Dyskinesia : Hi, I am a long term... - Parkinson's Movement

Parkinson's Movement
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Dyskinesia

jag73
jag73

Hi,

I am a long term sufferer from PD (15yrs) and take regular doses of Madopar and mucuna. My mornings are manageable but early and late evenings I experience terrible dyskinesia after which I feel totally drained. Has anyone found something that would benefit me please?

31 Replies
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If these are peak dyskinesia try cutting back on your c/l dose. Or you could also try c/l CR or Rytary which will have lower peak levodopa concentrations...

And I don't know that much about mucuna, but I guess it might not be the best choice if you have had PD for 15 years, and probably have a narrow therapeutic range...

This sounds like levodopa induced dyskinesia.

It is common for the graph of levodopa levels to follow a saw-tooth pattern which is gently rising during the day. This is because each dose is being taken at a higher starting point than the previous one. When a high enough level is reached levodopa induced dyskinesia starts.

To see what is happening, use:

parkinsonsmeasurement.org/toolBox/pharmacokinetics.htm

If this is LID, I would start with a small change to my drug regimen, making my last dose 10 minutes later and see if this is reflected in the time that the LID begins and its magnitude. You can then step-by-step make small changes to the regimen to reduce the dyskineasia.

JohnPM's advice... OR maybe it's time for you to try FUS PTT Swiss... If you can afford it or if New Zealand health care (insurance) can cover it for you…

While I agree that cost might be an issue nonetheless at your stage of PD and with the complications you are having, you should give FUS PTT a serious thought

laglag
laglag
in reply to Grumpy77

I have seriously thought about FUS. I couldn't find a lot on cost. I saw one thing that said approx, $40k ??

Grumpy77
Grumpy77
in reply to laglag

Get in touch with MBAnderson, I think he says it costs 35,000 Swiss francs

I don't know if that excludes/includes hotel bookings, transportation, preliminary assessments... So get in touch with him for the details

Oh, I've also been reading that the treatment procedure is more suitable for and targeted at tremor dominant PD

Davewt47
Davewt47
in reply to Grumpy77

What is FUS?

Despe
Despe
in reply to Davewt47

Focused Ultrasound.

lenamm
lenamm
in reply to Grumpy77

The 35,000 is just for the procedure/diagnostics and PTT treated more than tremor dominant.

Amantadine may help.

I take GOCOVRI which is an extended release amantadine and it works pretty well controlling dyskinesia. It's expensive they sometimes give you a big discount. I get mine for $20/mth.

10 years into the disease, I suffered horrible dyskinesia. I was exhausted and losing weight I couldn't afford to lose. Amantadine did not help. I decided on DBS surgery. It is finally under control. I highly recommend it if it is available to you. Find a very experienced surgeon in this procedure, and you should be fine. If you have any questions, feel free to ask.

MarionP
MarionP
in reply to Jebbie12

Does DBS preclude future FUS PTT?

Jebbie
Jebbie
in reply to MarionP

I’m not really sure. But while exploring my options I asked someone greatly involved in the parkinsons community and friendly with many of the best docs, and she highly recommended NOT getting the guided ultrasound. If they miscalculate and zap the wrong spot, you’re screwed. It’s permanent. DBS is not.

MarionP
MarionP
in reply to Jebbie

Screwed how?

Jebbie12
Jebbie12
in reply to MarionP

screwed because it's not reversible. less risk with DBS.

MarionP
MarionP
in reply to Jebbie12

Sounds like the only risk is that it doesn't work then. So it's mainly the money risk, right (I assume if there were other risks you'd have said so)?

And do your acquaintances mention what is the risk of it not working (what they refer to as "failure rate")?

Jebbie
Jebbie
in reply to MarionP

I haven’t heard of anyone who had no response to DBS. But all surgery has some risk. A seizure or stroke are possible. My doc had very few complications. I wasn’t worried. And the relief is so wonderful! I’ve gained much needed 10 lbs in a month! Would do,it again even though the first month was not good.

lenamm
lenamm
in reply to Jebbie

I know a number of people where DBS has failed or made them worse. I know no one who got worse with PTT. Plus the only people I know who had DBS removed are in horrible shape. It is "reversible" but at high cost to well being.

lenamm
lenamm
in reply to Jebbie12

If you look at side effects and failure rate much higher with DBS than PTT

lenamm
lenamm
in reply to MarionP

If you have DBS you can not have PTT

tjsmith52
tjsmith52
in reply to Jebbie12

Did you have STN or GPI?

Jebbie12
Jebbie12
in reply to tjsmith52

STN. Have you had DBS?

tjsmith52
tjsmith52
in reply to Jebbie12

No...but I’ve been approved for GPI...

jag73
jag73
in reply to Jebbie12

Thanks for you feedback. I did go through the testing process for DBS but failed on the cognition test

Hi Jag, I wish I could help. My husband was diagnosed with Parkinson's by a neurologist only two months before he died at 81. Our family practitioner had, many years before, suggested that his shuffling gait was an indication of Parkinson's but gave him no advice or medication. He had been seeing a neurologist for years. The fact that he had been an ardent marathon runner also for years kept him going and none of his doctors seemingly felt it necessary to diagnose or to intervene. Finally when the PD got the better of him, the neurologist tried first Sinemet and then Madopar but they each sent him into a deep sleep even at low doses. I reduced the dose of Madopar further but he had become old and frail-- and also discouraged because he could no longer run.

None of this can be helpful to you or to anyone, I'm afraid, but I received an email from HU asking if I could assist you.

My best wishes for a solution to your dyskinesia.

Mitzi

I'm fairly new to this forum, so I'm not sure what the overall attitude towards thiamine HCL (high-dose vitamin B1) is, but have you tried it? I don't take any PD meds yet, but B1 has helped me dramatically, and I've heard from others who do take meds that it has brought significant improvements regarding dyskinesia.

jag73
jag73
in reply to 1LittleWillow

I have tried thiamine 500mg/day for a time but was concerned it could be contributing to the dyskinesia so am having a holiday for a time and may try a lower dose.

1LittleWillow
1LittleWillow
in reply to jag73

Good idea. I took one gram per day for a year, but recently had to lower it to 500 mg per day. I know some people are using as little as 100 mg or 250 mg a day with great success, while others need 4 grams to see the same benefits. Definitely not a one-size-fits-all protocol.

Thanks for that feedback. It makes sense to me and will work on the info you have given

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