get better fast, the more I was actually prolonging my recovery because I was not giving myself time to heal.

Finally Getting Real…….

It's now been just over a year since this started. Thankfully the acute attacks that used to last 2-3 weeks are under control with my current medication, which is combination of Nortriptyline and another drug called Topiramate. The vertigo has not gone away but has now become rather like an old friend that I've gotten used to. The medication is very strong and very sedating and because the dose of both drugs is so high, the side effects do have their own problems but you do get used to that too. I feel very tired all the time and sleep like a log but that's not a bad thing. The dizziness is still there, but it feels like I'm sailing on calmer waters now. I still need a lot of help from my family and friends who deserve medals for keeping me sane through all this.  However, even though I try to stay calm and try to be as realistic and kind to myself as possible, I still find it difficult to answer people when they ask me "how come you still haven't got better!" Dr Surenthiran warned me about this too. He told me that vertigo is a very disabling illness, more disabling even than having one leg! But it's an illness that's not well understood and no one realises what you are going through because on the face of it you look perfectly healthy and normal! Though this has been a very difficult year for me in so many ways, I am still thankful for what it has taught me and that is that I'M STILL STANDING (it may not be straight - but I'm still standing!)

I'd love to hear from anyone who is suffering from Vertigo and needs someone to talk to.  I know only too well how crippling and isolating this illness can be, so if there is anything I can do to encourage and give hope that there are good days and light at the end of the tunnel, then I am here and happy to help.

For further information on Vertigo:

Radio 4 programme by Dr Mark Porter Aug 25th 2010 - Balance Disorders

Lucy Atkins Guardian 2008 - Spinning out of control


  1. YES YOU ARE STILL STANDING!! Its been a hard year for you but you are getting better - just hang on in there.

  2. Hi I have migrainous vertigo and it has come in waves over five years coming for a few months just at night (where I couldn't turn on to my left side otherwise I would fall over as I was so dizzy), and other months, I couldn't walk down the corridor without bumping into things. I get either head-splitting migraines or the vertigo though which is said to be unusual. Anyway, now I have had a baby, and work part time, I try and take things far far easier and I don't get the big episodes that I used to. So stay in there and things will change. It takes a long time but you will get there and find it easier to identify when the warning signals come. Good luck.

  3. wow..your experience sounds a lot like mine! been having the dizzy/vertigo/boat rocking feeling for 2 years now. I used to be very active and always doing a million things at once..always had great energy and then bam my whole life pretty much felt like it stopped 2 years ago. It took me about a year and a half to be diagnosed with vestibular migraines..which unfortunetly i have been told is a very difficult condition to treat. I pretty much tried everything to help this condition and as soon as i start feeling better..i start feeling worse soon after UGHH!! im 21 and currently not in school or working..meanwhile ive always been a full time student and had a job since i was 16! I was on a medication for it..a blood pressure medication but that just made me feel worse. I see a neurologist in NY.. hes suppose to be one of the best neurologists that deal with these type of migraines. I am now not on any medication but am starting to take a few vitamins which he recommended to help alot with this condition. started 2 weeks ago .. hopefully i will see some changes soon!!

    hang in there everyone!! good luck!

  4. Thank You so very much for your comments and to my fellow sufferers I can only pass back to you your kind words of encouragement and say "hang on in there" there are good days and bad and I guess only we know what we mean by that dont we ! But Im so touched by your response and please keep intouch if you need to talk . Sur xxx

  5. I hope you're doing better :) I'm just getting into the bad part... been having a few sporadic attacks for several years but now they are almost daily. Right now I'm doing the whole doctor runaround thing and it is stressful (which of course doesn't help). Now I get to go to my boss tomorrow and discuss it with him since it is beginning to significantly affect my ability to do my job (I am a public school teacher). I'm afraid and tired of the 'just get a grip on yourself and you'll be fine' that so many of my family and friend's toss out there so easily that I break into tears just thinking about it (again, doesn't help - actually makes it worse). I know where you're coming from and hope you're off the rollercoaster now :)

  6. Dear Anonymous
    Thank you for reading and your comment . Good luck with the talks with your boss - I have to keep having those too. All you can do is be honest about your condition. The worst thing is understanding. The people "out there" dont quite understand what we experience on a daily basis - if they did, perhaps they wouldn't be so quick to tell us to get a grip! I think because on the face of it we look well enough , people cant appreciate the full effect of this illness - not only do we have to deal with the terrible effects of the vertigo but also the feelings of stress and anxiety that go with it . I am now also becoming agoraphobic because I know how bad Im going to feel when I go outside and see all the movement around me.
    Just hang on in there . Good luck with everything and just find time in the day to relax your mind - im actually finding meditation is really helping me to calm dowm when im having bad days. Best wishes to you and hope all goes well.
    Kind Regards Sur.

  7. I have had this for 33 years (since i was born) and I am finally seeing Dr S privately in Feb. I really hope he can change my life! Good story. I was told I had panic attacks, depression, all sorts (probably did I was so scared of the dizziness). I really pray I will finally have a normal life before long.

    Thanks for the positive post - I found it when I googled.

  8. Dear Anonymous
    Gosh 33 years of suffering - I cany even begin to imagine what you have been through. But rest assured Dr Surenthiran really IS the best and he will make you better. I don't need to tell you how it's a long process - time is something that has to be just left out of the equation unfortunately with this condition, Ive been told another year before I can drive properly and have some sort of "normal" working life . But I suppose being normal can mean a lot of things and being positive and happy are very important aspects of leading a normal life. So keep smiling , I wish you the best of luck in February and the only other thing that you could try which has helped me a great deal with my condition is meditation . I have found it incredibly healing and calming. Hope that helps.

  9. Thank you and thank you for such a thoughtful reply.

    Sorry, I should have said I am Sarah. Really enjoyed reading your posts.

  10. Thank you Sarah
    Do keep in touch and let me know how you get with your treatment . Wishing you a very healthy and happy February . Lots of love Sur x

  11. I found your blog today while trying to find out how to live with the vertigo diagnosis i was just given. so far its only been less than a week and I still have to see more specialists to find out what is causing it. It been a week since I had my first major attack, of course I have felt dizzy before with my inner ear problems I have had my whole life, but never to this extent. to be honest it is driving me to horrible thoughts about well ending it all because it is causing me work problems and now money problems with not being able to work. the medications make me so tired that I can't function. I can't imagine dealing with this everyday. Thanks for sharing your experience and i hope we can both get better soon because this is like being on a ride and no one is listening as I am screaming to get off.

  12. Dear friend
    I can hear your frustration in your voice and having had quite a bad day today myself I know exactly what you feel. Please ,please dont feel like you are alone EVER and more importantly PLEASE don't EVER let this illness let it push you so far that makes you think terrible thoughts of ending it all. Nothing is worth that! Ive been there and had those too , so I know where you are coming from - its hard when you see no light at the end of the tunnel and you feel of no use anymore. But , this is happening to you and to me for a reason and in knowing that we must STOP, take a breath and just LET IT BE . For now you must just accept that you are unwell . No you can't earn the money you normally earn, no you can't do all the things you normally can do but you are still you and you are still here with your family and friends and THAT is the most important thing in the world. The rest will sort itself out when your body is ready to do that.
    My consultant reminds me each and every time I see him that Stress has done this to me because I allowed it to. Perhaps you did the same thing. So my advice is just take time to be kind to yourself, stop beating yourself up even more and just BE. All will be well . Please feel free to write to me whenever you feel like pulling your hair out! We can scream together !! In the meantime , try to just take it easy and rest as much as possible and like I said to another of the friends who wrote to me from this blog , meditation has really helped to calm me and has helped my symptoms too so maybe that is worth a try. Kindest regards and lots of love Sur xx

  13. I have had awful disequilibrium problems for two and a half years, especially if the pavement slopes up to the right. I saw Mr Surenthiran who said that I probably had otolith dysfunction and MAV on top, although I don't get headaches. I did a year of vestibular rehab to no avail and propanolol to prevent supposed migraines just made me faint. I haven't seen Mr Surenthiran for nearly two years, as he cancelled all my appointments last year and I'm just totally stuck with this awful mysterious condition.

  14. Dear Anonymous
    That doesnt sound good. It certainly doesnt help being on your on your own with something like this without a doctor being there in some way monitoring your condition. Were you not referred on to another consultant or doctor? I would get back in touch with Mr Surenthiran - especially considering the fact that you have been suffering for over two years now.
    Unfortunately , even though my condition is "under control" if I walk on something uneven or slightly wobbly that usually sets an attack off for me - it may not last long but its enough to really unsettle me and perhaps make me topple over. It really is a horrid thing to suffer from - but the medication Im on now is atleast working most of the time thankfully . So I would really advise going back to Mr Surethiran . I wish you the best of luck and hope you feel better very soon . Hang on in there.

  15. hi can i say reading your experience with vertigo has made me feel a little more comfortable with the diagnoses i had today. im a mother of 4 grown teenagers one of which is severely disabled and completely dependant on me and her dad. ten yr ago i ended up with tinitus in one ear (i hear mu pulse constantly)4 years ago my neck went and at the beginning of last yr my back went due to wear and tear lifting my daughter, im waiting for surgery 2 yr now and ive had the odd migraine through the years seeing little triangles in my vision before each one and partial blindness where everythings cut in half but i get on and ignore it best i can..but the past 6 months ive had the odd moment things moved around me when im sat still.. i put it aside untill last night i felt like i was on a boat for about 15 minutes then today one second im sitting in conversation and the next im gripping the chair sliding back into it because the world just spun like a compass on a roundabout and i feel like the lights are about to go out, scared for my life.. off i go to a+e to be told its vertigo???? but its a height thing isnt it? something ive been told ive had for years because standing on steps or the edge of train platforms etc. makes me dizzy and want to crawl on the floor ??? no ive had it for years and its been getting worse hence the feeling sick for the past few month when i get up(i even took a pregnancy test :/), the tripping over kerbs having to plage my finger on a wall or rail if using a staircase, or linking peoples arms when out doors because wide spaces freaked me out slightly but i never told anyone, id sway or stumble, miss doorways entering them and just try to hide it. i guess i looked drunk sometimes. anyway today i was given medication to tide me over the weekend untill i can see another gp or ent. i can not see myself leaving the sofa right now. my husband has forgotten already and gone 2 flights of stairs to bed, im too scared to attemp that so ill sleep here. but as i always say to kick myself up the bottom 'there is always someone worse off than yourself' you sound in a worse place than me and look at you, telling your story and offering to help others. your a very strong person and thankyou for telling your story xxxx much love

  16. Dear Jojo
    First of all I am so sorry for the delay in sending you a reply . I hope that by now you have started feeling much better. I am so sorry that you have been going through all these terrible problems with your health, with the added pressures of your children . I do hope you have lots of support from family and friends - having vertigo you really need to ask for help if youre not doing that right now. Its vital to remember that you need to rest in order to get better and you will feel VERY VERY tired all the time !!! Just keep going , keep seeing your doctors till they get the medication right and things really DO get better.
    2 years on Im still having my medication increased but im feeling much better on the whole. Im no longer on a boat all the time , though I too still bang into door ways and look a bit drunk sometimes the way I walk !!
    Take it easy if you can , keep smiling , sending you lots of love . Sur xx

  17. Just want to make sure that anyone posting here is aware of the condition Superior Semicircular Canal Dehiscence Syndrome. It affects your balance in ways that many of you are describing. To find out more look at the website

    1. Thank you for this information . That's really useful to know.

  18. hi i was just wondering if you can tell me what medication worked for you . are you still on the nortriptyline and the topiramate.i tried the topiramate but that made my vertigo so much worse started giving me attacks as soon as i woke up and lots more attacks throughout the week so i came off it . can you advise me exactly what you cut out or your diet
    i have been on a rest from medication but going to my doctors today to suggest a drug to try called klonopin that iv done some reading about
    i know it can be frustrating trying to find the right medication because there is so many . the big problem on top of this illness is trying to find the right one for you and going through the stress of trying medication that does not work , cos iv had a few so far
    king regards xx

    1. Dear Louise
      First of all I am so sorry it has taken me so long to reply to you . I hope that you are feeling ok and that your treatment is going well.
      I am still taking a mixture of Topiramate and Nortriptyline but I am now on a very high dose of the topiramate. It is working for me but I know exactly how you feel about having to try lots of different things. Ive been there! And through all the side effcect too!! Though this drug works for me I do keep having minor attacks and therefore my dose keeps having to be increased . So athough im "almost" stable in that I no longer sway all the time and I can drive now and can go out alone etc I do feel very much like Im held togther by band aids :)
      But its not that bad really, I guess being like this sure does beat feeling sick and dizzy all the time any day .
      I would say to you just keep going , keep trying different medications but as soon as you feel something is not working STOP .
      But my best advice to you my friend is just take time out of the equation , this is a long old process and you HAVE to be kind to yourself and give yourself timem to heal.Just be patient .
      YOU WILL GET THERE - I HAVE . Keep smiling . Sending you love.
      Sur xx

  19. Makes me feel better to know there are others that are experiencing the same thing. Many people don't understand and say things like "take some ibprofen you'll feel better" or "sleep it off" or the best one yet is "how's your headaches" It is very frustrating, because this is a very difficult thing to deal with. I suffer from a migraine variant with blurry vision, photophobia, dizziness, periods of vertigo, nausea, motion sickness, neck-head-facial pain, ringing in ears. I don't always have the actual headache but always experience the neurological symptoms and seems to last for such long periods of time, make it very difficult to drive and work. Thank you so much for sharing you story! I have started take nortypiline and praying that it works.
    Take Care~

    1. Dear Anonymous
      Thank you for sharing your experience. Please accept my apology for not sending a reply sooner. Yes it does get a bit frustrating when people don't quite appreciate how debilitating this condition is but then how could they? I guess we just have to understand that we need to just become calmer within ourselves in order to heal ourselves because THAT'S all that really matters. Hope you feel better on the Nortriptyline . Lots of love .Sur

  20. hi
    yes its a very difficult thing to deal with
    and finding the right help is hard
    sometimes feels its to much to cope with
    i tried the klonopin and made me worse , so just coming off them now .
    i hope the nortypiline work for you , fingers crossed . let me know how you get along
    take care x

  21. Hi

    I had a a few days of what I would say is vertigo a couple of years ago, where I would just be standing or just sitting and feel like I was going to fall over. I would be talking to someone and have to hold on to something and thought I was going to fall over, it was so frightening. The doctor put it down to stress of my job and gave me diazepam for anxiety attacks which made me feel worse and more dizzy to be honest so I did not take anymore. I went on holiday and it seemed to go away for a couple of years but it has now returned the last 2 weeks and I am having the same thing happending again around 10 times a day or more, where I would be in a meeting at work and and then have to hold on to the table and almost feel like I am going to faint. I went to my doctor and he said the same, stress but I have dropped my hours at work and do not feel stressed although these attacks are probably making me as I am constantly worrying about going anywhere on my own in case I fall over. How do I go about trying to get tests done to get a proper diagnosis, it is driving me mad and really scaring me, espcially when I have 2 small children I have to drive around. Any advice would be greatly appreciated.

    1. Dear Friend
      Im so sorry I didnt see this message sooner . I do hope that you have seen your Doctor . My illness was most likely due to stress and my Dr told me that most of his patients are all the same type of people - very hard working , busy people who never stop and push themselves into the ground so hard that their bodies make them stop! It would seem that stress is probably the cause of your problems here also , especially as your symptoms seem to get better when you have a holiday or ease up on your work load. We don't always have to "feel" stresses to be suffering from it - it can just be the pressures of every day life and us just not giving ourselves a "balanced life" that be the problem .
      The tests that I had done were Vestibular tests which my ENT doctor did . If you are feeling dizzy at all you do need to get yourself checked out . Good luck . Please let me know how you got on.
      Lots of love. Sur

  22. Sur, do you have a Facebook
    Page I can join please? I've also seen Dr S a year ago now yet still getting the vertigo really bad. My GP has now prescribed amitriptiline ( sorry for bad spelling) but have just found out I can't take stemitil with them and I need that for when attacks are severe
    Anyway I am so pleased I found you as I feel so alone xx

    1. Dear Anonymous
      Yes I am on FB under Surjit Ghag and yes feel free to add me as a friend . I hope you are feeling better - you are not alone. Do let me know how you are getting on .
      Kind regards
      Sur .

  23. Hello Suri
    Thank you do much for your response. I've sent you a friend request in the name Nikki Taylor really look forward to chatting with you some more and I hope that you are now coping better with the vertigo xxx

  24. Hello all, this is so heartwarming to read, mainly because I am struggling to get my nearest and dearest to understand. I too have seen Dr S, with pleasing results.

    Having read this page and had a recommendation from a friend who had seen him for migraine troubles, I was encouraged to see him and asked my GP to refer me.

    I have a long history of trouble with my ears, loss of hearing, pain, replacement ear drum, drilling of my sinuses (spelling?) and cutting out my septum in my nose to enhance breathing ability and lessen pressure in the ear? Anyhow in the last year after relentless building works at home and a change in my daily routine - suddenly doing six school runs a day instead of two, I found I was unable to draw any more, (I am an artist) and I also couldn't read my piano music without feeling strange.

    My symptoms were dizziness, I had had that on and off for 4- 6 years, tinnitus (I've had that as long as I remember) but now I was having flashing lights, sensation of moving when I was still, I had to keep checking the car handbrake was on, so strong was the sensation of moving and finally on a physiotherapists bed I felt I was on a roundabout. I was very teary and exhausted beyond measure. It is difficult to describe this to someone who hasn't had it.

    What had me most worried was pins and needles or numbness on one side of my face, around my lips and down both arms to my fingers. I had visited a stroke clinic to check for that and come away clear. Dr S was understanding and has put me on nortripyline which I am upping every two weeks until symptoms have alleviated. I am coping with the dizziness better but not with the numbness of brain. I can now play the piano for 5 mins without feeling too ill. I cannot dare paint yet - too much co-ordination is required for that. I suppose I am writing this with some hope my lifestyle will improve sometime soon. I have withdrawn from mainstream life, I only do what I have to, I am not able to be a parent properly to my teenage boys, I can't play cricket or football with them. I struggle to take my daughter to the shops. I a struggling with hot weather, and being away from the safe environs of my home. I can drive, but only if I rest a lot in the day.

    The thing is I'm desperate to live life again, I have now opted out over the last 4 years with only a handful of people knowing a little of what it is like. I struggle to be optimistic and have nothing new to offer people, Im not much fun as I can't do fun things.... please let me know this will get better. Im only 44 and I have a lot more to do...?

    My diagnosis is much like yours Sur with Paresis of the vestibular canal of 50% on one side, caused by migraine, or a stop in the blood supply to the brain, or a virus. So I now have rehabilitation exercises to do, mainly visual and some balance, I can't stand still without falling over. I am desperately bored, a bit miserable but not so depressed now I know what I have, not sure how much the medication is helping, if anything. I suppose I would only know if I came off and that is a risk I don't want to take. Also is there anything I can take other than ibuprofen to kill the headaches when they do come? Nothing reaches it so far. Best wishes to all you sufferers and huge thanks for sharing this invisible illness, reassuring me that I am not going mad or making myself ill. xx Anonymous2

    1. Dear friend and fellow sufferer , Im so sorry it has taken me so long to reply to you. Your story has made me feel so sad - especially because having had a reasonably good 18 months or so now where I have felt like ive finally got some 'normality' back in life WHAM! I had another severe attack a couple of weeks ago and was back to square one again. I couldn't walk , was swaying again and in constant movement . I had totally forgotten how bad this condition can be . But thankfully its all settled again. The good news dear friend is that it DOES SETTLE. After 4 years I am now back at work and even though its all on very reduced hours and I don't drive there myself , and Im on very high doses of medication - the point is Im getting my life back !!!
      The other brilliant thing is Im training for my very first marathon which Im running next month . So its all good. I have not been able to do any type of working out with this condition up till now but running means travelling in one direction only so that's been ok :) So the positive message to you is just hang on in there , there IS light at the end of the tunnel . Give yourself all the time you need to rest and above all - Be kind to yourself even on the hardest days . I know how low we can on those hard days but try to just breathe through it and give meditation a try. Keep well and keep going - all will be well .

  25. Hello all, Anonymous2 again, just an quick afterthought, the biggest thing I have working against me is my pride - (a bit like your letting go Sur). I don't want to look miserable or let on how tough it is, and sadly most of my friends have let me down with comments like "we're all tired" and "I wish I had an excuse to opt out like you", its a lonely old world, but Im not helping myself either by not asking for help.. I bet there are a few others out there feeling this too...

  26. Hi sur I woul like to add u as a friend on Facebook as I also been suffering from vertigo I had it for over 2 months now & finding hard to deal with. I am a fairly private person that's why I hope I can talk to u on Facebook as I prefer that than to talk about myself on a forum like this. Hope u doin ok. thanks kind regards kris

    1. Hi Kris ,
      Yes certainly you can speak to me on facebook .

  27. Hi Sur, I've been dealt the dizziness card in life as well. Unfortunately for me I've had it coming up 4years now. I was lucky enough to find out about Dr.S and have recently had an appointment with him. After seeing many other specialists, I'm hoping he's the one that "fixes" me. He said that I have MVV (same as you) cause by stress and damage done to the brain. My question is, and a selfish one albeit, are you feeling any better now? Has he helped? Almost 2years on from the day you wrote this post, are you feeling better? I've lost almost all hope concerning my condition and need someone to tell me it will get better... Wishing you wellness - Trish

    1. Can I add a word of hope? I suffered occasional attacks for years, but about ten years ago it got worse and worse. I had the usual tests and was diagnosed with migrainous vertigo and given exercises and diet, which helped a little (I found the drugs were all worse than the symptoms). Often I couldn't even stand upright and I was walking with sticks. Nobody paid any attention when I said that vertigo might be associated with high oestrogen levels (it often is in seasickness). Finally, the menopause struck! I was much better 2 months later, and now only notice it when drinking alcohol or travelling long distances (or very tired). I don't know how you would reduce oestrogen to give relief, but surely it would be worth the medical establishment considering it?

    2. I am really interested in your comments - I agree that the appears to be some hormonal link. Post a message if you are still on this site.

    3. Hi Trish
      So sorry this reply is a year late , please forgive me. The good news I suppose is that during this year much has happened that I can tell you about - the biggest thing being that I do feel much better and have now returned to work !!
      Dr S is a great consultant and he has helped me a great deal. Im still on very high doses of medication and despite an attempt to reduce one of my medicines in April which did not work ( I had to increase it again within a month) I do feel positive that my condition is stable and that's good enough if it means I can have some sort of life again.
      It all boils down to reaching a happy medium I think - I know there are some things I cant do anymore or atleast till Im off this amount of medication - but if it means I can do most things and be attack free then Im OK with that .
      So in answer to your question - will it get better - YES it most certainly WILL . Just keep strong within yourself , keep resting up and keep a strong mental attitude . Your state of mind is very important in this process so be at peace if you can. Wishing you well too my friend .

  28. Hi Sur

    Please could you tell me what doses if nortriptyline and topamax you are on for how long?


  29. Hi Sur,

    Are you still writing this blog?

  30. Hi, I have been in a similar situation for five years. I also saw Mr S who said I had MVV and otolith dysfunction. I also saw the famous Adolfo Bronstein in London who said I had something wrong with my ears! I was feeling better last year but now it has returned with a vengeance. I don't know if it's stress - I have noticed that I jump out of my skin if someone even coughs and the slightest stressful thought gets everything spinning. It's easier to walk when the pavement slopes down to the right as opposed to sloping down to the left. I really can't tell if this awful condition is psychogenic or organic - it's impossible to tell. There's no end!

    1. Dear Geraldine
      Thank you for your comments and for reading the post . Im sorry to hear that you have been suffering for so long with this awful condition. I hope that you are feeling better - thankfully 4 years on for me I am feeling much better but I have just had a very bad relapse and was back to square one for 2 weeks simply because I was exposed to the sound of a panic alarm going off at my office. You never know what will trigger a sever attack - a sound , bright lights , a movement , being too tired or too stressed it can be anything - the important thing for us to remember is that we have to BE CAREFUL ALL THE TIME ! Our senses are ultra sensitive and we just have to be aware of that now. All I can say to you is just take care of yourself , I wish you well and you will get better .


    Anyone (doctor or "friend" who says otherwise is an idiot. My mother was diagnosed with Meniere's disease and my Neurologist says she probably had what I have - vestibular migraine. Since she died young - of unrelated causes, I can't predict the future evolution of this horrible disease.

    Stress is not the cause, but it's stressful to always feel dizzy and dumb - as if drunk or stone.

    I tried Topamax for years: it made me suicidal. Seriously: it's a depressor! I have been on every possible mediation to prevent migraine - with no result. I am a college teacher who does not teach anymore. It's no easy to maintain my self-esteem without work, without going out of my apartment. Fortunately, I usually feel better at night, so I try to walk, even if it is late. Or, I'll try to exercise a bit at home.

    Starting to play the piano has saved me. It gives me something to do when I am not too bad - a few minutes at a time - so in the end, I have something to feel good about, something that I practice, I learn, and try to master. When I end up playing a piece, after so much effort, it is a wonderful joy.

    The big goal is to maintain some kind of sanity - not to go bezerk cooped up inside, away from people, and real life.

    Good luck to us all!