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Help please anyone desperate 10 non stop years of hell

Posted , 7 users are following.

michael33268
michael33268

Ok Guys please help me: I am in dreadful pain and sickness once again, which has been my life for the past 10 years now.

I am a 58 year old male 10 years ago I was diagnosed with having Meniere's Disease after a very long spell of not being able to stand up, I was trapped on the floor, any attempt to get up made me vomit and the room just went around and around.

This eventually stopped after a 6 days, it left me with both ears ringing loud, this truly has not stopped once in ten years, if the sound was on a radio, the sound setting would be today a 6, in the past when I ate the dreaded salt, caffeine, and all the triggers we know it would be so loud I could not hear.

Despite not eating any of these, my ears have not stopped having ringing sounds in them for ten years 24 hours a day 7 days a week, I have seen all the gps, all the specialists, and there’s nothing they can do.

They did however put me on serc16 10 years ago, and it just takes a little bit of the unbalance away, but I still walk drunk, and feel dizzy a lot of my day every day, on the odd occasion when I tried not being on serc16, within 36 hours I was unable to even walk I was so dizzy.

My main problem and it’s a huge one, is the weather, when the weather changes form low pressure to high pressure or vice versa, my eardrums feel like they are pushing outwards, my eyes cant stand any light, and my head feels like it’s being pumped up with a pump, this makes me feel sick to the stomach, in mind blowing pain with headache, and it lasts until the weather changes back again.

If the weather go’s from say a nice hot day, the change in atmosphere pressure instantly affects my head ears and sinuses, all my sinuses have been checked out in my nose, but no dr can stop my nose from also becoming blocked when the weather changes, the worst days are low pressure weather systems they really hurt me and make my ears and head eyes and tummy upset.

Even when I feel fine just going up in a lift a few floors hurts my ears and makes me feel sick and dizzy, also if I am in a room and someone opens and closes the door my ears hurt really bad, or opening the car door, any change in pressure causes problems for me.

And yes I have done all the things like yawning, or pinching nose and gently blowing, I have had ten years of non - stop pain, spent my life in the drs, with consultants, specialists, cant take much more, I can even go up a small hill or mountain, when my wife and I go to spain on our summer holiday , because of me we take a 36 hour coach trip down and back!!!!! Because I’m sure I would ruin everyone’s flight if I dared to fly for first time in my life.

God knows what would happen to my ears and head.

I really need has many tips tha tmay for once help me to live with this, I am sure I will never get better, but need to be able to do something to combat the affects the weather changes are having on my Meniere's Disease please help in any way.

1 like, 19 replies

19 Replies

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  • misskent
    misskent michael33268

    Posted

    Hello,

    It sounds like you have really had it bad. I am almost as bad and have been suffering again the last 6 months. I have lived with sympyoms 17yrs as you will see from previous posts. I managed to live a near normal life until this last bout. I have violent dizzy spells etc, live with tinnitus and wear 2 hearing aids.

    I have trouble most days.

    I read these posts and saw that you can take more than 16mg of betahistine so went back to my GP. I am now on 24mg. I also have buccastem.

    I am waiting to see a Consultant in this area. 

    I am trying to lead a normal life but just go day to day at present. I have not been able to go to work as I drive 22 miles to work and dont feel that I can do this anymore. I am able to drive short distances but not at night!!!

    I am glad for the support this forum has given me.

    I do think you should ask to inc the betahistine??? It has helped me. The attacks are not as violent.

    My hearing is awful and I really struggle with phones.

    Good luck and keep your chin up.

  • Abby1975
    Abby1975 michael33268

    Posted

    Sounds awful hope things improve soon. After suffering with similar symptoms for about 6 months I was diagnosed in August with MD I had a gromet inserted in my right ear on the 18th August and have felt great since, although I was suffering more with spins & nausea, my tinnitus is not nearly as bad as you describe. I've read that some doctors in America  prescribe high quality vitamin supplements, may be worth you googling it. I've also read alternative therapies can help such as acupuncture. I was willing to try anything that might have helped at the time I was feeling really bad but luckily for me the gromet has worked. Hope you get some relief soon. Ps I've also joined a group on face book called Ménière's disease team they have recently posted some info recent studies about tinnitus probably find them on the net to. Abby 
  • angela79369
    angela79369 michael33268

    Posted

    I would recommend proper betahistine and not serc. I would also suggest increasing dose of it like misskent has tried it does help. Im on 32mg x 3times a day, Why hasn't your specialist suggested an increase to try is what I'm wondering? I also have a grommet fitted plus steroid dextramethasone put in it, on waiting list for a further steroid injection. Hyperacusis, sensitivity to loud noises is part of the disease so you have to do yr best to avoid places, soundproof yr cupboards/doors if you can (foam strip) advise no alcohol especially not wine or spirits. I was fine on the plane. The good ear was popping and not a peep out the bad ear with the grommet in! Tinnitus... the bane of all our lives, not sure how to make that better but I know music into earplugs or handsfree mobile phone plugs in ears make me so much worse! Keep us posted. Try increase in betahistine there are no side effects for me. Best of luck.
    • michael33268
      michael33268

      Posted

      Hi is there any benefit from proper betahistine over serc 16 i have never been told by my dr of it, does it work even better ?
  • dan40016
    dan40016 michael33268

    Posted

    If you have not had a brain scan to look for brain seizures, please do so. 

    I have had all of what you complain about. Seizures can cause all of these things. You will probably get to keep the noise. I have had it so long I have managed to ignore it. Most of the day I can do pay attention to the noise. If I think about it -- it is always there to say hello. 

    I hope you don't have Meniear's. I did not. Had to get lucky to find out. 

  • caryl73160
    caryl73160 michael33268

    Posted

    So sorry to hear of your struggles.  I too, was chronic!!  Could never work etc. etc. etc.

    The best solution for tinnitus ever is an expensive one but well worth it if you can afford it.  From an audiologist you can get 'tinnitus retraining therapy' hearing aids.   I did - had to wear them for 12 months, at least 2 hours each day.  This then helps retrain the brain towards sounds, and I have to say it helped me immensely.  I still get the tinnitus but not all the time and nothing major.  When it 'ramps up' I just wear these aids again for a while.   As I say, not cheap, but sure helped me.

    • dan40016
      dan40016 caryl73160

      Posted

      Hello Cary, many of my struggles with this crap are over. I take two drugs for the seizures. No side effects. I have learned not to hear the noise. I can hear it now as I am writting about. It started in my right ear. I had almost learned to ignore it after a few years. Then it went stereo. It has been  almost thirty years now. I don't listen. Cost time.

      When I still thought I had Meniere's the last five years were trouble.

      I started to fall over --- no clue, just jall down. Meniere's group calls this a drop attack. 

      I put a truck in a ditch (no humans hurt -- no more driving). Broke my left leg twice.

      The test I was given was done with electrodes all over your scalp connected to a scope. Able to see what parts of the brain were doing.

      It was possinbe to see the small seizures, one every few seconds. Large ones make you fall.

      I can't be the only person the medical group got wrong. 

      I know how hard this mess is. I was getting very tired of life as it was. 

      Then I found the correct Doctor. 

      Nothing but luck. I had expected the same lines. 

      "Meniers has no real cure -- here try this."

      I hope you get lucky cary.

    • caryl73160
      caryl73160 dan40016

      Posted

      Dan, out of interest what drugs are you taking to help keep seizures under control?   Likewise I had the EEG to monitor electrical activity in the brain over 12 months ago now. There was some 'non specific' (i.e.. they don't know!) electrical activity shown but no apparent seizures.   The thing is, with seizures, I doubt they would be able to pick up on them all the time.  It's all so hit and miss.   Great for you though that they got it right!  '

      For many months I had at least 2 x drop attacks per week.  In between, it was just a matter of trying to recover and function alongwith the acute vertigo etc. etc. etc.  

      Happy to say my life is very manageable now and as Angela says, one just learns to adapt.  Hypersensitivity to sound certainly limits where one can go at times.  

    • dan40016
      dan40016 caryl73160

      Posted

      Hello caryl73160, I take Carbamazepine 200mg three times a day. This is my primary drug. This one stopped the attacks, first pill.

      The othe drug is Levetiracetam 500mg -- this is twice a day. 

      I also avoid loud places. The damage done  probably can not be repaired. I still hope for some memory to return. That process would be very slow and hard to notice.

      I am glad you have found ways to deal with the Meniere's curse. 

      Dan

       

  • Terence_14
    Terence_14 michael33268

    Posted

    Hi Michael, sorry to hear your condition. Hang in there.

    My doctor prescribe to me Flunarizine which is suppose to block the dizziness attacks and to take procholorperazine maleate (like Cinnarizine) when it happens, the hope for the best.  Water pills is now my morning diet and I take Betahistine 24g, 3 times a day. Hope that helps. 

    • michael33268
      michael33268 Terence_14

      Posted

      thank you will try these meds if dr will give them to me, i have tried cinnarzine

       

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