Seeking Advice on 200 mg Dose of Medication

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sanjay

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I am taking 200 mg. at bedtime...............works great........I sleep like a baby. Daytime my sensory issues come back. Those of you who have had success with this med..........how much do you take? I have been told I am taking a wimpy dose.Thanks for the helpJanet
 
Can I ask you what type of sensory issues you have? I was on this drug months ago. I took 600mg but then stopped after 2 months. Now I think I am having nerve pain and what to talk to my doctor about taking this again. Does it help your sensory issues?
 
I have my "problem" in both legs / feet. I have twitching / aching / burning / tingling / and sharp stabbing pains sometimes. I have had EMG so I know that I do not have neuropathy. I am not sure what I have.....probably BFS or something like it. I go back to my Neuro in a month and I hope to get some kind of diagnosis. He put on the sheet of paper you take to the check-out "chronic pain". I don't think he knows what I have.
 
After 15 months of twitching I started to get that kind of pain also. Feels like a stinging or burning pain. Some days are worse than others. I hope it's part of BFS and not nerve damage. I had a clean EMG a year ago but I know things can change in a year. Thanks for your help. By the way...200mg is a very low dose. I have read about some people taking up to 2400mg. Is it helping your pain at all?
 
I am no EMG expert but I would think that if you had pain in your calf and the doctor put a needle in it that it would show up on the EMG. My doctor checked my muscles on my entire left side and also checked my spine. Like I said, that was over a year ago and things can change. I plan on bringin this up to him on my next visit.
 
Barbie,I don't mean to be nosy, but.......did your neuro give you a BFS diagnosis? Mine really did not tell me anything. Oh yeah, and I have stinging / burning skin, and sometimes it feels like an ant bite - that hurts. Where is your nerve pain located?Janet
 
I had 2 neurolgists say "benign faciculations" but of course they don't know the cause. The pain is mostly in my arms and legs but it can happen anywhere. Yesterday was a good day where I hardly had any pain at all. The strange thing is I don't feel any at night. I lay down to go to sleep and I feel so much better. Even if I wake in the middle of the night I feel nothing. As soon as I get up and move around it starts up. Sometimes I think i am going crazy with this stuff. I finally got over the fear of the twitches and now this. I am just exhausted from it all already. I wish I had answers but I know I will never find them. How long have you had pain for? Is the gabapentin working for you?~Leslie
 
I have been dealing with this for about 3 years. I have been going to my GP all that time.....no help. I just started going to neuro about a month ago. The Gabapentin helps at night. I think I need to take it during the day as well to control the pain. Are you in pain? I have a constant "ache" in my lower legs (shin / ankle ) area. Did the Gabapentin help you at all?
 
I orginally took the Gabaepntin to help with the twitches. Then I realized it was stupid to take medication just for twitching. Now I am thinking it would help with this nerve pain or whatever it is. It only lasts a second or two but it feels like a bee sting or sometimes a burning feeling. I was reading up on BFS/PNH and it does list these as symptoms so I am thinking it's all related. I also have thyroid problems so maybe that contributes also. This stuff is enough to drive anyone insane.
 
I read posts a lot but don't respond very often. Gabapentin and EMGs caught my interest here. I did receive a Cramp Fasciculation Syndrome diagnosis 2 years ago following my EMG which showed "showers of cramp potentials" for no reason and had the EMG staff baffled. This was the final proof the neurologist needed since everything else fit -- visible fasics or twitching in the calves, extreme exercise intollerance, muscle stiffness and tightness, the pins and needles, shooting pains, etc.That was the EMG part. For two years prior to the diagnosis, as the functionality of my legs decreased from being a competitive athlete down to being able to walk, I'd tried endless things -- Physical Therapy, steroid injections, NSAIDs, Anti-inflammatory diets, Orthotics, Chiropractic Adjustments, acupuncture (although the calve muscles were so tight the needles wouldn't go in), homeopathic remedies, vitamins, etc., etc.I tried Gabapentin after the diagnosis and it was the first thing that had any effect in two years. There was an immediate loosening of the muscles and the pins and needles and shooting pains went away. The visible twitching went way down but did not go away. The twitching itself didn't bother me at all, though, just the tightness, muscle tearing and exercise intollerance. I'm one of the high dose people mentioned in the string at 2,400 mg a day. I've made a systematic experiment of medication combinations over the last two years trying nearly all the meds associated with CFS or BFS including the anti-epileptics, benzos, muscle relaxants, SSRIs and SNRIs, etc. I'm not going to go into that now but follow up with me if you'd like more on that.Anyway, I'm at the very end of that experiment. I've regained about 75% functionality with different med combinations, with Gabapentin as the main one. I can't sprint but I can do about everything else. Sorry about such a long post.
 
Great post Duke. So it seems that sensory symptoms are associated with BFS/CFS/PNH. I hope that is what is causing mine. I just don't need anything else going wrong with me. I struggled for over a year with the twitches. I don't need anything else to struggle with. I really enjoyed reading your post.
 
Duke,So, you are a fan of Gapapentin. I think I need to increase my dose of 200 mg. at bedtime. How do you take your dose? Any unwanted side effects? I really enjoyed your post......Janet
 
I take 800mg 3 times a day (usually at meals). No side effects for me. Everyone is different of course. Thanks for the compliments on my post.
 
Duke,does this help you with the twitches as well as the sensory stuff? I take klonopin now but am interested in switching to gabapentin. Mary
 
Mary,I tried Klonopin and it made me really high and air headed. Had to quit that. There are less visible twitches in my calves with Gabapentin but you can still see them, especially after I exercise. I don't have a lot of info for you if you're trying to stop the twitches because all my efforts have been at defeating the exercise intollerance -- although I'm sure the two are related.~Duke
 
Thank you I am sure you are right. I twitch more in my calves and arms after I exercise but the klonopin probably lessens it and It does not have any adverse side effects. I am going into my neuro week after next so I will as him about neurontin. He does not think I should be working out at all and says I am too rough on my body but I have always been an athlete and will continue to work out until for some other Unknown reason hopefully really old age, I can't. ALthough I think that maybe the working out and a lot of stress may have led to all this in the first place so I have modified my routine so its less strenuous. Thanks for your help hope you can keep running.Mary
 
Gabapentin was one of the first meds I tried (phenoytin was the first) for my bfs. I took it for over a month and it had no effect whatsoever. I know take clonazepam to calm the twitching, baclofen to calm the cramping and diltiazem for days when I exercise a lot and the cramping gets severe. They all work for me, especially for the cramping. The klonopin (two x 0.5 mg/day) helps with the random twitches, but I think there is no help for the 24/7 twitching in my calves. I also tried oxcarbazepine to no avail. Of course I also did the many, many homeopathic remedies and am still doing several - mostly to no avail.
 
Much like you, MSM, I was told that the real solution is to live a "sedentary" lifestyle. I'm not going to accept that without a fight. Here's my experimentation for the last 2 years. I've tried all the meds listed below either alone or in combination. I'm on the very last med from the original experimentation list that I compiled based on info from this website and the people on this site. I'm going to try the last one for about 60 days, then taper down and go with no meds at all for a few months just to see what my baseline is. So I'll know the baseline and the best that meds can offer, then I'll have to decide if the meds are worth it. I tried the alternative/homeopathic/complementary stuff too, Dread, and it didn't even make a dent.Meds:Anti-epileptics - Gabapentin/Neurontin, Lamotrigine/Lamictal, Carbamazapine/Tegretol, Oxcarbazepine, Phenytoin, Sodium Valproate/DepakoteBenzos - Clonazepam/Klonopin, Clorazepate/Tranxene, Alprazolam/Xanax, Muscle relaxants - Baclofen, SkelaxinSNRI - Prozac, AmitriptylineCurrent Meds Gabapentin/Neurontin - 2,400 mg a day currentlySodium Valproate/Depakoe - 60 mg/dayBaclofen - 30 mg a day currently SNRI/Amitriptyline - 50 mg at night
 
Thank you for your information I find it helpful to see what a fellow exerciser is doing to try to stay active. I have just started the gabapentin and will see how it helps to maintain me. Good luck with your weening off. Let me know how it goes. Mary
 

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