1. Community
  2. Ears, nose, throat and mouth
  3. Meniere's Disease

Help, what can I do?

Posted , 5 users are following.

terri-ann28375
terri-ann28375

I have an ENT appointment in 3 weeks for my MD, but I really don't think I can wait that long to be seen.  It may not seem that long but when you're getting severe attacks on a daily basis, believe me it's a long time to wait. It's really depressing me. I've rang the hospital and asked if they have any cancellations available but there aren't any. I obviously don't want to go to the ED as it's not an emergency, I really don't know what I can do.

0 likes, 12 replies

12 Replies

  • naomi68931
    naomi68931 terri-ann28375

    Posted

    Of course it is difficult to wait when you suffering.  I remember going through the same thing.  I began to do reading about MD and put myself on a strict diet of limiting sodium to 1500 mg/day, no caffeine, no alcohol and low sugar (about 10 grams a day) and by the time I got to the doctor I was already feeling better.  The diet is difficult but it truly works.

    I wish you well.

    • terri-ann28375
      terri-ann28375 naomi68931

      Posted

      I'm already following that diet, I started it when I first got diagnosed 10 years ago. Medication also isn't helping despite an increase and nor are exercises given to me - even the so called miracle one on Facebook. I'm at the end of my tether.

    • naomi68931
      naomi68931 terri-ann28375

      Posted

      No wonder you feel so frustrated and (I suspect) frightened and angry.  I am so sorry you are suffering so much.  I wish I had a magic wand to be of some help.  I hope you get satisfying answers as soon as possible.  I wish you recovery.
  • angela84522
    angela84522 terri-ann28375

    Posted

    You poor thing.  So sorry.  I remember when I was waiting to get in for the first time.  I was having attacks that were lasting for a day or two.. crazy.. Are you in the US?  

    If you are I would suggest to take salt intake down to 1000 mg a day and no caffine or alchol.  Get some Dramumine ( I like the chewable non Drowsy)  You can start on a diuretic too.  I would suggest a natural one for now and you can switch it up after your appointment.  Horsetail or Dandelion work real well .. which ever you can get.  Whole Foods or GNC should have them.  Another thing to try is Pine Bark it has really helped me.  So sorry!  This should get you stable before your appointment. You can go from there after you see your doctor.  REST!

    • terri-ann28375
      terri-ann28375 angela84522

      Posted

      Hi, sorry I'm in UK. I already have a low salt, caffeine free and low sugar, alcohol free diet. I don't like getting natural products as they can interfere with my prescribed medication, although I wish I could.

  • JMJ
    JMJ terri-ann28375

    Posted

    Dear Terri-Ann,

    You're right....unless you've been there, no one realizes how long 3 weeks can feel.  It is beyond depressing. 

    What are your attacks like?  Do you have meds for vertigo, nausea, and anxiety?  

    There are at least a few people on the forum who have been helped by staring into a mirror  during an episode of vertigo.  Somehow it "tells your eyes and brain the truth" — that the room really isn't turning around you.  Perhaps it would be worth a try.  I' so sorry.  wish I had more answers.  I know how miserable you must be.

    Take care,

    J=

    • terri-ann28375
      terri-ann28375 JMJ

      Posted

      Hi, 

      I get this really awful feeling that everything is upside down, luckily that only lasts for about 5 minutes, but then I get the room spinning and when I lie down the boat rocking sensation which can last for anywhere between 2 to 4 hours and I get really strong nausea like I'm just about to be sick. I am also really disorientated with it and very tired.

      I have Prochlorperazine to take when an attack comes on, I also take Cinnarizine 30mg 3 x day and Betahistine 16mg 3 x day as prophylaxis. I got given some exercises by the hospital to do 3 x day, nothing is working.  I also take Sertraline 200mg and Quetiapine 100mg am, 200mg pm as an antidepressant and antipsychotic as I do suffer from quite severe depression anyway.

    • JMJ
      JMJ terri-ann28375

      Posted

      It sounds terrible.  I hope you're just allowing yourself to rest and sleep a lot. 

      You said that you've had MD for 10 years.  So, it sounds like your disease is progressing.  Have you noticed any changes in your hearing?  I know that there have been a lot of posts about Betahistine and how it's frequently underprescribed.  Do you have a GP you could call, and possibly get the Betahistine dose bumped up? 

      Most important thing is to keep yourself safe.  Typically, those exercises aren't meant to be done while you're in an acute crisis.  They are supposed to improve your quality of life and make you less sensitive to an attack.  But it sounds like you're too sick to be struggling with exercises right now.  Try not to put more stress on yourself than you absolutely have to. 

      This is such a rough time for you.  

      J-

       

    • terri-ann28375
      terri-ann28375 JMJ

      Posted

      I was going to ring my G.P. in the morning and see what they suggest. My hearing is low in the ear I have the MD in, I had a hearing test done at my last ENT appointment. The trouble is it's also bad in my other ear and I have to wear a hearing aid in it.  The specialist I spoke to at the hospital doesn't want the Betahistine increased anymore as she said I was on the maximum dose.

      So, all I can do is see what happens when I speak to my G.P.

    • JMJ
      JMJ terri-ann28375

      Posted

      I'm happy that you'll at least be able to see your GP!  S/he might be able to prescribe something that will get you through the next 3 weeks.  Make sure you write own all of your concerns and take them with you:  With that kind of fatigue, it's so easy to forget!  And she's got to know how desperate you are. 

      RE: your being on the max dose of Betahistine:  I think that's the recommended dose that a non-specialist might prescribe.  At least one  of our members has been prescribed quite a bit more, and has found complete relief with the increase.  I've clipped this quote from one his posts:

      [I was started on the same dose of betahistine as you (the max recommended in the British National Formulary!!) and had 2 or 3 bad attacks before things calmed down. When I got to the consultant, once the diagnosis was confirmed, my dose was tripled to 48mg tds and stayed on that until 6 months had passed without an attack. I then weaned off gradually and had a total of 21 months remission. Currently following a threatened relapse I am taking 64mg tds and hoping to come off it again in a couple of months.]

      So there's something hopeful!  And you might also be a great candidate for intratympanic steroid injections.  You just won't know till you get to that ENT consult.  I hope that in the meantime, your GP can give you something that will lessen the misery.  Please keep us updated.

      Wishing you relief, soon!

      J-

  • jackie72283
    jackie72283 terri-ann28375

    Posted

    The solution for me was to go to a physio therapist. I missed the first one due to an attack, and just managed to get to the second one, although I should not have been driving, and have not had an attack since that first visit 9 months ago.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.