Tortecollis /msa

[joe45]

I. Have both has anyone had relief from a stiff neck from meds and which ones helped I've been had Botox , baclofen, clonzapam,, diazepam nothing helped the stiffness , my head is forward and to the side?? Desperate help

[Ginger1]

Botox injections in my neck every 3 months works for me. Otherwise head twists to left. Like a robot! Have had 2 neck braces but no gud! I take Gabapentin. Have been having/taking for about 8 years. I still shake & my neck is painful at times but my cerebellar ataxia causes constant pain anyway. Tough cookie lol!

I understand gabapentin & clonazepam can help torticollis pain but as clonazepam is or can be addictive (according to neurologist) I decided not to take it.

I took clonazepam many years ago for depression but weaned off it.

I hope this helps.

Take care x

[Sere51789 in reply to Ginger1]

Well glad to hear that....my relative does a lot of stretches and yoga but their head tilts to the right (i think) ..It has been a cause of anxiety especially in social or work situations and they have a tremor when turning the head or looking at someone straight on.

Have you heard of TMJ or an oral mandibular device that is supposed to stabilise the TMJ joint and make things better? As I can't talk to their neurologist directly to ask about it and they don't have an appointment until 3/4 months time.

[joe45]

Hi ginger1, that clonazepam just makes you feel sleepy and out of it and dizapam do u get any side effects with gabapentin and has reduced the stifness?

[Ginger1 in reply to joe45]

Hi joe45

Like you say clonazepam makes you drowsy as it's an antidepressant. Couldn't take gabapentin at 1st as it made me sickly. I was going through a bad time at work so it may have been a combination of both! Was given other meds (can't remember which as it was such a long time ago). Anyway I started taking gabapentin again after a few months as i had been finished from work by then and voila, no ill effects. I have been taking it now for about 9 years & it suits me. I realise that it isn't suitable for everyone tho.

[Ginger1 in reply to Ginger1]

Hi again joe45

Sorry didn't answer other question. it seems to help me with stiffness/soreness as, I believe, it's a pain management med also. I also do a lot of exercise too so maybe it's the two. I eat turmeric too. Brill for cramp.

[Sere51789]

My relative had botox but other than problem swallowing and numbness and more stiffness I don't think it helped them. I think they generally do a lot of exercise yoga and neck stretches and rolling shoulders back . It seems they've just google videos on you tube to find what helps.

But generally keep up the stretching and massages ...i guess if you can tolerate the side effects meds are ok

[Poppyboo]

Hi I took clonazeman a couple of years ago and only managed to stay on it for a month and that was with a great deal of effort to try to stick with it, I got pretty much every side effect possible, I could not eat more than breakfast when I took the first tablet, had horrific nightmares, my sense of smell was so heightened that the smell of food/candles etc would make me physically sick and a host of other problems, as I said I stuck to it for a month to see if it helped at all and the side effects were just too much, also even after stopping taking it, it was a full 3 months before I felt myself again, I have also had kepra with unpleasant side effects, the only one that actually feels that it gives some relief from symptoms is an old fashioned drug called benzhexol, it does sometime cause a feeling of being a bit spaced out and tired but not so bad that I would want to come of it and try something else again.

[Ginger1]

Hi all

Sere51789 - yes I have heard of Tmj. Do lots of research. I also do lots of exercise & stretching. Roll head too. Really good.

Everyone - i was really sick initially when I tried gabapentin so I was prescribed something else (can't remember what it was as it's such a long time ago). I tried gabapentin again when I was ill health retired (no stress). Been fine. No adverse effects.

It is prescribed for my cerebellar ataxia & torticollis. Touch wood Botox is working for my torticollis so far🤗

[Sere51789 in reply to Ginger1]

What is roll head?

Have u tries tmj?

[Ginger1 in reply to Sere51789]

Hi Sere51789

I do exercises to roll my head. Circular movements. Roll the head around both ways ie to the left & right. I

think this loosens muscles. Found exercise on you tube I think. Very good. I haven't tried tmj.

[joe45]

Your lucky it works for u ."". Thanku for reply ginger 1. And poppyboo I might' ask abt. Benzohexol...

Joanne👍

[Hidden]

Hi Joe45 I have cervical dystonia and I get botox injections every 3 months-they help to a degree but there can be drawbacks to them-I have had an overdose of botox and that was very frightening-difficult to hold my head up and difficulty with swallowing -it was worse than having the dystonia. However, all said, I am still having the botox, but I am receiving a much lower dose now-I would rather the neck still twisted than not being able to swallow. On occasions I have had physiotherapy-it's hard to get and must be by a properly trained physio who knows about dystonia or you can make the dystonia worse-please ask your doctor. Also I've heard magnesium supplements can help and try heat packs to ease pain and ice packs for some spasms.

Hope this helps and know you are not alone.

[joe45 in reply to Hidden]

Hi

[joe45 in reply to Hidden]

Hi I’ve got ice packs and heat packs can you take that magnesium supplement s with Parkinson’s meds do you know

[joe45]

Hi I have botox every threes months It only takes the pain away not the stiiffness I have to go up London queen s square . I don’t go out anymore cause of it,,, I feel too self conscious and embarrassed!! Thanks for your reply ....

[Citygirl62]

I took me over a year to get any results from Botox but the Botox has made it possible for me to do the physiotherapy. There isn't much physio help in the US so I am planning on going to Toronto to see Dr. Farias fariastechnique.com There is a doctor in France that is doing great work as well it's PIerre something Has any

[AlecB625 in reply to Citygirl62]

Hi there, did you manage to see Dr Farias in Toronto or the french doctor? thank you.

[Citygirl62 in reply to AlecB625]

No I havent. I have two friends who went but they didnt get much relief. They both admit that they were too busy/lazy to keep up with the regiment. Dr Farias has an online program now however I have my own regiment that I am getting relief from. Like all physio you have to do it consistently. Its like brushing your teeth

[AlecB625 in reply to Citygirl62]

Interesting... what is your regiment? Neck exercises or something else?

[Citygirl62 in reply to AlecB625]

Checkout youtube Feldenkrais for shoulders neck tmj jaw back etc also dancingie ballet and yoga meditation etc

[joe45]

God that is such a long wait!😯😦 where do you get dystonia ??