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Dystonia and ASD

Lena_C

Lena_C

Dystonic pianist
Hi, so I am wondering if anyone here was diagnosed dystonia like I do? If so, which area affecting you?
In other thread I have introduced myself (FYI, a pianist diagnosed with focal dystonia recently return to compose) and I also wrote my thought regarding Dystonia on my own website (it is dystonia awareness month now), you could find it here:
Message from our Director
Our charity here have contacted me for an interview in October so I want to gather some thought.


A very controversal topic, do you think dystonia could be psychogenic?
I know for musician, many of us developed this symptom due to practicing, however this is not my case.
All we know on this matter is still very little, this is why people have some sort of stereotype and if you are unlucky, they will avoid you like disease, even though you are trying hard to cope. Life is never fair afterall.

In other group, there is someone(also some essay) strongly disagree it is psychogenic, rather, anxiety could make it worse.
Interestingly, both my therapists think mental health play a huge role on my dystonia, as once I claimed"when I closed my eyes completely, that passage is perfect"
I want to know is it possible that people on the spectrum are differently wired, so dystonia also affect us differently.
Although I sincerely hope there is nobody here have dystonia as it is not something nice, but if you do, please share your thought to me that would be much appreciated.
You are also welcome to visit my channel, I am planning to do more arrangements and original works in a form which can calm people to sleep. I received a lot of positive opinion on the arrangement of Chopin's Zyczenie and original work "Lullaby".

P.S I am looking for some fellow classical players to connect with, using sound library to produce music is not something I want to do. I am also fairly isolated in daily life.
 
I have nocturnal paroxymal dystonia (NPD). I don't know how similar that is to your dystonia.
 
Jumpinbare said:
I have nocturnal paroxymal dystonia (NPD). I don't know how similar that is to your dystonia.
Click to expand...
Musician's dystonia is a task-oriented focal dystonia, I heard someone explained that the word "focal" actually means your dystonia focalised in a specific area because you pay more attention on it. How do your symptoms affecting you? The word "nocturnal", I guess it only affect you during night time. And do you find emotions is one of the key triggering the conditon?
 
Lena_C said:
How do your symptoms affecting you? The word "nocturnal", I guess it only affect you during night time. And do you find emotions is one of the key triggering the conditon?
Click to expand...
I am awakened from sleep with muscles pulled so tight it's painful. Once I am fully awake, the muscles relax
 
Lena_C said:
Hi, so I am wondering if anyone here was diagnosed dystonia like I do? If so, which area affecting you?
In other thread I have introduced myself (FYI, a pianist diagnosed with focal dystonia recently return to compose) and I also wrote my thought regarding Dystonia on my own website (it is dystonia awareness month now), you could find it here:
Message from our Director
Our charity here have contacted me for an interview in October so I want to gather some thought.


A very controversal topic, do you think dystonia could be psychogenic?
I know for musician, many of us developed this symptom due to practicing, however this is not my case.
All we know on this matter is still very little, this is why people have some sort of stereotype and if you are unlucky, they will avoid you like disease, even though you are trying hard to cope. Life is never fair afterall.

In other group, there is someone(also some essay) strongly disagree it is psychogenic, rather, anxiety could make it worse.
Interestingly, both my therapists think mental health play a huge role on my dystonia, as once I claimed"when I closed my eyes completely, that passage is perfect"
I want to know is it possible that people on the spectrum are differently wired, so dystonia also affect us differently.
Although I sincerely hope there is nobody here have dystonia as it is not something nice, but if you do, please share your thought to me that would be much appreciated.
You are also welcome to visit my channel, I am planning to do more arrangements and original works in a form which can calm people to sleep. I received a lot of positive opinion on the arrangement of Chopin's Zyczenie and original work "Lullaby".

P.S I am looking for some fellow classical players to connect with, using sound library to produce music is not something I want to do. I am also fairly isolated in daily life.
Click to expand...
Not all, a certain percentage,like all conditions diseases there's two categories familial(inherited) or sporadic (not inherited in this context)usually anxiety effects all illness conditions diseases BUT NOT all of the aforementioned are of the psyche
 
This is one of the conditions I started seeing a neurologist for. I have toe moving syndrome dystonia since I think 2021 my toes have been in constant motion. My GP won't prescribe the recommended medication as she has said that my health is too compromised. It started after I mixed some anti histamines and has never stopped. That could have just been nothing as well.
 
Rachie said:
This is one of the conditions I started seeing a neurologist for. I have toe moving syndrome dystonia since I think 2021 my toes have been in constant motion. My GP won't prescribe the recommended medication as she has said that my health is too compromised. It started after I mixed some anti histamines and has never stopped. That could have just been nothing as well.
Click to expand...
You need to see a movement disorder specialist, GP would not prescribe anything to you, rather they could refer you to a neurologist. My GP thought I have triggered finger at first and refer me to the neurologist and trauma-orthopaedist. While the orthopaedist find out I have laxity on the sagittal band, they are also the first one to confirm it is dystonia. (Interestingly, they know better than the neurologists) And I have seen a couple of neurologists but they are not trained for this matter. Only after they refer me to the movement disorder specialist I got my diagnosis immediately.
 
Lena_C said:
You need to see a movement disorder specialist, GP would not prescribe anything to you, rather they could refer you to a neurologist. My GP thought I have triggered finger at first and refer me to the neurologist and trauma-orthopaedist. While the orthopaedist find out I have laxity on the sagittal band, they are also the first one to confirm it is dystonia. (Interestingly, they know better than the neurologists) And I have seen a couple of neurologists but they are not trained for this matter. Only after they refer me to the movement disorder specialist I got my diagnosis immediately.
Click to expand...
Thank you, I do see a neurologist. I see one from Imperial hospital in London. They were the team who diagnosed me with toe movement syndrome. I am due to see them next week. They suggested some medication for my GP to prescribe and my GP refused so it will be interesting my next discussion with them when I haven't tried the medication they recommended. I hope I can be sent for a scan as I had some nodes and buldges but were not contracting but have developed issues with back spasms since. I don't know what damage it could have done going for 3 years.

I think may be autistics as well might be sensitive to dyskinesia from medication. I have got this twice a quivering lip and even in the past from psychiatric medication. My body is just too hypersensitive to it.
 
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Rachie said:
Thank you, I do see a neurologist. I see one from Imperial hospital in London. They were the team who diagnosed me with toe movement syndrome. I am due to see them next week. They suggested some medication for my GP to prescribe and my GP refused so it will be interesting my next discussion with them when I haven't tried the medication they recommended. I hope I can be sent for a scan as I had some nodes and buldges but were not contracting but have developed issues with back spasms since. I don't know what damage it could have done going for 3 years.

I think may be autistics as well might be sensitive to dyskinesia from medication. I have got this twice a quivering lip and even in the past from psychiatric medication. My body is just too hypersensitive to it.
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Sending my regards from Harrogate.
Do you find it getting more serious when you're under stressed?
 
Lena_C said:
Sending my regards from Harrogate.
Do you find it getting more serious when you're under stressed?
Click to expand...
I am not certain, perhaps. My dad loves using electrical stimulating massagers but they are much to much for my nerves and I find them so uncomfortable to use. My dad basically forced me on one when I wasn't feeling too bright to try and cure things. It didn't at all and just triggered another toe to start moving and it hasn't stopped.
I am surprised that the issue of dyskinesia doesn't come up more with autistics. At just 21 in inpatient they put me on class 1 it must have been Nortriptyline my goodness I had so many nervous reactions to it had to stop. My body has never liked it. More recently I was tried with Risperdone for repetitive thinking and my lips was quivering as well. The medication was stopped and I was started on Seroquel to have the same reaction again. Is there any atypical drugs that do not cause movement syndromes in some people. I thought perhaps Abilify as it is recommended for autism but that is of the cards as well. These are class 2 drugs that are not supposed to cause much movements as it bypasses the part of the brain which could affect it. My body though is just so sensitive.
I have uploaded a short of my situation with my toes which I filmed in 2021.
I have unlisted the video. It has been 3 years non stop pretty much and comes with its own symptom set as well.

 
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Rachie said:
I am not certain, perhaps. My dad loves using electrical stimulating massagers but they are much to much for my nerves and I find them so uncomfortable to use. My dad basically forced me on one when I wasn't feeling too bright to try and cure things. It didn't at all and just triggered another toe to start moving and it hasn't stopped.
I am surprised that the issue of dyskinesia doesn't come up more with autistics. At just 21 in inpatient they put me on class 1 it must have been Nortriptyline my goodness I had so many nervous reactions to it had to stop. My body has never liked it. More recently I was tried with Risperdone for repetitive thinking and my lips was quivering as well. The medication was stopped and I was started on Seroquel to have the same reaction again. Is there any atypical drugs that do not cause movement syndromes in some people. I thought perhaps Abilify as it is recommended for autism but that is of the cards as well. These are class 2 drugs that are not supposed to cause much movements as it bypasses the part of the brain which could affect it. My body though is just so sensitive.
I have uploaded a short of my situation with my toes which I filmed in 2021.
I have unlisted the video. It has been 3 years non stop pretty much and comes with its own symptom set as well.

Click to expand...
I hope you will get better eventually. We are not of the same type, but I am pretty sure there will be a cure.
 
Lena_C said:
Thank you. Not sure if you are a member of DystoniaUK, but if you do, keep an eye on their upcoming magazine. I got alot to say.
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Thank you so much Lena for posting the link to that website. I had never heard of it. I don't use the internet that much to google so really had no idea. I will take a look though and may register. Thumbs up to you. I will be definetly be looking out for the magazine. My appointment is on Monday! Just imagine if my toes decided to play still on the day lol after all of that and nothing to show. Hope it goes well.
 
We have to laugh. I was concerned my toes may freeze on the day and be sent away without seeing anything tomorrow. They are still moving so I filmed them just now, not since 2021. So there is nothing to show tomorrow. What? It is dated as well for today. Glad I did that.
 
Rachie said:
Thank you so much Lena for posting the link to that website. I had never heard of it. I don't use the internet that much to google so really had no idea. I will take a look though and may register. Thumbs up to you. I will be definetly be looking out for the magazine. My appointment is on Monday! Just imagine if my toes decided to play still on the day lol after all of that and nothing to show. Hope it goes well.
Click to expand...
Ohhh the link is my own website. I put my works and "speech" on there also YouTube.
DystoniaUK is the only official charity in the UK, I got their leaflet together with my neurologist's information pack.
Their website is here.
You need to sign up as a member (which only cost you £1 if you are qualified for concession) and told them if you would like the magazine by post or email, they issued twice a year.
I am not in London so sadly I got no local support group, but they have a handful down south, so you might be able to receive more support than I do.
When you decided to sign up, please could you let them know that you heard about them through Lena of Lenamusic&Co.?
It does seems they are interested to collaborate with me (for fundraising, obviously), though I am still at a start-up stage and have no idea how, by mentioning me to them I think it would be a good idea for them to acknowledge my effort on this matter.
 
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