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TOPIC: Exercise-induced dystonia

Re: Exercise-induced dystonia 4 years 5 months ago #2419

  • lizzy
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Hi Kjersti! Now it is I who must apologize! I received your last post when I was in the middle of a big move! I have started with electrolyte tabs and have been very gradually increasing activity and even managed to make to to 5 miles jogging which I discovered was a little too much! I had botox in my neck which helped with the exercise induced headaches/neck spasms. Have not had much look with my hand or hip or foot. Anyway, thank you for the information!

Liz
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Exercise-induced dystonia 4 years 5 months ago #2425

  • humbug73
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Hi Liz,
Well done with your jogging! I have recently moved house myself, from one country to another! ;)
In the past two-three months I have discovered something very interesting though, I seem to have 'solved' my issue. Not altogether, I obviously suffer from some kind of condition which will not go away just like that. However, whatever it is, I have by the looks of it found a way to stop any episodes once the initial symptoms make an appearance, or sometimes they will not even get that far. I have not seen a doctor yet regarding my new discoveries so I cannot tell you the technicalities. Basically it is my breathing which is the problem, maybe my body don't get enough oxygen or something... or too much of something else. To avoid episodes or to stop the symptoms I simply take really deep breathes every so often throughout my runs or whatever other activities I am doing during the day. I sometimes feel weak and then I just stop and take a couple of deep breathes. It miraculously works for me. I have not had any episodes since May time, and I know for a fact I have stopped several.

Please let me know whether this can help you in any way. I have not registered with a GP in my new location, I look forward to hearing what they think :blink:

All the best,
Kjersti
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Exercise-induced dystonia 4 years 5 months ago #2426

  • lizzy
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Wow, I just move from Northern California to Southern California and you have moved to another country! You have me beat there! I am glad to hear you are doing better. I wonder if taking the deep breaths is calming your nervous system which may have something to do with warding off the attacks. I have not met with a new GP yet either. I have an appointment next month and am not looking forward to having to explain everything again! My old GP (not the neurologist that diagnosed me with dystonia) thinks I have some sort of mitochondrial disorder. Anyway, I just slowly build up to new activities and change things up often enough that I don't over use the same muscle groups. Keep me posted on any new revelations and I will do the same!
Thank you for the information and take care!
Liz
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Re: Exercise-induced dystonia 3 years 2 weeks ago #3415

  • Saba
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Hi
I've just read your posts from a couple of years ago because I'm desparetly trying to find other people with exercise induced Dystonia.
I was diagnosed with Dystonia and Conversion Disorder in 2007, over 7 years ago. I have it so severely that I am housebound. I can't even take a shower without 15mg of Diazepam beforehand and then I might still have a fit afterwards.
I had a couple of years of psych therapy which didn't help. Being told this illness was all in my head was very distressing and I am very depressed.
I recently asked my GP for some retesting as I want to look further into my case to see what help I can get. I got a big no. I was appalled by her lack of sympathy saying "once you've got a diagnosis of Dystonia that's it there's nothing you can do"!
I don't know where to turn next. I've been turned down out of area referrals on several occasions. The NHS makes me so angry. Like you I feel I'm on my own to figure it out. Can't afford to go privately.
Any suggestions??
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Exercise-induced dystonia 3 years 6 days ago #3431

  • Milkybar-star
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Hi,

I think I may have paroxysmal exercise induced dyskinesia (dystonia).
I am seeing a new specialist tomorrow about it.
I just wondered if anyone had had the genetic testing done for the deficiency of the Glucose transporter? Or a lumbar puncture to get a diagnosis of this condition?

I get spasms in my foot,leg and hip after I have done a hard session where I have pushed my body to my maximum heart rate.

Being cold can also aggrevate it too.

Any advise would be much apprecisted.
Thanks.
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Exercise-induced dystonia 2 years 4 months ago #3685

Hi lizzy,

I am new here I was diagnoised 2 years ago my Nuroligist was such a nightmare that I left thinking I can not have this. I could hardly walk and my whole body had spasms since then I have gone all organic, no drugs, no alcohol, alkaline water, PT, massage therapists weekly and when I say massage I really mean painful bodywork not the usual dim lights and candles I also get accupunture. I live in Southern California but originally from Nor Cal. I'm rethinking this diagnoised because I cannot rid the pain in my left foot and my adductor is a mess. I recently had locked jaw too. Have you found anyone in Southern California that understands this diagnoised? When you have an issue after exercising which I do daily 45 to 60 minutes 6 days how exactly is your pain if your comfortable telling me I would so appreciate it. My foot feels like I have a tight sling right underneath my foot. I he had an MRI of my foot but all that shoes up is a little inflammation. If anyone else in this forum reads this and has any suggestions or thoughts please know I would appreciate any suggestions.
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