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22 Comments

  1. Janice
    21 September 2005 @ 11:57 am

    Thought you might want a first-hand account of migraine-associated vertigo (MAV). I’ve suffered from it for nearly 10 years and have tried many drugs, diets, etc. to prevent it. I have a sense of dysequilibrium nearly all the time. I’m currently on Klonapin, which helps to lessen the sensation, but it does not prevent it from happening. This imbalance is life-changing, though not as debilitating as full-fledged vertigo, which is a spin-till-you-drop/vomit/etc.-type thing…thank God. Anyway, MAV is right up there with other disabling diseases. Just ask my family! They have to live with my illness nearly as much as I do and feel my frustration when yet another migraine preventative doesn’t help. If anyone out there is also suffering, I’d love to hear from you. Maybe we can exchange ideas for treatment or prevention.
    Thanks!

    Reply

    • Penny
      30 March 2012 @ 4:37 am

      I have it too Janice, I also have Basilar Type Migraine. I spent five years almost unable to function at all and vomited every day of that five years. After many trials of many drugs I’ve found Epilim to be the most effective for me. But I still live with not knowing if I will be able to see, walk, concentrate or if I’ll get an excruciating headache and lose the feeling down one side of my body at any time, however I’m finding I’m getting the vertigo less severe now and the headaches are not quite as painful. I did find out I was gluten intolerant and so address my diet – I was only 40 kgs when I was finally diagnosed! I also got a mouth splint for my TMJ from the dentist. I’m not sure which has helped – but life is better than before.

      Reply

  2. Joe
    14 August 2009 @ 2:26 pm

    Not sure if you or anyone else is still checking this posting – but I’ve started suffering from what the Drs. think are Basilar type migraines over the past 3 months. They’re rolling in every two days, with heavy aura, and very little headache. My aura is heavy numbness deep in the head, teeth, and neck. Sides of my body go numb as well, and they often hit late at night or in my sleep. I’ve seen 5 neurologist now, the last 3 say “BTM” even though I haven’t had massive headache. I’ve tried standard abortive migraine meds with litle success, and started trying various prophylactic drugs such as topamax, prednisone, inderal, and verapamil. the last 3 have worked, but put me in a state of constant vertigo/dizzyness, and leave me sitting in a chair most of the day. I’ve been away from work now 9 weeks, and I have 2 kids and a wife to support. Trying to get into the UCSF Headache clinic – still waiting.

    Any suggestions/emails most welcome! Thanks.

    Reply

    • Kevin
      11 March 2012 @ 7:14 pm

      Joe,

      I was wondering uf you are better niw? I too have vestibukar migraine and have been ver sick for one year. Woukd like to hear from you.
      Kevin

      Reply

    • Penny
      30 March 2012 @ 4:43 am

      Hi Joe,
      I have had Basilar Type Migraine for about 5-6 years. I’ve tried all the drugs you mentioned only to find myself a brainless idiot who couldn’t remember my own name. Finally Epilim worked – it controls it but I can still feel it is there! I still get very painful migraines but not the loss of feeling is not as bad – just tingling in the lips or face. I also went off gluten (my stomach was in bad shape) and I got a mouth splint for TMJ.
      I hope these suggestions may help.

      Reply

  3. Becky
    17 October 2009 @ 8:34 am

    Hi Joe,
    I too have them often occur at night or wake me up while sleeping and it is a part of it that I don’t understand. I honestly feel like I am not in control of my life. Have you had any success with anything since your post?

    Reply

  4. Joe
    20 October 2009 @ 11:15 pm

    Hey Becky – yes, I’ve now been taking norvasc (calcium channel blocker) with some success. I’m sleeping through the night, and the migraine has gone down about 70%. It’s still almost daily, but I have faith that things are getting better. Some days almost nothing, and I’m back at work thank god. Caffeine, alcohol, and heavy exercise all seem to make it worse. Good luck.

    Reply

  5. Linda
    21 October 2009 @ 10:06 am

    I recently experienced an acute migraine with vertigo during which I was not able to change position or move my head. The migraine abated after 2 days but the vertigo persisted for about 6 weeks and then suddenly ended. I saw and ENT doc who suggested that I try a home treatment for vertigo, the Brandt-Daroff exercise. This maneuver made me nauseated when the vertigo was active, but now I am able to perform it with no consequences. This exercise is reported to prevent future attacks and can be used to treat active vertigo. I have incorporated it into my daily routine. Check this site for more information http://www.tchain.com/otoneurology/disorders/bppv/bppv.html .

    Reply

  6. gaynor
    11 December 2009 @ 4:22 pm

    Ihave been diagnosed with BTM since 3 years now and every day is a struggle. i was taking epilim which puts me to sleep all the time and brufen which helps me with the pain but does nothing for the constant vertigo and nausea. I am currently on inderal which lowers my blood pressure to where i cant function and stemetil for the vertigo and nausea but which sends me to sleep.I end up take these meds at night because the side makes me unable to function in the day.ANYBODY, EVERYBODY, HELP ME IF YOU CAN!!!!!!!

    Reply

  7. Derek Anderson
    11 January 2010 @ 4:52 pm

    My headaches (temple & across eye brows) have been a problem at times for at least five years + and my last trip to the E.R. proved to
    show extreme vertigo of which I am questioning could be from the
    Epilepsy I’ve suffered from since 5years old , I’m now 58 , and still have my drivers license !
    These headaches are very painful at times before bed at night and sometimes after rising from sleep to quickly . . .

    Reply

  8. marian
    5 February 2010 @ 1:13 pm

    My son started experiencing BTM at the onset of puberty. He suffers for weeks at a time unable to get up except to stumble to the bathroom. Right now he has been out of school for 1 1/2 weeks. He’s missing a lot of high school. Last year he went through several meds including Topomax and Verapamil. Nothing worked and some have unpleasant side effects. Anyone and everyone, please keep posting what has been tried even if it has failed for you. Maybe it will work for someone else. It’s easy for anyone with this type of intense illness to slide into depression.
    Interestingly enough, no one (other than homeopathic) has told us to stop caffeine. I have taken him off that for now. Thanks everyone for input.

    Reply

    • Penny
      23 February 2012 @ 7:10 am

      Hi there, I tried Serc (when I was diagnosed with Menieres) then after the diagnosis of BTM/migraine assoc vertigo – I was prescribed Pereactin, Topamax, Veramapil and Epilim. I was on Topamax and Epilim at the same time but found I just couldn’t remember a thing! And I’m not over stating that! I’m now just taking Epilim. But I totally changed my diet to Gluten Free/Preservative Free and my dentist was very confidant that a TMJ splint might help. All-in-all after 5 years of hell – I’m feeling better. Best of luck to you. I feel so sorry to hear of anyone with this awful condition. Oh and Magnesium and Zinc have helped me too.

      Reply

  9. Linda
    7 February 2010 @ 2:32 pm

    Marian, My quality of life has greatly improved since incorporating lifestyle changes suggested in these 2 books: Heal Your Headache by David Buchholz, and Managing Your Migraine by Susan Burks. They are my bibles. For me, migraine is not a condition that can be controlled or treated with medication. Trigger avoidance is the key to a more normal life even though it is a constant challenge. Best of luck to your son, keep fighting the battles and win the war!

    Reply

  10. marian
    7 February 2010 @ 6:43 pm

    Thanks Linda. I have actually heard of Buchholz’ book. I’m beginning to think the management is the key. to be continued…..

    Reply

  11. jackie
    29 April 2010 @ 9:20 am

    i am 36 years old and a sufferer of migraine and vertigo. It comes around the beginning of the period and the vertigo continues also after the period stops, leaving me unble to function properly mentally and physically. My migraine does not always manifest itself the same,’cause sometimes it came without pain but carries also always the vertigo. Has anyone has the same symptoms?

    Reply

  12. Linda Benton
    15 May 2010 @ 1:19 pm

    Hello everyone. I am a concerned parent who has a daughter that suffers with vertigo, ataxia, sudden blindness, nausea, altered levels of consciousness and pressure behind the eyes. She has been suffering with these host of symptoms for over a year and they continue to worsen, impacting greatly her quality of life. She has seen several doctors and none have given her any relief. She has had to retrain herself in mobility, just to be able to minimally function. The current neurologist she is seeing has diagnosed her with Bickerstaff Syndrome and has prescribed exercises, Topomax and Inderal none of which have helped manage her symptoms. She is very frustrated and feels no one is taking her very seriously. She lives in Maine. I feel helpless because she is getting to the point where she doesn’t even want to go to the doctor anymore. Does anyone have any info on MD’s dealing with this issues or how I can guide my daughter before something more awful happens, Thank you in advance for any advice you might be willing to share.

    Reply

  13. Cathy
    4 September 2011 @ 5:40 pm

    I was diagnosed with Basilar Migraines in 2010 it took over a year for them to diagnose this. I would wake up with a dizzy spell and there are times when I would be standing and feel like I was going to fall over. It was very scary. There was no headache which to me was very strange. I do not take any medication for the migraines I do take blood pressure medication for my high blood pressure. My neurologist told me to take Magniusum and Vitimin B supplement. I think what is so scary is waking up with a dizzy spell. I did not have a migraine for over 10 months until this morning. After reading everyones post makes it easier to know I am not alone. My prayers are with you guys

    Reply

  14. Monika
    12 November 2011 @ 1:34 pm

    I have suffered with Migranes for almost 40 years and instead of getting better they are getting worse.And for the past couple of months I started to also have severe dizzyspells with them and some other things which I usally dont have ,so when I went to see my Doctor I was told I may had some mini strokes.I didnt know with Migranes that you could have a stroke and so I started to read up on it and what I found amazed me.I didnt realize just how much damage Migranes could cost,so I will definitly have my Doc run some more tests.And after reading everyones post is helps to know I’m not alone in this fight and the Health community realizes it that its not our imagination and these Headaches are for real. Keep on fighting and prayers fro everybody.

    Reply

  15. Penny
    23 February 2012 @ 6:59 am

    I have BTM and Migraine associated vertigo. It took about 3 years to get a diagnosis. I had been told (and subsequently treated) for Menieres disease. My life was hell – every moment of every day! I vomited and had diarrhoea all the time. My legs, hands and face were numb, my eyesight was overcome by a white fog, I had extremely loud Tinnitus and the pain in the back of my neck (and even upper back) was unbearable. I was having real problems with basic brain function such as spelling and maths. I even had trouble with maps and finding my way around, I also had a very poor memory. I couldn’t drive!!! By the time the 3rd Neurologist made his diagnosis I weighed 40 kgs and my husband was starting to think I may die!

    I’m pleased to report I’m feeling a lot better. I’ve changed my diet (no gluten, no pork, no preservatives), I use a splint for TMJ and I have found Epilim the best medication for me. I’m not completely without symptoms but I’m feeling more confident (about going out) and much happier AND I’ve gained weight – 48 kgs now. I’ve even returned to work. :))

    Reply

  16. Cindy
    29 March 2012 @ 10:44 am

    Ok, I’m new to all this, but believe what I have to be vertigo and migraines the day after. I experience a “rollercoaster” effect that literally makes me feel like I could bottom out in my chair at work, even though I am sitting completely still, then there are times I am sitting there and feel the room start to spin round and round. Lately I have noticed the next day that I have severe headaches that are in my temples and in the back lobes of my head, and I am nauseated beyond belief. I have been on Topamax for several years, but I started taking that for muscle burning/tightness in my left shoulder. I recently increased my pills, but am not getting much relief and the headaches are getting worse. I’m wondering where I go from here?

    Also, weight has been a constant problem for me my entire life and would love to get this in check, and since I’ve been on the meds, noticed I have trouble losing weight and trouble with memory. Could really use some guidance here!

    Reply

  17. samantha rolfe
    1 July 2014 @ 11:23 pm

    I was diagnosed with MV about 3 years ago by a doctor in the UK called Dr Sangaralingam Surenthiran in the UK. I had already been suffering with extreme bouts of loss of balance which I had been told was labyrinthitis. Finally I came across this doctor who gave me the correct diagnosis. I was put on a strict migraine diet and was put on Nortriptyline starting at a low dose and then increased the the maximum. I also started doing the brain exercises 3 times a day. I am not saying it was that easy to get my balance back but i started to understand the illness and recover my balance. 3 years on I now totally understand my body and know when i am having the silent migraines and when i am going to loose my balance and i know that it does not take as long to get it back. I live my life on percentages and the doctor always said that if i could get to a stage in my life that I did not think about my balance everyday then that was the best I could do. I am there now. I have just had my worse attack in 3 years caused by a 3 day migraine and work stress. I was very worried that my balance was so bad again so I did some brain exercises and tried to chill out and within 5 days i was back to 90% balance. A few months ago i thought I would wean myself off the drugs that i take every night but I felt worse. I had a 5 day migraine with pain and only slept for 2 hours a night for 6 weeks which then of course sent my balance off. So my GP said get back on the pills as quality of life is what it is all about.

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  18. sasha
    20 August 2016 @ 2:18 pm

    I have had btm for almost 10 years the first 4-5 were spent on a myriad of drugs and drug combinations. No driving, work was hell. The good news is there are literally hundreds of meds to try. I finally found relief with two blood pressure drugs that keep my symptoms at bay. Very strange as I have always had low blood pressure anyway, but after topamax, depakote, etc. etc. I am glad to have very innocuous drugs with great results. go to the doctor and keep going – they can find the right magic for you too.

    Reply

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