Forum


donatenew

Welcome, Guest
Username: Password: Remember me
Welcome to the Dystonia Society forum!
Read the Terms and Conditions
  • Page:
  • 1
  • 2

TOPIC: secondary dystonia following stroke

secondary dystonia following stroke 3 months 1 week ago #4171

  • claire35
  • claire35's Avatar
  • OFFLINE
  • Junior Boarder
  • Posts: 7
  • Karma: 0
I was wondering if anyone else has been diagnosed with delayed onset dystonia, following a stroke or TBI? I had a stroke in 2015, all seemed well until about a year ago when my legs and feet started twisting with jerking and pain. I am struggling to adapt to the constant pain and twisting both legs and feet. Walking is agony and exercise makes the twisting and pain worse. I am really seeking advice from anyone who is coping with similar. I am taking clonazepam, but wonder if there are any others out there who are experiencing this?... And how they cope physically and mentally? Thank you
The administrator has disabled public write access.

secondary dystonia following stroke 2 months 2 weeks ago #4175

  • DebbiMack
  • DebbiMack's Avatar
  • OFFLINE
  • Junior Boarder
  • Posts: 4
  • Thank you received: 2
  • Karma: 0
Hi,

I have the same problem. I had a stroke in 2004 and fully recovered, only to develop dystonia on my left side a few months later.

I won't lie to you. It's been a tough adjustment and there are no eaay answers. However, along with taking clonazepam, I'm on Cymbalta (for depression and pain relief) and gabapentin (for neuropathic pain). I'm also doing acupuncture, which helps with overall mood and health. I exercise regularly, and that helps.

Don't push yourself too hard and try to surround yourself with positive people. I'd like to see more research go into this particular type of dystonia.

I'm a writer, so I think that's been therapeutic for me, too.

All I can say is, just hang in there. Watch funny movies and read. I love reading. Do something you love to relax.

Best of luck!
Debbi
The administrator has disabled public write access.
The following user(s) said Thank You: claire35

secondary dystonia following stroke 2 months 2 weeks ago #4176

  • claire35
  • claire35's Avatar
  • OFFLINE
  • Junior Boarder
  • Posts: 7
  • Karma: 0
Hi Debbie.
Thank you for posting... The first person I have ever met with this sequelae.
Do you mind me asking how much clonazepam you take? I am currently trialing clonazepam and baclofen, but it doesn't seem to be a good combination. Exercise is tough because of the pain and twisting in back, knees and feet and I experience a lot of twitching and 'buzzing' in my legs. How do you exercise and does pain limit this. Perhaps i need to try gabapentin... Pregabalin knocked me out when i took it with clonazepam...
Finally, how long did it take for your symptoms to stabslise? Mine are persistant 24/7 and sometimes it feels like they are getting worse...
Thank you very much for your time and help
Claire
The administrator has disabled public write access.

secondary dystonia following stroke 2 months 2 weeks ago #4177

  • DebbiMack
  • DebbiMack's Avatar
  • OFFLINE
  • Junior Boarder
  • Posts: 4
  • Thank you received: 2
  • Karma: 0
Hi Claire,

If I make typos, I'll ask your forgiveness in advance, since my left hand is constantly clenching. :)

I take 1 mg. clonazepam every night before bed. Gabapentin might be a good thing to try. I also used baclofen, but it didn't help.

My symptoms are also 24/7. It wears me out. My sense from what you've said is that the dystonia in your foot is affecting your back. Since I'm not a doctor, I can only suggest trying to take walks. I've noticed that walking has helped me simply deal with the issues.

Not doing any exercise led to a situation where extensive walking made my hip hurt. So a little exercise is better than none.

Have you considered seeing a physical or occupational therapist who understands what dystonia is? It was from a PT that I got my current exercise regimen. I also do various hand exercises, including typing, I have been using voice recognition software when I need to, which helps.

What I'd like to do is more blogging about this topic. Along with my author website: www.debbimack.com, I've started a blog called Simply Living. I get the feeling that there's a whole bunch of us out there, searching for answers. The Simply Living blog is here, if you're interested: www.debbimackblogs.com.

Right now, I've posted about my travels, my book reviews, and a few health tips. I get the feeling it may be time to focus more of the health aspects. I'm particularly interested in ways to manage time and energy when one is constantly twisting.

I hope that's provided some help. I'm still looking for answers, too. :)

Cheers,
Debbi
The administrator has disabled public write access.
The following user(s) said Thank You: claire35

secondary dystonia following stroke 2 months 2 weeks ago #4178

  • claire35
  • claire35's Avatar
  • OFFLINE
  • Junior Boarder
  • Posts: 7
  • Karma: 0
Thank you Debbi
Mysteriously, it is pain in my toes that is the worst. If I perform leg raises on my back the whole leg clunks and the psoas muscle is extremely tight. I do try walking and it is ambulation that seems to make it worse. I will check out your web link... Have you ever tried a higher dose of clonazepam or does 1mg knock you out? It seems that there is very little awareness about secondary dystonia and like yourself, I am looking for any advice...
I just had one final question... would you say that your dystonia symptoms have plateaued or that they are getting worse?
Thank you, take extra special care
Claire
The administrator has disabled public write access.

secondary dystonia following stroke 2 months 2 weeks ago #4179

  • DebbiMack
  • DebbiMack's Avatar
  • OFFLINE
  • Junior Boarder
  • Posts: 4
  • Thank you received: 2
  • Karma: 0
You're welcome, Claire.

I truly sympathize. I'm going to start sharing ideas on a more widespread basis.

My current dose of clonazepam does seem to be best for me. I get drowsy, and I don't like to take more than I need to.

I wouldn't say I'm getting worse. Just feeling the same, all the time. Tiring. :)

Are you in the UK? Curious, because I noticed this is a UK forum. Obviously, anyone can be on it. I'm in the States, so there you go. But this is the first place I've seen anyone talk about our particular condition.

Thank you, and chin up! (Dare I say it? :))

You'll have to excuse me if I tend to joke. Honestly, sometimes it's the only appropriate response. To laugh.

Take care,
Debbi
The administrator has disabled public write access.
  • Page:
  • 1
  • 2
Time to create page: 0.108 seconds