C/L dosage

[Javalove]

Has anyone experienced Sinemet overdosing causing muscle spasms/cramping?

[WinnieThePoo]

Oh boy yes. Yesterday again. It's extraordinary how I seem to have to keep relearning this point. Normally I think of myself as fairly bright and observant, but it's like groundhog day with sinemet and dystonia 🙄

[Gymsack in reply to WinnieThePoo]

Winnie , I am confused

You have linked excess sinemet with Dystonia ( involuntary movement) which I agree and I have experienced head bobbing swaying and hand movement. (I look like that blind singer that played the piano)

But the question was cramping and muscle spasms

I have also experienced severe muscle cramping involving my complete leg and it hurts like hell, but always first thing in the morning before I have taken my meds and the only thing that will make it stop is LD/ CD so I have to wait 20 minutes for it to kick in. I have never heard of too much LD/CD causing cramps.

[park_bear in reply to Gymsack]

Dystonia is muscle tightness which can also result in cramping.

Dyskinesia is involuntary movement.

Levodopa can cause dystonia: healthunlocked.com/cure-par...

[jeffreyn in reply to park_bear]

PB, I think your definitions are incomplete.

Dyskinesia comes in 2 forms:

- choreic (MJF's dyskinesia)

- dystonic (my dyskinesia)

When my dopamine/levodopa level is too high my foot arches up and then goes flat again, repeatedly.

EDIT: If my foot were to arch up, and stay up, that would be dystonia.

[Gymsack in reply to jeffreyn]

I live and learn

Dystonic Dyskinesia

[WinnieThePoo in reply to jeffreyn]

When I get episodes of dystonia, whether caused by the underlying pathology, or excess aggregate medication, i get a constant muscle-cramp pain running from my neck and shoulder through my biceps, across my forearm and into my thumb.

That's at it's worst. There are intermediate states - "warning shots" which start with a numb right wrist, then the next stage adds tight bands round my biceps, and finally a stiff mildly painful neck, before "the full monty"

When asked about the pain level by my GP I rated the full monty 11/10. My GP tells me he has a few patients with painful dystonia, and no effective therapy. The opiate based medication he prescribed for me was no help.

I haven't self-experimented extensively, but I think both the underlying pathology and the therapy-induced versions have the same stages of dystonia.

Which is what makes it so bloody confusing. That, and the fact that I have sinemet, Pramipexole and gloves in the mix. I think in terms of Sinemet because it is the easiest one to vary, given I am trying not to miss or shorten glove sessions.

When I have missed consecutive glove sessions, I have needed to increase the sinemet temporarily, which has also contributed to the general muddle and confusion

[jeffreyn in reply to WinnieThePoo]

Wow! By comparison, I've got it easy.

Some months ago, I started to get dystonia shortly after getting out of bed in the morning. The toes on my affected side would curl under, and I would sit on the floor and massage them for a few minutes until the dystonia went away. I fixed the problem by setting my alarm for one hour before I planned to get up. When the alarm rang I took my first madopar 125 and went back to sleep for about an hour. Dystonia in my toes hasn't happened again.

As for my dystonic dyskinesia, I changed my regimen of 1 madopar 125 6 times per day, to 1 madopar 125 3 times per day alternating with three-quarters of a madopar 125 4 times per day (still 6 pills per day in total). The dystonic dyskinesia disappeared, but tremor appeared more frequently. I now alternate between the 2 regimens on a weekly basis (roughly).

[Buckholt in reply to jeffreyn]

I’m trying something similar by alternating between 125 and 62.5 mg doses. What time intervals are you using and do meals have any effect?

[jeffreyn in reply to Buckholt]

My madopar 125 doses (of 1 tablet alternating with three quarters of a tablet) occur at 6:30 am (used to be 8am), 10:30 am, 1 pm, 3:30 pm, 6 pm, 8:30 pm and 11 pm (6 pills per day in total). Lunch is at roughly 1:30 pm and dinner is at roughly 7pm. These times can vary a bit, but I don't notice much of an effect. I am still experimenting.

[Javalove in reply to Buckholt]

Sorry for this late reply. I am trying various dosages and time intervals. My doctor has a couple medications she’s considering for me: Amantidine and/or Artane. To be continued…

[WinnieThePoo in reply to Gymsack]

Dyskinesia is head-bobbingDystonia is muscle cramps

Edit. Oops, I see PB beat me to it.

Never mind anybody else's terminology, my GP referred to my muscle cramps as dystonia

michaeljfox.org/news/dystonia

[WinnieThePoo in reply to Gymsack]

It's a new problem for me due to using the gloves (I think)As is (very painful) dystonia from insufficient medication.

Hence the confusion. Made worse by tremor /jerkiness. I am grateful for a comment made by Ethin for opening my mind to the idea that over-medication can cause a jerkiness which can be mis-interpreted as tremor

The devining rod, which I need to remind myself of, is bradkynesia. Tapping my fingers decodes over or under medication

But the temptation to respond to "more symptom" with more medication is plainly a knee-jerk one in my case

[Ethin in reply to WinnieThePoo]

Indeed, the gloves don’t necessarily make it easier. Been on the CMF’s for 10 days now and start to get a bit more of ‘that swinging feeling’ (dyskinesia), but cannot reduce medication too much (at least at the moment) or dystonia kicks in, which for me is not just painful cramping, but disabling, because foot and leg get locked preventing normal walking.

It’s going to be a fine line..

[WinnieThePoo in reply to Ethin]

Are you finding the cmf different from the bhaptics?

[Ethin in reply to WinnieThePoo]

It’s still very early days, so difficult to say anything with confidence.. in terms of the acute effect, they feel similar. I have my longer sessions in the evenings, and both types of gloves have a soothing/ refreshing effect, but also wake me up , so that I need at least one hour afterwards to come down before can go to bed. In terms of a persisting effect, maybe the stronger dyskinesia I experienced in the last days is the first sign of a greater efficacy of the CMF’s?

To be continued.

[Buckholt in reply to WinnieThePoo]

Are you fairly fixed which your daily C/L doses, or are you reacting to symptoms on a more dynamic basis?

[WinnieThePoo in reply to Buckholt]

I was fairly fixed. I take 1.05mg Pramipexole LP once a day, and 2x10/100 C/L at 7am, 11am 3PM and 8PM. But the gloves appear to be having a progressive effect - and my PD appears to have progressed with the onset of dystonia.

So , it's a question of trying to hit 2 moving targets. I am experimenting today with no C/L and so far, so good - but I am aware that it can change

[Ethin in reply to WinnieThePoo]

I'm curious: how has the amount of medication changed over the time you have been using the gloves?

Background: I did some travelling last week, which I loved, but which also put me off my normal routine (gloves and everything else), and then the dystonia returned with a vengeance which has been quite frustrating. Before the travel I thought I should try and reduce C/L a little to be on the safe side of dyskinesia, but right now I would just be happy to return to the previous steady state.

[WinnieThePoo in reply to Ethin]

Neither linearly nor constantly. Maybe I'm just screwed up. But my experience of PD has not been of a steady state I am open to other ideas, but for now I assume very painful dystonia is now normal. I suffered it for more than 2 weeks, maybe a month. The GP prescribed anti-inflammatories and codeine and they were useless. The gloves, or the passage of time, have significantly reduced it (effectively eliminated it) so, no change in meds is effectively a substantial drug reduction, possibly.

At the moment I take 1.05 pramipexole LP and 1 C/L at 7am, 1 at 11 am, 1 at 3pm and nothing at 8Pm. Sometimes I take 2 at 11 or 2 at 3, so

3 or 4 or 5 a day.

[Ethin in reply to WinnieThePoo]

Yeah, I would gladly give up to the dystonia and keep the amount of C/L (currently 6/day) — but it sounds like you also had a massive reduction in C/L pre - post gloves (3,4,5 vs 8/ day). Very promising.

[WinnieThePoo in reply to Ethin]

It's a case of necessity. It's easier to take an additional tablet than to untake one. If I have too little I get a tiresome tremor and bradkynesia (my touch typing goes to pot) too much and the dystonia sets in. I should probably try half tablets. I take 1 tablet and if my touch typing is poor I take another. I am probably at the best I can achieve at the moment. No tremor, fast typing and mild pain in my bicepsThat was 1 at 7, 2 at 11.

[Divii]

Yesssssssss. 100 times yes. Having one now

[cgreg]

Yes, several times. I needed to reduce my C/L dosage.

[BaileyCO]

I just had a hip replacement and I have experienced the muscle spasms so badly I could barely walk with the walker. I was 2 weeks post surgery and was doing great and now I’m trying to get back to where I was 8 days ago. I take 1 & 1/2 c/l 4 times a day and 3 pramipexole a day. I have cut back to twice a day on pramipexole.

I sympathize with you on the pain, it’s been worse than the hip replacement.

[ev2413]

YES, typically my hamstrings, very uncomfortable.

My Sinemet dosage is 25/100, 4 times a day at;

8am, 12am. 4pm and 8 pm.

[4grandbabies]

Javafran. Most certainly I have spasms. Always in my right leg, every day for 6 years. I become confused,I dont know if I have too much or not enough.My daughter claims it is when have too much. I always get bradykinesia before my next dose is due and sometimes, after taking the does, it helps, othertimes it is as if I hadn't taken it at all. I don't believe I answered your question, but I feel better having shared mine and knowing I am not alone battaling this "life-stealing" disease.@

[Crescendo]

After my husband had DBS surgery, they lowered his Sinemet dosage, but he got leg cramps every time he took Sinemet. Eventually, he was able to stop taking Sinemet and just rely on the DBS. All leg cramps stopped.

[LAJ12345]

yes, my hubby did on the ER madopar which was too strong for him. He does much better on the 50/12.5 madopar tablets which can be cut as necessary. He has found taking them closer together at this low dose and spacing them out further later in the day works best for him.

He takes 1/2 when he first wakes then another whole about 2 hours later. This sets off 2 doses with offset peaks in his blood, the tails of the doses overlay. Then he takes them 3 1/2 hours apart until the last dose he only takes 1/2 again as he gets spasms and anxiety if he takes higher levels in the evening.

[creightstuff]

hi, i always get severe muscle cramps in my right calf as the C/L kicks in, takes around 15 minutes, going from off to on - only with my 50/200 extended release

[Javalove in reply to creightstuff]

Thank you for sharing this with me. I have a dosage of 50/200 ER before bedtime so I’ll take it a bit earlier to see if it helps to relieve it. (Don’t have the cramped muscles when I go to sleep.). Thanks again!