My wife has Parkinson’s disease that was diagnosed in May 2007 and now has twisting movements of severe dyskinesias. Taking carbidopa/levodapa (C/L )25/100 two tablets every 4 hours. Once a day taking 1mg Azilect and a 6mg Neupro patch.
Generally getting 2hours or less of good time after the C/L takes effect. After that having intense pain that lasts many of the times until the next C/L dosage takes effect. Extreme muscle contractions for 1 to 1.5 hours that feel crushing(happens in legs, abdomen, shoulders, neck, intestines – not all at the same time but many times in combination). Spending around 9 hours or more in this pain every 24 hours. Husband massages these various areas to get some temporary relief and walking around sometimes helps. Been to see neurologist and emergency room twice and no one gets the intensity of the twisting and pain. We have not been given anything for these painful times. We need help and need it now because we are unable to continue much longer.

Tell the people here where you are living and they may hae some help for you.

If your drs aren't able to help or understand your pain, then it might be time to find a more PD knowledgeable dr..or just a more caring one.. one that will try to help you..

Sorry for your wife that she has to live in such a pain. My situation is very similar - only left side is affected, but the cramp and excruciating pain was so strong that I was just weeping.. Actually I am better since, this is what has helped:

1. Carbidopa/levodapa (C/L ) 25/100 every 2 hours.

2. Physiotherapy sessions that includes stretches, forced exercises, manual therapy, and acupuncture. Daily exercise program. Stationary bike for 20-30 min/ at least 4 x week.

3. Take my meds in a liquid form: Dissolve a tab of C/L in carbonated mineral water, this ensures the med kicks in in 10 - 15 min, instead of 1 hour.

4. Eat very small meals (no bigger than the size of the fist).

5. Drink 2 liter of liquids and maintain humidity in the house at 50, which is difficult during cold winter months with a furnace on.

6. Take high absorption liquid magnesium.

7. Sometimes when the med didn't kick in and I am in severe pain, I either stretch/tense the affected muscles, walk about, lay down on the floor or sit in the rocking chair, and try to relax the brain by listening to the Guided Meditation and following the breathing exercises. TheHonestGuys are the best out there, I have found them on YouTube. This meditation really helping me.

8. In addition I got an appointment to the Pain Management Specialist (MD).

Hope your wife gets better soon!

Best wishes,
Natalie

Natalie gave good advice.
Just thought I'd add to that by emphasising timing of meds.
The 4th hourly schedule of 200 mg levodopa if its changed to 100 mg 2 hourly is still what Dr ordered in a daily dosage but given more frequently in smaller doses I think will benefit both the dyskinesia and what sounds regarding the pain like dystonia.
It'll give a more consistent steady supply in the body than a big hit of levodopa occurring at same time causing the dyskinesia and then not enough causing the dystonia.

This should probably go under the nicotine tread but this detail study dose mention help with dystonia among other PD symptoms.

http://deepblue.lib.umich.edu/bitstr...BF02244882.pdf

at around six or so years on dopa, and at the above around 1g/day, dyskinesia adversely affects many of us. unlike dystonia which can manifest itself in many painful " sustained twisting actions", dystonias are more akin to seizures in my mind. You can be sitting in a chair feeling ok one minute and then the spine twisting or other body twisting motions occur. The motions can get so violent that one is incapacitated, and very relieved when a particularly bad event subsides. The only thing that i know of to combat dyskinesia is possibly trying Amantadine. (Azilect quit?); and/or lowering your dopa dose, and thus sacrifice some movement. An antispasmodic drug such as flexeril or robaxin works for some , but is inconsistent. A relatively high dose of the benzodiazepine , Clonopin (1 to 2 mg), and a few shots of booze taken before a dyskinetic event will often make the dyskinesia subside within 20 mintes or so, but it is habituating. Better than getting hooked on narcotics though, because with narcotics, you must keep escalating the dose and it can get out of hand much too rapidly. In 18 years since i was scripted 4mg of Clonopin, i still respond to 4mg and no more. Booze is generally contraindicated in PD in general, but if you are prudent you can use it successfully to help with twisting dyskinesa. A lot of us have neurogenic pain such as sciatica that gets wicked when you twist your spine during a "twisting dyskinetic event". Neurontin or lyrica have helped some, but once again are inconsistent. just some ideas. cs

This is the face of dyskinesia, the kind that slowly rips you up; https://www.youtube.com/watch?v=CaJymwziF-M . You can see the rhythmic components of the choreonic form of dyskinesia. I've found videos of purely dystonic individuals that are twisted grotesquely and can't control the sustained quick motion but are like "bent out of shape"; both can be present in the same person, and definitely scary to the uninitiated. This is a case for dbs, for she has little response left to the medication (opinion). There is a wealth of free videos on you tube, some, if everyone read there wold be no mystery of what PD does to a person, such as this https://www.youtube.com/watch?v=3wg9ExKwZy4 as a general primer.

Hello TCleme

I just went last week to a Meeting about pd and dyskinesias..
it was very clearly said and studied ,that Dyskinesia affects 100% of young onset pd'ers after 5 years of Levedopa meds, and 100% of pd'ers of all ages after 10 yrs .
The ONLY available med to soften dyskinesia and very painful cramps is Amantadine (Mantadix/Symmetrel in Europe ). it really works .
Some new molecule meds should be on the market in about 2/ 3 years .