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Your Single Most Troublesome Symptom

Posted , 14 users are following.

Bertman
Bertman

Hello Group, Just thought I would Post, I would like for you to tell us your one most single troublesome symptom. I know that most of us have multiple symptoms. Just curious what bother everybody the most. I will start the ball rolling, My most bothersome symptom is chronic dizziness. 

Bertman 

0 likes, 31 replies

31 Replies

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  • sharonl
    sharonl Bertman

    Posted

    Hi..As time goes on, I am lucky not to have too much vertigo.  I cannot lie completely flat, do exercises which makes me bend or move my head a lot, and I hate quietness,

    The noise in my ears are the worst!  I have lost 30% hearing loss and now afraid of loosing more.  There are specific noises I cannot hear at all.  I just live with the noise ringing in my head every day and find this to be the toughest!

    • Bertman
      Bertman sharonl

      Posted

      Hello Sharonl, I understand your situation, My vertigo has subsided substantially, only to be replaced with loss of balance. As the disease progressed the balance went down hill. I went from a cane (still able to balance by switching hands with the cane) to a walker to support me both left and right sides, to a wheelchair when I would fall back away from my walker. 

      Bertman 

  • patrick12162
    patrick12162 Bertman

    Posted

    Hello Bertman, I've been lucky so far and only had 2 attacks that put me down with vertigo.   I don't know if you remember but my ENT prescribed patches behind my ear.  I've had MD not quite a year yet.  The patches worked and stopped my vertigo and they are Scopolamine.   I think they use these for people on cruises.  I was on these for 4 or 5 months and the side effect was chronic dry mouth.  I finally got off them but I will say, they stopped the vertigo.  I now carry with me a little roller bottle of Vertigo X and put behind my ear if I feel vertigo coming on.  It seems to help.  I really feel for the younger people who have MD and will have to deal with it the rest of their life.  I'm 66 and not looking forward to what MD might have for me in the future but pretty sure I'm not going to be around 40 years to deal with it.  I've got to find an ENT that will prescribe betahistine for me.   I want to try it just to see if it works for me.   Thanks for starting the discussion and you seem to be the Godfather of MD.  Always find your post interesting and informative!

    • Bertman
      Bertman patrick12162

      Posted

      Hello Patrick, Thank you for sharing, Meniere's disease is a wicked thing to deal with. The symptoms can be most disabling to say the least. I have learned a lot from meniere's, it got my attention at the onset of my first severe vertigo attack and has kept my attention with the unpredictable symptoms over the years, I have a lot of respect for the disease, unfortunately it controls my life on a daily basis. Thank you for being a part of this group, we are stronger in numbers. 

      Bertman 

    • Bluesmann
      Bluesmann patrick12162

      Posted

      Yes get the betahistine......its available form compounding pharmacies in the us or Canada....the right does can make a world of difference!
  • Bluesmann
    Bluesmann Bertman

    Posted

    How it comes and goes.....I will go along and feel pretty good then out of the blue I get the full headedness....then a dizzy spell hits...then out of nowhere the room will start moving.....thankfully they go away fairly fast but once my dizzies return it takes quite awhile to feel normal again and I try all kinds of things...plenty of water....eply maneuver etc...I just wish I could pinpoint what causes it and what makes it go away.....
    • Bertman
      Bertman Bluesmann

      Posted

      Hello Bluesmann, I can relate to that, in the early stages of meniere's I would have these "out of now where attacks" that set me down in a hurry, then the next day I would feel better and return to normal duties

      And then here we go again another spell, I first contacted my primary Physician then after some testing and such I was referred to an ENT and he sent me to a Otolaryngologist for further testing. 

      Bertman 

    • mary16977
      mary16977 Bluesmann

      Posted

      I'm the same way...if I have a bad day it takes a couple days for me to feel right again. And "right" for me is just the normal daily slightly dizzy feeling. smile But I can function and know my triggers so unless an attack creeps up I just walk on eggshells hoping all stays as it is. I keep telling myself I'm lucky but its a crazy way to live lol The tinnitus, the dizzy, the hearing aids in my 50s. I'm glad I found this group so I can unload the frustration when it gets overwhelming.

  • Willow4
    Willow4 Bertman

    Posted

    Everyone has such good success with the Betahistine on here and I tried it 3 -4 different times and no help.  I just wonder if it’s how it’s compounded here in the states. 
    • Bluesmann
      Bluesmann Willow4

      Posted

      what dosage did they give you .  I am in the states
    • Willow4
      Willow4 Bluesmann

      Posted

      It’s Was just this past summer since I tried it an it seemed I was it 3 times a day and 16mg comes to mind but I honestly don’t know.  I’ve tried it 3 different times since being diagnosed.  Dyazide has been most effective for me and the Sac Decompression.  The decamethasone injections helped some also.  
    • Lizzie1453
      Lizzie1453 Willow4

      Posted

      I take 16mg x 3 daily but I also add a paracetamol with the morning pill which I take before moving and with the early evening one too. I take 10mg of Amiltriptyline before going to bed to kill nerve pains which feel like pins & needles in my skull.  The Betahistine does work but takes 4-6 weeks to kick in and a lot of people are on a much higher dose than I am.

  • christine_35821
    christine_35821 Bertman

    Posted

    Hello Bertman. I am in U.K. and when I was diagnosed in July having been previously diagnosed with labyrinthitis, I was prescribed 16mg x 3. In December I was told by my gp to cut down to 8 x 3 which I did. After a week I started to get ear pressure and hearing distortion so I went back on 16 and made a private appointment with a neurotologist. He examined me thoroughly and took pictures in my ears,  checked my balance then prescribed 24 x 3.  I am 3 weeks in now and stable. I have a follow up appointment in 3 months, hopefully on the nhs. In U.K. the usual dose is 8 x 3 for maintenance but I’m obviously not there yet. Since being on betahistine I have not had an attack of vertigo but my hearing has deteriorated. I don’t know what percentage of sufferers in U.K. don’t respond to betahistine but I will ask my neurotologist at next appointment along with other queries. I was asked to keep a diary of symptoms and have observed a few things which impact symptoms such as sinus issues. That affects the pressure and consequently the tinnitus. I have used my allergy spray and my pressure has reduced again. Still not gone completely though. 
    • Bluesmann
      Bluesmann christine_35821

      Posted

      I agree 100 percent...I have gone quite a few days in good shape since on betahistine and then when sinus fills dizzies come back.....seems to be. a correlation for some of us.
  • jim79476
    jim79476 Bertman

    Posted

    Can you order Betahistine (live in Montana) directly from a pharmacy in Canada. Has anyone done this?  Have never tried because I read it was no better than a placebo, under scientific trials. 
    • Bluesmann
      Bluesmann jim79476

      Posted

      ever heard that people do it and it has worked for me and many others on here..there was a post awhile back from. someone who posted a pharmacy in the states who is compounding it
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