Does anyone have curling toes? I do on my right side only .my tremor side.if so what are you doing for it?
Dystonia: Does anyone have curling toes? I... - Cure Parkinson's
Dystonia
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Rosabellazita
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Yes, as I write, I have curling toes. It is 8 hours after my last dose of levodopa. This doesn't bother me too much: without any more medication, I will soon go to bed and sleep soundly. When I get up in the morning my toe curling will have gone. This indicates that I am still producing local (endogenous) dopamine, albeit in too low quantities to stop other symptoms. This is not the case for everyone.
I think you have correctly labelled the problem as dystonia. You are probably under-medicated. This is especially likely if toe curling occurs just before you are due to take your next dose. If this is the case, I suggest that you see your doctor to discuss an increase in medication or, if you are not on medication, that you start.
John
I find that consistent exercise helps although I often have toe curling triggered by exercise. But it's worse when I exercise less consistently. I use Vibram five finger shoes for exercise and walking, which I find helps immensely. I think it's the greater stimulation (sensation) on the soles of my feet that helps. Walking on concrete is worse than walking on rough terrain. I have on occasion had to take my shoes off when walking, obviously not a solution in the winter.
Hi. Get severe cramps at times but the curling toe is in a different league & generally only get it whilst running - which is a shame as this is one of the more social sessions that I have in my regime. Have seen a neuro physio & she detected a 'double tap' on my affected foot when I walk or run so she referred me to an orthotic specialist to have some special insoles made so will let you know if this helps. She also said to stretch the calf regularly & to do more stretches on the affected side. The 5 finger shoes sound interesting - looking for something to replace my Crocs in the house & garden now that the colder weather is here. Thanks everyone.
I am interested to know whether you ever have more widespread dystonia, affecting a whole arm or leg or both?
My husband has found reducing his meds has helped but it hasn't totally gone. His toes curl and his hand turns back on his right side but only when mdicated.
Two things I've found help me a little (but a little is better than nothing):
1) When sitting in a chair, I will take my shoes off, point one foot toward the back of the chair so that the top of the toes are resting on the floor. I rest my foot very gently in this position for about 5 seconds. This gives the top of my foot and toes a good stretch. Then, I do the other foot.
2) At night just before going to bed, I apply magnesium oil to the top of my feet and ankles. This prevents nighttime cramps in my calf muscles, and I think it may help my curling toes, too.
i used to get the curling toes before i got up in the morning. it was only relieved when i took my fist dose of c/l. but about 3 weeks after i started taking the high dose thiamine, it stopped. i havent had dystonia since. ive been taking the thiamine a little over 3 months now.
Had that, ohhh other worse. My dystonia happened at different times. If be at the market or just going upstairs to help the kids. I started to tell when it would hit or not. When it strikes with no warning was the worse.
That's when would be I'm so much pain and couldn't move. It attacked both the arm and leg and foot. I just curl up and could just wait to pass. About an hour or less it would cease. DBS helped a lot when I was finally awarded it. That thankfully was a life saver.
Though if it was just my foot/leg, if stretch it real good. Like tippy toes crouch. It'd stretches the toes out.. and keeps the leg from moving out from under me. But that's me...
Strangely I only get Dystonia in my Left Foot first thing in the morning (before meds) - not when lying in bed or when walking,etc. but have a permanent cramp feeling in that foot all day ......... it's strange because that is not my affected side.Perhaps it's just PD progression from Unilateral to Bilateral. Firmly believe that it is down to medication (too much or too little .......... I haven't quite figured this out yet)
But one thing I do know is that PD meds increases cause as many unwanted side-effects as they are "fixes" for other symptoms. This leads to a vicious circle of deterioration and ever-increasing medication which I am trying to avoid.
Sorry I have not got an answer to your Dystonia but would suggest that first place to look is your level of medication.
try high dose thiamine. after 3 weeks, my dystonia is gone completely.
Hi
What dosage of B1 are you on ?
Hi Dingler
Please can you let me know the dosage for your PD medications and when you were diagnosed? Do you take Thiamine?
Many thanks
Sorry for the delay
Diagnosed 3 Years - was on Madopar 125mg x 3 times per day but had a severe deterioration some months back when I hurt my back badly (severe tremor/rigidity/insomnia/depression/anxiety all came with a bang ..... )
Neuro surmised that I had been just about managing on current dosage and back trauma had put me "below the line" for my meds .
He wanted to up my dosage to 250mg but we agreed on half-way (187.5mg x 3 times per day) things have improved and I am currently taking Mirtazapine 30mg for the depression/anxiety/insomnia -
I have been experimenting with B1 but have been getting sever rigidity and back/leg pain.
It appears that even 500mg/day is too much for me.
I level is none
My level is none
I had Botox injections every 3 or 4 months for 2 years. It helped so much that I no longer need them. It helped retrain my brain. Occasionally I get the dystonia before my first levadopa dose of the day.
Strangely I've had dystonia in my initially affected side (left foot) for the last few years and coincides with my sinemet cr wearing off. However for the past few weeks I have woke up with dystonia in my right foot, but not left, which resolves when the sinemet has kicked in. Still thinking about trying Thiamine.
Nick
My toe curling is on my tremor RT side too. My first reaction is to massage the toes It does help. There is so little that is known about PD. Reading about other people’s solutions to all the sx does help see what to utilize. The two.least invasive are.exercise and taking enough ldopa.
My toes curl and the two smallest toes on each foot feel like they want to merge into being one toe! I feel pressure and shaking in my toes and feet - when I'm sitting still and when I'm lying in bed at night and when I wake up. I've been taking B1 (very low dose - down to 250mg/day -started at 100mg/day and have decreased per Doc C) and was taking sinemet (25/100) - one and a half pills per day (also per Doc C. ) I stopped it because I didn't think it was doing anything, but not sure. Been taking B1 for 5 months, Sinemet for 2.
Toes and feet are my main issues.
My toes curl on the right as well. It was one of the first Pd symptoms for me. It seems to be intermittent and only when I run in the pool. I just hop on my left foot until my right foot gets happy again. About 8 weeks ago I started c/l and a plethora of new supplements. I have been taking B1 for about 6 months....nothing has “fixed it “ at this point. Thanks for asking the question! I might try those toe shoes!
When I am waiting for the microwave or brushing my teeth, I hold onto the counter for balance and go up and down on my toes - 20-30 times. I try to do this 2-3 times a day. I also get night leg cramps so I take 2 magnesium citrate 250 mg pills before bedtime. Magnesium is a natural muscle relaxant, but it is also a laxative, so start with I pill.
Simple home remedy suggested by an alternative medicine practitioner helped me with dystonia. I too have tremor on the right side. Curling toes, claw like fingers of my right hand and oddly stiffened arm on the right side..all are helped with having a cup of water with lemon juice in it..about a quarter lemon. I usually take this after my meds for PD. About 4 times a day.
I find typing tough though!
What meds do you take
I have segmental post traumatic dystonia following a fractured pelvis in May. This is apparently a rare complication of PD and trauma, and has been a real challenge. Right now I am struggling with a wheelchair and PT, OT and Botox injections to relieve the dystonia. I thought y toe curling was a problem, but this is a real challenge! Would be happy to hear from anybody who has been through something similar.
I'm not on meds
Want to start mucuna puriens
i was on carbidopa/levadopa 25/100 (4 tablets a day), pramipex 3 mg - a dopamine agonist, and pacitane 2 mg an anticholinergic drug for relaxing muscles. I had these from January 2015 till July 2018. I have always had yearly health check ups done and found that from a person who had no ailments other than tremor etc caused by PD, by mid June 2018 I had developed hypothyroidism, anemia, high cholesterol, diabetes and uric acid. The list of medications was growing.
I enrolled myself in an Ayurvedic medicine treatment centre and they helped me with ridding myself of these drugs and structured my Mucuna puriens dosage. At the end of 60 days my health report was normal for all the conditions listed above.
At present I am on 6 teaspoons of MP a day at 3 hour intervals starting from 6 am.
At times i take a higher dosage if i feel I need it , but I was told to stick to 6 teaspoons a day. I also do yoga and meditate everyday.
I do get dystonia at times and lemon water helps.
MP has helped me immensely, but I am still in a transition stage. I am not able to walk properly yet with my right hand tremor interfering and my right leg sort of shuffling .
Sorry for the delay in replying. I have to wait for a day when typing is easier.
Wish you good health.
Does dystonia cause swelling feet and ankles? I had to stop amantadine from swelling of ankle and feet.
Would you mind sharing the name of the Ayurvedic Center you went to and how did you find it?
The ayurveda centre is in India.
What is it called? Where in India?
Jahelg and Trixiedee,
The ayurvedic canter is near Bangalore.
I live in Kolkata, India . My husband visited the place before we took the decision to undergo treatment for PD there. It helped me to move to mucuna. And got rid of several other ailments which were side effects of carbidopa/Levadopa and other PD drugs.
But it's not magic. I still need to exercise, meditate.
Trying fast walking also as suggested by John Pepper in HU.
Jahelg and Trixiedee,
The ayurvedic canter is near Bangalore.
I live in Kolkata, India . My husband visited the place before we took the decision to undergo treatment for PD there. It helped me to move to mucuna. And got rid of several other ailments which were side effects of carbidopa/Levadopa and other PD drugs.
But it's not magic. I still need to exercise, meditate.
Trying fast walking also as suggested by John Pepper in HU.
My long post above was in reply to your question about what meds I take. Hope it helps.
My toe curling is the worst when I lay on my back. I found that wearing toe spreaders has given me much relief. I just wear them to bed at night with socks on. I found them in a catalog called EasyComforts.
I found the website that do not see what you ordered for your toes. Is it the toe straightener?
I do not know what to order
I'll wait to hear from you before I order
I ordered out of the catalog. they are green gel cushions. The description says "comfortably stretch away toe pain". The item number is 359502.
yes About 4 months ago my left toes started curling ,it sims to happens when i am in shower.I was diagnosed with Parkinson 7 years ago .I am on 1and half sinamet every 3 hours and c/r at night, 2premapexole at night plus 1 rasagilini and apomorphin pump for 12 hours every day.my neuro has suggested boutox injection in my feet. waiting for appointment. I also suffer from crohns disuses ,for past 29 years , and had 6 surgery for that. will see if boutox injections work
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