Anxiety & Dyskinesia: My wife was first... - Cure Parkinson's

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Anxiety & Dyskinesia

thfc1961 profile image

My wife was first diagnosed about 10 years ago and has been taking Sinemet for about 5 years which has kept her Bradykesia in check and allowed her to live a reasonably normal life.

Of late though she has started to experience random short attacks of involuntary and uncontrollable movements of her body mainly in her feet and legs (dyskinesia) that occur without rhyme or reason at any time of the day and in the evening.

Her Parkinson’s nurse first felt that his might be because her Sinemet medication was beginning to lose its effectiveness or that the attacks might have been around the times she took her dosage.

As a consequence she prescribed Sinemet PR (slow release) before bed time to complement her exiting medication regime and this seems to have reduced, though not eradicated the frequency of when my wife experiences occurrences of dyskinesia

Her nurse is now of the opinion that the dyskinesia is being caused by anxiety/stress and tiredness though my wife is adamant she does not experience this She is quite an active person and is trying to balance activity and relaxation periods during the day and go to bed earlier.

I have noticed though that if she has social interactions (via WhatsApp /Zoom or face to face) with friends or family that she sometimes gets an attack and the last couple of times we have been to do the weekly shop it has occurred.

Does anyone else have similar experiences as my wife and are there drugs you could recommend that have helped you to address anxiety that could be added to her medication regime which is as follows.

Sinemet Plus 25mg/100mg 56 tablets to be taken daily at 7.00am

Sinemet Plus 12.5/50mg 280 tablets to be taken 4 times a day (11.00am, 13.30pm, 16.30pm, 19.30pm)

Razagaline 1mg 56 tablets to be taken daily

Spiroco 8mg 56 tablets to be taken daily

Cocareldopa 12.5mg/50mg 280 tablets to be taken 4 times a day (11.00am, 13.30pm, 16.30pm, 19.30pm)

Half Sinemet CR 25mg/100mg 60 tablets to be taken at 22.00

14 Replies

I'm a little confusaed. Your wife is taking how many total pills each day?

Does she also have any of these other symptoms?

Agitation or restlessness

Confusion

Rapid heart rate and high blood pressure

Dilated pupils

Loss of muscle coordination or twitching muscles

Muscle rigidity

Heavy sweating

Diarrhea

Headache

Shivering

Goose bumps

thfc1961 profile image
thfc1961 in reply to laglag

8 tablets a day. The Cocareldopa are only taken are only taken if Sinemet 12.5mg/50mg are not available. The Sinemet is to control Bradykesia (slowness.stiffness). The only dyskinesia symptom she suffers is involuntary, uncontrollable movement of limbs that occurs on average for about an hour every third day though there is no regular pattern. It can happen on 2-3 days but then not occur at all for 4-5 days

I have this Dyskenisia only more often.

ConnieD profile image
ConnieD in reply to laglag

Lag lag are those all symptoms of too much cd/ld in your system I’m assuming? 😊

laglag profile image
laglag in reply to ConnieD

ConniD, yes they are.

>Her nurse is now of the opinion that the dyskinesia is being caused by anxiety/stress

Nope. Caused by excess dopamine. Sinement CR (not PR) less likely to cause it than Sinemet IR. See here for detail: healthunlocked.com/cure-par...

Looks like repeated typos in your post - large numbers preceding use of the word 'tablets'

thfc1961 profile image
thfc1961 in reply to park_bear

Thanks Park Bear.

My wife started experiencing dyskinesia around December and was told by a less than tactful nurse that there was nothing that could be done for as there was "no magic wand" and that it was up to her to decide whether she preferred to suffer from "Bradykinesia or Dyskinesia".

We were both upset by the bluntness displayed by the nurse and I sought a second opinion from her boss (who also happens to be my wife's regular nurse) who suggested her dosage be changed from

Sinemet Plus 25mg/100mg 7.00am, Sinemet Plus 12.5/50mg 11.am 13.30pm, 16.00pm 18.30pm and 21.00pm dosages by lengthening the time between of the 12.5/50mg tablets so that she is now taking them at

11.00am, 13.30pm, 16.30pm, 19.30pm and replacing the 21.00pm one with Half Sinemet CR 25mg/100mg tablets at 22.00pm

This has lessened the occurrence of dykinisea attacks my wife has been experiencing by about two thirds though they come unbidden and at random with no rhyme or reason.

I guess as with everything else with PD everyone's experiences are different the only constant being that the Sinemet eventually loses its effectiveness.

Anything else you would suggests she takes or does to complement her new meds regime. We are in the UK and some of the meds mentioned on here are not known of on this side of the pond are are branded differently

Thanks again

Cagey84 profile image
Cagey84 in reply to thfc1961

Amantadine has worked very well in dampening down my dyskinesia

Smittybear7 profile image
Smittybear7 in reply to thfc1961

I take 1 c/l(25-100) every 8 hrs and 5 mg baclofen twice a day. I experience mild dyskinesia about 21/2 hrs after the c/l. Amantadine was recommended but the side effects look worse than the dyskinesia. I don;t experience that at night. However right b4 my morning does my tremors seem worse. I take im c/l.

Should have read

Sinemet Plus 25mg/100mg to be taken daily at 7.00am

Sinemet Plus 12.5/50mg to be taken 4 times a day (11.00am, 13.30pm, 16.30pm, 19.30pm)

Razagaline 1mg one tablet to be taken daily

Spiroco 8mg one tablets to be taken daily

Half Sinemet CR 25mg/100mg tablets to be taken daily at 22.00

I'm confused by the amount thats being prescribed. Sinemet is only a brand name for co-careldopa

thfc1961 profile image
thfc1961 in reply to Allypally49

I understand that. But my wife’s PD nurse insists Sinemet is the Rolls Royce of cocareldopa and as a consequence prescribes for my wife specifically rather than other brands.

ThfcThe mystery of why dyskenesia some days and not others will occupy you and your wife over the years ahead I suspect. It will be to do with meds timing, gut motility, what she has eaten , whether she drank water and how much and when and random stuff ( if you find an answer do tell).

It is related to the levadopa and in my experience I have adjusted my med dosage timing independently a little at a time. But it is complicated (so dont do what I do) so a diary of med timings and dysk episodes may pinpoint a pattern. For instance dyskenesia may occur at peak dose, it does for me. Made worse or better by meal timings etc. Timing of other meds in particular spiroco. At the moment it is 21/2 hrs between meds, does she need them that frequently, how would she be if there was a 3 hr gap. It really is a juggling act. All the best. Oh and dont listen to anyone who says its stress related, blaming the patient!

PS i take amantadine x2. But again i would prefer to adjust dosage or timing.

I'm almost at my wits end.

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