Effective medication for dystonia as first symptom?

[BlockRuys]

Hi there, I am in my 30s and experience "exercise-induced" foot dystonia as first symptom to Parkinson's. It has gotten to a point that I cannot walk or exercise for longer than a few minutes before my foot starts to act up.

Botulinetoxine works a bit but not enough as new muscles seem to act up when others are shut down.

I want to start medication and would prefer to start with Rasagiline (trying to postpone Levodopa) but doubt if it does anything for dystonia. There is very little resource on this.

Any experience from anyone with levodopa, antagonists or mao-b inhibitors as a way to suppress dystonia as preceding PD symptom?

[PixelPaul]

I have the same experiences as you. I rarely have foot dystonia at rest, but after about 5 minutes of exercise my foot dystonia starts up and it is very painful and debilitating. My doctor has suggested that I try Botox, but I'm not interested in that. What works for me is to take 1 C/L (100/25) about an hour before exercise. Doing so allows me to get in a 60-90 minute workout of running, biking or xc skiing (depending on the season). This is effective for me about 99% of the time.

As for you wanting to postpone levodopa, this is a very common myth in the PD community that has been largely dis-proven. There is no benefit to delaying the start of levodopa. Furthermore, it is my belief that taking C/L which allows me the benefits of 60+ minutes exercise a day far outweighs any negative aspects of taking it. Good luck!

[BlockRuys in reply to PixelPaul]

Thanks Paul! Do you take C/L only prior to exercise or also regularly?

[PixelPaul in reply to BlockRuys]

I take my C/L "as needed". On most days that's just the one tablet needed for me to control my foot dystonia during exercise. But occasionally I have days where I wake up and just feel "off" with some of my symptoms being worse than normal. On these days I will take additional C/L, but thankfully these days happen only about 2-3x a month.

[BlockRuys in reply to PixelPaul]

Thanks. I tried 1 C/L 50/15 once but it didn't do anything. Good to hear that as-needed may work. Will try a higher dose.

[park_bear in reply to BlockRuys]

There is a threshold effect. I'm pretty sensitive to levodopa but 50 mg has never been enough. 100 mg works for me - C/L 25/100 ER. ER means time release which works best for me, but that varies with the individual.

Also, I confirm and emphasize: "to postpone levodopa, this is a very common myth in the PD community that has been largely dis-proven. There is no benefit to delaying the start of levodopa."