Just FYI, want to update my earlier post that gave high marks for gabapentin/neurontin for restless legs...I no longer take gabapentin because it caused serious brain fog. I'm trying to manage a new symptom - toe cramping in my right foot that is very unpleasant. I'm able to take a low dose of clonopin for that, while I wait to see a neurologist who specializes in botox for toes/feet. My fear is that the botox will produce a whack-a-mole effect in which the dystonia moves to another part of my body to produce cramping, if it can't affect the toes. Will let yu know how that goes. Meanwhile, I have increased stretches, yoga but find I can't get much aerobic exercise ever since last winter. I had the flu for five days, followed by a severe cold, followed by a sinus infection. Somehow those health set backs severely weakened me which is a bitter pill. I was quite fit and vigorous until those events transpired. Has anyone successfully regained lost ground?
I would greatly appreciate hearing from others.
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jenniferdunstan
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My Neuro got me to take Magnesium Bisglycinate as it is up to 6 X more absorbable, The toe curling up still happens but a push to the floor relieves it now. less cramping over all.
I have found this remedy upon chance to address my own issue, but you should definitely look into your iron status and also try supplementing potassium citrate.
RLS can definitely result in people with iron-deficiency anemia.
So far I'm my own guinea pig, but the K citrate supplementation helped to alleviate hypnic jerk and other twitches while trying to fall asleep. I just know that the onset of my symptom was after my major detox effort and knew that I was running low on K as well as B1 (which I also highly recommend for brain fog, and may address the lactic acid buildup associated with RLS). I hope you try it and see if it helps.
Potassium Citrate is a urine alkalinizer and also helps prevent kidney stones (possibly helps renal issues, also associated with RLS). It could lower your BP and heart rate, so be sure to start with only 1 pill (limited to 99mg) at a given time. K will also help digestion and help alleviate constipation in those who are deficient. It definitely helps me whenever I get that annoying "funky chicken" legs as I call it, especially after drinking or binging on carbs.
Quite the informed replay and I thank you for it. I will proceed cautiously as I'm cutting back on my Sinemet dose at the same time as I require less of it than I previously realized. A good venture with fewer dystonia incidents but produces side effects at times, esp. that suit of lead feeling.
I had the same series of events last Dec-Jan , and was astonished at the rate of my decline in endurance, muscle strength, etc. Poor sleep due to cough compounded the problems. I really had to push myself to start a very slow increase in cardio and weights, and now am doing fine. But I am trying to formulate a plan for “next time”. I’m taking Vitamin C 2G/day. In hindsight, I should have increased my C/L during my illness, and I’ve discovered the value of a few nights of codeine cough syrup, lots of guaifenesin. The most effective way to avoid becoming sick is for me to avoid my grandkids, but that’s hard! Take little steps in your cardio rehab, but “just do it!”
Your response is much appreciated. Glad you are staging a comeback with exercise too, I truly relate to your comment about missing your grand kids. Ditto!
Botox has worked well for me on curling of toes; enabled me to dispense with cane w/ no falls. Only works for 13 weeks before another treatment is needed.
I took one 4 mg extended release ropinirole pill 2 hours before bedtime. Stopped my restless leg very well. After a couple of years it started to lose its effectiveness. So, at my neuro's suggestion I take 1/2 a pill 3 hours before bedtime and a whole pill and hour before bedtime. Works great.
I have had some relief from foot- and toe-cramping by using magnesium. Also a doctor I know suggested quinine via tonic water...saying he doesn't know why but sometimes it seems to help, said he has no guidance on how much or how little.
No knowledge about that, in fact my internist mentioned that in tonic water he had to assure me the amount wasn't so infinitesimal as to overcome my raised eyebrow questioning why he'd even bothered suggesting it to me, it is that tiny an amount.
Hi there. I have Dystonia in my toes, foot, ankle, hand ect. Cd/ld does help but I also receive Botox injections in the bottom of my foot and ankle and shin every 3 months. It helps me greatly to continue to run. Make sure they check that your insurance covers the injections too. Sometimes we have to fight for them. I understand as well about trying to get your stamina and energy back. I had surgery back in October and I’m still trying to get it back. However it was to reattach my hamstring muscle so it’s a slow process but frustrating . I am walking and will attempt the gym for the first time since surgery. I have more anxiety then before and end up talking myself out of going but today my son said he will go with me. I hope the Botox helps you because I know how painful the Dystonia can be. Take care. Karen
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