Taking Anti-Seizure Meds - Experiences?

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I am on both and they work well. I take clonazapam 3 x day at .50 and neruontin 300-600 at night and it really helps me sleep and by the time I get up twitching if it was there is way down. I really do think it helps and will continue to take it until they come up with some other med that is better. Next week I am going to a neuro muscular specialist in INdy to see if he knows of any new meds or has any other ideas but my neuro who is sending me to him just did a clinical this week which I passed with flying colors and refilled my current meds. Take them they will help.Mary
 
I was put on clonazepam 0.5mg three times a day initially for a couple of weeks, then reduced to 0.5mg nightly and now as and when I need it. It helps.
 
Yes, I have tried both. The Gabapentin (Neurontin) was no help to me but the Clonazapam works great. I only take it when the twitching gets bad though as I am afraid of the addictivness to it. It really does calm the nerves which decreases the twitching.
 
I currently take 0.5 mg clonazepam 2 to 3 times per day at it helps reduce the overall frequency and it calms the entire nervous system some. I tried neurontin but it made no difference whatsoever. I am a cramper, too (BCFS) and I take diltiazem and occasionally baclofen for this. Both help reduce the cramping, though the baclofen makes me sleepy so I only take it at night.
 
So Twitcinstinkswhat do ya think _have you been on it enough to tell any difference- as im thinkin i need something as my nerves are in overdrive- pain and burning and twitches- really elevated- since i have the poor posture from weight lifting ive been trying to stretch and exercise my back muscles and my whole left side is on fire and hurts-so just trying tofind something that will make the pain and nerves settleDavid
 
Yes I can tell a difference. Twitching is almost non-existing. I was having a flare up and its calmed down now. The flare up was still not as bad as the initial onset back in late April. I think the first few months of BFS is the worst. My dad said it was and I am seconding that notion. I am going to skip my meds today because I have a Christmas party and I may drink a good bit. The Clonazepam is as needed but the Neurotin is 3 times a day. I don't have seizures so I think its ok to skip. Scared to mix any of that with alcohol.
 
43RichyThe43rd - The doctor has me on 300mg of Neurontin for 2 weeks then I move up to 600mg for two more weeks then 800 from then on out. I take. .05 or half the pill for Clonazepam.
 
With all the drugs everyone appears to be taking and constantly talking about on this site. Side affects or 'addiction' are really never mentioned. Can I ask for all those taking pills, are the side affects there? are they adverse? Both addiction and SEs worry me eg Klonopin, so I try to steer clear of drugs unless absolutley necessary. But others appear to have no hesitation in taking pills. Can I ask of the affects of talking them- good, bad or ugly??? I am on lexapro at the the moment and I know that has side affects- and that is supposed to be 'mild' Is the cure worse than the disease? I would be interestedcheersRodger
 
Klonopin (Rivotrl in most EU countries) is addictive and once you get really addicted it is not possible to get rid of it without addiction treatment. Klonopin should not be taken regulerly, it serves as life-saver for panic attacks (mainly, its a medicament for epileptics). 1-2 mg per day is really enough and it should not be taken more than 2 weeks. I know some do that but actually it hurts more than helps, especially once they stop taking it.For me, after 3 weeks of nearly daily intake before bed time it causes quick way to slumberland but only for few hours - I always awoke in the 2-3AM. I also noticed increase of twitching when stopping taking it but its known withdrawl effect.Neurontin worse my symptoms actually, I got more hotspots so I stopped taking it.
 
That is why I do not take Klonopin (Clomazapam) on a regular basis. If my twitching flares up and I get 1000's a day where I can't stand it then I take one. Otherwise, I try not too because even my neurologit told me it's addicting. Now, I am not sure how much you have to take and for how long before you come addictive to it. Maybe if you take it like 2 or 3 times a day for a year then, yes, you might get addictied. As for the Gabapentin, I didn't have any side effects from that and I don't think that is addictive. At least my neurologist didn't mention it being addictive but it didn't work for me. Basically, I try to stay clear of the drugs. I figure it's been almost 2 years with this stuff and if it's benign, I really don't need to take anything. Now, if things get worse I might but right now I really don't except for the small dose on Klonopin when I really need it.
 
Barbie, unfortunately with Klonopin you really do not need to take year to become addicted - usually one month with average daily dose about 2-3mg is enough. The risk of addiction highly increases if Klonopin is combined with Neurol or Prothiaden.But as you said, its best use is for immediate improvement when you feel really bad.
 
Well I use klonopin and I have been on it less than a year but it helps my syptoms greatly and helps me lead a normal life where I can run my company raise my son and take care of elderly parents as well. It also allows me to be able to work out and get a good nights sleep when I need it. I see no diference in taking this than people who need to be on anti seizure medicines or diabetic medicines for life. I am old enough and healthy enough where I don't take anything else and I;ll be darn if I will spend my life freaking out about my twitches like some of the members of this board. I also don't drink alcohol ever, nor do I smoke. So I guess if I finally have to have a vice I'd rather it be one that gets me over this crappy syndrome. When my doctors feel it is harming me in some way than I will decide what to do but right now this is how I am being treated and If I am weak or an addict because of it than all that I accomplish within the course of a day sure doesn't show it. At least I am not living my life out of a bottle. Mary
 
I'm not too worried about addiction as I take 0.5mg clonazepam only when I have flare ups. My neuro says you might develop a resistance to it and thus it becomes less effective if you take it all the time. Anyone experienced this?
 
Fair points Mary, if it allows you to function normally, then that is justification within it self. I dont believe it is a 'vice' as such, more a necessity, in particular with your situation by the sounds. I was just enquiring , in a very general sense. Klonopin was just as an example, as I hear a lot of 'success stories' about the use of that drug for controlling BFS symptoms, but also some concerns-just what I hear and read! I take, or try to take, very few drugs, but I think maybe my situation/symptoms allows for that for the moment. In a nut shell I dont like taking pills ( even paracetamol!). Each to thier own I guess, as to whatever helps your situation/symptoms. I am interested in side affects that people have experienced with any drug for BFS or BFS related issues, so I can make a more informed call should the need arise.cheersRodger
 
Rodger, I hiope you don't think that post was directed at you. I am just tired of people on here who discourage anyone from trying to control symptoms with mediction. I have no side effects other than less twitching and I encourage you to look into some of the meds available for this stuff. I am going to a new neuromuscular doctor who is a specialist in INDY on Thursday and will post if he puts me on any different meds. I hope you are doing well and encourage you to talk to your doctor about other meds if the syptoms become to bad. You may be surprised and find one that works well for you . Good luck and I will let you know what the new neuro says. :D) Mary
 
Mary, Keep us in touch let us know what the new neuro says. I am sure all will be well. Hopefully he will tell you be patient one day all of it will go away (keeping fingers crossed, then we will all have something to look forward to)Ter
 
For those who want the med-merry-go-round I suggest searching for posts by floater.He tried many different meds and posted his experiences including how much change in symptoms he saw.BTW for those who just say suck it up and live with it. That is fine. You can post this. But don't go militant on your position.If someone wants to take a med and as long as they are aware of the side effects / risks, I say go for it. People take meds for less annoying conditions than BFS.-43RichyThe43rdBTW I just snap my fingers and can stand at attention. No need for any med for that condition for me (in case you were interested).
 
I have been on Klonopin for three or so months. .5mg once a day (small dose, I know). I have been weaning myself off of it lately and have noticed a definate increase in overall twitchiness. I stopped taking it cold turkey last week and thought I was going to jump out of my skin so I went back on a .25 a day.
 

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