New: so hello, and a question
Posted , 5 users are following.
Hello, what a relief to find some real experiences from people.
Just wanted to ask, how many in the group are based in the UK?
Why do I think it would be useful to know? With a provisional diagnosis I am casting around all over the place for "answers", pointers for treatments...you will all know what the first hideous stage of realizing you are likely to be stuck with this vile disease.... and although some of the treatments make interesting reading, they are not what you are likely to get or be offered by at an NHS ENT department in the UK.
Would it be a useful thing do you think to include some detail about where your treatment is coming from, private, NHS, herbalist and so on each time you/we post....or would that compromise security? Not sure.
Anyway, hope you all don't think it's a cheek suggesting that in a first post
0 likes, 9 replies
Lizzie1453 rich
Posted
No seems ok as sometimes people post suggesting a particular drug & you realise they are in the U.S. & the drug has a different name or our ENT suggest different things eg., a diuretic has never been suggested to me.
Lizzie1453 rich
Posted
Central Scotland by the way & NHS treatment.
rich Lizzie1453
Posted
Great. I will try and put a location in each post. It might also show up which areas of the country are better at certain things: round here ( England, South West ) it was really disappointing to find so few support groups active. It seemed to me that Menieres is such a variable thing, what works for one doesn't work for another, the experiences of people with the darn thing seemed the best way forwards. I could try and start a Group i suppose, but I feel I'm on the nursery slopes as far as useful knowedge or experience to pass on goes anway right now.
mistibluey rich
Posted
Hi Rich
First of all I'm sorry that you might have MD; it's a horrible under recognised disease but most people do seem to improve with various treatments and changes to lifestyle.
If you do a search for Meniere's Society UK you will find their website and there is quite a lot of information there, though I find it's not a well laid out site.
They give an email address and a phone number if you want to to contact them to talk about it all. Under "essential information" there is a "treatment and mangagement" section which lists the main medications that are used in this country.
If you don't find the right section I could private message you.
While you are waiting to see someone, most people seem to find a low sodium diet helpful and you can buy some of the meds, such as buccastem over the counter.
I think that most of the treatments that are prescribed in the US are available here, but often under other names. Betahistine is not usually prescribed in American as it's not approved by the FDA, but it's widely used here.
Those who find that conservative measures don't help them much might be offered steroid injections, which are available in Britain. A lot of people have had great success with that. If that doesn't help gentamicin injections are also used here, but there can be drawbacks with that.
Good luck with arming yourself with information and hope your health improves.
rich mistibluey
Posted
Thanks so much for that. I got onto the Meniere's Society UK straight away.
It is such a slow process getting a diagnosis: I know it is a clinical thing largely so you almost have had to build up a history before the professionals know what they are working with, but even so.... what has been happening with me is that while I wait, I tend not to try too much besides diet ( alcohol, caffeine are out, always been on a low salt diet but I probably could cut it even lower) and trying to get lots of rest and being calm ( ha ) in case anything I try actually makes it all worse.
peter16657 rich
Posted
rich peter16657
Posted
Cheers. I can't imagine 10 years. I am slowly "adapting" to the idea of having this and still get the major panics regularly. The tinnitus element most of all. I understand it is the hardest to control or shift. Just had one "panic" this week, hardly a wink of sleep. And they say stress is bad for it!
NeddyO rich
Posted
With provisional diagnosis has your GP started you on Betahistine - if not ask for it. It will not compromise the diagnostic investigations but it could save you from significant hearing damage and tinnitus as well as beginning to reduce the severe symptoms. It takes a month to become fully effective and if diagnosis is confirmed you may need a high dose.
I started with a private ENT consultation because of waiting times but he then referred me to a NHS Aural physiologist consultant who is excellent.
You will need hearing test and MRI scan to exclude other causes - I opted for those privately to get clarity asap.
With hindsight the single most important action was by the ENT consultant starting me on betahistine which I am certain saved me from more hearing damage.
Good luck
emma90918 rich
Posted
I'm in the UK Rich.