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Is it really vm??

Discussion in 'Your Living Room' started by danni1979, Oct 23, 2019.

  1. danni1979

    danni1979 Member

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    Very very long post***my story. From about the age of 5 I have sporadic rotational vertigo spells with vomiting, back then after a lie down I'd get up again and be fine, I remember my one half term spending the whole week lying down because I was so dizzy(not actual vertigo)so I had times when I was generally dizzy on top of the vertigo out of the blue, I dont remember any other symptoms ie hearing etc, just the vertigo. Then when I was 14 I woke up 1 morning with vertigo, this time was different, it didn't pass, everytime I moved my head the vertigo would start, my dad called the Dr, I wasn't given any explanation, this carried on for weeks and then gradually into months, into years, I became absolutely terrified of having vertigo, I became housebound, drank alcohol to take away the feelings, anxiety and panic attacks came, I eventually became agoraphobic. I had lots of treatment for anxiety.About the age of 21 I started getting migraines,I still had dizziness off and on, the migraines would evolve, I remember when they thought I had neuralgia because my face hurt so much, then they moved to behind my ear. During this time I started getting ear infections, I had become aware of menieres disease and this utterly terrified me! I was constantly at the Dr with ear pressure, it drove me mad, they put it down to my sinuses and I learned a whole ton about ears. When I was 30 and pregnant with my eldest my migraines evolved again, this time I got kaleidoscope auras.All the time still having terrible anxiety about getting vertigo, still having ear issues off and on. Then when I was 36 my dad died, a few days after his funeral my right ear felt off, it had pressure there and I could open my eustachian tube but it didn't release the pressure, it lasted a hour or so. Then a couple of months after I had just got off the phone with a friend when my tinnitus changed(I have always had tinnitus as long as I can remember) it went very low humming and very loud, then the pressure in that ear started, sounds distorted like listening through a blown speaker,my head was pulsing and tingling, I was absolutely terrified and had the worst panic attack if had in years. This lasted about 6 hours with me sitting in my room, terrified, throwing up because I was so scared, scared to move. It passed and then a couple of months after that is happened again, this time I tried to pay more attention, I had the distorted sound, insane ear pressure(I could pop my ears fine and it wouldn't relieve the pressure)hearing seemed to drop, low sounds made my head vibrate,flushing the toilet made my ear drum flutter, head tingling and pulsing, roaring low tone tinnitus, this lasted 8 hours, I slept and then the next morning had a tremendous migraine(I have had migraines around these 3 incidents)I was incredibly shook up, went to ent who checked my hearing , said its the same it had been for years. Then a couple of days after that episode I started getting these awful symptoms, face and head pressure, dizziness, head zaps, body tremors, I became bed bound, everyone kept telling me it was anxiety and I knew it wasnt!I ended up paying to see and inner ear specialist to which he straight away diagnosed me with Vestibular migraines! He believes the vertigo of my childhood is mav, and that I never had anxiety to begin with, that it was all mav,visual vertigo etc..They also believe that it damaged my inner ear as a child. I'm on medication, and I've become used to the symptoms to a degree but every now and again the fear that it's really menieres rears it's ugly head(like now) I google and search and trawl EVERYWHERE to try and find people with similar ear symptoms to me,and there seems to be so few..and that's what makes me question the diagnosis, the ear symptoms, even though I had migraines before /after each of the episodes. So the fear still remains.. And I have that knot in my stomach, the light-headedness.. Is it really vm?? If you've got this far thankyou so much, I really just needed to get this out today, thankyou xx
     
  2. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    It is possible for it to be both, MAV and menieres. Some doctors actually think the two diseases are two sides of the same coin. I was diagnosed w Menieres and we are pretty sure I have MAV as well. One key thing to consider, do you have measurable hearing loss?
     
  3. danni1979

    danni1979 Member

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    Yes, the drs have told me there's a grey area where menieres and mav overlap, they dya I'm in that area. They belive the migraine attacks the inner ear, hence the ear symptoms.
    I have had many audiogramz over the years, my hearing has stayed the same for years. It does feel like my hearing goes when j have the ear episodes as I call them, last time I managed to see ent and have hearing tested 2 days after an episode and there was no hearing loss
     
  4. Bonlyn

    Bonlyn Active Member

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    I agree with PleasenoDizzy and her assessment of MAV and menieres being tied together for some. I have been diagnosed with both.

    Have you been following a strict MAV diet? Specifically the one you can find in David Buchholz , Heal your headache book. That is a good start in eliminating some triggers. But must note even though I follow it faithfully, I can not control the weather and that is a big trigger for me.

    Sorry to hear your difficult journey and starting at such a young age. I hope you can find something on the forum that will help alleviate your symptoms.
     
  5. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    If you go by the technical definition, it isn’t menieres if you don’t have progressive and measurable hearing loss, usually starting in the low tones and slowly moving up the spectrum.

    ultimately does it matter though? The hard part with either of these disorders is finding what works to put your individual symptoms at bay.

    And yes Bonlyn, weather is and always has been a big factor for me too, 8 years in. The last two days have been really hard for me - discomfort even in my GOOD ear (I’m post labyrinthectomy in the bad one but still get some weather related issues there)... this afternoon the storm hit and we are getting upwards of 10” snow by tomorrow. As with summer storms, as soon as the precipitation starts I finally start to get relief. This is the most extreme my good ear has ever even which is scary but trying not to think about it.
     
    • Agree Agree x 2
  6. Clare

    Clare Active Member

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    PND, I hope you get through this barometric phase soon. Even post-laby, while the pervasive fear of vertigo attack is gone, there is still that residual concern over the good ear faltering. I get the scary good ear stuff. I'm getting a hearing test in mid-November to check whether there is any low-frequency hearing loss in the good ear; hopefully just to put my mind at ease.
    Danni, what you describe isn't the classical 4 symptoms of menieres -- hearing loss starting in lower frequencies, tinnitus, sense of fullness, and spinning vertigo attacks. Welcome to the forum. There are several people here who have MAV and may be able to help. I hope you can find relief soon.
     
    • Agree Agree x 2

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