[frogga]

Hiya

Well I am now home!! (well..have been home for just over a week..)

Anyway - does anyone have experience of losing their sense of taste with RSD? I know that I have orimandible dystonia etc as well (and normal dystonia!) but I don't see how that could effect taste - eg Rose wine - now tastes like metal, tequila - tastes of metal, coffee - tastes of lemon, white wine - cat litter, bread - sawdust, the same happens with everything.

Any advice? at this rate Christmas dinner is going to taste like a workshop!

(this isn't sudden - have had taste issues for ages.. just appears to be getting alot stranger....?!)

THanks!

Love

Rosie xxxxx

Hi Frogga,

I can't remember if you're on any anti-epilepsy meds, but the gabapentins are famous for affecting your sense of taste. I'm on neurontin and although it doesn't affect my taste buds too much, it gives your mouth a strong kind of sharp metallic flavour, I have to clean my teeth all the time.

But Topamax!! - everyone says it makes everything taste like ***** - specially sodas and sweet things. We had a record-breaking thread on the old forum - it ran to about 30 pages, maybe more, and it all began with the discovery that the newly-approved Topamax caused this!

I suspect many meds will cause some change, so you're certainly not alone with this particular problem.

Glad you're back home - how's the chair, and have you had any more thoughts on the DBS option?
all the best!

[jcherry]

I had some changes with my taste buds years ago when I was on Neurontin but I took myself off of it and actually felt a lot better as well.. I had great success with Topamax but it didn't affect my taste buds. Hey I kind of wish I had the problem you are having because I would want to eat all of the time..LOL

Seriously, I do hope it gets better for you because I would hate for your Christmas Dinner to be ruined.

Aside from your taste buds being out of whack, how is everything else going for you? Are your buddies from school keeping in touch while school is out for the Holidays? I do hope you have a sensational Holiday Rosie.

Great Big Hugs,
Janet

[HeatherAnne]

Hi Rosie..

That happened to me too a few years when I began to get too overmedicated.. When I wheened off medicine, my taste buds came back. I think we really linked it to Neurontin. But I can't remember. But it came right back after I stopped my medicine! So don't think your taste buds are lost forever

Heather

[frogga]

Heya

I'm not on any anti epileptics any more - I *just* take painkillers (ketamine, paracetemol, diclofenac, dihydrocodeine, muscle relaxants (triphenidryl, baclofen, diazipam) and anti emetics (domperidone).

I think its something I've had for ages but haven't realised particularly (at uni I eat my carers cooking and most things seem tasteless because we are normally a) eating on the run, b) eat the same thing for days at a time and c) they are liquidised because it's faster and simpler for me. So I haven't really noticed until now... getting home to mums cooking! lol. Unfortunatly the turkey did taste of metal.. but hey - last year the only thing I could have was gravy - so metal turkey is an improvement!

It's strange being at home - especially now granny has died and my sister Lotti is at her boyfriends. So there has only been mum, the animals, and I here. It's weird as I have got used to being in control with carers about when I get up etc etc and it's very hard not to boss mum around continually! Also we've moved house since I went to uni and have just discovered that I can't get into the bathroom in my wheelchair etc - so it's abit weird getting used to being carried in and out of the bathroom! Yep, my mates are on the phone/ MSN etc alot of the time and I was supposed to be going out with them tonight but can't manage it.

Wheelchair - major issues! don't know when my electric one is going to be finished being fixed and the funding for my new manual has apparently dissapeared grr.. so have spent Christmas in the most evil NHS wheelchair ever - so have to have mum around constantly to push me from place to place. Also my stupid pressure ulcer refuses to heal so have spent alot of this holiday lying down (though we do have a new chair, sort of like a Lazy Boy so have been able to be in the living room as well).

So Christmas this year has been quiet but good.. Hope you all had an awesome day!!!

Lots of Love

Rosie xxxxxxxxxxxxx

Hi Frogga,
I also have the baking soda-metal taste. Like you, I am not one any anti-epileptics meds.

About a year ago. I had some of my mercury fillings taken out, thinking it could be part of the problem.

I have had cultures because of this horrid SX. But nothing came up positive. But I could of been tested for the wrong thing. Maybe you could have a throat culture and possiably a culture as well on the back of your tongue.

What I eat is very healthy. I also drinks alot of juices. Until the root of this problem is solved. Hugs, Roz xxx