Newbie

[Lpan]

Hello everyone my name is Lawrence , I have cervical dystonia ,diagnosed a few weeks ago . DR put me on Carbamezapine 200 mg 4 times a day , seems to help a little , anybody else try that ?

[Muscari]

Hi Lawrence. I have generalised Dystonia and trigeminal neuralgia. I’m on carbamazepine as well but for the TN, not the dystonia. It makes the excruciating nerve pain caused by the TN more manageable.

Did your doctor say how the drug would help the dystonia? Is it for pain relief? It hasn’t made any difference to my dystonia symptoms but I’m lucky in that I don’t get too much pain with the spasms anyway.

Good luck with the treatment.

[Lpan in reply to Muscari]

When I went in to see him I was having very bad spasms on both sides of my neck , I missed three weeks of work , since then I have been on the meds for about three weeks and have been back to work with an occasional flare up , I hope it keeps working , doesn’t seem like anyone has had much luck with anything around here , thanks for the reply

[Muscari in reply to Lpan]

Dystonia is a difficult condition Lawrence and what works for one person may not work for another. At least the carbamazepine seems to help you, even if the benefit is only slight. I find Botox helps me. I only have it in my neck but it does give me 7 weeks when I can move my head and any improvement is something.

[Grvarley in reply to Muscari]

Did you develop dystonia after a change in medication regimen? Read my post if you have.

[Muscari in reply to Grvarley]

No Grvarley, my dystonia has nothing to do with medication. It started when I was a teenager, more than 10 years before I had to start taking carbamazepine.

[Hidden]

Hello Lawrence... welcome newbie.

[Lpan in reply to Hidden]

Hey there hippolove , thanks for the welcome , how are you doing , pretty cool that you love hippos

[Hidden in reply to Lpan]

Actual I have an Episode brewing other than that aok.yes I love water pigs lol

[BlanketTime1]

just wanted to say welcome!

[Lpan in reply to BlanketTime1]

Thank you

[Hidden]

I'm currently being treated for cd with botox injections every 3 months. It slows down the spasms but the pain never seems to go away. I also can't take pain meds as I have no tolerance for them & have bad side effects. Are you seeing a neuro who specializes in movement control ?

[Muscari in reply to Hidden]

Hi Sassyde. I have been seeing a neurologist specialising in movement disorders. I don’t see him now, since I refused his first suggestion of DBS and he referred me to the Botox clinic instead. I can’t tolerate meds either (the neurologist doesn’t think they’re very effective either). Sorry to hear you’re in constant pain, that must be tough to deal with.

[Hidden in reply to Muscari]

The neck muscles on my right are very enlarged by constant spasms. It took a long time to convince doctors something was really wrong. He told me I had benign essential tremors. I did finally convince him that he was wrong & sent me to an neurologist.

[Lpan in reply to Hidden]

I see a neurologist , i am not sure what he specializes in but he seems very in tune with dystonia , I have only been to him 2 times so far , he put me on carbamazepine , I get a lot of spasms and pain too but less with the meds , have you ever tried that med?

[Grvarley in reply to Hidden]

Hi Did you have the dystonia after any mediation changes. If so please read my post. I am trying to locate people that have developed it after taking requip or related medications.

[Grvarley]

Hi do you take requip or like medications. Please read my post if you do.