cramps or spasms

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aaronathy

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Having a hard time lately. Spasms? Cramps? on the outside of each leg will not let me sleep during the day. Having to stand and watch television to stop them is getting my wife really upset. Can't find the right drug or combination to make the day more enjoyable. Being exhausted but having to walk to not feel spams isn't fun. Sometimes I am glad I can still walk yet but otherwise really really frustrationg.
 

Nikki J

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I thought this deserved a thread of its own. Sorry you ended up diagnosed but glad you found your way back here.

Are you taking anything for either cramps or spasticity? For cramps prescription mexilitine has been found to help quite a lot. On your own you could try Magnesium, tonic water or pickle juice or mustard.
For spasticity many take baclofen though there are other things to try.
 

GregK

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From your last post you've not been diagnosed yet. You had 2 clean EMGs and two doctors did NOT diagnose ALS.

Were you?
 

aaronathy

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Yes, I was diagnosed 11/15.
 

tripete

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I do not take medications and have founds the cramps and spasms to just be part of our "new" life. My wife does rub me down with coconut oil and gives me epsom salt baths and they help some. I am sorry to say that it is just part of who we now are.
 

pjinca

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+1 for the Mexiletine. I had bad cramps and this reduced it quite a bit and quickly. I take a 200mg capsule three times a day.
 

Scotiaspirit

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Is Mexiletine available only by prescription of is it an over the counter medication? I too have frequent episodes of cramping and spasticity (lately more in my upper arms) than it used to be, and pickle juice seems to help some. Some people take quinine, but I cannot take it due to side effects on a blood pressure med that I take. Hope you find some relief of your cramping soon.
 

pjinca

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Is Mexiletine available only by prescription of is it an over the counter medication? I too have frequent episodes of cramping and spasticity (lately more in my upper arms) than it used to be, and pickle juice seems to help some. Some people take quinine, but I cannot take it due to side effects on a blood pressure med that I take. Hope you find some relief of your cramping soon.

Here in California it takes a prescription. Mexiletine only helps the cramps. For spasticity, I have found nothing to help that. I did try Baclofen but it didn't help.
 

Lkaibel

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Medical marijuana appears to be a miracle for both issues, at least for some people (not sure of your state laws or your preferences). Talk to your Doctor about various options. I am seeing a whole other attitude on the part of MD's about trying and prescribing meds for symptom control when it comes to ALS. They are much more willing than they seem to be even with cancer.
 

Scotiaspirit

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I saw my doctor today and got an RX for Mexiletine. Although it mentions it is used for heart arrhythmias, it is not Health Canada approved for treating ALS or other neuropathies as an off label use like it is in the USA. However, my doctor felt it is worth trying anyway, and wrote me a prescription to try Mexiletine for cramping and spasms. I will report on how it works in the coming days or weeks. Hope it does help to some degree.
Paul
 

KimT

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I was offered Mexiletine but declined because I already have a heart arrhythmia and it isn't a good drug for the type of arrhythmia I have. I just use Valium, magnesium, and coconut oil (oral and on my body.) If they get painful, I pop a painkiller but the Valium helps me the most, especially during the day.
 

tarheels65

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I have recently gotten a massage therapist to come to my home and massage my legs and feet and this helps some.
 

Scotiaspirit

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I just started Mexiletine on Tuesday of last week. It makes my complexion very red (face) and unless I have a gastrointestinal bug since starting it, it works well as a stool liquidator and softener too. Rather that effect will wear off or not, I will give it a few more days. I been taking 1x 100mg a day to start; trying to decide if it should be taken in morning or late in the day. So far, it has NOT made a significant difference cramp wise but will give it another week to see if it will be of benefit or not.
 

Scotiaspirit

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I tried Mexilitine for almost three weeks and it did not result in reduction of cramps for me. My doctor withdrew Mexilitine a couple of days ago and put me on Ativan (Lorazepam 2mg) up to 3x day to try for now. It works both good for cramps and an extra benefit is a good nights sleep! Will see how it goes and report on it again in a couple of weeks.
 

KimT

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Valium (another benzo) works best for me, too. I also take 1,200 mg of magnesium but I always have taken high doses of this because it helps my heart beat normally and helps (a little bit) with constipation that Remeron causes.
 
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