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Has anyone suffered from dyskinesia or dystonia - toes curl under

Posted by sparkyr70 @sparkyr70, Jan 20 6:02pm

I'm on Rytary 3 X's daily. I also use INBRIJA inhaler 3 to 5 times a day. I have researched the symptoms of Dyskinesia and Dystonia. I have tried adjusting my meds and after many months I think this side effect is cause by INBRIJA. My left foot toes curl under as follows, Not the big toe, toe next to it curls a bit but toes 3, 4, 5 are really curled. Tremors accompany the toes curling. I'm forced to walk on the outside of my foot. Because the side of my foot is carrying my weight, it causes my ankle to swell and is painful. Has anyone experienced this? If yes how do you manage this?

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hello56 | @hello56 | Jul 28 10:41pm
In reply to @mstrimenos "My toes started curling about a year ago, my foot also was turning inward. My neurologist..." + (show)
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My toes started curling about a year ago, my foot also was turning inward. My neurologist suggested that I start Botox injections in my foot and leg. I decided to try physical therapy instead, which helped but only for a short time after each session. When the dystonia in my foot started impacting the whole leg and hip I decided to try the Botox injections. They worked very well! I wish that I had begun the shots as soon as my toes started curling.

Unfortunately the shots are only effective for approximately three months and require a Neurologist to

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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.

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coho222 | @coho222 | Aug 22 9:03am

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?

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Teresa, Volunteer Mentor | @hopeful33250 | Aug 22 12:54pm
In reply to @coho222 "I have dystonia in both hamstrings and it is very painful to sit or walk. Symptoms..." + (show)
Profile picture for coho222 @coho222

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?

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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/?search=dystonia

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?

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