dyskinesia

[Rupa88]

after being on C/L 25/100 mg 3 times a day for almist a year I feel extremely fatigued in between doses and I get multiple types of dyskinesia? Any thoughts, similar issues????😥

Appreciate your response

[park_bear]

My normal baseline consumption of C/L 25/100 mg is similar to yours and I do tend to get a bit of dyskinesia. Fish oil seems to be helpful in reducing this - see here: healthunlocked.com/cure-par...

[mktbob55 in reply to park_bear]

how long have you been taking C/L?

[Rupa88 in reply to mktbob55]

one year

[park_bear in reply to mktbob55]

9 years.

[michelagvolpe]

try to add some vitamins, maybe it is better before to have a blood test to see how much vitamins B you have

[JohnPepper]

You are not doing the only thing that revereses PD! FAST WALKING is the only way to reverese your PD, It costs nothing! I have had PD since 1992 and at 89 I am still walking and have no PD symptoms.

[Rupa88 in reply to JohnPepper]

I am either so tired that can not walk or dyskinesia makes my toes curl and prevents me from walking.

Believe me I want to do it

[pearlette]

I developed dyskinesia within 3 months of similar dose. Still a problem for me but have better control by usine 12.5 /50 mg when I get the first tinge of my off symptoms . It means that my daily dose is variable between 6 to 10 per day (300mg to 500 mg levodopa a day)

If I ignore the early off phase while working even if I delay it by 15 minutes and try to take more levodopa to get going again, I get awful multiformic dyskinesia with cholinergic features (excessive face and neck sweating and feel exhausted). I am getting better at dealing with that by deep breathing exercises etc. But repeated dyskinesia is exhausting. I also get recurrent inflamed sore areas on my tendons that subside after about 2-3 weeks. If dyskinesias occur when they are active ,they get extremely painful and throb with a sharp pain.

I do take fish oils but have not noticed a difference. Likewise topical magnesium oil or oral magnesium glycinate have no noticable effect.

Like wise I have had no benefit from Controlled release ; in fact my fine tuned control goes haywire on CR levodopa)

Occassional 1 mg trihexphenydyl helps ; reserved for severe socially disabling situations.

I have been promised a levodopa pump as soon as it is available in the UK NHS (not on a trial )

I personally have significant doubts that DBS would help me but it may be worth having a conversation ith your MDS.

[Rupa88]

how long have you had PD?

I am not ready for DBS after a year of treatment yet.

Would you please let me know about the pump when you get it. It seems to be a good option.

[pearlette]

Diagnosed 7 years ago.

Clearly sympomatic 9 years back.

Lost sense of smell 15 years ago ; around the same time fatigue plus slightly stiff achy calf muscles

Subtle symptoms since childhood at 7 or 8 years of age while still a wild adventurous child.

Sure will let you know when pump materialises.

Where are you based ?

[Rupa88 in reply to pearlette]

Canada

[jeffreyn]

Can you say a bit more about these "multiple types of dyskinesia"?

I tend to think of dyskinesia as having two basic forms, choreic or dystonic.

[Rupa88 in reply to jeffreyn]

It starts 1.( hours after medicine intake , Teeth grinding, head bobbing, my index finger pushing hard against my thumb, choreic mainly and then my toes curl and feels like something grabs my shin so I can not walk on treadmill at the peak of medication effect, 2.5 hours after intake of meds it seems that a light turns off inside me and I am dead tired.

[jeffreyn in reply to Rupa88]

Thanks.

Have you tried taking half a C/L 25/100 mg six times a day?

[Rupa88]

i will give it a try again

I trued once and it seemed very low dose and was not helping my symptoms at all

[jeffreyn in reply to Rupa88]

In that case, if it was me, I would then experiment with three quarters of a tablet. It is not too onerous if your tablets are double scored and you have a good pill cutter.

[limcheeese22]

why not try lower dosage and more frequent?

[Rupa88 in reply to limcheeese22]

I tried once and it seemed very low dose and was not helping my symptoms at all

[jeffreyn in reply to Rupa88]

See above