Meds that help Cramp Fasciculation Syndrome

I have been dealing with Cramp Fasciculation Syndrome for several years now. I have been on countless medications and have had IVIG treatments and nothing seems to be working. Please, if you have this disease, and are currently using a medication(s) that is helping you let me hear from you. My specialist seem to be at his wits end and wants to put me on steroids. I am refusing because of the side effects. I have been on steroids before and it wasn't pretty. I recently had to stop taking Dantrolene Sodium, a medication that was actually helping, because it was causing me severe stomach pain, cramping and diarrhea. Help!
Jupiterjane

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I am a family practice md who recently developed mild cramp fasciculation syndromeand have not tried any meds yet. Have you tried the combination of diamox and lyrica? The problem is generally caused by inadequately functioning calming pottasium channels and lyrica blocks the opposing sodium channels at the neuromuscular junction. Diamox has effects on sodium conductance also. Some people on the neuromyotonia(same pottasium channel problem but worse) thread have tried this combination with good results. It has the advantage of a good safety profile and no addiction potential

David

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David,
I have not tried the diamox but have been on the lyrica. The lyrica gave me severe chest pains and shortness of breath. The cfs has spread to all part of my body. I get muscle cramping in my stomach, chest ,back, arms, hands and of course where it started in my legs, feet and thighs. I also have Parkinson's which doesn't help. Thanks for your info, will ask my doc about the diamox.
Take care,
Jupiterjane

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Is the parkinsons disease diagnosis correct? After all, the muscle cramping can mimic rigidity and the reduced movement can mimic bradykinesia. The fasciculations can mimic resting tremor. The dopaminergic drugs can make peripheral nerve hyperexcitability worse( see comments on the Isaacs disease thread of over 1000 replies.

David

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Yes, the same thought occurred to my specialist. When he did the muscle nerve test to diagnose the cfs they also tested the tremor in my arm and it was indeed a tremor and not a fasciculation. I had 5 neurologists/specialist standing by for this test. They all concurred. Since then my Parkinson's symptoms have increased. there are times when I do not know which symptom belongs to which disease so I have to go with a list to each doctors and they help me sift through them. The whole thing makes me tired. At 49< I thought I'd have more life left in me...
Jupiterjane

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Hello Jupiterjane

Firstly, I agree with David's comments - do you actually have Parkinsons? it would not be the first time an EMG has been misread. I have read of people being diagnosed with Parkinsons and then the diagnosis changed to Isaacs Syndrome which is also called by clinicians as Neuromytonia or Cramp Fasciculation Syndrome etc etc. I can't recall reading of anyone being treated with Dantrolene Sodium for Isaacs.
It's a shame you got some bad side effects when it was giving some relief.
I was diagnosed with Isaacs over 18 months ago my current medication is Gabapentin 1200 mg three times daily, Tegretol 400 mg morning and night, Endep 20mg at night time - this combination of drugs is the best so far for me
Initially I had 7 treatments of plasma exchange. I have tried steroids but could not tolerate them.
Next monday I start on three monthly Infusions of Rituxamab. Juperiterjane - I wish you pain free days.

Rick
Sydney Australia

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Hi Rick and David
I'm not sure of anything anymore,all I know is when they started me on Sinemet for the Parkinson's the tremors in my hand and face improved, and I know that when I miss a few doses or the meds start to wear off I call tell a noticeable difference.
I have tried the Gabapantin and Tegretol but not together and I have not tried the Endop. When you take these meds do they stop your cramping and spasms, slow them down or what? I don't really know what to expect. I had back surgery on Wednesday to repair a degenerative disc. My back and hip and leg feel good now but the muscle spasm from being in an odd position during the surgery kept me in the hospital an extra day. Unbelievable pain! Am at home this morning, drugged up but feeling very sore. Time to go back to bed.
Take Care,
Jupiterjane

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Hate to hear that you have so much pain. Mine started innocentlyand very slowly a tree stand accident in 2001. Never really paid much attention to the sore muscles and the twitching it was part of the busy life right? In Feb. 2007 all went downhill. Had a car wreck and was not even towed in until the next day. There I sat in the snow and cold before I was picked up. 4 days later it hit me like a seizure muscle spasms uncontrollable jerking and horrible tremors. After hours in the ER I am Dx with drug addiction and/withdrawal?
Just had a lengthy visit in Oct 09, initially Dx with BCFS but wants to rule out possible spinal stenosis of any kind most problems are in legs with severe and dibilitating cramps and soreness afterwards. Started Tegretol to stop spasms will note how it works asap. Glad to finally find people who know what I am talking about now!!! Good luck to you all.

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Hi sore and stiff,
I talked with my neuromuscular specialist yesterday who seemed disappointed i me. I once again did not react to his recent ttreatment. I was on Requip and neurotin. He now tells me steroids is the next and final step. I have been fighting the steroids because I do not like what they do to me. If the steroids don't work then he says pain management is next. I have been there, they were flabbergasted too. I am taking hydrocondone 10 now and Soma but they only take the edge off and only last for a couple of hour. The pain, cramping and spasm are becoming increasingly worse and I am becoming more and more depressed. If my specialists gives up on me , what am I to do?
Jupirejane

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David, what do you think about Taurine? I read some studies that indicated it is an amino acid that protects against nerve hyperexcitability.. and helps cell regulation (osmosis?) and absorption of magnesium, among other things.. I couldn't find any studies done in relation to Isaac's, Cramp Fasciculation, Fibromyalgia... what do you think?

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Earthling,
Taurine decreases muscle fatigue in rats and reduces the size of strokes in rats, perhaps through it's antioxidant action. If it had similar effect on human muscle and peripheral nerve, one could expect a decrease in muscle cramping. The dose is 3 grams to 6 grams per day
I would like to see one of us try the fat soluble form of thiamine( vitamin b 1) called benfotiamine which works spectacularly in diabetic or prediabetic neuropathy. It also is over the counter, with initial dose 300 mg twice a day for 6 weeks, then 150 mg a day.
By the way, my survey of my 2200 patients turned up another cfs case, neurologist confirmed. That makes a total of 3 confirmed and 1 suspected. Prevalence could be as high as 1 in 550 for this overlooked mild end of the peripheral nerve hyperexcitability spectrum.

Dr David

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G'day Doctor David,
Any ideas who could try the Benfotiamine ?
Your findings are what many of us have discussed and expected. I am sure many of us in this group of patients have suffered for a long time being undiagnosed. I know I have been humiliated by some of the Medical Profession and their lack of knowledge regarding the syndrome
However we can't dwell and must try and do the best for those in the future that suffer this. That's what we are doing here when we discuss our problems, symptoms and fears so openly.
Doctor David, you may have considered this already but do you think it would be possible you may be able to present a paper with your findings. Surely the findings in your patient group would have some statistical medical value.
You are reading and have read here first hand the angst, pain and psychological suffering this is causing from so much diagnostic uncertainty.
We are all certainly benefiting from your first hand knowledge of Cramp Fasciculation and Isaac Syndrome.

Rick
Sydney Australia

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I don't know if you can present a paper or sit some doctors down and make them read every post written. According to my neuromuscular specialist I am at the end of my medication regime. I have just tried Requip 8mg a day along with neurotin 900mg a day and drew no response. The cramping and fasciculations are getting worse and my body is growing tired. His last ditch effort is the steroids which I have been fighting for a long time. He said if the steroids don't work I will have to resort to pain management. My whole body if affected by this "syndrome" and I am physically and psychologically spent.
Jupiterjane

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Jupiterjane,
I think your neurologist doesn't know about off label rituximab therapy for isaac's syndrome. Brand names are Rituxan or Mabthera. Rick has obtained good results in Australia with it. It's FDA indications are for non hodgkins lymphoma and refractory rheumatoid arthritis but any approved drug in the USA can be used off label. There have been 3 cases of PML out of 100,000 patients in the USA.
I guess I could submit a letter to the editor of a neuroimmunology journal about CFS prevalence of one in 550 in my practice. Another, interesting statistic is the one
in 300 prevalence among the 600 doctors at my medical center ( me and a rheumatologist). None of my family medicine collegues have heard of cramp fasciculation syndrome.

Dr David

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David,
It took me so long just to get to anybody who knew anything about what I was going through. I like my specialist, he is associated with a very reputable hospital and University, Barnes/Jewish and Washington University in St. Louis. We have tried many, many, medications. I am tired of thinking about this "syndrome", and of trying to find my own answers. I am tired of the pain...I am tired.
jupiterjane

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Gday Jupiterjane,

I read another recent Medical Paper today about the benefits of treating symptoms of Isaacs etc with Amitriptyline
I am taking a small dose 10 or 20 mg before bed - my opinion is it has helped.
One of the others in the group here in Australia is taking 100mg at night - this time last year when I met him he was only out of bed a few hours a day because of the pain.
He has improved greatly since starting the Amitriptyline.
It may be worth discussing with your Doctor.
I will try anything if it helps even slightly.

You will break through and get on top of this terrible time. I know the pain you are suffering and I do understand. No one can feel the pain except those that
have suffered the same.

Kind Regards
Rick Sydney Australia.

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I have neuromyotonia ( 3 yrs now) I use soma 350 mg, Gabapentin 300 mg & have tried many others. My doctor just gave me something new to try its Vimpat (Lacosamide) to try what do you think?

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Lacosamide is a new sodium channel inhibitor more specific for active neurons just released a few months ago. It's approved for partial onset epilepsy and diabetic neuropathy. It should work in isaac's like the other sodium channel blockers do

Dr David

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Sir,

I have recently about a year diagnosed with the same. I was hospitalized for over a week and a CK count of 19000. Yes, 19000. After a couple specialists and a big hole in my bicep, I was placed a tagratol, (SP). It has helped me, I only had to stop taking it because my prescription ran out, and I have to see another doctor at my new base to try to explain all of this to them. So far, military doctors that I have seen don't quite understand it. But since I started taking it, I have not had any issues, that is salt and hydration.

V/r,

Bill

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Jupiterjane,

You said you have not tried Diamox yet. It is a carbonic anhydrase inhibitor and Sulfa diuretic that affects sodium channel conductance. It should have been one of the first drugs to have been tried. In cramp fasciculation syndrome, a typical starting dose is 250 mg twice a day with titration upward to 500 mg three times a day or slightly less. It is a very safe drug . It can cause a mild metabolic acidosis and electrolyte disturbance which can be monitored with periodic electrolyte panel blood tests.

Dr David

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I have had random jerks and tics for about 4 weeks now.They came on suddenly.My head jolts from side to side and arms and legs just randomly move
Had prostate infection recently and i drink a fair bit of alcohol.
However ive noticed when i do drink my jerks and jolts are less.
Also history of parkinsons in the family.
Blood done ck and magnesium normal.

Also noticed some memory loss and difficulty talking.

The first symptom i noticed was weird sensation at the back of my head after weight training.

Im 32 years old and scared to death

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