Questions about dystonia.
 

Hello to all. I have not posted in a long time but I am usually checking in to find out how everyone is doing. In the last year I have had fluctuations in my meds and have to take the doses closer together. I take Requip and Sinemet every 3 hrs. My worst symptom is dystonia which seems to start at end of dose and often shortly after taking a dose. I was reading an article about dystonia that says that it may develop as a complication of therapy for PD, occurring secondary to the administration of L-dopa. Is it possible that I am making it worse by increasing the frequency of taking meds throughout the day? The dystonia is bad at times and I am getting more confused as to whether I am taking too much or not enough. I would appreciate any input from all of the experienced PWP.

Hi Evon,
Sorry to hear about your problems with dystonia. Like you I had wearing off problems, for me this was really right from the beginning of taking levodopa, and it took a while to sort out. By this I mean a few years! Wearing off dystonias, my PD nurse specialist told me, are caused mainly by two things, being undermedicated, or fluctuations. My neuro always went with the fluctuations thing, and altered dosing and encouraged me to be very strict on timing. This didn't work for me, but the PDNS brought a different idea in - she thought not enough levodopa was actually getting to the parts that matter, and suggested entacapone (Comtan, Comtess). At the time I was getting excruciating foot dystonia as well as other uncomfortable but less acute dystonias. I now only get really nasty ones early in the day after a night with no medication. We also looked carefully at protein consumption during the day - I admit to being useless at this, and always get a knockback effect (and a return of dystonia) if I have too much easily absorbed milk protein. I can't really advise on this, as it is, I believe a matter of trial and error, to find just the right balance, and even then on 'bad' days, or when you don't quite get things right the dystonias return. There are so many factors that affect how we experience PD, loads of room for improvement in treatment. Once on entacapone I had to back down on sinemet to just the right amount. This gave me an insight into when and how to take my meds. For me it was about poor absorbtion and bioavailability of levodopa in the brain, for you it might be something different. Best wishes getting it sorted out.

Lindy

If you could take Requip XL once a day instead of regular Requip every 3 hours, it would help with your meds wearing off. It is more expensive, but I think it is well worth it. I take Stalevo and Requip XL. I used to take Stalevo 50 and it would wear off and I would get a stiff neck and foot cramps. At first my doctor just had me increase the Stalevo to 4x a day and to increase the dose for two of those times. Now I take Stalevo 125 - 3 x a day and Requip XL 12 mg once a day and I am doing much better.

(Stalevo has carbidopa, levodopa, and entacapone.)

Thank you both Lindylanka and Chicory for your input. Its always good to hear from people who have had to deal with the same type of problems. I will take your ideas to my MDS on my next visit. At times I am willing to try anything to relieve the painful cramping. I don't come across too many PWP who have dystonia so I thought I would check out this forum, everyone here is very helpful.

Me, too.
 

I have the same problem. Seeing a new neuro tomorrow...we'll see what he thinks! Ibby