Jaw tightness with Sinemet

[Kt088]

Whenever I take my sinemet and it starts to work, about half an hour after taking it, I get this tightness in my jaw which affects my speech. It’s like my jaw is wired shut. This goes away as the meds wear off. Very frustrating. I can either take my meds and be able to function but can’t speak well or not take the meds and be able to talk but not move. It’s a catch 22. Anyone else experience this?

[lenamm]

Sounds like dystonia. My meds cause dystonia but not in my jaw. It got to the point where I had to do any walking, standing etc before I took meds in the morning because once the meds kicked in I was housebound but with out meds after about two days I was also non-functional. I wish I could say I had an easy solution but brain surgery was the only thing that stopped the dystonia for me. Most people meds help dystonia but there is a small group of us who it causes it. You might want to talk to your doctor about cutting back on your meds. What we have is called dystonic dyskinesia.

[Kt088 in reply to lenamm]

Thanks. I don’t think it’s from too much sinemet as I only take 3 in a 24 hour period. I don’t take any other prescription medication. I tried requip but it gave me blinding headaches. Dystonia is a good guess, I’ll look into it further. Thanks again.

[lenamm in reply to Kt088]

I got dystonia on 300mg of Sinemet a day - rare but in my case not impossible. Even taking 50mg a dose caused it presurgery. I had only been on meds two years.

[gingerj in reply to Kt088]

I too suffer dystonia as a result of taking sinemet. It began when i was on 3 100mg tablets a day. Mine affects my whole left side. Making walking difficult. It tends to begin 45 to 60 mind after sinemet and lasts at least 30 mins.

[Juliegrace]

I’m the exact opposite. My jaw is tense off meds but relaxed while on, just about the only part of me not affected by dyskinesia.

[Parkie-]

Hello K

I agree with Lenamm, it looks like my own levodopa induced dystonia. It occurs even now at 300 mg cr a day (down from 700 mg about a year ago because of side effects).

Have you tried Amantadine? Although I have horrible side effects from it and cannot take it myself, I know it helps with dystonia for those who can tolerate it.

[lenamm in reply to Parkie-]

Beware Amantadine - I know some do well on it - but for me it caused 100% insomnia and severe mental decline from that. It was the final thing that put me over the edge in having to quit working and started the slide to me being housebound pre-surgery.

[Parkie- in reply to lenamm]

Yes, I also got total insomnia, constipation and total lost of appetite, and already very underweight at 91 lbs, certainly can't have that... But some members here say they don't get side effects from it, so might be worth a try.

[lenamm in reply to Parkie-]

It gave me a type of mania - felt great for about a week than rapid decline. Yipes - you lost more than me - I got down to 105 (I am 5'4"). Post surgery the weight came back - I am now 137 - about 10-15 lbs more than I would like.

[Parkie- in reply to lenamm]

That is one major side effect from Amantadine!

Thank you for sharing this info.

[Parkie-]

Hello K1i2t3

This is the cutest dog ever!

Is it a poodle or some other kind of "doodle"?

[Sapeye2020]

YES , I get it too, Like my TMJ is fixed and some words or letters can NOT be said or formed . FRUSTRATING.