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vestibular migraine without headaches??

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karramba
karramba

Yesterday I was diagnose with vestibular migraine. I have to honestly say that it's quite surprising news, as I have never had any headaches in my live. I barelly know what headache means? I am 32 yo. My sypthomes are tinnitus, during vertigo episodes (1-10min) two times a month, sweating, bowel movement, dizziness, hypersensitivity for sounds. Episodes starting while bending, head movement, change of posiision of head etc. Moreover in CMT scan visible contact of vestibulocochlear nerve with a vessel.  Is it possible I have vestibular migraine without headaches???

0 likes, 4 replies

4 Replies

  • PAD6
    PAD6 karramba

    Posted

    Hi, suggest patience is in order. I was diagnosed last month as having had suffered from migraines twenty years after the event I experienced by a reputable neurologist. At the time I was 30 and the hospital team thought I had had a stroke! My experience is it takes time to get down to the real route cause. Would like to be more helpful, but some of your symptoms sound very familiar to me who years later still yet has to get a confirmed diagnosis.

    Hope you get to the bottom of it soon.

    • karramba
      karramba PAD6

      Posted

      Thank you for answer. That means you developed headaches during time? Is it curable? That really scares me!
    • PAD6
      PAD6 karramba

      Posted

      Hi Karramba,

      I have most of your symptoms but never get headaches. However, very occasionally, out of the blue my vision is affected. What happens is this. If you look around the room, its like looking at a massive jigsaw puzzle. Except that about one in four pieces scattered across the puzzle is missing. The picture I see has lots of blank spaces in it. Lasts about three hours and then goes. No pain at all. However, during this period I have to be careful not to do anything too active, can't drive, read or watch TV and just have to wait until the vision is fully restored. The specialist neurologist I have seen says its migraine. But I am not sure he is right. The first time it happened it was very scary as the hospital team said that for a very short period my eyes had been deprived of oxygen. Which would be consistent with having had a stroke. But its never caused me any physical pain or discomfort.

      I wouldn't get overly worried as this may never happen to you. The more I have to see medical specialists, the more I realise how much they still don't know about our bodies. They very often can find the root cause. But sometimes they are just baffled. One of the specialists I saw just called me 'an anomaly'. My symptoms he said did not fit any of the 'pigeon holes' in his portfolio of causes he was able to treat.

      In your case the doctor who diagnosed you may just have tried to place you in the pigeon hole that matched as close as he could tell. Alternatively it could be exactly what he said.

      Kind regards,

       

    • karramba
      karramba PAD6

      Posted

      Thank you PAD6. That is really interesting what you are writing. I search internet to find any answers, as my doctor gave me 1,5min. and opened the door for me...so I don't have other choise sad

      I found this:

       Panel:  Diagnostic criteria for vestibular migraine

      Patients need to meet all four of the following criteria:

      •  At least fi ve episodes with vestibular symptoms* of

      moderate or severe intensity† lasting between 5 min and

      72 h (yes)

      •  Present migraine or previous history of migraine with or

      without aura according to the International Classifi cation

      of Headache Disorders (never have had any headaches)

      •  One or more migraine features with at least 50% of the

      vestibular episodes (no headaches)

              •  Headache with at least two of the following

      characteristics: one-sided location, pulsating quality,

      moderate or severe pain intensity, aggravation by

      routine physical activity (no headaches)

                     •  Photophobia and phonophobia

                     •  Visual aura

      •  Not explained by another vestibular disorder (I have nerve contact wiht a vessel confirmed with scan)

      I think doctors are ignorants...unfortunately....I was dismissed after 1,5min. without any explanation whatsoever, he also said that I have to little episodes for medical treatment and there is no place in any trial for me....so bye

      I wish you all the best PAD6, thank you

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