New diagnosis - vestibular migraine - help!

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Ive had migraines since I was 18. They followed the same pattern - visual disturbances, feeling like my arms weren't my own, numbness, severe headache. 48 hours later would feel better than ever. Almost as if I needed the migraine to clear something inside me.

Since Ive got older they are changing. And apparently it's because they are vestibular migraine which change as I get older and hormones change. So now I'm not sure....I am dizzy a lot. When I move my eyes. Like vertigo but instead of the world feeling like its moving the world is still and I am sinking. The world is stable but I am not. I don't get as bad headaches (which I am so thankful for) but have a dull ache in my head all of the time. Sometimes (about a day a week) it is bad - too bad to function.

I learnt to cope with "my old migraines". I knew when my eyes went I'd know the pattern, I knew I'd be out of action for 48 hours and then fine. Now, I feel not so good all of the time. I have a lot of time of work, but spend a lot of time struggling through feeling not so good but not ill enough to be off work.

I read something last week - I have never faked a headache but I have faked feeling well. Well, at the moment that is my life and its not now I want to live.

So is this dizziness and feeling not quite well these vestibular migraines? Or is it something else? Can anyone who gets them and has learnt to understand them help? What can I do to help myself?

Any experiences of people with this diagnosis would help........

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  • Posted

    Hi

    I am in the middle of a diagnosis process and vestibular migraine is one possibility. Apparently the difficulty with all these balance disorders is the time for the symptoms to arrange into some sort of a pattern that the consultants can make sense of.

    That puts most patients who present at the ENT Dept of their NHS hospital in a limbo: you go through the possibilities there, then eventually ( well over a year ) I suppose the Neurology Dept will have to start poking about.

    I am almost retired, never had a balance problem till last year, got an initial diagnosis of BPPV ( postural vertigo ) and then possibly Menieres and then out of the blue, first time ever, had a Migraine Aura. You have my every sympathy. I thought I was having a stroke.

    Anyway, you ask about practical steps. I am dizzy and have tinnutus constantly, am mildy nauseous, constantly. I have tried some of the drugs ( for menieres, and they have not made any real differnce to those feelings wink so can't be much help with the drugs for the migraine variant as I am not diagnosed...yet. I had some Physio, Vestibular retraining. To be honest, that was pretty vile, but maybe it, or possibly just time, did blank down some of the worst dizzy/unsteady symptoms, which is weird because I am sure I just read somewhere (that's another thing...where is the reliable information????) that you have to be cautious doing Physio with the migraine type of vertigo.

    I have started a restricted diet: I expect you will limit what you eat already having had migraines for years. I have found the very best tip is never ever get over tired, that's certainly a trigger. Daft to say so, but don't stress either: do that and the tinnitus rockets up ( though you say you don't have that ). I have found keeping active helps a lot too...you might not feel like it, tipping your head forwards to do certain tasks can make you feel like you want to vomit but try to push through it and it does seem to improve.

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    • Posted

      Thank you for this. I suppose as Ive had migraines for so long Ive worked out a lot if the timhings you've said e.g careful what I eat- "restricted diet" is interesting. I suppose I'd not seen it as that. More being careful and having to be conscious of it all of the time.

      It's interesting re physio treatment for vestibular issues though. As this dizziness part is new Ive not explored this side of things now.

      It's kind of reassuring to know the things Ive worked out for myself over the years are probably right (like don't get tired, especially don't combine things -like get tired and have coffee.....) but also a little depressing! Why cant I have a weekend of wine, coffee and no sleep!

      It's helpful to read your response thank you.

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  • Posted

    I am 52 years old male. I had just perfect life till Jan 2016.. No medication, always fresh healthy food. 99% time home cooked.. almost no processed food/ingredients. Exercised atleast 4 days a week.. ran few half marathons ..

    All started with BPPV end of Jan 2016 while coming out of a yoga posture.. Eply maneuver at ENT fixed the issue but triggered hosts of other stuff.. like tightness in the head, tingling forehead/head, numbness in forehead, dizzy, dull headache .. like vbk.. world doesn't spin but my head does. No typical migraine symptoms, no sensitivity to light or sound, no aura.. I have tried everything like stopping dairy, coffee, alcohol.. No result from anything.. also went through a course of acupuncture.

    Small things like running tap water, moving shadow or even a push while peeing can jolt my head. Any cardio workout like running helps me little bit..

    I had MRI on all parts from head to butt including inner ear, went to ENT, Neuro, Ortho (for spine) .. just like most users experience here.. all cleared me with perfect score

    Neuro put me on Qudexy (topiramate) .. had terrible side effect.. threw me out of balance all the time. Stopped after four weeks.. that is the only medication I had so far and no doctor could tell me the cause or name the decease

     I am looking forward to find some help on this forum.. I want my quality life back please

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    • Posted

      It's knocked me a bit sideways too. Even though I've had migraines for a long time. I wasn't as fit as you but other than migraines no problems!

      I tried to topiramate once too - not a good experience!!!

      Interesting what you say about exercise. I used to not go to the gym on days my head was bad. But recently it's been bad so often id never go. So I started even with a headache. And sometimes it wasn't the best idea but most of the time it doesn't make me feel worse and even if my body doesn't feel it, at least i feel like I must be a bit healthier for the exercise.

      In 20+ years I've never really been in groups or heard about others experiences and it's refreshing to know I'm not going crazy when small things like moving my eyes quickly can make my word distort.... Or a flicker apoears ib my vision....or i suddenly cant read text because its all moving.... It's good to know I'm not crazy (apologies if that is politically incorrect, but I do find myself wondering).

      Good luck and thank you for sharing.

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    • Posted

      Flicker in vision....YES!

      It is reassuring to share moments of recognition, just feel you are not going nuts or imagining things.

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    • Posted

      No apology for the feeling.. I too try to find comfort in someone else problem.. atleast that tells me I am not alone

      Hope someday someone will share the fix.. pain killers don't make any difference in the recent days.. I am considering to try another round of accupuncture with different place

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