Mum has late stage Parkinsons and unfortunately is now quite bed ridden. She suffers from Rigidity in her neck and hands. I would love to hear about any medications that may have been used that have offered some relief in this area.
Thank you Kindly!
Rigidity - dystonia - is a Parkinson's symptom but can also be a symptom of overmedication. What is her current medication regimen? When is the rigidity at its worst in relation to when she takes her medication?
Many Thanks for your reply . We haven’t changed mums medication. She takes Madopar 125mg 5 times a day . 7am- 10am-1pm-4pm -7pm. Her speech has also deteriorated .I would love any feedback you may have ParkBear!!
I was going to suggest possibly not enough of the medication. We do progress as time goes on and need to meet that need with more meds. I have muscle spasms and dystonia and what helps is the carbidopa levodopa. Good luck!
How quickly did she increase to that, how long has she been taking that much? When did she start taking Madopar? Is that the slow release or the instant release Madopar?
Is it possible she is over medicated? My hubby was suffering severe rigidity after medication was increased when he was put on the madopar slow release 5 x per day exactly like her and now having reversed it and going back on to the instant release tablet he is 95% improved.
If she is on the slow release could she be swapped on to the instant release tablet of the same dose then try gradually reducing the amount by shaving a little off each tablet. Maybe even just take 1/2 instead of a whole one at 7pm.
Does she wake up immobile in the morning and need a dose before she can move? Can she move in the night if she gets up? If she can get around before her first dose and can get up in the night she might be making a little of her own still as it is at a peak at midnight and low at mid day. So if her natural cycle is boosting her a little at night she might be not needing a full night dose. She has a 12 hour gap from 7pm to 7 am so if she doesn’t need one in the middle of the night this might be the case.
(I’m not a medical expert just been through this exact same thing with my husband and it was over medication . The nurse said he was under medicated but now he is on 3 1/2 62.5mg tablets instead of the 5x 125 mg and is so much better. )
Also is she sundowning ie getting extremely agitated and confused as the night goes on? I believe that is also caused by the rising natural dopamine overlaying all the tails of the doses of madopar from the day pushing dopamine to a level high enough to cause mania. Now hubby’s dose is reduced he is not doing this at night any more and has become quite normal again.
Hello, We only increased mums 10am dose from 125 mg to 185mg.. dose of Madopar . Mum takes a slow release at 7pm. I will certainly look into reducing the Madopar very gradually to see if we get a better result. Thank you so much for this valuable information!
Is she rigid all the time or at about 90 minutes after the dose?
Has she been on the slow release long?
With the slow release the dose peaks after about 1 1/2 - 2 hours but a lot remains in the system so each subsequent dose adds on to the previous tail so by the end of the day you have multiple doses overlaying each other with the peak from the new dose getting higher and higher each dose because it has the tail of the other doses boosting it up.
Here is a graph I did to illustrate it. The top line is the point where dopamine is so high it causes rigidity, the bottom line is where it is too low so there is a wearing off effect.
How long has she been on the slow release? It takes quite a while to build up in the system and also to reduce. I would take that extra morning amount out too especially if she hasn’t been taking it long.
I notice on an earlier post you said she is struggling to sleep. My husband was as well and was beside himself at night but now his madopar is reduced he is sleeping very well.
We have found that removing as many medications as possible has made him feel very much better so I would be wary adding another medication to treat the side effects of the previous one as it will likely have its own side effects. Also consider that any medications she is on might be the same dose as a large man might get so maybe she could do better on lower doses of other things too. Try and write a timetable of when meds were added and what order they were added and when symptoms appeared. You might be able to wind backwards reducing things one at a time in the order they were added.
Each medication has a sweet spot for an individual, too much or too little they won’t feel as good. The same dose is often given to everyone .
Hubby can only tolerate 1/4 of most doses of medications so I always start at that amount.
Is she constipated too? He found reducing the madopar fixed that too.
The one thing that does help and he doesn’t react badly to is a tiny dose of clonazapam 1/4 morning and afternoon and 1/2 x0.5mg before bed. There is a condition called stiff man syndrome that is improved by benzodiazepines like clonazapam and it did help him with his anxiety but go low!
I propose comparing stiffness at the end of the day versus upon arising to differentiate between overmedication versus undermedication:
Stiffness worse at end of day -> overmedication
Stiffness better at end of day -> undermedication
Yes, I think you get more and more medicated as the day goes on as each dose adds to the last, especially if you are still producing a little of your natural dopamine.
Would you give more detail please? At what level would indicate a good dosage if evaluating both over medication and under medication both at the end of the day. Thanks.
I usually get distonia in morning when wake up. Now since I’m started used apomorphine infusion 24/7 days never had more distonia.Hope helps information
i take oxycontin for rigidity...it helps me breathe and relaxes my muscles and normalizes my BP. hang tough!
That’s interesting to hear.. Thankyou so much!!
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