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Discussion in 'Your Living Room' started by mbgphoto79, May 11, 2017.

  1. BayMama

    BayMama Member

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    Wow, you had to jump through a lot of hurdles! So glad you are finally getting to try the AVs. A lot of us got some weird tinnitus in the beginning. For me it was in the first few days, but it passed quickly and then things got a whole lot better, so don't worry if you get weird tinnitus. Lost of good wishes that this works!
     
    • Informative Informative x 1
  2. mbgphoto79

    mbgphoto79 Member

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    Good to know, last night my tinnitus was raging and the ear pressure was way more than normal. We were in a loud restaurant, then the anxiety started... But it's good to know this is actually to be expected and a sign that the meds are starting to do their thing.
     
  3. mbgphoto79

    mbgphoto79 Member

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    Small update, feeling much better today. Might just be a remission, but I haven't been this anxiety free in a long time. Down to just 1mg Valium today. Tinnitus and hearing loss is back to normal levels, mild if any dizziness. 4 days in, I hope this trend continues.
     
  4. scott tom

    scott tom Active Member

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    That's great news. If you hit a bump, don't panic. AVs are sometimes 2 steps forward, 1 step back. Just keep plugging away.

    Are you also taking 3000 mg of lysine per day on an empty stomach?
     
  5. mbgphoto79

    mbgphoto79 Member

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    No, I haven't picked any up yet. I have heard it helps also. I guess a trip to the store is in order!
     
  6. scott tom

    scott tom Active Member

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    Most of us take 1000 mg 3x per day on an empty stomach. It must be taken at least 20 minutes before eating or 2 hours after eating. If you take it with food, it's useless. Good luck! :)
     
  7. BayMama

    BayMama Member

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    That's great! Sounds promising. May the trend continue!
     
  8. mbgphoto79

    mbgphoto79 Member

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    Setback. Worst attack yet. Home from the hospital this am. Sticking with the Valtrex. Not giving up!
     
  9. teesdale

    teesdale Active Member

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    Stick with it mbg. Not sure how long you've been on the Valtrex but for me it took a few months but now I'm coming up on 5 months of symptom-free living. My hearing has also improved. If it was "burnout" apparently the hearing would be much worse. My only explanation is the antivirals. Hang in there!
     
  10. mbgphoto79

    mbgphoto79 Member

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    Only been two weeks. My wife picked up some Lysine today. Pretty much recovered today but still a bit more off balance than normal. Good to hear it took a while on the AV's, you aren't the first one to say that. Thanks for your feedback.
     
  11. scott tom

    scott tom Active Member

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    Yeah, two weeks is nothing. Stick with it for 3 months at the max dose before deciding whether it's working or not. If it works sooner, then great and reduce as needed.

    Btw, be sure to take the lysine in an empty stomach, otherwise it's not effective.
     
  12. tornadito68

    tornadito68 Member

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    I have been taking AV (valacyclovir) since Feb 2017. I did the 3000 mg for 3 months, 2000 mg for another 3 months and then 1000 mg for a few weeks but I had to go back to the 2000 mg as my symptoms got a bit worse when I was taking 1000 mg.
    I also take Betahistine 16mg 4x daily BUT BE VERY CAREFUL with the BETAHISTINE as it can cause really bad headaches. I was having this terrible headaches and I was sure they were migraines. I private message with FOREVERGREATFUL and she told me she was having terrible headaches also since she started taking betahistine. I had been taking Betahistine for about 3 years so I didn't understand why I would suddenly get the headaches. Then I remember that I tried to save money and started taking Betahistine from Canada which comes on a pill/tablet form. The USA Betahistine is compounded because it's not approved by the FDA in the here. I asked my pharmacist at the compounding pharmacy and he told me that the compounded capsule is pure betahistine and the pill/tablet from other countries is not pure. I switched to the compounded betahistine and NO MORE HEADACHES from the very first day I switched.
    I would say that my Menieres is very much under control. My hearing is very good on the affected ear. The tinnitus is very very mild. The fullness only comes very seldom for a few seconds or minutes. I have some dizziness that I can totally live with as it's very very mild. So in conclusion I feel that the AV's and the betahistine are keeping my Menieres under control.
    Hope you find relief soon but don't give up on the AV to early.
     
  13. mbgphoto79

    mbgphoto79 Member

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    Thanks Scott Tom and Karina for the feedback! I just need to make it through Christmas in retail and my stress level will reduce dramatically! Or, maybe I should get out of retail...

    MG
     
  14. BayMama

    BayMama Member

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    That's great news, Karina!

    Mbg, glad you've got the lysine. That with the AVs should really pound the virus. Got get 'em!
     
  15. mbgphoto79

    mbgphoto79 Member

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    Tip toeing through life right now. Got up today and with about 10 minutes I felt anotherattack coming on. Chewed up zofran, Valium and Meclizine and was able to head it off, but not after passing out in bed for 3 hours. I have tomorrow off then it’s back to work for me. Hopefully this trend doesn’t continue too much longer. On a side note, this is the first time I’ve really had these “mini attacks” before. Not as debilitating, but it still ruins most of your day. I’m still attributing it the the AV and lysine and will continue on the path

    Another side note, my wife mentioned atlas adjustments for me to her chiropractor today and he said that he could and does do them, but since I basically can’t lay flat that he would recommend acupuncture instead as a first line of defense. Any thoughts on atlas adjustments? I heard about them last night on a FB page, my bike and then car accidents in the late 90’s fit the bill for this being a possible cause of my MM.
     
  16. mbgphoto79

    mbgphoto79 Member

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    Pupper convinced me to write a little about my last attack, curse words edited.

    Thursday and Friday were super stressful and long days at work. Basically me fixing F up after F up, and having to keep track of all this while informing the customers and my boss of what was happening. Friday night I woke up with a spinning attack after I felt my head list to the left. I got up, chewed up a zofran and Valium and propped back up in bed. I was able to focus in the dark enough to fight through the nystagmus and pass back out.

    I woke up with the kids at 6:30, but I could tell thing weren't right. It was going to be a long day. After the kids were off to school I loaded up on meds and tried to eat a bit of cereal before heading into what would surely be a continuation of yesterday's cluster.

    By the time I was at work, I could feel the forces lining up against me. I went ahead and took more Valium and zofran. I made it about an hour before I headed home, I just clocked out and left.

    Getting home OK I told my wife what was going on, she was still there with my kids finishing breakfast. I propped back up in bed in my usual spot and proceeded to pass out again. Like the first time, I woke up in a rush, vertigo all over me like a wave on a shell. I chewed up another zofran, a desperate attempt to prevent the inevitable.

    I started to ramp up my breathing, the nystagmus running panic into my blood quickly now. And then, my hands began to tingle, the same feeling as you get when they are asleep. This feeling crawled it's way up my arms to just above my elbows. Not cool. This was for real. Whatever was coming was going to be brutal.

    Finally surrendering to the bathroom amid the swelling nausea, I flung the seats up and sat on the edge of the tub. I gripped the cold, dirty edges of the toilet bowl, wanting for stability as the waves of preparatory saliva welled up in my mouth. At last, a cough..and then wave after wave of heaving the minor contents of my stomach everywhere...and I couldn't have cared less.

    In between vomiting sessions the nystagmus was absolutely unreal. My eyelids trembling, involuntary tears mixing with the fluid on my chin and dripping to the floor. The only thing that would take the vertigo away was the heaving. Imagine begging to go another round just so the spinning would end for 20 seconds. I was squeezing the toilet bowl so hard my hands were starting to turn white. Slowly, my legs began to also fall asleep. Now shaking violently like a leaf in the cold wind, I was burning out quick.

    But the waves just kept coming. Again and again I would lean in to vomit, nothing coming forth, yet the intensity of the heaving becoming ever stronger. Absolutely drenched in sweat, I could feel the beads running down my chest mixing with the saliva now freely running out of my hanging mouth. Eventually my throat became numb, but the twinge of blood showed its all too real face in the vile pool below me. It was time to call it. Throw in the towel.

    I blurted out something to my wife, who was trying her best to convince the kids that despite what they were hearing, I wasn't actively dying. I confirmed that yes, I did need a lift to the big house. Please. Make it stop. Fuc*. Jesus Christ make it stop G dammit. Fuc* ugghhhh....I can't...help...help...me...call...

    I don't recall a whole lot of what happened once the EMT's got there. I know they were female. One of them started an IV in my hand while I continued to heave into the thin blue plastic bag. In went more zofran. The backwards, 10 mile ride to the hospital was absolute hell. Trying to keep an eye on the horizon, hacking, heaving, blood now all I tasted. The rush of cold air exiting the ambulance was sent from the heavens, but that would last a few short seconds as they took me into a room.

    Now alone, the nurse tried to comprehend what I was trying to tell her. My voice was hoarse. "I have Ménière's disease" I said. "You have Lou Gherig's disease? "No, no, fuc*. Man, I mean, no I have MEN YEARS disease. It's an inner ear condition and I get these flare ups" ....

    I continued to spin out for another couple hours, but the insane amount of zofran in my blood eventually stopped the heaving. The usual blood work, stroke test, etc and they were kicking me out within 3 hours, "we will be here if you need us". The ED doc wrote me a script for meclizine, I guess to feel like he did something.

    I left there, riding shotgun through the black night feeling like someone who had just seen a mass murder. The thoughts of what just happened already ramping my anxiety back up. At that point, I would have done just about anything to guarantee never having another attack. But I kept in mind that I had just begun my acyclovir regimen and this was to expected before getting better. I had to get better. I'll go to the end of the earth to get better, or at the very least not get any worse.

    And that's basically it. One of the thoughest days I can remember.
     
  17. rwj6001

    rwj6001 Member

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    Well...........thank you very much for that little graphic trip down memory lane, I hope everyone else enjoyed it as much as I did.....NOT!

    Way too many things in common with my last bad attack and I'd just as soon forget that mess.

    One big difference is I fight the nausea, never cared for ejecting stuff out of my pie hole, so I fight it with every ounce of my will.......probably only makes things worse.......Oh, I throw up, of course......but I always fight it.

    And here I thought I was the only one who begged and pleaded with God.......in between weeping, that is.

    Anyway, your big attacks sound a lot like my big ones, although you seem to be having them much more often, I'm sorry you have to go through that, because I know you're pain and I wouldn't wish it on my worst enemy.

    I hope you find some relief soon.

    RWJ
     
  18. tdoak

    tdoak Member

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    I have been there, although most of my attacks are not that severe. Praying to god is not an option for me :)
     
  19. mbgphoto79

    mbgphoto79 Member

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    Glad at least a couple of you could appreciate (?) or at least relate somewhat to my story. I couldn't write about it for a few days, but it was a release to get it all on paper so to speak. Thanks for indulging me.

    From all of the accounts I've read, my experience is pretty common. some have vertigo without vomiting, others go days or weeks without relief. My dad had a few vertigo attacks and still does, but it's hard for him to hear about my stories because his attacks weren't ever as bad.

    Good luck to all, may none of us never experience what I did again.
     
  20. Pupper

    Pupper Active Member

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    Praying to God isn't an option for me but I prayed anyway.

    Well, not really praying. Just repeating at intervals, around the 4th hour, "God please help. God please help me. Oh God please." I was just muttering things almost unconsciously at that point. Christian upbringing. I'm sure he forgave me.
     

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