Diazepam for seizure control??

[jayde-101]

hi everyone

i dont know if this will post okay as i have intermittent internet signal... i am up the hospital at moment and the doctors have been "kinda" okay... i have been clustering with complex partials and have had the odd T/C... but im alright so no need to worry ....

what my question was is the Dr has said to me that they want me to start taking diazepam everyday...
i already take diazepam as a when i need it basis 2 mg but no more than three times a day. but this Dr wants me to take 12mg's three to four times a day for 3 or maybe 4 weeks and then im to stop taking it... he said to me that this will help calm the clustering down....

i just dont know what to feel about this onder: im not on any AED so it will be just this diazepam..
would love to hear your views thanks

 

[Cint]

Hi Jayde,

Diazepam (also known as Valium) is a drug used for seizures, usually in an emergency situation though, not as a regular seizure med. And it's only used for a short time, as it is a benzo drug and can be habit forming. I would think you need to be on some AED in addition to the Diazepam and use this one only in emergency.
I posted yesterday that I think you need to change doctors. Does this dr./ hospital specialize in seizure/epilepsy? IMO, this neuro doesn't sound like he/she knows what to do with someone having ongoing CP and TC seizures.

Check this out:
http://www.epilepsy.com/medications/b_diazepam_intro

 

[Crash]

Hi jadye -101
My doc has me on 10mg off diazapam per day,i am also on it for other reasons but as my seizures are usually stress realated,i find it a life saver.I have been on it for 3 to 4 years now,but my doc is quite happy as long as i am.
I personally dont see it a problem,when you do come off it,he will taper you off,eg,12mg one week,11,the next and so on and so on,as suddenly stopping diazapam can cause seizures hence the taper.
Its not really for a long time,talk it over with your doctor and tell him off any concerns you may have.I assume the larger dose is due to the fact you are on no aed at the moment?

 

[jayde-101]

Hi Cint - no my hospital doesnt specialise in seizures/epilepsy and the nurologist im un also doesnt

neil - my neurologist wont prescribe me an anti-epileptic drug ive been battling this for nearly the whole year

and its not even a neurologist that is prescribing this diazepam .... its just a normal A+E doctor... i feel dreadful and i also feel like my teeth are not going to tolerate much more , they have started creeking and making cracking sounds when i eat now

 

[Cint]

neil - my neurologist wont prescribe me an anti-epileptic drug ive been battling this for nearly the whole year

and its not even a neurologist that is prescribing this diazepam .

So now the question is, "WHY?" is the dr. prescribing diazepam and "WHY?" won't the neuro prescribe an AED? Find a new dr. ASAP. What testing have you had done?

 

[Crash]

I agree with Cint,that your diazepam should really be prescribed with an aed,why will they prescribe this yet no aed? I would imagine once you are taken off the diazepam your clustering will return as it is not a long term fix,hence the need for an aed?

My local gp has prescribed my diazepam and my aed,but in close coperation with my nuero and epi nurse.If you are suffering seizures,why is this not happening? Perhaps,Cint is right and you need a different nuero.

 

[jayde-101]

So now the question is, "WHY?" is the dr. prescribing diazepam and "WHY?" won't the neuro prescribe an AED? Find a new dr. ASAP. What testing have you had done?

i have had routine eeg's which came back as normal and in august i had a 5 day video telemtry eeg but i didnt really have anything major while in and my neuro said that it was inconclusive becuase there was to much muscle artifact showing ... my neuro just said she dont think its epilepsy becuase my eeg was normal and that she is just going to diagnose it a funtional non-epileptic seizures and said they are fake *sigh*

.....yes obviously i planned to have a T/C and crack my head/eye open on the bedside table that required stitches and urinate all over the carpet and my pajama bottoms

*sigh* its not the sort of thing you really "fake" is it

one day i feel im going to get seriously hurt

 

[Crash]

Yes i would certainly agree that a change in medical staff is going to be your best bet here,considering you have had one T/C already.Perhaps then you are going to get the answers that you seek.

 

[Cint]

*sigh* its not the sort of thing you really "fake" is it

one day i feel im going to get seriously hurt

NO.... it ISN'T something you "fake'. And you seriously getting injured during a seizure is my concern, too. Been there, done that, because of the same thing you're going thru. Find a new dr. ASAP. Listen to YOUR OWN BODY, not what some inexperienced, dr. who only goes by the book, says. Just because it doesn't show up on the EEG's, doesn't mean it isn't E.

 

[jayde-101]

Neil - its not the first T/C Ive been admitted to hospital 4 times this year with one
Cint - thanks for your concern and advice im having a hard Time getting them to refer me to another :/

The T/C's are getting more and more frequent every week and more than once then my days are full of clustering complex partials

Question is how much can ones body take

 

[Crash]

Sorry about the amount off T/C you have had,and for the life off me i do not understand why you are not on aed.I had my first T/C followed by a second one six weeks later i was then put on aed,before any tests(etc).

Remember your doctor and nuero are only there to advise you,put your foot down and demand to be refered to another nuero and if be another gp,i hope things go your way because you dont deserve to suffer this way,good luck.

 

[MuayThaiFighter]

Well I've been dealing with Valium for over a year and a half. Plus 6 months of Klonopin, same family of drugs. And I was given valium 3 times a day to be a back up plan for the seizures or anxiety. Taking it by itself can slow down the brain and stop them, but the body will get tolerance sooner then later. It is so habit forming, I just think this is a really bad idea, unless they plan on giving you a Anti-epileptic. Otherwise, as soon as you stop. Not only will you have the seizures again, but you will have more intense seizure due to withdrawal.

Unless they plan on keeping you on a benzo for the long term, they need to address the seizures with another drug.

I'm so sorry your in the hospital Jade, I hope this all stops. You know I always got your back!

 

[Crash]

Yes but you shouldnt have to go through a withdrawal as long as you are tapered off slowly,even up to a month,that is the whole idea of a taper,so you do not stop abrupty,and seize,although i do think you would be better with an aed as well.

If you would like to know more feel free to pm me as there are things i would rather not discuss on an open forum.

 

[Cordero]

Can you find a different hospital facility to go to? If you can, then maybe you can get a new primary care physician that can either give you an anti-epileptic drug or refer you to a neurologist who can better understand your situation. You said that you're having a hard time with the doctor you have now to refer you to a neurologist. I don't know if you have insurance, but if you do you can check with them to see what doctors your insurance will cover in your area. Wish you well.

 

[LJ-Bain]

Arrrrgh! It's awful when they say you "fake" it! Because why? Do they think that is a way anyone wants to get attention? That you like to injure yourself? That you enjoy wetting the sheets? I think it is so insulting when they say that. If only we could give them a nice solid kick in the derriere.
Even people with dissociative or non-epileptic seizures are not "faking" it.
Your poor teeth! Do think you are clenching at night? Probably with all the seizures you are clenching and your jaw is being put through the wringer.
How do you feel about taking the valium?
I know that they use it on emergency basis...have you tried it before?
Can you see another neurologist? Is it possible?

I sincerely hope as well that you never seriously injure yourself. You don't want that to happen before they take you seriously.
Have you ever seen your medical records? I know it takes alot of organization and paying hospitals and dr.s to see them where I live...are you able to access them so you know what these "Dr.s" are thinking?
Hugs to you. Keep up the good fight! You will persevere! I hope sooner than later!

 

[KarenB]

OH, so sorry you're having these seizures, and the idiot doctor thinks it's being faked because of "normal" EEGs. If he/she knew anything about epilepsy, it's completely normal to have normal EEGs and STILL have epilepsy. Our son had one normal EEG after another -- even 48 hour EEG -- normal. 5 months later, he was in ICU with Status Epilepticus (they finally caught the seizures on EEG).

Stay away from Diazepam -- this drug is NOT meant to be long term. As with all drugs in the benzo family, after 4 to 6 weeks of regular use, your body grows used to the drug, and then you need a higher dose to maintain the same effect. And the drugs in this family are the hardest to wean off of -- even a very slow wean can be horrific.

Diazepam can be very helpful as a rescue drug -- but not long term.

Cint is absolutely right -- keep fighting to see another doctor. Refuse the diazepam (except for emergencies) and get on a drug that will help you long term.