Has anyone suffered from dyskinesia or dystonia - toes curl under

Thanks for the information. I recently found out that the Botox was denied for my insurance so I’m not sure where we go from here. I’m not sure how expensive it is, but I will be checking into that now. I appreciate your time.

I have dystonia in both hamstrings and it is very painful to sit or walk. Symptoms began 4 years ago after my pcp decided to treat my resistant depression with Abilify . Even stopping the medication after a few days has not made a difference. I have failed Botox 2 times. I recently had DBS and after several months of fine tuning with my excellent movement disorder specialist, I am no better and perhaps worse. I tried a pain patch buphenorphine with no relief. My pcp hospitalized me 3 years ago before my Parkinson’s 2 years ago. He treated me with a lot of narcotics including dilaudid and fentanyl and all I got out of it was moderate gastroparesis. The fentanyl actually helped but all meds which slow down digestion are off the table. I currently take 200 mg of Domeperidone 3 times a day and nizatadine twice a day. Anyone else have treatment resistant dystonia?

Hello @coho222,

I sorry to hear of your struggle with dystonia. This sounds uncomfortable and I'm sure the pain impacts your daily activities. You mentioned that you are taking Domperidone. As I was not familiar with this medication, I found some information on Mayo Clinic's website. Here is a link to that information, https://www.mayoclinic.org/drugs-supplements/domperidone-oral-route/description/drg-20063481.

You said in your post that you, "have failed Botox 2 times." I'm assuming that you mean that you tried Botox injections twice and you didn't get any symptom relief. Is that correct? It sounds as if your medical team has tried many different treatment modalities with very little success. Is there anything else that has been suggested?

Here is some information from the Mayo Clinic website, regarding how Mayo Clinic treats dystonia, https://www.mayoclinic.org/diseases-conditions/dystonia/diagnosis-treatment/drc-20350484. As you read through this information, look and see if there are any treatments mentioned that have not yet been tried.

We have many Connect members who have posted about Dystonia. Their posts are in several different support groups, including Autoimmune, Brain and Nervous System as well as Spine Health. Here is a link to all of these posts, https://connect.mayoclinic.org/search/

I would encourage you to read through the posts and see what others have said about their journey with dystonia and their treatment.

How often do you experience symptoms of dystonia? Is it daily, hourly?

@coho222 I know this is about a year late, but I occasionally suffer from that toe dystonia, which is probably the worst symptom I experience. It luckily only occurs right before I take my medicine in the morning, often triggered by a bad night of sleep.

If I started suffering from that any other time, I would have to seriously consider DBS. My thought based on your other recent post @coho222 is that lack of sleep is the root of all your problems. I know that is not comforting and doesn't solve anything because you can't force sleep, biut maybe if you take enough levodopa extended dose or something that makes you feel better at night and just lie there (with no other sleeping meds), maybe that could help. I am no doctor; it is just what works for me. Counting sheep doesn't work for me, but thinking of a movie or game I recently played (or whatever you enjoy) sometimes works. Good luck!

I have a condition where my big toe curls up , not under. Typically while I am having leg tremors. This is all very new to me. Very pain full and is now affecting the rest of my foot. My GP was concerned and has referred to a neurologist. I have NOT been diagnosed with Parkinson's (Not yet/ Not now) is what the neurologist said... He offers no medication, just sleeping pills ( That dont work) for debilitating insomnia. He told me to go to a podiatrist about my toe.... not a podiatrist issue. I have many other symptoms that seem to me also seem to be Parkinson related like unsteady gate (the drunk walk as I call it) dragging one foot slightly, constipation, leg tremors and internal jitters...... I arrange my own MRI and there is no evidence of stroke or tumor. He said benign tremors. He is not doing anything for me. Aside from getting a new neurologist I am at a stand still.

Hello, @kathiemp, and welcome to Mayo Clinic Connect.

It is always appropriate to seek a second opinion when you feel that your health needs are not being addressed appropriately. Here is a link from the Mayo Clinic website explaining symptoms, diagnosis, and treatments for PD: https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055

Have you asked your GP for a referral to a neurologist yet? What are the most bothersome symptoms you are experiencing right now?

@lisalucier - My podiatrist called what I have as 'HAMMER TOES', but I'm thinking it's the same as what you described. I take several PD meds, but I had this condition before I was taking the meds.

I had to stop taking one of my Parkinson's meds. the curling toes and left foot still wants roll to its left side. But not as often. My curled toes are permanent. I have to buy shoes a size large, and wide with. My Parkinson's has progressed. I tremor now. Presents on my left side. Involves hand tremor and calf area. I do get time that it stops, even while I sleep.

I went to a podiatrist, he gave me (cost me $75). It is so complicated to put on. it difficult to remember how.
I threw it out and will be purchasing an ankle brace cost 14$ to $30 from Amazon. I just need to figure out which one.

I see that you discontinued one of your PD meds to address the curling of your toes. @sparkyr70. Was this recommended by your doctor? It looks like it has helped. Did you start any new medication to replace the one that you discontinued?

@sparkyr70 I often feel the same way, i.e. new symptoms terrified me. I thought every time that my PD was progressing and I was doomed. After I rested a few days, usually I reset and looked at everything a bit more rationally.

Fact is, this disease is scary. It can feel like you are progressing to the point where meds don't work and you can't leave the house much less hold a job. If you are having new tremors or other such symptoms, I would suggest resting a few days (if you can) and seeing if they persist. I sometimes have sudden movements when I am really tired, and maybe some day, they won't go away, but I have found that rest helps a lot. Not having anything to do for a few hours does wonders for me. For a few days, is a godsend. However, it is not very practical, unfortunately.

For the symptoms that persist, you either need to visit Dr, House or equivalent or take each issue one at a time. Trying to fix everything that is wrong with you at the same time only tends to drive you crazy because there is so much and it always changing. Good luck!