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Discussion in 'Your Living Room' started by Raider Nation, Aug 2, 2019.

  1. AnneT

    AnneT Active Member

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    I haven’t had the poking my eyes out feeling, but during the gentamicin recovery I had the stuck or mismatched eyes feeling after opening my eyes. I might have had something similar after bad bouts of vertigo attacks... probably my vestibular system getting killed off.
     
  2. Raider Nation

    Raider Nation New Member

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    Saw neurologist today and he says I do have MAV to go along with Meniere’s. So he told me I could take different pills or try Cefaly Dual for migraines . I don’t want to take anymore pills, so i’m buying the device. It’s expensive, but i’m still willing to try anything and everything. I will continue to take betahistine and nortriptyline and if I feel this is working then will try and get off those . He also suggested I take b2,d3, coq10, magnesium glucomate. He also said try tai chi or chair yoga for head movements. Just wanted to throw that out there in case others with MAV wanted to talk to there Docs about cefaly. I had never heard of it.
     
  3. Bonlyn

    Bonlyn Member

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    Hello Raider Nation,

    A few years after being diagnosed with Menieres, I also was diagnosed with MAV. I have had a bad time with the MAV since May. Unfortunately you have to wait a long time to get appointments where I live. Downside of urban areas. Haha I am still waiting for an appt with the Headache Center...April 20, 2020.

    My husband did research on the cefaly and now I want to get a prescription for it when I go to my fly-- by- night neurologist in October. I have read good reviews...would rather try that before topomax drug. I already tried verapamil with a terrible reaction.

    I am on a MAV forum too, but only 3 people have tried the cefaly...two liked it and said decreased attacks, one was allergic to the adhesive you use to attach device.

    I have been legalistic in following the Heal Your Headache diet and regime by David Buchholz. I f you have not read it you should get a copy off of Amazon as soon as you can. Unfortunately, even though I have been faithful to the regime...this summer's weather really was brutal to my MAV.

    I also feel I benefit from Migrelief. In one pill it combines b2, magnesium and feverfew. You can get it off Amazon. Some MAV people like Migravent, but that has butterbur in it, which is supposed to help migraines but I was allergic to. I TAKE a separate coq10 tablet....which I also think really helps and 5000mg D3.

    Please let me know your progress on the Cefaly. I know all of these things take time to kick in, but hopeful this will be very helpful for us both. Wishing you the very best. Bonnie
     
  4. Pupper

    Pupper Active Member

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    RaiderNation, yes. If standing up and reading something in hand or cell phone, then looking up, causes slight dizzy.

    I've noticed when I'm in a crouched position for a little while, it'll cause more than mild dizzy. Like say, crouched on one knee fixing an electrical socket. It'll cause dizziness for about 10 minutes afterward. Not crazy dizzy, but uncomfortable dizzy.

    P.S. I'm a Raider fan too. Good win against Denver last night to open the season.
     
  5. Raider Nation

    Raider Nation New Member

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    Bonlyn, I have ordered and will let you know how it goes. I am supposed to do it 20 minutes in the morning and 20 minutes in the evening. I did try one in the office for about 5-10 minutes. It wasn’t painful, but it was uncomfortable.

    Pupper, I was so excited. Nice to start off with a win and looked good while doing it. Now comes a different animal.
     
    • Friendly Friendly x 1
  6. Raider Nation

    Raider Nation New Member

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    So, I must ask. Has anyone tried CBD,THC, or (medical) marijuana. Asking for a friend.. I’ve tried about everything else. Just thought I’d ask.
     
  7. Onedayatatime

    Onedayatatime Active Member

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    I tried CBD and saw no benefit. To be fair, I had to stop due to allergic reaction. But this question reminds me of this:
     
  8. redwing1951

    redwing1951 Well-Known Member

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    I use CBD for stress and anxiety. Stress is the number one reason I have had flair ups of MD. The CBD has definitely made a difference in my stress and anxiety levels.
     
  9. Onedayatatime

    Onedayatatime Active Member

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    RN,
    I also experience what you describe with your eyes. Been 4 years since an my last eye exam, I plan to discuss this issue then next month as I need new glasses anyway. Still not sure if it's related to the MM or MAV. I believe it is, but not positive.
     
  10. recoveringoptimist

    recoveringoptimist New Member

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    CBD seems to help with anxiety. Cannabis helps even more, and seems to alleviate the feeling of dizziness. I don’t know that it can stave off an attack but I found this woman’s account interesting: Meniere’s Disease and Marijuana by Constance Bumgarner Gee
     
    • Informative Informative x 1
  11. Raider Nation

    Raider Nation New Member

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    Well, I just had an attack. I Haven’t had one since the end of July. The last one in July I kinda felt strange, so I new it was coming. This time there was no warning. I was looking down at my iPad and felt like I got struck in the back of the head. So of course, there was vertigo and vomiting and diarrhea. Now I’m just trying to lie down and stay as still as possible. I don’t know if looking down caused the attack or the weather change that we are experiencing. Just frustrated. I wish I knew when they were coming and it would make it somewhat easier. I guess, I’m just wondering if those that have the attacks have any warning or do they happen out of nowhere? Again, after I get them I’m just afraid to go out in public. I’m always thinking it’s gonna happen and I won’t be close to home.
     
  12. Rich

    Rich Member

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    No warning, just happens. Happened twice when I was driving and turned my head to the left to check for traffic. Once , like you, looked down at iPad and bang, there it was. I've had it for many years, had attacks while driving a vehicle, once while on a trike ( three wheeled motorcycle). Don't trust myself on a two wheeled cycle. My attacks last around three hours and takes a couple days to get my feet back under me. As far as having an attack in public, if it hasn't happened to you yet, it will. Prepare yourself get a little emergency pack and carry it with you. Get a letter from your doctor and carry with you when you drive, those pesky highway patrol guys have a tendency not to be to understanding when your parked along the highway laying in the front seat throwing your guts up. Lol. Trying to explain to them that the worst thing they can do is make you move. A letter might be helpful.
    Try to live as normal as possible and by all means,this stuff is stressful and you may want to take some sort of anti anxiety med.
     
  13. Striker

    Striker New Member

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    Hello I am new to the forum. I can totally relate to this. HAd it for about 5 years, it burned itself out and symptom free for about 5 years and now it has come back. ENT prescribed low sodium pills and that's it. I am wondering if Gentamicin treatment would work for me
     
  14. Raider Nation

    Raider Nation New Member

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    Ask for betahistine first. I’m still taking everyday along with the other stuff I already listed in this post. By the way, can anyone tell me what pharmacy they use to get betahistine from Canada, please?
     
  15. Tony Wilson

    Tony Wilson New Member

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    I use Canadian pharmacy king. Super easy to upload your Rx and the rest is self explanatory.
     

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