Floating in water with cervical Dystonia

[Billy1999]

Hi I’m new here I have neck dystonia my left shoulder never really relaxes I have Botox injections but doesn’t work that much I went swimming 3 weeks ago and just sunk when I started the breath stroke to cut a long story short I’m starting swimming lessons on Monday I need to learn to float how can I feel really relaxed to be able to float I just want to swim I also have arthritis and I know swimming will feel good if I can just relax in the water has any one got any tips for me please thank you ... Mary aged 63

[Hidden]

Float on ur back,easy on ur whole body.

For my neck n shoulder I use a orthopedic soft cervical collar. $10.

My chiropractor suggested it,as my blankets n pillows didn't help.Also soft tissue work by chiropractors.

Finally heat...heating pad does wonders to relax those stone muscles. Wish u the best n relaxation

[Ali_H]

I’d start by making sure that it’s a quiet time in the pool.... hard to relax with lots of splashing going on. Then just get used to moving around in the water, waking tall, long strides, short strides, little jumps, go deeper so you can bob down and walk with your shoulders under water, move your hands and arms by twisting side to side. At this stage don’t worry about swimming because just being in the water moving around will be so beneficial.

All the best

Ali

[Rkai]

Hello.... I too have cervical Dystonia. The best thing I ever did was to go to. hydrotherapy pool. Water much warmer 34 degrees and no swimming just exercises in the water. With the collar already referred to ....when I used that I just floated

I cried, the relief was so wonderful. Try and get your GP to refer you and then you can have. trained physio to work with you in the water.

[skymax]

Did you know how to swim before the dystonia? I learned to swim when I was 40 but then the lessons stopped at my local pool. I got Cervical Dystonia at 50. I'm now 57 and have never got round to trying to swim again. My most relaxed position was star-shaped, face down in the water(until I needed to breathe obviously!)

[Adaboo]

Hi I’ve only just found this forum so am a bit late to answer. I can swim but my head still turns, floating is nice but again nothing stops my turning, not even Botox plus baclofen plus clonozepam.

[AlecB625 in reply to Adaboo]

Hi Adaboo, sorry to hear nothing works so far. What doses of medication do you take?

[Adaboo in reply to AlecB625]

Hi Alec I take 10mg baclofen 2times a day and .5 of clonozepam up to 4 times a day. Have to say the last botox has worked a bit better. Still can’t drive though and head still turns at night, tremor is still there though. I’m thankful for some pain relief now with the Botox

[AlecB625 in reply to Adaboo]

Hi Adaboo, thank you. So if baclofen and clonoz do not work, why are you still taking them?

By the way have you tried trihexyphenidyl or levodopa?

The hardest thing with botox treatment is to identify correctly which muscles are dystonic and which are counter-acting. It never worked for me unfortunately...So looking at drugs options now.

[Adaboo in reply to AlecB625]

They don’t work enough to stop the movements and I tried cutting them down overtime and then realised they must help a bit as the pain and turning increased even more! The thing is even though they obviously help a small bit nothing has stopped it. This last 2 lots of Botox is showing some hopeful signs. They are now trying different muscles. How long did you get Botox for?

[AlecB625 in reply to Adaboo]

Hi Adaboo,I had around 10 sessions, Xeomin, dysport, botox, various muscles combinations, but very little or no benefit. But to be honest I still feel that scalenes and suboccipitals play role, however my neurologist did not inject them. Apparently too close to veins/arteries and he had no ultrasound equipment. Trying meds now...

[Adaboo in reply to AlecB625]

Hope they help you Alec because this disorder is the most painful thing I’ve ever known! Also look up the ST clinic , you can do it long distance, and Dr Farias. Lots of people are having success with these movement workshops but it takes dedication and quite a long time.

[Adaboo in reply to AlecB625]

My scalenes are def involved and are always injected. They don’t use ultrasound either. I’m sure it’s all down to the skill of the doctor

[Toto88 in reply to AlecB625]

Hi - I’ve seen you posted about trihexyphenidyl & levodopa & wondered plz if you had taken either & it had helped at all plz ? I have the trihexy stuff - took it for one week but no relief from my head pain or neck stiffness! If it helped you what dosage were you tried on plz - I’m considering trying the natural form of levodopa whilst I wait for the Botox treatment! Never ending all this is it ! Thanks for any advice 🙂