newly diagnosed with vesicular vertigo silent migraine

Posted , 4 users are following.

Hi new to this page and looking for advice and guidance

16 months ago I suffered out of the blue a vertigo drop left me in a real state, from this I have suffered from weekly attacks of dizziness vertigo being incredibly off balanced and tinnitus, this has cost me my job as I drove for a living thrown me into the minefield of the benefits which I hate but I'm thankful they are there for this situation.

After numerous doctors and tests an ent consultant has diagnosed vesicular vertigo silent migraine I never get headaches so incredibly shocked to hear migraine

I have been placed on amitriptyline tablets they improve very slightly my day to day balance problems but I'm still suffering from attacks which are spontaneous in nature but start with severe nausea wrenching unbelievable dizziness and vertigo and severe off balancing

Does anyone have any similar condition what helps you have you managed to get back to work

As this condition has made me almost a prisoner?r in my home as I can't walk more than 15 mins without looking as if I'm drunk I also find it impossible to go into shops as the bright lights set my symptoms immediately off

Any advice truly appreciated

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7 Replies

  • Posted

    Have you looked into Menieres? It's the first thing I thought when you mentioned your symptoms. Des usually suggest a very strict low sodium diet. They can also do other treatments is that's the case. Some will prescribe diuretics if necessary. Just a thought. Drink lots of water regardless. Hope that's helpful.
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  • Posted

    Menieres was my first thought as well.  What is your age and is there anything that you do that sets the vertigo off?  Certain head movements, bending over, etc.  Or do they just happen out of the blue?
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    • Posted

      Hi I am 40 years of age most days I fill drunk when walking for more than 10 minutes, plus when I move my head eg putting cups away in cupboard moving back and fourth. BBPV has been dismissed and doctors are not looking at meniere's because three hearing tests have come back normal.
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    • Posted

      What I have read about Menieres is that hearing impacts can come and go.  Are you in the US or UK?  I would recommend seeing a Neurotologist since they specialize in inner ear issues just to rule any issues with that out.  They are also referred to as an Otologist, not to be confused with a Neurologist. 

      16 months is a long time to suffer with symptoms that severe. 

      Best set of luck on finding a solution.

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  • Posted

    Hi,

    I spent a long time getting my diagnosis of migraine with vertigo,so it is entirely possible that you have it. Mine is 24/7, or at least the effects are, as they tend to overlap.

    Please look at my other posts, they may help you, and I don't have to rewrite the info all over again.

    All the very best, hope it helps you.

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  • Posted

    Hi, Peanut. I am sorry to hear you have vestibular migraines! I also have silent migraines with vertigo as one of my symptoms.

    Light is my trigger and it sounds like it may also be your trigger. Sunlight and fluorescents are the worst for me. I wear special migraine glasses with the FL-41 tint indoors (and outside at night) and special dark migraine sunglasses outside/in the car during daylight hours. I don't know if links are allowed here (I just signed up to reply to you after your message showed up in search results), so you'll have to Google to find them.

    As for preventive medication, the one that worked best for me was topiramate (generic Topamax), which took me from chronic (15 or more migraine days per month) to episodic during the time I was on the med and lessened the severity of my symptoms even after I had been off it for a long time. (It turns out that I am allergic to one of the ingredients, so I had to stop taking it. Taking it worsened my allergic reactions.)

    I am setting this to receive notifications of replies, so feel free to reply, otherwise there is a great chronic migraine group on Facebook that is closed (private) so only members see the posts and I can be found on there. There are a few others who only get silent migraines, plus those who sometimes get them, as well. And others who have vestibular migraine, too.

    In case you haven't already learned, migraine is a neurological disease that has episodes called migraines. Migraines have four phases - prodrome, aura, headache, and postdrome - and any of the phases can be skipped. Silent migraines skip the headache phase. A good site to learn more about migraine and the symptoms on is migraine dot com.

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  • Posted

    Well hello fellow sufferer.....So sorry that you have joined the club....I've been with this awful condition for around 24 years.

    I understand your feeling of being a prisoner in your own home! There are a lot of us around so please know you are not going mad, it's very real and there are no easy answers unfortunately. I too lost my job but they were very understanding and after some months allowed me to come and go as my illness allowed. I have never been able to return full time and my life has changed considerably.....

    After recently experiencing two rather nasty and different attacks I was referred by my GP to the Hallamshire Hospital. There I encountered an amazing consultant who was so understanding of my situation and has given me an initial diagnosis of vestibular migraine, very similar to yourself albeit slighty different. I too, was surprised but he is ordering lots of tests to determine the actual diagnosis so watch this space..........

    good luck peanut

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