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TOPIC: Exercise-induced dystonia

Exercise-induced dystonia 5 years 3 months ago #1332

  • humbug73
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Hi, I'm a 38 year old female and I've been suffering from what the doctors believe to be exercise-induced dystonia since I was 16 years old.
I don't have any symptoms from day-to-day apart from a problem with my right hand which the doctors have not yet been able to diagnose, not sure whether it could be apraxia or dystonia or something totally different.
But it is the exercise-induced dystonia I wanted to talk about. I have recently started running, I have worked my way from 0 to 5 km in two months and I am now working my way through to 10 km. However, I am having frequent 'fits' following my exercise and it is really starting to bother me. I used to be able to control it quite well in the past, but now that I am pushing myself with rather vigorous exercise it is a weekly occurence.
My fits used to last for 15 min, but now I have them for maybe 1 hour at a time.
They are not really fits though, I suppose... it starts of with my toes curling on my left foot and then I may start limping as I cannot quite control my leg. Then finally I get a very slurred voice, very embarassing and my face sort of goes all numb.
Has anyone else been diagnosed with exercise-induced dystonia or perhaps have similar symptoms. I am desperate to find out more, to know whether there is anything I can when the event sets in. I am currently taking Sinemet, I believe it does something to relieve my hand issue, but I am not entirely sure it does anything further with my exercise issue...

Many thanks!
- from someone quite desperate and unhappy
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Re: Exercise-induced dystonia 5 years 2 months ago #1558

  • Cat
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A neurophysio told me that while the body is warming down after exercise ie the heart rate is gradually returning to normal, the body is under a bit of stress so symptoms will be a bit worse during that time and they quickly settle once the body settles back down. She demonstrated this to me. It's true. I think her point was that it's ok to exercise - in fact it's good.

Cat
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Re: Exercise-induced dystonia 5 years 1 month ago #1649

  • lizzy
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I was recently diagnosed with dystonia and I believe it is exercised induced. If I do any thing, I have to plan to be able to lie down for 30 minutes or so afterwards. Lately, my left abductor and calf have been seizing up after i do too much. Have you found any treatments that have helped?

Thanks,

Liz
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Re: Exercise-induced dystonia 5 years 1 month ago #1653

  • humbug73
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Hi Liz,
Thank you for your post. Your situation is very interesting, firstly, because you are the first one I've ever heard of that might have the same kind of dystonia as myself, secondly, as it sounds very much similar to my issue.
Since my original post in September I have come much further in analyzing my 'problem' myself.
I have worked myself all the way up to 10k and have done a very challenging 10k run - without any seizure. So, in that way I know that it is not exercise alone. The key to my seizures seems to be in my vocal usage. In other words, if I talk a lot before/during/after a run, I will get a seizure. If I only talk a bit or not at all (I might go on a long run all alone) then it never happens.
I had to come off Sinement, because it started to make me nauseous and sick (I'd throw up immediately after taking them), besides I knew that didn't help on the seizures, they had no effect at all.
I have been given a kit to test my glucose levels if I was to have a seizure, but since having found out that it is a problem linked to the amount of chatting I am doing, I have become very good at avoiding any incidents :unsure:
I also believe that the longer running distances I've been building up I seem to be more resistant to seizures.

I hope that perhaps this will help you see potential links to triggers of your seizures - I would love to hear further from you.

Warm regards,
Kjersti
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Re: Exercise-induced dystonia 5 years 1 month ago #1654

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Thank you for replying! I am glad you have found out your triggers. It is so weird that some days I can go for a bike ride and be ok while other days I am crippled afterwards!?! It has been so diffiiculy to explain to the many doctors that I have seen that I may appear "ok" when I come into their office, but catch me after I try to do something physical and it is a whole different ball game.

Was it suggested to you that there was a tie to glucose levels and your seizures? I was debating on trying a ketogenic diet to see if it made a difference. The "fits" you describe are very similar to what I have experienced. It was more in my neck, upper back and left arm but I am now having problems with my left leg. I got on the elliptical for 30 minutes last and could barely walk afterwards! It usually goes away after an hour or so. I have constant pain in my mid back, left hand (writers cramp) and my neck is really reactive if I am not careful.

Any advice or helpful hints are welcome! Thank you again for writing Kjersti!

Liz
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Re: Exercise-induced dystonia 4 years 10 months ago #1969

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Dear Liz,
I am sorry that I have not written to you lately. You have been on my mind and I have meant to write to you, but it has more been a conversation in my mind! ;)
In the last few months I have had an opportunity to analyse my issue even further. I have been training myself for a half marathon - tomorrow!!! Eeeeekk!!! - so there has been very little else than exercising happening in my life :)
I have gone from one extreme cause to the other being reasons for my episodes (most suitable word for it at the moment). Some causes considered: speaking too much, shoes, sleep (not enough), what food I eat the day before; just before exercise etc, sugar levels (the blood test was my idea, to catch me at the time of an episode, but my sugar levels are absolutely fine), electrocytes, shoes, heart rate ...
Endless list it seems like, but I believe there are more than just one factor.
I very much believe in electrolytes being a potential issue. I sweat out a great deal of salt when I run (especially where I currently live - hot climate), my face is literally white when I finish my workout due to salt. Hence I have started to drink sports drinks and have yet to have an episode while I have had then - I choose the ones with high levels of potassium (one type of electrocytes - if you read about these you'll find that they are linked to neurological function), like Powerade and Nuun tablets. But you may need to discuss with your doctor whether recommended for you personally - due to the very high salt content.
Lately I have obviously been for very long runs, as I have been working my way up to 21k runs. I have done 10k, 14k, 16k, 21k runs. What I have noticed and picked up on and hence adjusted for every long run is the pace I start off with. I believe based on my own 'studies' that if my pace at the start is too fast (giving me a very high heart rate), I will have an episode, my body is unable to recover even if I slow my pace down eventually. It is almost like I have a deficiency in my body, possibly potassium deficiency which means my body cannot generate the potassium quickly enough once it's low and hence giving me a sort of cramp in my left leg resulting in an episode. If I however start of slowly (sometimes painfully slowly, as I just want to whizz off! - a rate of 8 min per km or even slower) and then bit by bit increase my pace then I am normally fine. I use a heart rate monitor with my Garmin watch which I find incredibly useful in helping me pace myself. You should notice it too on your breathing (so I am not urging you to run out and buy a Garmin if you haven't already got one!), if you are breathing very heavy right away or even have problems breathing easily, then you need to slow your pace down. Once your breathing is easier or you can see your heart rate is more settled (maybe 160 beats per min, but this is personally though), then you can increase your pace and I find myself enjoying a long run, it is much easier for me when my breathing is calm and steady.

I hope that this will help you some, Liz, perhaps you've been given further advice by your doctor? I don't think my doctors are able to help me much to be honest, I feel I am on my own here to try to figure out my issue. One specialist suggested that what I do is not normal exercise, so I need to cut it down to a 5k run a couple of days a week instead. But I told him that distance doesn't matter, I can have an episode after a 5k run too or 30 minutes mad dancing on the dance floor!! Which tells me that maybe I am onto something with heart rate and how much work I start off with right away without a proper slow 'warm-up" initially.

I hope to hear back from you. Apologies again for the lack of communication from my side.

Warm regards,
Kjersti :)
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