Dystonia

[EW0522]

I have had Parkinson’s for 25 years. Dr is considering the pump when approved by Medicare. No telling how long that will be. In the meantime I have been on Rytary 3 95s every 3 hours. I have just developed dystonia (very painful) in my upper shoulder and neck. Dr just gave me a steroid shot, didn’t seem to help. I can’t walk if I miss the three Rytary. I’m even going to the chiropractor. Don’t know if that will help. Any suggestions PLEASE.

[park_bear]

Dystonia can be a Parkinson's symptom. It can also be a result of too much levodopa. One way to tell one from the other is whether this occurs when your levodopa levels are at their low or at their high.

Presuming you're not taking rytary every 3 hours during sleep time, the low will be in the morning around when you take your first dose. The high will be late afternoon or evening due to stacking of the rytary doses. So if your dystonia is worst in the morning it is due to Parkinson's. If it is worst after noon it is due to too much rytary.

Additional detail here: healthunlocked.com/cure-par...

[EW0522 in reply to park_bear]

I believe it is levodopa.induced. What is strange to me is it eases quite a bit when I lie flat of my back. Comes back when I get up.

[Daisies22 in reply to EW0522]

Does your dystonia completely disappear with or without medication?

I have the same problem. I was diagnosed with Parkinson's disease six years ago when I was 49. Five months ago I developed what I think is levodopa induced dystonia in my neck and shoulder which is extremely painful but completely dissappears when the concentration of levodopa in plasma falls below a certain level. I did not have it when I was on a lower dose of levodopa. I am interested to see if by reducing your total dose of levodopa for the day you would experience a relief of your symptoms.

[Boscoejean]

acupressure for neck pain

mydoctor.kaiserpermanente.o...

[LAJ12345]

sounds like too much levodopa to me

[RonB1]

Vyalev device might help you.

[BeedieBird]

I have severe dystonia as an off symptom. the minute I take my meds it's gone. 95mg is a low dose of rytary. I'm on 145 mg of rytary every 4 hours (approx). You might actually need more Levodopa. You could try some immediate release c/l .. if you have any.. a small chip under the tongue say 25mg and if the immediate release helps, I'd say you are underdosed.

[EW0522 in reply to BeedieBird]

Actually I take three 95’s each dose.

[BeedieBird in reply to EW0522]

Oh I see. I had worse dystonia with immediate release c/l. Once I went on the Rytary it mitigated the pain and I felt much better. I have 145 mg + the 95mg + immediate release available to me. So I use all 3 options, but the 145mg is my go to. If I feel an off period which manifests as dystonia for me, maybe due to stress or lack of sleep and I can't make it 3-4 hours before my next 145 mg dose, I'll take a chip of the 100 mg c/l immediate release (25mg maybe) and put it under my tongue. the immediacy of this form of c/l usually works fairly quickly to mitigate the pain. If it's a really bad day I'll do that same routine and add the 95mg. These are my options when my routine of 145 mg every 3-4 hours is not working. I like having options like this available and my neurologist has been great. But that's because my dystonia is definitely related to Parkinson's and not Levodopa. It was one of the very first symptoms I had prior to being diagnosed and put on Levodopa. I wish the best for you.

[eviedotty in reply to BeedieBird]

I believe dystonia does have an element of Parkinson in Scotland it’s called Parkinsonism. I have dystonia but from a lesion in the basal ganglia area of the brain. The lesion is called cavernoma.

I have non chemical supports taught to me by physiotherapy. She taught me about splints and for the neck area a high back chair to support the neck. My hand was so tightly spasmed that the skin bled and started to smell because I couldn’t cut my finger nails. I was given two types of splints the first to get the hand open and the second to support the hand to stay open and function again allowing for the finger nails to be cut and the skin to heal.

If I put a hand on my head it releases the spasm but as soon as I take the hand off the spasm comes back. I unfortunately can’t tolerate any of the drugs my neurologist tried, I managed to get every adverse side effect which was dangerous so I now just have rescue meds as a care plan and use splinting for daily management

[Mimi1520]

I have been getting Botox injections every three months for my dystonia and it is really helping. I also use a spray on magnesium oil topically and that helps as well.

[EW0522 in reply to Mimi1520]

Botox is next..thanks

[limcheeese22]

what else do you take? Amandatine?

[Sandmanliz]

I had a chat with a tech at the University of Colorado. He spent the last 2 years involved with the pump study there. They had 14 patients. He said patients were very satisfied. One quit because he travelled a lot and the drug has to stay refrigerated and the tubing etc. was inconvenient for him. Last month I heard it has FDA approval. I can't wait because I can eat again! He said there are 3 level adjustments. (low to high). Try extra magnesium for dystonia. Hang in there!

[PD-CareGiver]

Hello Would you please your Rytary dose more clear. Just curious, my husband has Parkinson since 13 years ago and he was taking 2 Sinemet 25-100 every 2 and half hours. Doctor switched to one above Sinemet and one Rytary 23.75-95 every 3 hours (five times a day). It is not working for him. I guess he needs a higher Rytary dose.

[Juliegrace]

I developed dystonia suddenly about a year and a half ago. It was miserable and had me crying in pain for an hour or more every night while my meds wore off. Over time it changed and evolved and eased somewhat, but was still miserable. I had DBS a month ago and I am almost dystonia-free, and it is such a relief! I wish I had done the DBS as soon as the dystonia had started. It would have saved me a lot of suffering and I would not have degraded to the point I did. I strongly suggest looking into it. Good luck.