About 6 months ago, my dyskinesia started getting worse, and I noticed I was starting to get a lot of neck pain.
I went to a neuro PT who said she thought my neck pain and stiffness were being driven by my dyskinesia and that I needed to reduce the dyskinesia before we could improve my neck. So I tried amantadine but because of its side effects I can only take 1 per day. And it doesn't seem to help at any rate. So then I experimented with dosing of CL - minimize usage. But haven't been able to find a balance that works. Now I'm experimenting with Rytary. No luck yet.
If I can't eliminate dyskinesia, is there any kind of PT that can at least help reduce neck pain?
This is a major problem for me because beyond the pain, I was reliant on running and exercise as therapy. But with the neck pain, I'm lucky to be able to fast walk for 20 , max 30 minutes!
Thanks, Craig
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craigwharris
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I have a similar problem. In my case, dystonia leads to a stoop and lean, which in turn causes back pain. Without this I can easily walk more than 10 miles in a day (not bad for 17 years post diagnosis). But, with it I'm limited to about 8 miles of pain free walking.
What type of dyskinesia do you have? If it is levodopa induced dyskinesia (LID) it will be at its worst about a hour after you take a dose, i.e. when plasma levels are at their highest. The theory with LID is that changes in plasma levels cause them, rather than the maximum per se. You may wish to consider rasagiline and/or ropinirole as an addition to C/L. These have a longer effective half-life than C/L.
I'm sure the dyskinesia is due to the CL but although I get a few minutes of tension at 30 min.s and 60 min.s, the dyskinesia gets worse after 1.5 hours. It seems to worsen as it wears off! At any rate perhaps your idea could benefit me. I'll look into it! Thank you for the response.
You might try spraying on mag oil to see if it will help the muscles to relax. It's inexpensive to test and if it helps it will be worth the effort. Here is a typical product :
If it's "levodopa induced dyskinesia " can I assume reducing or eliminating levodopa solves the problem? I quit Rytary one week ago. So far no change in the neck pain. I use Voltarin gel which improves range of motion at least for a while.
Thanks for clearing that up for me! And it also explains why Rytary if used correctly can smooth out the plasma level differentials and therefore reduce dyskinesia.
My reading of the literature is that levodopa levels are important in the pathogenesis of LID, but not exclusively so. Lin writes:
"Less pulsatile levodopa with 6 daily doses was associated with a very low incidence of LID. Until the development of improved levodopa formulations which eliminate pulsatile blood levels, the LPT method deserves further use in patients able and willing to comply with the inconvenience of frequent doses."
Reference:
"Less Pulsatile Levodopa Therapy reduced risk of Dyskinesia"
7th International Conference on Parkinson’s & Movement Disorders
The LPT method involves dosing six times daily instead of three times. Presumably the doses were adjusted to provide the same total daily dose in each case. The LPT method would then result in both less variation of and lower peak levels of levodopa. This does not distinguish which aspect of the treatment was the reason for less dyskinesia. I am not aware of any reference which states that it is the variation rather than the peak levels that are responsible.
This is very helpful to know! Thank you for the reference and idea. I wonder if you can take a similar approach with Rytary. I think that the whole point of Rytary is to avoid the pulsatile blood levels. But you still have to take at least several a day and the timing and how you combine them matters.
in my husbands experience the long life madopar caused it. I think it is because he has a very fast running dopamine beta hydroxylase function according to his genetic test so I think that makes him burn through the drugs really quickly causing much higher peaks than he should get and making it run out too quickly.
I developed dyskinesia within 3 months of starting on levodopa.It peaks 90 minutes after a taking Sinemet . But Sinemet is the only thing that works on my disabling symptoms (foot dystonia that is severe enough for me to not be able to walk, a mild degree of postural imbalance and bradykinesia of limb function especially right hand and arm; dominant hand)
I sometimes get dystonia in other groups of muscles especially the neck and if the post dyskinesia (jerky involuntary movements) kick in then it takes about 20 hours for the stiff painful neck to recover.
Magnesium oil does not help me
A very deep Thai massage by my skilled practitioner (Thai lady trained to a high level in a traditional temple based school) is the most effective.
Failing that a deep massage with a flat tool called a guasha stone in longitudinal strokes on my neck and scalp muscles planes after generous amounts of lubricant massage oil /moisturiser which I have learnt to use myself.
Both forms are very painful and require deep and firm movements.
A vibratory massage gun along the paraspinal muscles from lower back to shoulder level is the 3rd most effective.
If desperate will try Baclofan but it seems to take the edge of th residual stiffness if I manage to sleep for 3-4 hours at stretch after that (very rare for me to sleep more than 2 hours at a time)
Thank you - I have tried the prolonged release tablets right when the dyskinesias started as it seemed logical but they did not work
I also gave magnesium oils a real good try as it made sense.
I take small doses of Sinemet and wait till I get a prodromal whiff of an off phase and that makes it manageable. Also oddly my total dose required during a day varies by 50-60% i.e 600mg L dopa to 1200mg a day.
The truth is there is a possibility that I have actually got an unusual form of primary dystonia that manifested in a minor way as a child. I was called a fidgety child and being brought up by my maternal grandmother who had rheumatoid arthritis I thought painful legs were a normal part of life !
I have the most amazing pair of Movement disorder neurologists who have been very open minded and explored all my theories, and observations and have launched into a robust treasure hunt for a possible gene mutation in a receptor that has within my family probably took place in my father's generation. We are a very small volume family so it will be a difficult to prove .
The upside is that it means I may be plateauing in my symptoms and things may not get much worse and I got to live for 56 years with no fear of going wonky in my latter years.
A good session with my current massage therapist will completely relieve the neck aches and stiffness for 3 days or so. But I do aggravate it. I travel by London underground to work, carry a rucksack and need another easy to open bag with purse, packed lunch , water etc.
I usually have a massage on Friday evenings (so weekly).
I chose Thai massage after being disappointed by various sports massages/ deep tissue massages/ myofascial release etc.
I am originally from Northern Kerala (South West India)where there used to be a strenuous form of martial arts (think of fencing with a heavy sword and using a heavy metal shield). The system also had their own massage technique to aid recovery. Unfortunately it was banned during the last 100 years of Colonial rule but has revived as an entertaining sport.
Tradition therapeutic Thai massage is a version of that massage that was introduced in the 6th - 8th century when Indian Buddhism spread to Thailland and it has been allowed to develop there.
Yes it took years to find someone in London but my current therapist is a genius. She has a bag of tricks which include the gua sha type as well , but a another person introduced me to gua sha. I also know of a physiotherapist from Vietnam who uses gua sha methods for neck dystonia (actually teaches cients and carers).
If you have any more questions please do ask.
My only probelm is my therapist speaks very poor English so getting a straight answer is hit and miss.
Thank you for the explanation! It is very helpful! I live in an area, Santa Cruz CA that has lots of PTs and chiropractors of sorts. It's tricky to find someone who you trust to work on your neck. I did find a PT who had neuro training and has other PD clients. But she thinks I need to tame my dyskinesia before we can make progress on my neck. Problem is, amantadine doesn't work and I'm not willing to do DBS at this point. So unless I can reduce the dyskinesia by tuning CL or Rytary dosing, I need alternative approaches to my neck pain. For me the neck pain is my biggest problem because it prevents me from doing enough exercise - which I believe to be my most beneficial therapy! (I'm confident that my dyskinesia is the driver of my neck pain)
It's amazing you can get total relief from massage! I somehow don't think I'd get the same result, although if I could find the right person, it would certainly be worth a try! Or perhaps I might try some of the other techniques you referred to.
I do agree . Finding a safe person to work on your neck is scary. I am lucky being medically trained and with trauma care experience I can stop someone doing anything dangerous.
I am very cautious about chiropractors because unfortunately I have had to look after the 1 in a million who develop vertebral artery dissection after neck manipulation.
The gua sha is pretty safe ! You can start using a butter knife.
Likewise inverted positions in yoga and pilates relax your neck muscles.
Another safe method you may have access to is Feldenkrais. I dont have the discipline to practise a passive technique regularly. Again I was able to find an excellent teacher.
Thanks for the helpful suggestions! I'm already doing inverted yoga positions and did a bit of research on gua sha. Looks like an interesting way to redistribute energy. I'm also looking for passive Feldenkrais info.
I had dyskenesia induced by C/L that resulted in incredibly painful dystonia in my neck and shoulders. I had to kill the pain with Botox injections. So far I have had three. That may be all I need. I have reduced the dyskinesia by lowering my C/L intake and switching to Rutary
Rytary is just a new form of extended release C/L. It is supposed to allow a reduction in C/L intake to produce the same effect. But it is not directly comparable. Less C/l means less dyskenesia.
My neck is very stiff and mean in the mornings and I have to roll it back and forth over my hand knuckles (fist) for a long time to work it out and start my day. Lots of shoulder shrugs and torking my whole body side to side. There is a lot of crunching and grinding noises, but finally my body will relax and the pain goes away
I wish something like that would work for me! I think I've got too much happening in my neck to make that work. But it wouldn't hurt to be more forceful with my self therapy. Thanks
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and I got to live for 56 years with no fear of going wonky in my latter years.
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