looking for ideas to help dystonia in toes

[LearningAllICan]

My husband's toes curl under causing lots of pain and difficulty walking and he is a runner so this has become a significant problem. Not being able to run is not good for him. would love some ideas and thoughts on botox. thank you!

[Kwinholt]

Hi there, i am a runner with PD for 6 years now and mine started with the dystonia in the foot , leg ect. My toes can curl down or up demanding on the day. I receive Botox every 3 months in my foot , leg . It seems to help me but doesn’t always work for everyone and also make sure your insurance approves it as well. I find that my toes act up when it’s time for meds and when I’m doing a long run I have to take and extra 1/2 - 1 cd/ld bc I burn it off faster. Botox is worth a try. Take care . Karen

[LearningAllICan in reply to Kwinholt]

thank you.

[Softballman in reply to Kwinholt]

When I ask my neurologist about Botox he didn’t recommend something difficult to administer. So I try I artane not good experience felt drugged out etc. I’d like to give it try need a neurologist.

[Softballman in reply to Softballman]

New neurologist.

[Kwinholt in reply to Softballman]

Also, if it works for you it is something that you would have done every 3-4 months because it does wear off. Another reason to make sure your insurance approves it. 😊. Karen

[Kwinholt in reply to Softballman]

Hi there. Where are you located ? I am in California. I am very fortunate to have a wonderful Neurologist that is very supportive . Botox does not always work for everyone but it seems to help me with my dystonia in my foot and ankle. Make sure it’s approved by your insurance too because it’s very pricey. Take care. Karen

[Softballman in reply to Kwinholt]

Michigan

[LearningAllICan in reply to Kwinholt]

Sadly Botox didn’t work for my husband. But it wasn’t Botox, it was Dysport. Wondering if I should try Botox ? If it’s worth the fight with insurance. ... ?

[Kwinholt in reply to LearningAllICan]

I’m sorry it didn’t work. I’m behind on mine and seeing my Dr bc I had a surgery that made me reschedule my other dr appts and I can tell it’s time for me to get my injections. Karen

[LearningAllICan in reply to Kwinholt]

Thanks - good luck catching up on your apps. Sorry about your surgery. -Amy

[parkie13]

I have no Hi-Tech answer. Some suggestions, maybe something will help and work. Did you try thiamine HCL? Taking magnesium capsules, at least four pills a day. Are you using liquid magnesium spray on your toes? Using lavender essential oil helps also, on your toes. Far infrared Jade heating pad help too, especially with pain. You can take a look at one on eBay or Amazon. Could try soaking your feet in Epsom salts.

[Hidden in reply to parkie13]

Love these ideas. I will look for the magnesium spray. We do high dose B1, and magnesium powder supplement at night. Thank you! I didn’t even know there was an infrared heating pad. I will look at that too. Thanks so much!

[parkie13 in reply to Hidden]

I love my infrared heating pad, I have a small one , it's heavy because of Jade stones in it. On the lowest temperature it's just nice and warm oh, even in hot weather.

[Softballman in reply to parkie13]

Yes, yes

[Rosenmu in reply to parkie13]

I thought it was near infrared?

[parkie13 in reply to Rosenmu]

They are both touted and effective. There is a near infrared sauna, the pads are far infrared.

[Rosenmu in reply to parkie13]

I've also seen far infrared pads online, I actually used a full body pad called Bio Mat that is embedded with amethyst, and can create a sauna like treatment. Unfortunately it's pretty expensive. I'm hoping to get some results from that. EMF tends to be a concern for Far Infrared from what I have read.

[johntPM]

When that happens to me I increase my levodopa dose and the curling stops. Everyone is different, so first check that the curling toes happens when levodopa levels are low, i.e just before or just after a dose. If it happens when you're "on", it has a different cause.

[ruff1]

My husband had the same problem, once he was medicated with Stelevo the cramping went and he runs again . Occasionally he gets night time cramp a quick spray with magnesium oil and the cramping goes away 😀

[ConnieD]

Mine happens in the morning and is definitely due to low dopamine, it was one of my first symptoms and occurs usually first thing in the morning when I wake up. It goes away once my cd/ld kicks in. I’ve tried magnesium supplements, sprays, and don’t find it that helpful. I may try again, or ask about Botox. If I took cd/ld before bed or during the night I might not get it but I like to avoid cd/ld and give my body a break from it. Someone told me to put a bar of Ivory soap between the sheets, sounds crazy to me but google it with leg cramps some people think it works. I guess it’s cheap enough to try.😀

[flyingfoxone]

WE tried the Dove soap...it works!

[ConnieD in reply to flyingfoxone]

Really? that’s great to hear! I’ll have to buy dove soap! Thanks!!😊

[flyingfoxone in reply to ConnieD]

I know, it's weird but a friend told me and I tried. It really helped my husband. I got the very small travel size and placed it under the bottom the sheet near his feet. It's definitely worth the try; good luck!

[ConnieD in reply to flyingfoxone]

Thank you, something so simple too!!😊

[TiagoH in reply to flyingfoxone]

what exact dove soap did you use?

[flyingfoxone in reply to TiagoH]

Just a bar you can buy at any drug store. Brand name DOVE but others have said any brand will work. Hope it works for you too!

[parkie13 in reply to ConnieD]

Any bar soap will do

[ConnieD in reply to parkie13]

Thank you!

[tedhoskins]

I suffer the same problem with my toes, on my right foot,

but only when my main 'drug', Stalevo, is close to wearing out.

Once I take one of my four pills, the foot reverts to normal.

[Vjbaiocco]

I take 100 mg. of Thiamine hcl and it helps me.

[Cjbro2000]

I used to get that a lot before I started

taking carbidopa/levodopa for my Parkinson’s. Haven’t had the problem for several

years now. (Thankfully! It was really painful and restricting.) But there are some interesting remedies mentioned here. I’ll have to keep them in mind should the toe curling ever return. 👍

[PDGal4 in reply to Cjbro2000]

Yes me too. One of my earliest symptoms. Very painful. Couldn’t run at all and would come on anywhere between 1/4 mile and 3/4 mile of walking. I’d have to keep stopping and try and stretch it out. Like you Cjbro2000, C/L has kept it at bay for years now. The soap solution sounds interesting. Does anyone know how, or why it works?

[ladyaudree]

Check on Ebay and Amazon and look for the soft gel toe separators. I use them to keep my toes aligned. You may have to try several styles to find out what works but they definitely help me. (Pack of 2 Pairs, 4 PCS) Dr.Tu Gel Triple Toe Loop Separator Straightener Alignment Pads

by Dr.Tu

4.2 out of 5 stars 3 customer reviews

2+

(Pack of 2 Pairs, 4 PCS) Dr.Tu Gel Triple Toe Loop Separator Straightener Alignment Pads

About the product

This soft, contoured pad also relieves forefoot pain while helping prevent blisters and corns. Adjustable toe loop holds cushion securely in place.

Relieves ball-of-foot pain often associated with hammer toes. Make shoes & walking more comfortable.

Fits underneath your toes to fill the gaps caused by Mallet toes, hallux valgus,

Supports bent-under toes, easing pressure on toe tips and relieving stress on the metatarsal area.

Proven relief for rigid hammer toes and related toe-tip corns and ball of foot pain. Gel Hammer Toe Cushion eases pressure on toe tips as it comforts and supports bent-under toes.

Report incorrect product information

[LearningAllICan in reply to ladyaudree]

thank you!

[Stazina]

The only thing I remember Michael J. Fox saying was that the first thing he does in the morning when he sits up in bed, is to put his feet in sturdy shoes. I would consult your doctor about Botox, this seems like it would be a good option to relax his muscles.

[HeartSong]

My toes starting to pull up and under is usually the first sign that my levodopa is wearing off and it's about time to take more. I do a few different things and they all help a little: 1) As soon as the levodopa has taken effect again, I put one foot on the opposite knee minus the shoe and gently stretch toes down and then the entire foot up a few times. I also gently pull each toe out away from my foot. 2) I put my sock foot underneath my chair with the tops of the toes against the floor and gently stretch the top of my foot and front of my lower leg (hold on to something to keep from falling out of chair). 3) I use Flex-Tastic, a toe stretcher that's sold on Amazon. It's not for wearing with shoes as it is too big - just to wear for a few minutes when you are sitting to stretch the space between your tight toes. It's very relaxing. 3) I apply magnesium gel (made by Wisdom Health from either Amazon or VitaCost.com) to the top of my feet and toes and around my lower legs just before going to bed. Warning: if you get topical magnesium on the bottom of your feet, it will cause them to peel a lot. No harm done, but it looks a bit strange. Also, the gel leaves a slight film on your skin which will come off on your sheets. It washes out of the sheets, but I wear loose fitting socks to bed so that won't happen.

[LearningAllICan]

Thank you- I am going to buy some toe separators like the flex-tastic and I just bought some magnesium oil to try. thank you so much!

[TiagoH in reply to LearningAllICan]

did the magnesium oil end up helping? My wife has very painful dystonia in her feet

[Hidden in reply to TiagoH]

Magnesium oil has not seemed to help. We are waiting for insurance approval to try Botox. Expecting to try it within a week or two.

[TiagoH in reply to Hidden]

My wife is doing the Farias technique but hasn't been better yet. It's supposed to take months. She has also started HDT

[LearningAllICan in reply to TiagoH]

how's Farias technique working for your wife? sadly, Botox didn't help my husband.

[TiagoH in reply to LearningAllICan]

She's still unable to do the exercises for the amount of time required because of the spasms and pain so I still can't say if it works or not. She's doing them everyday

We also switched to allithiamine and magnesium taurate. Pretty expensive but so far no improvement

[LearningAllICan in reply to TiagoH]

Sorry. Stay strong

[etterus]

I have found the best self help technique is to stretch the toes as well as the posterior calf muscles 2-3 times daily. The toes are done by manually pulling up and sustaining the stretch for at least a minute.

The calf stretch is basically the runners stretch. Make sure you keep your toes pointing forward and keep your heel flat. The safest way is to perform it at the kitchen sink to utilize arms on the sink so that you can not fall. Hold for several minutes.

These techniques will elongate the muscle tissues that are shortening. That means that the trigger is less easily reached.... stretching lessons the trigger.

[LearningAllICan in reply to etterus]

thank you. stretching does help. I will have him try your stretching suggestions and have him to them daily to elongate the muscle tissues.... good advice.

[jenniferdunstan in reply to etterus]

Very helpful advice. I will try it thank you for taking the time to post .

[danfitz]

Celery seed extract works for me. So does ibogaine, but there are issues in acquiring it in the states.

[chartist in reply to danfitz]

danfitz,

Can you please add your information about the use of ibogaine and celery seed extract to control toe curling to the thread link below? A lot of members on this forum have reported issues with toe curling , so any information that may help this issue will be appreciated. Information on dosing will be helpful also. By adding your information to the link below will allow more members to see it.

Thank you!

healthunlocked.com/parkinso....

Art

[LearningAllICan in reply to danfitz]

Can you tell me how much celery extract do you take and I will research Ibogaine as I have not heard of it before... glad you gave relief !

[danfitz in reply to LearningAllICan]

The active ingredient in celery seed extract is 3-n-Butylphthalide. I take capsules that contain 75 mg of the extract (85%). That yields 63.75 mg of 3-n-Butylphthalide. I take 3 capsules 3 times per day. I got the dose recommendation from a post here but can’t find it now.

It took several days for the effect of the extract to take hold.

[LearningAllICan in reply to danfitz]

Thank you