DBS - deep brain stimulation for Dystonia

[Toto88]

Has anyone on here experienced or has DBS plz - I know mainly it’s for Parkinson’s but they do it for Dystonia too & wondered if anyone had the procedure or had any advice plz - I’m yet to have Botox so any advice on that would be most helpful too - or herbal remedies ? Maybe cannabis oil !

[skymax]

Hi Toto88. People seem to have mixed responses to many of thetreatments. I have Cervical Dystonia since 20i2, and I havent had DBS, but I have had various medications in the early days (Baclofen, Diazepam, Clonazepam and Pregabalin) I've also been having regular Botox injections with variable results. DBS seems to be regarded as a last resort for dystonia. I think for some Parkinson's and Essential Tremor patients, the results are quite good (and almost immediate) but from what I've read DBS for dystonia has more variable results., and it can take several months to get the best settings on the stimulator. At the moment I've been referred for a test to see if I am resistant to Botox and am waiting for an appointment, but I am interested in pursuing DBS treatment.

[Toto88 in reply to skymax]

I have terrible head neuralgia pain with my dystonia -not sure because my neck is so stiff or because the antipsychotic med that I’m still trying to get off has damaged my head ! I get tinnitus - ear pain & hypercusis aswell so I’m in a lot of distress ! I keep wondering whether to try Baclofen & retry gabapentin for the head pain ! It’s just so difficult because what with the lock down I will prob be waiting about 6 months before I can even try it ! My head neuralgia is so bad that I find it difficult even to lay my head on a pillow ! So was the Baclofen better than the clonazepam would you say plz ? I know Pregabalin is the baby sister of gabapentin but a lot of people have had bad experiences with it which is why I might again try gabapentin! I find cold wind makes my symptoms worse aswell - I don’t know if my ear problem is a separate issue but I will have to see ENT I think because I cannot live with it anymore ! I recently went onto the Dystonia uk site & cant believe they ask to subscribe - I’m actually quite appalled !

[skymax in reply to Toto88]

None of the medication I was prescribed helped the dystonia symptoms but I had no side effects other than feeling a bit drowsy, slightly drunk (from clonazepam, I think.) This was in the early days 2012/2013. I currently take Trihexyphenidyl. It seems t help a little but gives me a dry mouth. I haven't been on the dystonia website for a while, but there was quite a bit of information available free on there.

[Toto88 in reply to skymax]

So you had no pain relief from the pregablin ? Do u suffer with the head neuralgia or is that just me ? I presumed because my neck is stiff then the muscles at the back of my head & on top are in constant spasm & that’s why I have this terrible daily chronic burning pain ! I even had an occipital nerve block & it did nothing at all ! I have some of the trihexephenidyl but at a low dose ? Think I tried for a week & gave up ! What mg are you on plz & has it really been that beneficial? They say it can be an antidote for the Seroquel ! By the way thank you very much for replying to me - I feel v alone in all of this & my days are v difficult to get through ! It’s a real blessing 🙏 to know that someone understands 🙂

[skymax in reply to Toto88]

It can be a very depressing and anxious time, and it's not easy to find out what's right for you. I can't recall what doeses I was on when I had the pregabalin, I was probably on it for a few weeks, but I don't recall it having any effect. When my condition started I did have some pain in my neck and shoulders, but that eased over time. Probably the botox helped with that. More recently, the botox seemes to be less effective, and the pains are a bit worse. The location and nature of the pain varies a bit, sometimes I feel it arround my collar bone or one shoulder, but sometimes it seems to be in muscles either side of my vertebrae from almost the top of my head to the bottom of my neck. I currently take a total of 12mg per day of Trihexyphenidyl. I've been on it for about 5 or 6 years. My dystonia is mainly cervical dystonia, although I do get some other jerks and tremors inmy limbs. My dystonia is classed as primary dystonia, I think. Am I right in thinking yours is a secondary dystonia brought on by medication for another condition? Have you seen a neurologist yet? Preferably one who specialises in movement disorders?