Myoclonic jerks :(

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Ivanatron

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Hi there

I haven't visited the forum in 4 years and thought that maybe it's time to say hello. I was diagnosed with epilepsy 16 years ago and am currently taking Lamictal. I had an appointment with my neurologist last week and she suggested that add Clobazam to my day as I have been experiencing myoclonic jerks.

Does anyone experience these? They started off a few years ago and were not very frequent. I experience them daily now..more so when I am tired. I'm not gonna lie, I'm really scared to add another medication to my life and don't know what to expect. I mean, I would love to not have these jerks anymore, but the idea of having to be on another medication makes me nervous, and actually quite sad. I'm having a really tough time coping with it all (which is weird since I've known about my epilepsy since I was 16! Talk about denial!).

What do you guys think?
 
Hey Ivanatron,

Could it be that your current med is no longer working? Are you maxed out on Lamictal? Maybe the better solution would be to switch to a different drug, maybe it's lamictal that is causing the problem. When i was on lamotrigine, the side effects of making my seizures 10x worse didnt' show up till about 6 months into taking the drug.

Clobazam is a Benzodiazepine, which is not really intended for long term use. Ativan is in the same family and this is my emergency pill when an aura comes around for me. After i take it, i'm not feeling normal till 4 days later, thats how long i can still feel the effects of it. I've known of people on Benzodiazepine drug and it was hell for them to come off of it, their doc started them on it to relieve anxiety, well it turned into a drug for her that she needed and could not get off by herself. Outside help needed to intervene.

I'm not condemning the drug, in a lot of cases it helps people.

Here is something from the internet wikipeidia

Seizures[edit]
Prolonged convulsive epileptic seizures are a medical emergency that can usually be dealt with effectively by administering fast-acting benzodiazepines, which are potent anticonvulsants. In a hospital environment, intravenous clonazepam, lorazepam, and diazepam are first-line choices, clonazepam due to its stronger and more potent anticonvulsant action, lorazepam due to its faster onset and diazepam for its longer duration of action. In the community, intravenous administration is not practical and so rectal diazepam or (more recently) buccal midazolam are used, with a preference for midazolam as its administration is easier and more socially acceptable.[36][37]

:piano: :pop:
 
Hi Zolt

Thanks for replying! I've been taking Lamictal for probably around 10 years and haven't really had side effects from it. I am at 500mg/day so it is quite a high dose..I've had seizures while taking it, but they were triggered by me being an irresponsible 20-something-year-old (drinking and not sleeping enough. I have grown up since then). I was worried about the habit-forming properties of Clobazam as well. I have taken Ativan in the past before bedtime and didn't have any weird side-effects from it. It made me really sleepy, but I woke up alright the next day.

I am too scared to try a different medication because I worry what the side-effects would be. I have tolerated Lamictal well thus far and have read all sorts of terrible side-effects for a lot of the drugs. My doctor wants me to start taking 5mg of the clobazam at night before bed and see if that helps me. I am worried and scared and paranoid. Ugh.
 
I sometime experience Myoclonic jerks which usually end up going into a clonic tonic sz.
All the meds have basically the same side effects.

I've been on over 20 drugs and dr's in E/r try tell my neuro I need be on more.
Iwas diagnosed when I was 2 years old.
 
Hey,

I've had severe myoclonic jerks for years, experiencing them everyday with different triggers but lack of sleep is the biggest provoker... I've taken clobazam for them off-label (it's a new benzo that's MUCH less addictive then other benzos which was why I was prescribed that for the jerks as opposed to Klonopin)

Although I only took Clobazam briefly, it helped in a VERY minute amount but not as much as Ativan(which I've taken) or other benzos.... for myoclonic jerks, really the only cure to them is a fairly strong benzo unfortunately, so it's a tradeoff... I think if you can get on a good benzo for long enough to sort of 'retrain' your brain into to stop jerking, it's a huge benefit that outweighs it's addictive properties although that is an issue.

My best recommendation after many years and countless hours of research? Push for a solid benzo (just had a jerk typing this sentence, to put my experience in perspective) most doctors are hesitant to prescribe them because they're street drugs and addictive but honestly, a solid benzo or anxiety drug like xanax is the only thing that will help as people with the 'jerks' need something to slow down the nervous system big time... which is why you'll notice when you're drunk, you're not having jerks...

Some people swear by magnesium or other OTC remedies but there is NO other help except good benzos for myoclonic jerks...
 
On a sidenote, typing that up, I'm now in one of the biggest myoclonic jerking 'sessions' I've been on in months... fun times...
 
I get myoclonic jerks daily, tiredness definitely makes them worse and they seem to get worse when I'm have complex-partial seizures. I was on clobazam when I was first started on Lamotrigine and then changed to Keppra because of a reaction to Lamtrigine. I found Clobazam made me very disorientated and not really very aware of what was going on around me. I would frequently drop to the floor, not even necessarily always feeling faint before falling (on one occasion 20 times in 1 day) so I was taken off it and I didn't really like being on it. I also didn't notice a change with the myoclonic jerks while I was on it but this was not long after being diagnosed with epilepsy so it was not well controlled which may be why and I was probably not alert enough while on it to notice a change either.
 
Hi Ivanatron,

I'm sorry you're having a tough time right now and hope you find the right med. I would be careful with the benzo's. They are very addictive and hard to get out of your system. I read about an herb called skullcap that has a relaxing effect on the nervous system.
I'm newly diagnosed with atonic after a fainting spell and starting Lamictal. I also have
very bad depression and hope it helps with that.
I understand how you feel. This is not easy:( but you will find the right med.

Daisyduke
 
On Clobozam. was a 'rescue' med when I had to suddenly ramp down on Zonismide was on 10 mg twice a day and worked like a charm by mostly knocking me out and I was sleeping 18 hours a day. But that was only for 4 weeks than I was weaned down to 10 mg (had some fairly unplesant withdrawl) just a night which worked ok took my jerks from 60 a day to about 30 but the nature of Benzo's is to poop out so I have just added Epilim to my cocktail.
 
Thanks guys! I finally started with Clobazam on Friday night. I had a terrible day on Saturday though. I was super groggy all day long and felt nauseated and headachey. I emailed my doc and she told me to take the med every second day instead as it has a relatively long half-life and that's what I did. I felt better on Sunday and then took it again last night. I don't feel like I'm going to die today (slight exaggeration lol) but am still a bit tired. I notice that I dont have the twitches as much but holy moly did I have a lot of them on Saturday! I think that it might have been related to the fact that I was freaking out about getting on this med for the past 3 weeks. It's amazing how much anxiety this whole process is causing me! I've had the epilepsy for the past 16 years and I think that I am finally dealing with it emotionally now. It's tough having to come to terms with it at the age of 32 :(
I don't know anyone with epilepsy (and I think that I have been avoiding meeting anyone who does have it) but I realize now that it makes me feel very lonely as the people that I love and who love me don't fully understand what I go through.
Wow, that was overly emotional! Sorry guys!
 
Clobozam should help with the anxiety too. I think just talking about meds with folks who have been there, done that helps. While being ever mindful that each of our experiences may vary I know that once I was off being 'rescued' and on a lower evening dose only it was a much more manageable med (for me) and always the first few weeks are frankly pants on any med.

So chin up :) ask away if you have any more questions.



Q
 
Yeah the anxiety has been brutal ever since my doc recommended that I start the new med. I guess it kind of made my epilepsy real in my mind as up until now I treated it as a separate entity from me as a person. I have been googling and reading posts and people's experiences and it seems that everyone reacts in their own way. There doesn't seem to be a guaranteed reaction to the meds. I have been trying to lead my life in a way that anyone else would lead theirs but I worry now that I might not be able to do that - I'm really scared of what might happen in the future.

Another thing that I have been reading is that women who are pregnant/nursing should not be taking clobazam as it passes through the placenta/breast milk. Not that I am planning on having a baby right now, but it's a little scary to know that it kind of limits me. I know there are a lot of women on this site who have children and epilepsy, how do they cope?

Sorry for all the rambling and questions!
 
Planning pregnancy is the key.

Saying that I didn't and have a very healthy 20 year old son. But we know a lot more about epilepsy meds now than we did 20 years ago. I couldn't breast feeds because they knocked my little one out.

But the various epilepsy societies have lots of info on epilepsy and pregnancy. But the rule of thumb would be get seizures under control and then talk with your Neuro / Health Providers and talk through options before trying to conceive.

Q
 
Thanks for that. I am not planning on it any time soon, but it's always good to know. My neurologist said that it should be okay if I do decide to plan a pregnancy one day, but of course I would be closely working with her and would be monitored. It's funny how a lot of this stuff comes up when you're older - I wouldn't even have thought to ask questions like these when I was younger. I guess now I just have to learn how to cope with this and try to focus on the here and now rather than the "what-if" scenario...easier said than done hehehe
 
When I was started on Dekapote (Epilim) my very posh and serious Neuro said Mmmm Mrs L do you have children or are you considering starting a family. I spat my coffee out saying sweet Gods' NO have one he's 20 and am waiting for the grand kids have an implant all in in place so no SURPRISE BABIES this side of menopause (I am nearing 39).

Gods' it's expensive enough putting 1 through university.

Q
 
hahahaha!! Yeah that stuff isn't cheap! It took me a long time to pay off my student loan that's for sure. Thanks Queenie for the support. It feels good to talk to someone about this stuff!
 
Don't feel bad for getting emotional here. I don't know anyone with seizures either and after my diagnosis and having to move back home my "friends" dissappeared. Thank God I stumbled on this site. I thought I was I was "special" the way my body reacted to some of the meds I've been on. Then I had the pleasure of losing some teeth due to them so we all have our moments here and that's what all of us are here for. I get restless leg syndrome, if that's considered the same thing, I am on low dose of valium, melatonin for sleep. Before that I had some success with magnesium, and drank valerian tea (smells like ass but it works), you can find it in health food stores but check with your neuro before trying it. Good luck and welcome back.
 
That sucks about the friends thing. I was lucky because most my friends stuck around. The last seizure I had, the friend that I was spending most of my time with kind of disappeared herself...it was weird, since we were so close before..Perhaps it's because I decided to stop drinking altogether that all of a sudden she didn't feel like we had anything in common. Either way, it does make me feel different from others and even though most of the time people don't really thinking about me any differently, I worry that if my condition were to get worse, things would change...I found myself telling my boyfriend that he is free to leave me if in the future this gets worse....bleh! It's what happens when I get in a mood - everything seems dark and scary.
How come your medication affected your teeth? Is that one of the side effects?
 
Planning pregnancy is the key.

Saying that I didn't and have a very healthy 20 year old son. But we know a lot more about epilepsy meds now than we did 20 years ago. I couldn't breast feeds because they knocked my little one out.

But the various epilepsy societies have lots of info on epilepsy and pregnancy. But the rule of thumb would be get seizures under control and then talk with your Neuro / Health Providers and talk through options before trying to conceive.

Q

I've had E for over 30 years and have two grown, educated kids. My daughter is 31 years old, married and working. My son is 29 years old and just graduated from law school last spring. I couldn't breast feed either of mine when they were babies because of the medication I was taking at the time. With proper pre-natal care, women with E can have healthy babies.
 
Don't feel bad for getting emotional here. I don't know anyone with seizures either and after my diagnosis and having to move back home my "friends" dissappeared. Thank God I stumbled on this site. I thought I was I was "special" the way my body reacted to some of the meds I've been on. Then I had the pleasure of losing some teeth due to them so we all have our moments here and that's what all of us are here for. I get restless leg syndrome, if that's considered the same thing, I am on low dose of valium, melatonin for sleep. Before that I had some success with magnesium, and drank valerian tea (smells like ass but it works), you can find it in health food stores but check with your neuro before trying it. Good luck and welcome back.

Good friends will stick around, regardless. I only have a few really good friends now that my seizures have increased and I've lost my driving privileges. I've had plenty of side effects from AEDs, too. One medication for depression even brought on Type 1 Diabetes. So yes, we all have our moments. I've met others with epilepsy by getting involved with the local E Foundation. And once at a Starbucks I go to, I met a mother who is on a mission because she lost her daughter to SUDEP. And one of the friends who gives me rides now had a sister growing up with seizures. So just look around.... there are probably more folks out there with E than you realize.
 
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