i've been wondering after reading many posts here, whether I know the difference between dystonia and dyskinesia.
My PD was preceded by the onset of vocal cord dystonia which means the vocal cords are very tight which makes it very difficult to speak. I get severe abdominal wall muscle tightness when the next dose of Sinemet is due. It seems to improve about a half hour after taking the pill. I'm assuming that's from too little dopamine in my system and most people would call this "dystonia."
Now when people say they are getting dyskinesia from too much medication, what movements or involuntary motion are they talking about? No one ever describes exactly what that looks like. So my last question is whether people can get dystonia from too much dopamine or dyskinesia from too little. It would be difficult for me to understand how a person could get the same side effects from either an excess and an insufficient amount of dopamine in their system.
My apologies if it sounds like I'm obsessing over this, but I can't seem to get a clear picture from my neurologist and I feel like my meds need adjustment !
Thanks in advance to anyone who has the time to read and answer this !!
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Grasss1973
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Hi Grass. I empathize with your situation because I happen to suffer from both. Many Parkinson's patients who are on Levodopa therapy will get either one or both. The general consensus is that:
Too little levodopa results in curling of toes and feet and hands and can cause you to adopt weird postures. This is called Dystonia.
Too much Levodopa leads to excessive tremors, excessive whole body shaking and you feel like an earthquake hit you. In other words, you feel just like you have Parkinson's, just exponentially worse. This is called Dyskinesia. Ironic, isn't it?
Some people like me experience both conditions either separately or simultaneously and it becomes extremely difficult to treat. Imagine tremoring violently while your jaw is clenched, your toes are curled and you can hardly walk. You need an extremely patient and calm doctor who will work with you closely to treat this condition. This is called Dystonic Dyskinesia.
Many thanks for the detailed description and I hope you have found the type of movement specialist that you need. I'm convinced that any physician who wants to gain a thorough understanding of PD and other movement disorders had better read and read again a message board like this one because they can't help people if they are not aware of some of the difficulties, details, subtleties and nuances of PD.
You are welcome, Grass. Yes, my MDS is superb. It did take several years of tweaking to get here to a point of peace and stability. Levodopa alone in any form doesn't work. In my case it is a medication "cocktail" as I call it consisting of Rytary, Istradefylline & Requip.
yez, that's dystonia. A lot of us get toe curling, foot twisting (rigid) when dopamine is not enough. Dyskinesia can be mild or intense, swaying, twitching, twisting, but not rhythmic like tremors or tight/rigid like duystonia.
Thank you for summing that up in short order ! What a crazy situation we're in. I wonder if there's any other med for any other disease where you have to have this perfect "Goldilox"scenario of not too little and not too much to get it just right. It's a work in progress I guess.
Thank you. I was wondering if that kind of restlessness he has when sitting was dyskinesia. I noticed it when watching him on a TV series where he plays a "not-so-much-loved" attorney.
I have dystonia and also get the abdominal wall tightness and difficulty breathing and thinking dystonia might be affecting diaphragm....not sure. Esp. bad when I am off levodopa.
I also get that feeling that I can’t breath properly as my diaphragm feels wrong. It makes me anxious which makes me feel even more that I can’t breath properly....!
I got respiratory dystonic dyskinesia from my one try on agonists and occasionally get it mildly on C/L. Horrible stuff - diaphragm spasms - feel like you can't breath
Yes it's a restricting feeling that makes me anxious too. I don't dare swim in deep water. Tried it once before I understood what was happening and it was a near disaster. I'm trying to remind myself to breathe deep for anxiety but sometimes have to take something. We're having a heat wave and I guess it's affecting me too. Have to keep on top of the meds because it definitely help my breathing and abdominal wall relax a bit. You too?
So in your opinion, are your symptoms clearly related to your blood level of dopamine dropping down too low?
Did your doc ever try shortening the interval between doses or increasing the dose?
I found that taking the regular release (not the longer acting time release Rotari) every 3 hours minimizes the frequency of the dystonia but if I eat anything, it must block the absorption of the dopamine because the dystonia will return very quickly.
Heat intolerance seems to be part of this disease as well so staying indoors with the A/C is ok with me at least for a short while.
In am I'm breathing more heavily not due to any activity, just making breakfast, etc. ....(sounds like I just ran up and down some stairs). Sometimes I take an early walk before the heat of the day before my dose. Then the stiff legs and torso/chest and easily out of breath is super noticeable. As soon as I take a dose it all relaxes. If I don't take it by 11 am I'm miserable. Mentally I cannot function either so I just sit and vegetate on the computer. Stiffness also affects digestion and swallowing to a great degree and moved into my right arm recently....whole arm and hand making my fingers stiff and the middle one curl. I thought it was dystonia but GP says increase dose to 3x a day.....it seems more like PD. I notice the arm is less stiff when I'm fully on. The left one is also stiff but much less. I won't go swimming unless I'm on L-dopa.
I've read the cranio-facial type + jaw, neck and head tremor (me), sometimes leg too, are usually secondary to something else...PD, atypical PD, the big unanswered question. I just wonder where does dystonia leaves off and PD start as the symptoms are similar. Everyone is so different.
And you're wondering where dystonia leaves off and dyskinesia begins? Is your dystonia secondary to PD? If not then it may have started while you were young?
How frequently do you take the dopamine? Sounds like you could benefit from a larger dose but I think you're saying that a bigger dose causes more dyskinesia?
If I've got that right, then let me ask if you have ever tried breaking off a fragment of one of the pills and taking say one and one quarter at a time? That way you're increasing the dose incrementally and possibly decreasing the chances that you will get more dyskinesia and you can evaluate whether the dystonia improves at all.
I had a similar problem with the generic carbi/levo in that one of the substitute generics that I was given, just did not work at all. I thought I was imagining things but pharmacist related that several people had complained about the same problem.
Sorry I guess I missed this post. I take mucuna pruriens equal to 100 mg. (pharmaceutical) Sinemet....Canadian brand. I don't have dyskinesia and I'm trying to work up to 3x a day is all. I held off taking anything until the last year but now have to and still no PD diagnosis, not that it matters since this seems to work. Dystonia seems to be on the rise in our area.
thanks for your reply. I'm not sure if there's any involvement of the diaphragm, but I'm pretty sure the chest wall muscles tighten up which definitely can make breathing seem more difficult. I guess one of the keys is to make sure the meds are not taken late.
Hi there, yes Dystonia is like a severe muscle cramp, or a certain part of your body locking in place. Dystonia in my foot and leg was my first symptom 8 years ago and I now have cervical Dystonia as well. Just this year I have been experiencing Dyskinesia , the uncontrollable swaying and moving, which becomes tiresome. Certain generic cd/ld work better for me and unfortunately the manufacturer that is best for my body my pharmacist, who always special ordered for me, can no longer get it. So with other manufacturers I seem to need more cd/ld, which brings on the Dyskinesia. A vicious circle so to speak. Hope this helps. Take care. Karen
Thanks Karen, I guess that's why I sometimes missed doses thinking I could avoid dyskinesia but now it's not even worth it to miss. Since you're posting in PD forum I'm assuming you have PD too. I've come to accept that mine is also PD and that's OK as long as I can keep moving. You're all such a helpful bunch and I'm learning a lot. I only have a walk-in doctor helping me wade through this for now. I just get a bit confused with the different types of dystonia, the one that younger people get and the one that hits us old folks later in life.
Hi there. Yes I am going on 8 years since diagnosis. Had a DATScan at the age of 49 to confirm it. I can’t say that it was an easy acceptance to the diagnosis and as an athlete I thought I would figure this out. I was naive and as my disease progresses I am thankful for every day and keep pushing through. I do have a wonderful movement specialist doctor that is very supportive. Take care. Karen
Fino a quando non ho assunto levodopa, seppure in minima quantità, per controllare il tremore, non ho avuto discinesie, non sapevo cosa fossero. Lo stesso giorno della prima assunzione sono iniziate. Non sono invalidanti, ma disturbanti. Adesso conosco, grazie alla levodopa, anche quelle che i neurologi chiamano fluttuazioni , tutti quei sintomi tipici del Parkinson, che compaiono a fine dose e qualcuno in più regalo del farmaco. La cosa che mi stupisce è la seguente: se prendi un qualsiasi farmaco che ti crea problemi te lo fanno sospendere, con la levodopa non si pongono il problema ( capisco anche il perché, è il farmaco per eccellenza ) inoltre non ti sostengono se vuoi passare alle cure naturali. Allora cerco di farmi bastare la dose minima che assumo perché mi chiedo , incrementando la levodopa tra un paio di anni come mi ridurrò?
You cant cure a disease with drugs but only lessen the symptoms. They prescribe a drug for a disease they know nothing about and the-drugs they prescribe. I have those symptoms and I think its from the drugs. I don't have PD but I get it from anti depressants for my bi-polar, depression, mania. I may be a hypocrite but I'm also a ex heroin addict. Clean for 27 years and so screw up from my past. I used to love drugs and now I have to take them because I didn't know what my future would bring from there use. I have PD symptoms. My right hand shakes sometimes, neck is almost locked in place, jerking motions all from drugs. The drugs are mimicking the PD symptoms. You have every right to be obsessed and anything else. Research, don't trust medical science. Their only interest (Big Pharma) is to make money buy jacking your glans up with poisons that take symptoms away while killing you. Remember Medical service is the 3rd cause of death in US. usnews.com/news/articles/20...
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