I experience periods which are rather unnerving. My toes on one or both of my feet curl up. I take 25-100 C/L at 9am, Noon, 3pm, 6pm 9pm, a 50-200 C/L extended release a Midnight, and two 25/100s (one of them an extended release )3-5 hours later. With all of the vitamins and supplements, I sometimes feel that I live between pills. My psychiatrist wants to add another anti-depressant, Lexapro, to my current one, Bupropion (300 mg), my . I get the feeling that my neurologist doesn't like me (she's very curt, and once told me that my PD would progress, which everyone with PD knows is the probable outcome). That hasn't helped my morale very much. I'm socially isolated, having gone through burnout with my sister and her husband, who are going to move 1,000 miles away for 4 years. I'm afraid of committing S because there's no way of knowing for sure what happens after we die. My toes curl every day, unless I take more C/L , or more Gabapentin or Valium. Botox didn't work, nor did those surround toes things.
What should I do? Thanks in advance for any advice.
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Alock2020
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Have you considered DBS? I was absolutely against it until I had no other options and now I wish I had done it sooner and saved myself a lot of suffering. It has helped with so many things, dystonia and dyskinesia at the top of the list.
You are facing dystonia in your feet. I think you are overmedicated. Have you tried reducing one of your pills by half?
Are you on any nutraceuticals?
Do you walk or exercise? You need to keep moving to the best of your ability, it will take 6 months to feel any benefit.
I am also socially isolated. My speech is severely impaired due to Parkinson's, so very little communication, but I make it a point to get out and walk twice a day clocking approx. 5 km per day. I have contemplated S many times but S is not the answer.
Some people find that adding a dose of Mucuna in between C/L doses (or as a substitute for some of the C/L in their schedule) gives them some relief with less side effects than C/L.There is a very helpful group on Facebook called Mucuna Pruriens Parkinson's where you can find practical information about implementing Mucuna.
I agree that you are possibly overmedicated and/or the C/L is causing dystonia side effects. Does the toe curling happen in between doses or when a dose should be kicking in?
It took me quite a while to realize that C/L can actually cause dystonia for me. Yes, it is supposed to relieve dystonia, but it can also cause it. For now, I function best on a small amount of C/L along with mucuna that includes the amount of levodopa that I need. If dystonia starts to become a problem, I switch over to carbidopa only (got a prescription from neurologist) plus mucuna for a little while.
Yes, C/L can also cause dystonia. The way to tell whether dystonia is being caused by the medication or by Parkinson's is whether the dystonia occurs at the peak or the minimum of levodopa levels. I more detail about levodopa-induced dystonia here:
To avoid any misunderstandings, it is important to note that Mucuna pruriens, like levodopa, can lead to symptoms of dystonia, which are also related to dosage levels. Both substances contain L-DOPA, which is a precursor to dopamine and can influence motor control. Higher doses or fluctuations in dosage can increase the risk of developing dystonia.
I had dystonia in my toes/feet until I began taking carbidopa levodopa. I know some people suggest you might be over medicated, but I suspect you are under medicated. In fact, I think you answered your own question when you said "My toes curl every day, unless I take more C/L...".
Lexapro might work. I take it and it seems to help.
I have the same thoughts as Juliegrace. You should think about DBS. I put it off because I was scared of the thought of someone working on my brain but I finally went for it and it was the best thing I could have done. 🥊😊
My husband could not tolerate the extended release madopar so maybe they don’t agree with you either.
He now takes only the instant release 50/12.5 madopar and has been so much better. There was a period a while back when on more meds he became so disabled he couldn’t even go to the toilet by himself or get onto a bed. Now he is back to pretty normal.
I would try at first getting rid of the ER and instead try an extra 1/2 or a 50/12.5 between the first doses of the day at 10.30 and 1.30 possible another 1/2 before bed. See if that is better or worse.
my husband found clonazapam in a small amount (0.5mg) cut into quarters over the day received the anxious feeling.
It seems to me that there is room to experiment with your medication schedule in an attempt to achieve a better balance between PD symptoms and medication-induced side effects.
And perhaps room to experiment with another MDS / neurologist, in order to perhaps find one who can deliver competent care with compassion.
It may be useful for the group to know whether your toe-curling occurs at all times of the day or only sometimes. And how those times relate to pill-taking times.
Please don't give up, we all have our own battle to fight and win.
Do 2 things......start drinking warm water, AVOID ALL COLD DRINKS slowly it will clear all toxins in your body and start doing meditation, which will help you to control your emotions.....do this 2 things and come back to me after a month
Try looking the Genesis Program. I'm sorry I can't provide more information. Please contact me if you need some help finding this or look up Lars Konge on Facebook. You can also look at carnivoreacademy.info, Good luck!
I am thinking about DBS for my self. I have really know idea but my personal experience was that I was under medicated. My neurologist is also very curt. I’m starting to think it’s the nature of the beast. Anyway, I have also felt very low and yet, with a little tweaking here or there, I do feel better. Another thought, my sister has been prescribed Lyrica. It is like an upgrade from gabapentin. It may be more expensive but maybe worth a discussion with your GP?
I also find great relief from the Zoom calls Marc Anderson has set up. I was and still am very surprised how much it helps to talk to other people at various stages of the disease. Everyone is welcome and you do not need to talk but can if you want.
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Foot Dystonia
Starting C/L immediate release 
Carnivore Diet for Parkinson’s 
