Anyone suffered with Sinemet induced dystonia?

[gingerj]

I posted a few weeks back that my symptoms were suddenly worse. However I've come to realise that I'm actually suffering dystonia due to taking sinemet. I take just 3 X 100/25mg a day and have been since January. In June I noticed that I had started to feel stiffness in my shoulder and left thigh several times during the day and it was getting worse. So bad at times I'm struggling to walk.

I read about PD on the internet every day - too much really, but I found several articles that indicated levadopa induced dystonia. Which apparently is common in younger onset PD.

apdaparkinson.org/article/d...

parkinsons.org.uk/informati...

I now need to determine if it's caused when the sinemet is wareing off or at its peak before seeing my neurologist about treatment.

Has anyone else suffered this and what treatment worked for you?

Thanks for any reply.

[johntPM]

I sometimes get dystonia in the form of curling toes. In my case this is due to too low a dose of levodopa. It comes when I'm "off". Taking an extra dose clears it for me. I wouldn't call this "Sinemet induced dystonia", it is the opposite of that.

You have the right idea: see whether it occurs when you are "on" or "off".

[gingerj in reply to johntPM]

Thanks, I'll try taking my next dose early to see how that affects the stiffness.

[Enidah]

When I don’t have enough dopamine I get dystonia in my toes and my back and quite a lot of pain in my shoulders and upper arms. The sinemet takes care of that.

[Astra7]

You need more sinamet rather than less unfortunately. My toes curl and left thigh throbs when I need another dose. Maybe avoid protein so you absorb more of your current dose, and some people are trying grapefruit juice to help it work for longer, but I havnt tried that properly yet ( my kids keep drinking all the juice!).

[gingerj in reply to Astra7]

Thanks. The thing that puzzles me is that when I don't take sinemet I don't get the stiffness. When I do, it starts almost exactly 1.5 hours after each tablet?

[Astra7 in reply to gingerj]

Strange. I believe sinamet is at its peak availability 60 to 90 mins after taking it, so maybe it is it. I thought Dystonia was random jerky movements though?

[JAS9 in reply to Astra7]

Astra7, you're describing dyskinesia.

"Dystonia (literally wrong muscle tone) is a condition in which a specific body part (usually a limb or the neck) is pulled into an unnatural pose by an overly tight or unresponsive muscle or a pinched nerve. In the mild form, this can look like a clumsy, twisted, or draggy limb, or a tilted head. In its more extreme form, it can look like partial paralysis. It does not look like excess movement, such as tremoring or shaking. Dystonia has a kind of stillness, an inertness or rigidity to it."

Much more info can be found in "Once Upon a Pill" page 81, here: pdrecovery.org/wp-content/u...

This is a useful (and free) book, even if the author can be a bit eccentric.

[Lana666]

Same here. Diet restring carbs helps significantly. Then dystonia starts Apokyn injection takes care if it. Apokyn works very fast. If I feel that spasms are about to start and do injection right away, it prevents the spasms. If it already started Apokyn typically ends them within 5-15 min, based on how soon after outbreak it was done and how strong it is. If I have to be in good shape and can’t afford downtime, but feel some subtle off time symptoms- I do the injection preventively.

Highly recommend to try it if covered by insurance. Apokyn (apomorphine) is expensive. Also some neurologists may be hesitant. Despite the fact that it’s an old drug with good safety profile its reputation suffers as it belongs to dopamine agonists. But it doesn’t have typical to this class of drugs side effects, like impulse control disorder, cause it’s a short acting. The effect lasts 60-90 min. So, it’s basically emergency meds for off times. I use it for dystonia and if my meds don’t kick in.

[gingerj in reply to Lana666]

Thanks I hadn't heard about apokyn before. I'll add it to the suggestion list for my neurologist appt

[Parkie- in reply to gingerj]

Hello gingerj

Did you get to ask your neurologist about using Apokyn like Lana666 does for dystonia ?

Thank you

[gingerj in reply to Parkie-]

She told me that she has a few other meds to try that she is more familiar with. First entacapone (I'm trying now) followed by amantadine which she believes will help reduce dystonia. Then maybe look at others before dbs/fus

[Parkie- in reply to gingerj]

Thank you. How is it going with Entacapone?

[gingerj in reply to Parkie-]

Entacapone extends my on time from 2 hours to 2.5 hours so I'm having more symptom freeish time. The only downside is that I feel tired quite a lot and my pee is bright yellow 😕

[Hidden]

I get dyston I a in my face, feet and eyes. With my face and feet, it's definitely worse after I have taken my pills and it's the opposite with my eyes. Sometimes I can't open my eyes until I have taken my first kinson (Sinemet generic ) and yet I can speak quite well until I then within half an hour of taking it my face is contorted and I am incomprehensible. I need the kinson to

[Hidden]

Operate.

[gingerj in reply to Hidden]

Sorry to hear that. Is there nothing that can be offered to you by your neurologist. I understand that controlled release sinemet can be tried as it gives a more gradual increase in dopamine that is sustained for longer.

[Agirlandherella]

I've had dystonia of the foot for about three years. Just started taking Carbidopa/Levodopa, for Parkinson's, and noticed my foot dystonia spasms get stronger as the day progresses.

When I first get up in the morning it's barely noticeable, but after I take my morning dose it gets worse, and progressively worse until evening. The only think that seems to calm it down is a good stiff drink, which I hate to depend on.... Seems to me it is caused by the dopamine boost, rather than "off time"

[Parkie- in reply to Agirlandherella]

Same with me through out the day , and especially : "caused by the dopamine boost, rather than "off time"

(even if neurologist says it’s not so...).

I feel better reading I am not alone!

Thanks for posting

[Crescendo]

My husband suffers from the same condition. We had a lot of difficulty finding others who experienced the same symptoms. He has had PD 11 years and is 72 years old. Last summer, he had DBS surgery because he was on a large dose of Sinemet, and it was no longer working well. The surgery was successful, but he had terrible cramps in his thighs whenever he took Sinemet. With DBS, most people still need to continue taking some Sinemet, although the amount is almost half. We tried switching to Rytary, and that was worse. He ended up in the hospital for two weeks From taking too much Rytary and then went to rehab. Fast forward to this past May, he started taking the ER (extended release) form of Sinemet and his cramps were far less. Slowly, he has been able to get off all Sinemet as his stimulation with DBS increased, and he is functioning fairly well just with the DBS. It’s been a long journey. I won’t say he is perfect, but he is much better without the Sinemet.

[Parkie- in reply to Crescendo]

Thank you for posting this. It is very encouraging to know one can be off sinemet after dbs.

[CaritaP in reply to Parkie-]

I changed the brand from Sinemet to a generic L/cl and my dystonia has almost disappeared.

[tjsmith52 in reply to Crescendo]

Hi Crescendo... I have a lot of the same issues and am scheduled for DBS this fall. I was wondering if you knew whether your husband’s DBS was STN or GPI? Also, is he tremor-dominant or stiff and slow? Thanks!

[Crescendo in reply to tjsmith52]

He has the Abbot DBS with a battery that needs to be changed every 5 years. I am not familiar with STN or GPI. He only had a tremor in his legs. Currently, he only has a slight tremor which comes and goes in his right foot. He is not stiff, but is a little bit slower than an average walker of his age. Let me know if you have any more questions.

[tjsmith52]

Thanks!!!

[Astrojupiter]

I have not looked into articles but this site says dystonia is more common with l dopa and can be improved with amantadine. Also mentions some are slow, some are rapid

parkinson.org/understanding...

[Divii]

how’re you doing now? I also have dystonia upon taking levodopa; actually sometimes it’s both during wearing off and too often

[gingerj in reply to Divii]

Yeah me too. If I miss time my next dose 30 minutes either side ,dystonia strikes.Its the first thing that affects me when wearing off. It can be embarrassing because when I'm at work and my whole left side pulls me to lean over to the left, and my leg pull means walking is difficult. If I try to work against it my whole body tremors.

The best thing is to remember to take meds on time. I'm hoping that DBS will improve things.