Struggling with new diagnosis

Hi Jo this is how I felt at the beginning. But after doing research I came across a web site saying take these certain vitamins and minerals and they seem to be making the world of difference. They are high does muti vitamins and minerals, high vitamin c, grape seed, calcium and ginkgo. Also it is important not to let yourself get too tired, try taking a nap during the day and a good ten hours at least at night. I hope this helps you x

Joel,

I am someone who has sufferred from the symptoms of Meniere's for most of my life (i am 22 and ear problems and dizziness were noticed when i was 2) and it is perfectly possible to live with meniere's.

Tinnitus is most notable when you're not doing much of anything (i hear it a lot when i am trying to sleep) but can be drowned out.

The dizziness is something you need to be aware of especially when outside so make sure you have something to support you when the attack happens. Fullness of the ear and ear pain happens sporadically, much like the vertigo attacks, but as long as you keep away from loud sources it is manageable.

Having lived with meniere's for a long time it's "normal" for me to have these symptoms and I don't really know what it's like to live without them. My biggest advice is much easier said than done; avoid stress.

Medicine is available for ear pain, fullness and vertigo to mitigate the effects. I am on low dosage of amitryptaline for the pain and cinnarizine for the vertigo though when i am stressed they don't help much.

There is currently no known medical treatment for meniere's and it doesn't go away on it's own, but you won't be experiencing distracting ear fullness, vertigo and tinnitus 100% of the time.

Hi Joel,

I am on cinnarizine and it seems to have made a big difference to me from day one of taking it.  The week before I was having big attacks every other day minimum (puking, unable to move, the lot) and then my GP put me on the cinnarizine and wham, massive improvement.  Can't be coincidence.  Ask if you can take it.

Fil

I was diagnosed in 2001 with MD. My world came to an abrupt end. My dad had it from the age of 26 right up until his death in 2009. (I'd had symptoms since 1999 aged 38,

Luckily I went to the best specialist in the country, the late, great Jim Cook at the Leicester Balance Clinic (NHS, not private) and saw the wonderful team there who cover all aspects of any vestibular illness. (thanks all)

Jim Cook was honest enough to say that there wasn't a cure - there still isn't (I'm doing my own research now and there are lots of people doing research out there along with clinical trials etc)

BUT

There are things that can make a difference. I found that my attacks "seemed" to be worse if I ate salty food - but it could be coincidence.. With MD you try to search for anything that will make it better and can convince yourself that  - "Oh, that works, I'll do it again" but in reality, your MD was just fluctuating any way.

I sobbed while writing my letter of resignation to my employer, I'd been on the sick for a year with attacks 3 to 4 times a week. That was a low point, very low.

My advice, (and this was the best thing I've ever done!) is to join the Meniere's Society.

They have leaflets of treatments and advice and are at the end of a phone if you feel suicidal - which I did at first.

They produce a newsletter - "Spin" - appropriate name !, I think there are 3 -4 a year sent out to us.

My life has completely changed.

My Meniere's is completely different to my partners (who I met through the MD Society) and you will find we all vary.

My dad's MD was different to mine and my partner's dad had it totally different too. The 3 main symptoms of vertigo, deafness and Tinnitus are in classic MD, but the severity of "attacks" can be so different in different people.

A friend thought her MD had gone as she hadn't had an attack for a year, but back it came after another 6 months. My dad's followed a similar pattern. His "breaks" were for 3 to 5 years at a time after having about a year of attacks in a cluster.

Yes my life has changed as I cannot do the job I used to. Surgery (it was experimental and did what it was supposed to do) killed off the inner ear, but left me with other problems to cope with AND to add insult to injury I now have MD in my other ear, like my partner has.

New treatments include Steroid or Gentamicin injections into the ear - but these come with possible side effects and don't seem to be a permanent cure.

I had Gentamicin by operation - a pump was fitted into my left ear, I wore a box around my neck with the Gentamicin in and it pumped it slowly into my middle ear onto the membrane to kill off the hairs inside the inner ear. It worked, no more vertigo, BUT I'm completely deaf in that ear now. I didn't know I'd get MD in the other ear!

But it did what I wanted it to do -

It's the violent vertigo that stopped me from leaving the house - after many near misses of hugging the pavement for hours, people thinking that you are drunk and walking around you, 

One thing I have "cured" is my tinnitus (in the scheme of things it affected me the least (it didn't stop me doing things, it can't hurt me - my vertigo can, I sometimes crash to the floor with spins that come on with no warning, and my "drop attacks are the same)

I went to a British Tinnitus Association day and a psychologist talked about how our brains worked and I realised that I'd been doing the right thing for the past 6 months to retrain my brain not to listen to the constant raging noise in my head.

My mum and dad are no longer here, but it helped to have people around me who understood this horrid disease. Many people don't. (or don't want to)

There will be times when you feel low, that's normal. When you can do things that make YOU feel good - a treat, whatever, do it and. . . .

You can get through it. 

I now belong to a textile art group (we are exhibiting our work at two venues this year) and I paint and draw MD permitting. (I've lost count of how many things I've had to cancel)

Life is quite good,  I met my partner and soulmate through having MD.

I've been through hell, not just with MD, but it could be a lot worse (my dad died from cancer and my mum was bed-ridden for the last 9 years of her life with leukaemia and dementia)

Take care, be good to you

xXx