Rambling thoughts

Ears, nose and throat
1

I was first diagnosed with MD back in 1980. I experienced all the symptoms of full-blown MD including severe vertigo drop attacks, nausea, vomiting and diarrhoea. I was almost totally housebound for 4 years. Eventually, after exhausting the NHS and trying various drugs (Stemetil, Stugaron and Betahistine) plus faith healing, acupuncture and various herbal remedies and diets, I ended up in Harley Street and was offered an operation to cut the audio nerve going to my bad ear, which I agreed to have done.

Following a period of recover and getting used to only having one balance mechanism in my good ear I eventually got my life back and everything was great for over 30 years. Unfortunately a couple of years ago I was diagnosed with MD in my good ear and although it’s been quite delibetating at times I’m pleased to say that I haven’t experienced anywhere near the horrendous symptoms i used to back in the 80’s. I haven’t had any severe vertigo attacks or drop attacks and nothing bad enough to cause vomiting etc.

There are a few other differences this time round that got me to thinking do I actually have MD or is it perhaps BPPV?

I don’t get tinnitus I haven’t actually experienced any dramatic loss of hearing in my remaining ear, though having said that my hearing is degenerated anyway over the years and at 69 and I’m now having to wear hearing aids so that’s a difficult one to call. I don’t really get any indication that an attack is about to happen and I haven’t actually had what I would call an MD attack during the day, it always appears to happen first thing in the morning when I try to get out of bed that’s when the dizziness/vertigo occurs. Sometimes I’ve also noticed if I turn on to my left side which is my good ear I will start feeling dizzy if I turn onto my right side it calms down.

I am currently on 16 mg of Betahistine three times a day and have at times stopped taking completely when I thought everything had called down and have actually gone for a few months without any medication or problems, but for the past 6 months I’ve been taking the medication regularly. I always have what I describe as a residue of symptoms that make me feel that i can’t be bothered to do anything. I constantly feel I can’t stand in the same position for any length of time and I have to hold onto something. Is that a psychological issue or am I really going to topple over? Sometimes I get a feeling of pressure in my head almost as if I’m wearing a hat that’s a size too small and other times my hearing sounds as if it’s slightly muffled, like when you have a heavy head cold. But all those symptoms are only slight but I think it’s the constant awareness of them that brings me down plus my thoughts are constantly going back to when I was really, really bad.

Anyway, sorry for my ramblings. I know you’re all suffering in your own way and much worse than me. This morning has been one of those days where I couldn’t get out of bed for a few hours because of the dizziness, but a couple of pills and a few extra hours sleep seems to do the trick but then again it may have worn off anyway without doing anything… something I will never know really. It certainly makes me feel fragile for the rest of the day though. So as I sit here getting over what I would call a ‘minor attack’ I thought I’d put my thoughts down on paper and post them here.

Wish you all well and relief from this awful complaint.

Best wishes

Dave

2

If the problem is MD your best strategy is a higher dose of Betahistine. I am 10 years older than you and currently taking 64mg tds which completely suppresses the symptoms. It is a long term treatment - takes up to a month to become fully effective and you should only wean off it gradually once free of attacks for 5 to 6 months. You will need a sympathetic ENT or Aural physiologist consultant to recommend this to your GP as the BNF max dose is what you are already taking. My consultant reckons that dose is little better than a placebo!!

I also have a touch of BPPV and manage that with the Epley manouevre. There are several excellent videos on YouTube if you want to try it your self or you could get your GP to show you how. If it works it is pretty good confirmation that you have BPPV. So far when I have used it it fixes the problem for a year or more.

Hope this helps.

3

Hi Dave. Thanks for all of the information. May I suggest that you consider doing the following:

  1. see your ENT and have a hearing test in your “good” ear to diagnose if you do have MD in that ear. Your description, though, sounds like Positional Vertigo. As such…
  2. you should see a vestibular physical therapist to be tested for postional vertigo to confirm or rule out that possibility. If you do have PV the therapist at that session will correct it. Also you should:
  3. begin vestibular physical therapy sessions to help you recover your balance and reduce the wobbly feeling you describe. VPT is usually 6-8 weeks in duration with three sessions/week. It’s very benign and extremely effective.
  4. Consider increasing betahistine to 16mg four times/day (64mg total) and see if that helps with the MD symptoms. May I also suggest that you stay on the betahistine indefinitely rather than only when you feel dizzy. It’s most effective as a maintenance drug.
  5. Use 0.5mg Ativan (Lorazapan) during those times when you feel “weird” and unbalanced.

I have bilateral MD and have gone through the above steps and my symptoms are managed very well. Good luck

4

Thank you for your reply NeddyO. I will certainly try to see another ENT specialist. My last request to my GP to increase the Betahistine was flatly denied. I will also look up those BPPV videos but I’m so scared of triggering another dizzy spell that I tend to steer well clear of such head movements.

Best wishes

5

Thank you for your reply Tanney.

I will certainly ask for an ENT referral and have already sourced a VBT. In the meantime I plan to try the increasing my Betahistine to 4 times daily