Sudden onset of very bad tremors, uncontrollable flapping arms

[Mjm012]

Taking C/L. 25/100 every four hours. Due for meds now. Is this a sign of under medicated or over medicated. It’s very scary for both of us and I don’t know what to do😳

[MBAnderson]

If it is sudden, it may not be permanent.

Whenever I sleep poorly, my tremors are significantly worse the next day. If I get stuck with a bad diet for a couple days, it worsens my symptoms. A day full of stress and anxiety can do that too. I have found that when I get back on track with diet, exercise, and sleep, I revert back to where I was.

I would give it a little time before I adjusted my meds.

[Mjm012649 in reply to MBAnderson]

Thank you!

[Cjbro2000 in reply to MBAnderson]

@MBAnderson This describes my experience with ‘flapping’ as well. It is almost always brought on by stress (good or bad), and exacerbated further during periods in which my meds (C/L 25/100) are wearing off.

[6daniparky in reply to MBAnderson]

Grazie, hai risposto alla domanda che avrei voluto fare anche io.

[Hidden]

Extended Release carbidopa levodopa 50/200 and or marijuana 25mg THC

[Mjm012649 in reply to Hidden]

Indica? Smoke, edible?

[Hidden in reply to Mjm012649]

Capsule

[koshca in reply to Mjm012649]

Indica

[jrg54321 in reply to Mjm012649]

Or tincture.

[1953bullard in reply to Hidden]

But be careful with the indica. I can only take it before I go to sleep. If I take it during the day I can’t function, I just fall asleep

[ladyaudree in reply to Hidden]

What is the 25mg thc doing for you?

[Hidden in reply to ladyaudree]

Trying to reduce tremor when going to bed. Use only when the tremor is worse than normal. I reserving my judgement as I have only used it twice.

[Juliegrace]

The flapping may be dyskinesia. How long have you been taking c/l?

[Hidden in reply to Juliegrace]

I agree. Parkinson’s tremors are low amplitude and velocity. Dyskinesia is the wide flapping of arms, extreme fidgeting etc. stay off Sinemet for just half of one day and dyskinesia goes away.

[Mjm012649 in reply to Juliegrace]

4 1/2 years

[Kevin51]

MBA is spot on! But if it continues then there are two obvious possibilities.

A: If tremor then reducing C/L will probably make it worse (assuming your meds were helping control it).

B: If dyskinesia then reducing C/L should reduce or eliminate the flapping - but at the price of poorer symptom control.

If A then you could benefit from increasing dosage (under medical supervision).

If B then you could benefit from more frequent smaller dosage (same daily total) or continuous release C/L (under medical supervision).

Either way you need to discuss with your neurologist. That conversation (usually brief ) goes better the more you are prepared. Take a video on your phone so you can show them. There are more medication options they may advise.

[jujulini]

It sounds like you have diphasic dyskinesias which occur as the c/l is wearing off. I always know when its time to take my c/l if i happen to get distracted and am late taking it. Try keeping a strict schedule as this will head them off before they occur. Also, amantadine helped alot with the dyskinesias. And then after starting thiamine, I noticed more improvement.

[Mjm012649]

Thank you.

[etterus]

I agree with the diphasic dyskinesias. I also think thiamine helps.

[jeffreyn]

I just came across an interesting diagram.

The underrecognized diphasic dyskinesia of Parkinson disease (PDF):

n.neurology.org/content/neu...

[jujulini in reply to jeffreyn]

jeffreyn - it says "page not found"

[jeffreyn in reply to jujulini]

That's strange - it works for me.

Try this one:

n.neurology.org/content/89/...

[jujulini in reply to jeffreyn]

It is strange. Tried it on my phone and laptop....

[jeffreyn in reply to jujulini]

Here's a third one, just in case anyone has trouble with the second one as well!

ncbi.nlm.nih.gov/pmc/articl...

[jujulini in reply to jeffreyn]

Worked. Thanks