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does anyone have this feeling on most days

Posted , 3 users are following.

patty818
patty818

I'm curious does anyone with MAV have this feeling in the background most of the time, feeling like your slightly moving when your sitting or standing?  I have had this awaful disorder now for almost a year.  First it was constant rocking and swaying, with the dizziness to start a bit before the headache that comes with neck pain and into the tops of both shoulders, I think now its possible the migraine is in the tops of my shoulders, coz when I get the dizziness for awhile right before the slight 3 day headache and my upper shoulders feel achey for days.  

But now its like a constant slight feeling of moving, like bobbing alittle, but not so much rocking anymore.  Does anyone have some kind of constant feeling all the time?

been doing VRT for about 3 months, on no meds, afraid of them, anxiety is getting a bit less because I think i'm finally acepting its not life threatening.  Still have anxiety some days but if it gets bad along with bad dizzy days, I take a xanax.  

This week I've had the headache off balance thing for 3 days, thats usually how long it lasts for that part of it.  Then i might get a couple of days of nothing, which is wonderful.  

Any answers would be helpful

Thanks

0 likes, 6 replies

6 Replies

  • marlene21102
    marlene21102 patty818

    Posted

    Sounds like you can have MdDS and Mav ,some can overlap each other ,I've got MdDS 5 yrs and still counting . I've had Neckache/ pain for over 10 yrs . Plus Tinnitus and Sinisitis / Rhinitis . 
    • patty818
      patty818 marlene21102

      Posted

      My ENT said the same, its Mav with a bit of MDDS.  Whatever it is, I don't like it.  It seems to get a bit better then the headache stuff starts along with the anxiety, and this can go on for days at a time.  

      What are you doing for it?  What type of dizziness do you have?  Five years thats a long time.  I never was on a boat, about a month after this started I went on a 6 hr car trip, but the dizziness was before the trip.  It crazy how one day your fine, then the next your dizzy and having anxeity attacks, make no sense.  Do you have anxiety with it? 

      sorry to ask so many questions.  Thank you so much for your help.

    • marlene21102
      marlene21102 patty818

      Posted

      Patty mine was not from any boat trip ,I've had bad sinuses and neck ache as I said ,5 yrs ago I went to an Osteopath for my sinuses ,2 days later I got up to the MdDS ,coincidence ? I know I was fine prior to that visit . I have had a CT scan 3 yrs ago ,and 2 neck bones were out of place ,had these put back in ,hoping that was going to sort the MdDS out. But no it's stayed put . 

         Anxiety I've had since I got a virus 10 yrs earlier  but then getting MdDS hasent helped matters at all in regards to that ,just piled it on . I've just been put on HRT trial for 3 months  Im hoping that may calm situation down . I believe most of balance issues are hormonal to some degree ,have done for last 10 yrs ,and maybe the neck ache is seperate issue  jury still out on that . 

         I take no meds at all in regards to anxiety ,I did in beginning ,but they just increased the anxiety problem ,work for some but not for others how it is . 

         I've not got Mav ,but MdDS is constant ,worse it seems if Im having a bad tinnitus / neck ache day ,as sinuses flare up also . So it's a day I write off ,what I will say with MdDS ,driving Im absolutely fine ( weird ) I don't feel it at all ,just when upright ,and sitting in a chair ,walking is as if Im got sponge on bottom of my feet . Some days Im just glad to get into bed , how bad it goes  I know my limits after having it this long . I do chat to others since I got it who understand what I feel. We bounce off of each other ,and pick up the latest info on what's going on research wise . Will PM you a name you can contact . All the best Patty 😩

  • rita52071
    rita52071 patty818

    Posted

    Patty I was diagnosed with MAV was on meds....just about completely off.....meds helped only to a point....I went to see a neuro optometrist who specializes in vertical imbalance....has to do with your eyes.......very very big improvement........the meds I was taking were horrible horrible horrible  and dangerous....Thank God i am ok from them  need to get off one more which hopefully will be in about 2 weeks.....I do follow the migraine diet  except for tonight....lol and I dont ear gluten or dairy except for tonight....went out to eat and really blew it  ...........this may happen every four or five months  
    • patty818
      patty818 rita52071

      Posted

      How did the neuro optomitrist help you? Was there testing done?

      This is an awful disorder to have. I have put off the meds because I've read some awful things about them.

      Thank you for replying and I hope your dinner doesn't mess you up

    • rita52071
      rita52071 patty818

      Posted

      yes it is horrible....very long first exam...needed prisms   had slight vertical imbalance.....basically my eyes weren't see an object in the same way....eyes werent working together........Yes i was taking horrible meds that i probably didnt need.....i have one one to get off of...on very low dosage...hopefully in a week or so i will taper more off of it....only two doctors are trained in the states with this speciality....
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