Dyskinesia Question : I was officially... - Cure Parkinson's

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Dyskinesia Question

Wilso77 profile image

I was officially diagnosed with PD at 44yrs old and have been taking 1 x tablets of Sinemet Plus 25mg/100mg three times daily at 12pm, 3pm and 6pm for the past year since diagnosis. I have gait issues including dropfoot which disappeared with the meds however over the past couple of months I've started developing dyskinesia. Can dyskinesia develop so quickly all of a sudden in such a short space of time when my dosage hasn't changed? Could I be doing something wrong or is this just my unfortunate reality now and I'm just one of the unlucky ones who develops dyskinesia this early? Any advice would be very appreciated. Thank you!

37 Replies

Dyskinesia.Reduce occurrence and severity.

Keep your single dose to lowest levodopa.

Try to stay below 300mg.

Keep the doses separated. The levodopa level of previous dose should be expended. Otherwise your likely to add levodopa... Ex: 100mg remaining in previous dose plus 300mg in next dose.

Total daily mg not cause or affect.

Read my, Roy, comments following this post....Levodopa is active for two hours. After which your body is free of levodopa resulting low risk of dyskinesia. Amount in a single dose, not daily cumulative, is root of dyskinesia.

Book - Managing PD Midstride:

"The most common kind of dyskinesia is “peak dose.” This occurs when the concentration of levodopa in the blood is at its highest – usually one to two hours after you take it. This typically matches up with when the medications are working best to control motor symptoms."

Thiamine hcl may also reduce risk of dyskinesia.

One takes 100mg per dose. 8 doses per day. Or

One takes 400mg per dose 2 doses per day.

Each provide 800mg total per day.

Your risk of dyskinesia is lower at 100mg per dose while maintaining the same high dose day. Multiple low dose protocol allows higher daily levodopa.

Reference: Mayo Clinic. “Cheaper, Simpler, and Better: Tips for Treating Seniors With Parkinson Disease”

J. Eric Ahlskog, PhD, MD

Note: 25/100 IR Single dose max is three and a half tablets. Then you take as many doses required in day and nite that keeps you on. Dyskinesia only results from the last single dose. Not the day total.

Carbidopa levodopa is the premier, go-to drug. Instant release is preferred.

You may need two and 1/2 tablets in a single dose. Three tablets even. Three and one half tablets being the limit of effective treatment. Any number of total daily doses. One hour, three, four hours apart.

I was paralyzed until I moved my dose up to two tablets in a single dose, four hours apart day and night.

Required Reading Book List for Advocates of their own health.

Number One:

“The New Parkinson’s Disease Treatment Book” Second Edition, 2015

Dr. Eric Ahlskog,

Chair of Movement Disorders

Mayo Clinic, thirty-years experience.

gginto profile image
gginto in reply to RoyProp

Great info!

Wilso77 profile image
Wilso77 in reply to RoyProp

Thanks Roy. Sorry for being slow but I don't understand what the above is advising. Does it mean that i should increase my daily dosage to 4 x 1 tablet instead of increasing my single dosage amount?

RoyProp profile image
RoyProp in reply to Wilso77

Single dose max is three and a half tablets. The single dose should be minimum that works. Then you take as many doses required in day and nite that keeps you on.

Wilso77 profile image
Wilso77 in reply to RoyProp

OK understood thanks Roy 😊

I was dxd 5 years ago and take 4x100/25 cl per day and I do not have that problem. What is a little weird is the time you take the pills; usually I take them about 5 hours apart but you take them 3 hours apart and then make a big break; that may make your cl level jumpy which may cause dyskinesia. Who decided you should take them at those times? The idea is to have steady cl level in your brain.

Wilso77 profile image
Wilso77 in reply to ion_ion

Thanks for your reply. My neuro consultant suggested the timings initially. I have tried spacing out the times more but my leg starts dragging after 2.5-3hrs so unfortunately every 5 hours won't work for me. Maybe i need to increase my daily dosage by 1 further tablet and see how i get on.

I'm sorry to read this. I would make an appointment with my neurologist as soon as possible if I were in your position. Hopefully your neurologist will find a solution.

Wilso77 profile image
Wilso77 in reply to jimcaster

He suggested i add Amantine but i'd like to avoid adding more meds if at all possible.

Cagey84 profile image
Cagey84 in reply to Wilso77

I take amantadine and it works great. It also has its own anti-Parkinson’s effects. Please don’t worry about taking more meds, focus on the extra quality of life. There’s a good saying I heard - “don’t look after the umbrella when it’s raining”.

I developed dyskinesia after four months on low dose c/l. You could try spacing your doses differently or taking 1/2 doses more frequently but, sadly, you may be one of the unlucky 15% who develops dyskinesia early.

The simplest thing to try is increasing the time between doses (as ion_ion and Juliegrace have mentioned).

When that doesn't work anymore, you could try halving the dose and taking it twice as often (as Juliegrace has mentioned).

When that doesn't work anymore, there are drugs such as amantadine that may help.

That is the stage I'm at now. At my next visit to my neuro I'll probably get a script for amantadine to give it a try.

jeffreyn profile image
jeffreyn in reply to jeffreyn

Another thing you could try is lowering each dose to three quarters of a tablet (you will need to have double-scored tablets plus a good pill cutter). If your dyskinesia disappears and your gait issues don't re-appear, you're all done already (at least for a while, anyway).

Wilso77 profile image
Wilso77 in reply to jeffreyn

I've tried reducing each dosage by a quarter but its like i haven't taken any CL at all when i do that and my symptoms don't improve unfortunately.

Wilso77, My husband has been diagnosed for 5 plus years now and Sinemet made a big difference with him too, but when the tremors (do you have them?) became more, the Dr increased the dose of Sinemet and the dosage was too much for my husband. His body can't tolerate much of the medication. However, more doses closer together seem to help. He's on Rytary now which is a more extended CD/LD, but even with that, he has to take another dose within the 4 hours time frame.

In answer to your question, yes Dyskensia can start up quickly depending on a lot of factors. My PWP it was too much medication at a dose time.

You'll receive a lot of good information on this site and you will have many suggestions to maybe act on

Take good care and let us all know how you do on this "journey"

Thanks for your reply. I don't have tremors yet thank god my main symptoms are uncoordinated walking and stiffness on my right side. I'll look through the site for more info. Thanks again.

I realize nobody has the 'silver bullet' but naturopath Dr L Mischley in Seattle can share tips & tricks for potentially easing dyskinesia.

May I ask if you are taking High Dose Thiamine? Are you diagnosed with Idiopathic Parkinson’s disease?It would be helpful if you could share supplements you are taking.

Wilso77 profile image
Wilso77 in reply to Kia17

No i'm not currently taking any supplements. I was taking far too many (20 a day) and started to worry that i didn't know what was and what wasn't working so decided to give my liver a short break. I was diagnosed with EOPD by letter after my DAT scan 'idiopathic' was never mentioned but i'm guessing if idiopathic means that they have absolutely no idea why i have PD that then yes i have idiopathic PD.

Kia17 profile image
Kia17 in reply to Wilso77

Have you done any genetic testing even with 23andme or AncestoryDNA? Any ideas of your MAO A and MAO B and COMT genes. These genes with low activity keep the neurotransmitters including Dopamine and nor epinephrine to remain your body more than it stays in normal people. They are ways to fix these issues if you have one and to reduce dyskinesia.If you haven’t done genetic testing answer to these questions may also do the same job;

Do you handle coffee or green tea without being restless?

Have you ever been told that you are Estrogen Dominance?

Hope these help.

Ps: Do some research on High Does Thiamine as our friend Bass suggested.

Wilso77 profile image
Wilso77 in reply to Kia17

Very interesting! No i've never done any genetic testing however my consultants office took a large blood sample from me a couple of months ago which may have been for genetic testing i'll ask them. In response to your questions no i do not handle coffee without being restless and also am very sensitive to drugs of any kind. I've never been told that i'm Estrogen Dominant. Will deffo start back on the High Dose Thiamine asap. I feel trapped no matter what route i take only 1 year since diagnosis which is so depressing. If i take Levodopa no matter how small an amount i get Dyskinesia and if i don't i can't walk unaided which isn't much of a choice at 44 yrs old with a 3yr old child to look after :( thanks so much for taking time out of your day to reply Kia17 its so appreciated x

Kia17 profile image
Kia17 in reply to Wilso77

It’s highly unlikely that the blood test was genetic testing since they are done with saliva.It’s likely that you are having the slow MAOA - MAOB or COMT since you are not handling coffee without being restless.

Please read this article. It’s very helpful:

seekinghealth.com/collectio...

bassofspades profile image
bassofspades in reply to Wilso77

Hi, will you please do us a favor? After about a month or two of taking your Thiamine, will you please post a follow up and let us know how you are doing? Thanks!

Wilso77 profile image
Wilso77 in reply to bassofspades

Off course no problem 😊 👌

The same with me. I guess we're just unlucky. Had Parkinson's since March of this year. Learning a lot new every day and fighting hard as I can.

Wilso77 profile image
Wilso77 in reply to CarolFroberg

Guess we are. Best of luck and sending you big hugs x

I've been doing this: healthunlocked.com/cure-par...

As a side note, I exercise almost daily (and push it speedwalking) and I notice the tremors subside when I do-- when I miss exercising, the tremors increase.. So I haven't had to increase C/L, thankfully (which causes dyskinesia) might have something to do with exercise raising the beneficial BDNF in the brain?

I Agree with Roy- keep single dose to lowest Levodopa, as long as possible.

The general rule is to have the least amount of levodopa possible that gives you the best possible quality of life. No one can really advise you on that. Not even your neuro. unfortunately it's up to you to figure out what works best for your body. Everybody is different. Dyskensia is generally a sign that your getting to much levodopa and your peaks are too high. Maybe try lowering the dose a little but taking it more often.

Thanks for your input.

Hi, I was diagnosed at age 45 almost 6 years ago! What a journey. I hate dyskinesia! It definitely happens to me if my dose is too high. I always take maybe a half or a quarter Sinemet (25/100 mg) pill when I feel like I need it. I think a full pill would send me into a dyskinesia hell! It’s definitely too high of a dose for me at once. So I find it helpful just to kind of nibble at a pill over a period of time to have a slow but steady input of l-dopa. I’m not on a strict schedule. I find the effects of Sinemet kicks in about 15 or 20 minutes after I take it, so I just take a bit when I need it. I take about 1 tablet a day this way. I also take Mucuna Pruriens, an herbal source of l-dopa. I balance dealing with the symptoms of Parkinson’s, mainly stiffness but also a drop leg like you mentioned, with having too much medication. Sometimes I’d rather just deal with the symptoms than with having too much medication and dealing with dyskenisia. I recommend you play around a bit with your dosage and perhaps medication. I’ve also been prescribed Rytary and amantadine which I take twice a day. I’m probably a neurologist’s nightmare with not being on a strict medication schedule, but I think you need to listen to your own body. I am managing pretty well with my ad hoc system!

Capsules instead of tablets along with a protein redistribution diet may help.

I see that my good friend Kia17 has mentioned it, so I will expand...

From our late, great beloved Dr Cosentini:

highdosethiamine.org/

"We observed that the right dose of thiamine can lead to an improvement of the symptoms between 50 and 80-90%, but in order to push towards the complete regression of the symptoms the correct dose of l-dopa should be coupled to power the dopaminergic motor circuits. L-dopa then shall no longer lead to dyskinesia if used together with the high dose thiamine."

my friend, I suggest strongly that you read everything there is on this site. It has been discussed at great length on this forum and a multitude of Parkinsons sufferers have had tremendous relief with Dr Cosentini's Thiamine HCL Protocol. Me included. Very safe!

Wilso77 profile image
Wilso77 in reply to bassofspades

Ok thanks so much for your reply. What i'm trying to work out is if i'm taking too much per dose or too little. I've experimented with decreasing and increasing my dose and neither seems to make a difference to the dyskinesia so i'm at a loss as to what the correct l-dopa dose is. I was taking B1 a few months ago but ran out so i will definitely start the protocol again.

bassofspades profile image
bassofspades in reply to Wilso77

The right amount is the amount that makes you the least symptomatic, but dyskinsia is a well known side effect, as you know. Have you been on sinemet for a long time ? Several years? That might be the reason. Did you have this problem while you were on thiamine? Remember, it takes at least a month to work, assuming that you are taking the right dose of b1. Good luck my friend !

Edit: sorry, now I see that you have been on it a short time . Everybody has a different experience with Parkinson's disease . That makes it tricky.

tjsmith52 profile image
tjsmith52 in reply to Wilso77

Some people get dyskinesias on a low dose…it’s called diphasic dyskinesias

jeffreyn profile image
jeffreyn in reply to tjsmith52

This is a good point.

Here is a relevant quote from the Parkinson's Foundation website: "Diphasic dyskinesias are associated with relatively low doses of levodopa and, unlike peak-dose dyskinesias, tend to improve with higher doses of levodopa."

So maybe your earlier thought to try an extra pill was not so far off the mark.

Maybe you could read up on dyskinesia, to help you determine what sort you have, and also maybe ask your neuro to help.

parkinson.org/Understanding...

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