Clobazam for a month before complete meds change?

[Loopy Lou]

Bear with me here, it's been a hell of a ride lately and i'm not quite sure which way is up!

Soooo anyhoo, things haven't been going too great on the epilepsy front lately. I decided in my infinite wisdom (!) that i'd give uni a go, and i don't think the extra stress has helped any, but an increase in seizures especially in the last half of last year took me down nearly a whole grade.

I've been on keppra 3000mg for about 8 years now, and am now on 300mg topamax a day after increasing it steadily, because the side effects have been awful.

Had an appointment with the neurologist last week, and was expecting him to perhaps increase the topamax some more, but he kind of threw me a curve ball and thinks that i may have built up a tolerance to the keppra.

I kind of like keppra, i get pretty much no side effects from it, and it worked really well for quite a long time, it was finding the right med to go alongside it to get rid of my focal seizures that's the problem.

So anyway he said he wants to put me on clobazam for a month short term, to see if it gets rid of these focal seizures, and if it works, then he wants to change all of my medication completely. This has got me completely freaking out for a few reasons.

First of all, i'm worried about going on the clobazam, with it being a benzodiazepine, and the effect that will have on me.

Secondly - does this mean that he suspects that some of my focal seizures are not seizures? He did mention they could be side effects or me not paying attention or something... i don't know.

Third - I start uni again in just under a month, by the time i start i'll still be on the clobazam, since it's going to take a week or two to even get the prescription. This is my thesis year and i have a lot of seriously difficult subjects, and i'm going to be starting it with my head in a fuzz and the possibility of a complete medication change, for something which may be worse and has no actual guarantee of working. Joy. Oh yeah and that drooling side effect. Keeping my fingers crossed i don't get that one.

Has anyone heard of a neuro doing this before? I've been mulling this over all week whilst waiting for my epilepsy nurse to get in touch with me as they promised she would, but they really don't like to rush things over here

(Also hi guys, i know it's been a while!)

 

[Nakamova]

It is possible to develop a tolerance to Keppra, but I would be hesitant to switch meds without more justification and explanation from your neuro. Did you ask about increasing Topamax as a first course of action?

You can read a little bit about Clobazam here: https://www.epilepsy.com/medications/clobazam/advanced
It is used for long-term epilepsy treatment, but it also carries the risk of developing a tolerance. And if you decide to go off it, there an besome tough withdrawal side effects. So before messing with your meds, your neuro should be very clear about the benefits -- and risks -- that Clobazam brings.

This link will take you to a post with links to CWE threads about Clobazam:
http://www.coping-with-epilepsy.com/forums/f20/has-any-heard-drug-clobazam-20393/

It's approval in the US is relatively recent, so CWE members may have limited feedback.

 

[Loopy Lou]

From what i could gather, the plan is to go on to clobazam for a month (i'm not sure if i should continue my other medication alongside this), and my neuro seems to think this should stop any focal seizures i'm having in their tracks.

I am more than dubious.

Anyhoo, if the clobazam does stop my seizures, he wants to change me from keppra to brivaracetam.

I've been increasing the topamax steadily recently, but it seems like every time i go up in it, the side effects are just horrible and take ages to subside. My fingers and toes go tingly, everything tastes strange, which results in me not eating for sometimes a couple of days at a time, and i get a lot of dizziness and more tiredness than usual.

I've had a nightmare of a time today. Have had to change docs because the surgery i've been at forever is closing, and the new place lost all trace of my details and didn't have any record of me at all, so that's delayed both my normal prescription and the new one from the neurologist, so it looks like it could be another couple of weeks til i even start the clobazam. I really wish my e nurse would get in contact so i could ask what the neuro's logic behind this is, because i've never heard of this tactic before.

 

[Loopy Lou]

Oh wait i managed to find this, it's kind of a long read but interesting.

http://www.sciencedirect.com/science/article/pii/S105913110200287X

Basically there's been trials on short term use of clobazam for refractory partial seizures, they usually run for 1, 3, or 6 months.

Knowing that my neuro is well recognised for his research, his thinking kind of makes sense now. I don't know why he didn't just explain it to me though, it still seems like a heck of a gamble.

I'm seriously worried about the sedation effects of it, i already sleep an abnormal amount >.<

 

[Highlander]

Oh wait i managed to find this, it's kind of a long read but interesting.

Basically there's been trials on short term use of clobazam for refractory partial seizures, they usually run for 1, 3, or 6 months.

Knowing that my neuro is well recognised for his research, his thinking kind of makes sense now. I don't know why he didn't just explain it to me though, it still seems like a heck of a gamble.

I'm seriously worried about the sedation effects of it, i already sleep an abnormal amount >.<

Hi

I've turned down Clobazam twice. Once was to get rid of Catamenial myoclonic seizures, that was how levetiracetam was introduced. The other time was before I went onto Lamotrigine, my neuro said other patients enjoyed the good nights sleep!

Like you I was worried about sedation, dependence, and tolerance.

I don't know if you are a member, this was posted on the 10th in forum4e. May all be sorted now.

Whoever lives in the UK and is on Clobazam tablets please read this:

There is a supply problem with Clobazam tablets in the UK.

Auden McKenzie has stopped making its version of Clobazam tablets, called Clobazam Auden. There are no stocks left.

Sanofi is temporarily out of stock of its version of Clobazam tablets, called Frisium. Sanofi has told us the tablets will be back in stock in the next few weeks, but is not able to confirm the date.

You may wish to check with your pharmacist just in case they still have supplies.

If you usually take Clobazam Auden or Frisium tablets for your epilepsy, and you can’t find a local supply, you may be able to take liquid Clobazam instead. Please speak to your GP, epilepsy nurse or epilepsy specialist for advice. You will need to get a prescription for liquid Clobazam for a pharmacist to supply this.

Jeez I even have to take links out of OTHER PEOPLES quotes!

I've just emailed my personal tutor my head of course and the head of disabilities for my school to let them know how the titration is affecting me and what sort of issues I can foresee regards fatigue until I'm back on two drugs. Got a bit of a dumb reply from the head of disabilities for medical sciences. Pharmacology better b***dy understand.

I'd try much the same tactics, I would have tried Student Support too but she thinks I'm outspoken and I think I would have hauled her over coals if I had been my child at that Uni... useless wench.

Hope it all works out for you and your Uni is supportive.

 

[Loopy Lou]

I hope they're accommodating too. They've offered support before - extra time on assignments, special consideration during exams etc and i've always turned it down, but i'm thinking i may actually need it this time, because things are going to be pretty unpredictable.

I definitely don't need the extra sleep, i already sleep 10-14 hours a day haha. Did the whole sleep study thing a few years ago, but apparently on my sleep study i fell squarely between the ranges of normal and abnormal. Sooo... obviously not right, but not the right numbers for definitive answer to anything. I've come to peace with it now, and me and my bed are best friends, along with coffee of course.

I do feel like i need to try this at least, even if the idea does worry me a lot. I've tried a fair few medications over the last ten or so years, some i haven't tolerated well, others than just didn't work or made things worse. I just want an end to it, to be able to drive, and get a decent job at the end of all my hard work. It didn't bother me so much about ten years ago, but now i'm seeing people way younger doing things that i currently can't, and to be honest, i'm feeling left behind, like i've been put on hold. I also know there's a good chance that i'll just be like this forever and will have to always work around it.

Wow. Accidental morose moment, sorry about that. I've been under a lot of stress lately.

 

[Nakamova]

Anyhoo, if the clobazam does stop my seizures, he wants to change me from keppra to brivaracetam.

Brivaracetam is similar to keppra, so make sure your neuro explains WHY he would make the switch. A study comparing the two (see https://www.ncbi.nlm.nih.gov/pubmed/27236448) found that there were no statistically significant differences between the two in terms of seizure control, and that keppra actually was less likely to cause dizziness compared to brivaracetam. Of course everyone reacts differently, so there's a chance brivaracetam would be better for you -- but what makes your neuro think this will be the case?

 

[Loopy Lou]

Yeah i've come across that study whilst looking up brivaracetam. I'm not quite sure why he would pick one that is so similar to keppra, unless he thinks it's just different enough to maybe work.

My hope is that with them being so similar, it won't be so harsh on my system to do a switch, and also that i won't get a lot of side effects from the brivaracetam, since i don't really get any from Keppra.

It's been two weeks now since my neuro said he wanted me to go on the clobazam urgently, and still haven't even got the prescription. Really wanted to get that over and done with too >.<

I won't see my neurologist again now until february, best i could hope for would be to pass on a message through his secretary, or wait to hear from my epilepsy nurse. Unfortunately i can't get in contact with her because i no longer have her contact details.

The NHS is wonderful for being free, but their lack of organisation sucks.

 

[Highlander]

Brivaracetam is similar to keppra, so make sure your neuro explains WHY he would make the switch. A study comparing the two found that there were no statistically significant differences between the two in terms of seizure control, and that keppra actually was less likely to cause dizziness compared to brivaracetam. Of course everyone reacts differently, so there's a chance brivaracetam would be better for you -- but what makes your neuro think this will be the case?

Hi, the study was specifically with regard to refractory focal seizures.
I don't know if Loopy Lou's epilepsy is refractory. In her profile, she doesn't mention anything if her E is refractory.
Perhaps her neuro read this:
Coppola, G., Iapadre, G., Operto, F. and Verrotti, A. (2017). New developments in the management of partial-onset epilepsy: role of brivaracetam. Drug Design, Development and Therapy, Volume11, pp.643-657.
On a slow enough titration, the dizziness is adaptable, it only crops up in the initial stages of the titration and behavioural side effects are less prevalent than levetiracetam. The side-effect profiles of both drugs vary due to subtle differences in modes of action.
Brivaracetam seems to be a partial antagonist of neuronal voltage-gated sodium channels due to its inhibitory action; also, it doesn't inhibit HV Ca2+ channels and AMPA receptors.
Brivaracetam is more potent than Levetiracetam due to the fact that it has less effect on other receptors and it has a stronger attachment to the synaptic vesicle protein 2A receptors

Only thing I would say, I don't know if you are still on Topamax and what effect it had on you, or what effect levetiracetam has had regards weight.
I lost shed loads on Topamax and I wasn't even overweight to start off with, levetiracetam made it worse. I had zero appetite.
With Topamax and brivaracetam, I never felt like eating - saved a lot on my loan but I got very thin. Wasn't good.

Hope that helps

 

[Loopy Lou]

He's been saying for a while now that he considers me refractory, but wanted to keep going with the Keppra and Topamax.

It's not so much that topamax kills my appetite, it just makes everything taste.... odd. For a good month or two after going up in dose, everything tastes wrong so i don't eat very much, just plain fruit and veg. No carbs, no dairy, nothing with sweeteners in. Makes my beloved pepsi max taste like 10p rola cola.

I've always struggled with my weight due to hormone problems which i'm seeing an endocrinologist for, but i have lost about 4 1/2 stone this year without really trying. Partly due to some of the meds from my endo too.

I'm just on Keppra 3000mg and Topamax 300mg at the moment, was on Tegretol too, but dropped that one last year thankfully.

With all these weight loss side effects i should be a stick now, but alas not so much lol.

I didn't have any of the behavioural side effects from Keppra, just dizziness, but then that could be from any of the things i'm on, or a combination of them.

Tried to call neuro's secretary today, couldn't even get through to her. Bah. I hate sitting around and waiting!

 

[Highlander]

Hope you get through eventually.

My last neuro was always in the stroke ward when I called. Photosensitivity was really playing up just prior to exams and he was as elusive as unicorn poo. Thus the self-administered valproate titration.

I had seen the neurologist specialising in E in 2008 when I was referred to the hospital for video telemetry so I asked to see her again eventually. She is fab.

Don't think the last one is talking to me now, I need his letters for me appeal and so far they haven't appeared.

At 1000mg BD keppra and 200mg Topamax I was as thin as a rake and had moods ranging from absolute paranoia to completely numb.
Keppra is still a great drug though, sometimes it can be the magic bullet. It just didn't suit me. I got on well with Topamax other than the weight, other people find the concentration, linguistic and memory side effects awful - never had them.

 

[Loopy Lou]

It's been a couple of weeks now and my new docs still hasn't received the letter from the neuro about my meds change.

Never change docs if you can avoid it, it's so stressful!

Wish they'd use email instead of snail mail lol. Also, i'm glad my mum came with me to the appointment, because she's just told me my neuro was going to be away for two weeks, i had no memory of him saying that at all :O

*anxiously waiting some more*

 

[Highlander]

I'd phone your neuro's secretary if you haven't already and hassle then to see if it has already gone or ask if you can get it sent again because you didn't receive it.

My neuro was sending my letters to my term time address in the academic holidays - I did explain...

I suppose they will all be waiting for me.

 

[Loopy Lou]

Last time i called, it was to make sure they had the right doctor's address on it (it goes to the GP, not to me), and the secretary said it was just waiting to be signed by the neuro, then being posted.

I'm sure the Royal Mail sees post going between hospitals and medical centres and loses them for a week or two, just for the craic :clap:

 

[valeriedl]

There have been many times that I've had trouble getting a message to my neuro or to some part of the hospital. Once I was having trouble getting a message to the records department when I needed paperwork released to keep my Social Security going. It got down to a week before my Social Security was going to be cut off before they got the paperwork they needed from the records department.

If I'm having trouble with things I'll call every other day, then daily and then several times a day waiting 2 hours between each call. I would leave a message the first time I called when it came down to calling several times a day but after that I'd keep calling strait in a row until I talked to an actual person. I think they finally get so tired of hearing from me that they finally do what needs to be done.

It got really annoying for me to get up and call them at 7am, when the office first opened, then keep calling all day long but if it worked then I did what I had to do.

Are you able to send an email to your neuro? A few years back my neruo told me that on the hospital website you can send an email directly to your dr about a problem or question you have. I started doing that and I'll usually get a reply within the next few days. Depending on the severity of my problem I'll either get an email or actual phone call in return. You can't believe how shocked I was when I sent him and email once in the morning and got an actual phone call back from my neruo that afternoon! Even if the paper work needs to be sent by mail you would be letting your neuro know that you've been waiting for what he needs to do, and how long you've been waiting, then it could finally get done.

 

[Loopy Lou]

It's a bank holiday weekend now, so everywhere will be closed til tuesday, Will have to get onto them then again.

At least my usual prescription finally got sorted so i'll get my current meds on time this week!

 

[Loopy Lou]

Well i finally got through to my neuro's secretary today, and it turns out that because of my neuro being away for a couple of weeks, they're only JUST sending the letter out to my doctors today. :zacepi:

Sooo... give it a few days for the letter to get there, another couple for the doctor to read it and order the prescription (assuming it doesn't get lost in transit as they so often do), and i'll maybe get my clobazam just in time for my first week back at uni, when i need to keep a clear head.

On the bright side i've arranged to meet up with the STEM head at uni to talk through the med changes and such, and since i'm also waiting for gallbladder surgery, i have to have things put in place in case anything happens and i can't meet deadlines/attend exams.

Stressed is an understatement!

 

[seagull]

Been on cloberzam years now and I know I proberly addicted but they work and if I feel the starts of anything I take one.They got short term duration I never felt doped up and at times prayed for sleep but they not strong enough for sleep

 

[seagull]

I speak as more mature lady been on it for years so how it effects me will be different to you.that not advice I posted it only how medication works for me

 

[Loopy Lou]

Thanks for the input Seagull, so far i'd only heard bad things. I've no idea what kind of dosage he's wanting to put me on, i guess i'll find out when i get the prescription lol