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It’s taking over my life

Posted , 10 users are following.

june52650
june52650

My symptoms have been awful for over a year now. I was finally diagnosed with Ménière’s in January this year but have had it since 2011, with five years in remission until last year. I take Betahistine and Cinnarazine three times a day plus Buccastem for attacks.

My problem is that I’m getting to the point where I hardly dare go out alone. So far I’ve cancelled a concert I was going to and I was supposed to be going to my daughters next week but I’ve cancelled that too. We’ve got a holiday in New York booked for the end of October and are seriously thinking of cancelling that because I’m scared of what might happen if I have an attack on the plane or in the city. I’m annoyed with myself but equally don’t know if I can risk going.

0 likes, 24 replies

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  • john02577
    john02577 june52650

    Posted

    Hi June I too have had this horrible disease for 35 years now I have lost my driving licence due to menieres and my life the occasional reprieve does not help my confidence it just adds to the anxiety I have requested and am awaiting my Gentamycin injection in the inner ear to destroy the hairs in the ear that senses movement by the liquid in the ear I have been told this may stop the vertigo attacks and nausea if you have friends and family to go out with then do so they will understand regards Johno
  • tanney
    tanney june52650

    Posted

    Hi june.....the psychological side effects from MD are something all of us have to deal with.  Anticipatory anxiety, social anxiety, panic attacks and social avoidance are all too common for us.  I've found that attacking the disease on several fronts is very helpful.  First of all we need to control the episodes of vertigo to make them less frequent and less severe.  At the same time we need to "cure" the anxiety around the vertigo episodes. 

    several questions regarding what you are doing to manage the vertigo:

    1.  what dose of betahistine are you taking?

    2.  are you taking a diuretic (water pill)?  what dose?

    3.  have you eliminated salt?

    What you are doing to manage the anticipatory anxiety that keeps you from doing the things you want:

    1.  are you being treated by a psychiatrist for your anxiety?  If not, you should be.  They can prescribe anti anxiety meds and help you cope with the stresses of MD.

    2.  Are you taking any anti-anxiety meds?  The Cinnarazine and Buccastem that you take are usually prescribed for nausea and vomiting.  You also need something that will reduce your anxiety and stress....such as Ativan.

    3.  Also, it's very important that you break the cycle of anticipatory anxiety by forcing yourself to do some of the small things you have been avoiding.  Take an Ativan about an hour beforehand and then just force yourself to venture out and do the thing you fear.  Take someone with you to give you support and help if needed.  Do these small things everyday and slowly build up to more challenging ones.  

    4.  Unfortunately if you choose to do nothing, your fears will worsen and it will be more difficult later to overcome them.  

    • june52650
      june52650 tanney

      Posted

      Exactly! This is why I’m so annoyed with myself because you just end up doing nothing on the off chance that an attack happens.

      I’m on 16mgs of Betahistine x3. I tried a diuretic but I ended up having the worst attacks ever and was taken off them. 

      I don’t take anything for anxiety and haven’t seen anyone about my anxiety. Here in the UK it is often impossible to get a doctors appointment at all and you have to wait months to see an ENT consultant. 

    • tanney
      tanney june52650

      Posted

      taking 16mg of betahistine 3x/day is the recommended dose.  Since, however, you are still having vertigo episodes you might want to consider increasing to 4x/day (64mg/day total).  And if that does not eliminate the vertigo you might need even a higher dose.  But please discuss this with your doctor so they know and approve what you are doing.  The bottom line is that it's important that you find the right combination of drugs/meds that control the vertigo because once it is controlled you will have a much easier time resolving your anticipatory anxiety problem.  

      Gentamycin is certainly an option for you to consider once you determine that betahistine even in high dosage does not eliminate your vertigo.  Gentamycin injections almost certainly will accomplish that but it has potential side effects that you will need to weigh carefully.

      Best of luck to you, June.

  • cathy63119
    cathy63119 june52650

    Posted

    Tammy is so correct. And I know how you feel, this is,a horrible disease. I did the gentamiacin shots in my left ear. It was,a painful process, but I do believe it helped the vertigo episodes to be not as frequent. The anxiety is horrible, but try to get it under control with meds. Very difficult to do on ones own.
  • jacqueline96354
    jacqueline96354 june52650

    Posted

    I know how you feel I have canceled many things. I am scared to drive to the grocery store.  I don’t know what to say but your not alone.  I would not get on a plane that seems like a death sentence.  I’m sorry I can’t offer more support but I think it just depends on how you feel at the time and maybe take something to relax you before you go if you decide. I know it’s difficult because you don’t think others who don’t have this desires understand it but try to remember it will eventually pass hopefully enough for you to get your bearings.   I’m sorry I do understand how you feel and hope that all goes well
    • june52650
      june52650 jacqueline96354

      Posted

      I don’t drive at all anymore because I don’t get any warning of an attack. 

      I think I’m going to try to see a counsellor to help with the anxiety and I will try to see my doctor about medication.

    • christine_35821
      christine_35821 june52650

      Posted

      In order to get my attacks under control my neurotologist increased the betahistine dose to 24 x 3 per day. I am currently symptom free and after my next review may start to reduce the dosage back to 16 x 3. Maybe you could try this. Nothing to lose and betahistine is free of side effects for most people. I understand how you feel though. I will never forget the embarrassing times I lurched out of the office to throw up. 
    • june52650
      june52650 christine_35821

      Posted

      I asked my doctor if I could increase the dose if I was having a lot of attacks but he said no. When I first started with md my ent doctor had me on 32x3, but the ent doctor I saw in January didn’t think I should take any medication unless I was having an attack. I don’t agree with that!
    • tanney
      tanney june52650

      Posted

      let me get this right....your first ENT put you on 96mg/day and you were doing fine....correct?  Then you saw a different ENT when your symptoms returned several years later and the second ENT told you only to take betahistine when you were having an episode of vertigo???  And you currently are in misery because of the vertigo???  Wow!  I think you should dump the second ENT....he most likely is not a neurotologist but rather a regular, generic ENT doctor who apparently does not fully understand our illness.  Since you already have a prescription for 32mg 3x/day why not just restart that now?
    • june52650
      june52650 tanney

      Posted

      I can’t do that, the prescription for 32x3 was one that I had about 7 years ago. When I went into remission I stopped taking all medication for five years, so when my symptoms started again last year I had to start again completely. It took me 9 months to get an ent appointment and the good thing was that I was finally given a definite diagnosis of md, but the bad thing was that the doctor I saw doesn’t believe you should take medication except during an attack. I’m now waiting for a follow up appointment. I doubt that it will be the same doctor though, I’ve never seen the same ent doctor twice.
    • tanney
      tanney june52650

      Posted

      Sure hope you get a good one next time.  And if the next ENT does give you 32/3x/day please continue taking it even through your remission.  Eliminating the betahistine completely will usually result in the vertigo returning....as you have experienced

      In the meantime I'm glad to read that you are considering seeing a therapist for your anxiety.  My best wishes that you get a good one here too.

    • christine_35821
      christine_35821 june52650

      Posted

      GPs can only prescribe 16mg max. I researched and found a neurotologist who has a clinic specialising in hearing balance and vestibular disorders and paid privately for a consultation. This was at a private hospital in Cambridge. My gp then referred me for my follow up appointment on nhs to the same clinic at Addenbrooks. They understand Meniere’s as much as anyone and can prescribe higher doses of betahistine. I’m under their care now which is very reassuring. 
  • sarah30526
    sarah30526 june52650

    Posted

    How long did your first vertigo episode last and the ones following?
    • june52650
      june52650 sarah30526

      Posted

      My attacks usually last about 2-3 hours, but I also have ones that only last a minute or two. I found that if I walk about the short ones just stop. 

      I had an attack this week that was really severe though and it made me feel like I was hanging upside down and spinning.

    • sarah30526
      sarah30526 june52650

      Posted

      That’s really interesting that they can also last for a minute or two. I had a vertigo attack after waking up last year that lasted like 10 seconds and I’ve had another one three months ago that lasted around 5 seconds. I’ve been told it’s bppv without any tests done but I’m scared it could be menieres disease because this time around I’ve had lingering balance issues and ear fullness. From your experience do you think it’s possible for someone to have MD if their attacks only lasted a few seconds? Thank you and I hope you get better soon and find a brilliant doctor that can truly help you!  
    • tanney
      tanney sarah30526

      Posted

      Sarah, you can have both BPPV and Meniere's Disease.  The very short episodes does sound like BPPV.  MD episodes last at least 20 minutes.  The BPPV is rather easy to diagnose and fix by a vestibular physical therapist

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