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seizure can last an hour(non-ep)

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Posted 1/16/2007 2:36 AM (GMT 0)
I have Non-EP seizures, and they can litterally last an hour or more. There isn't any brain damage harm, but when I come out of it, I feel as if I've ran a marathon and then beat up at the finish line. I wake with the worst H/A and heck/back pain.(I also, usually fall with onset)

What do you all do after a seizure for body pain?

Also, since they are non-ep, some docs say, just let her seize...this is horrible. I don't agree when 10 or so of valium always makes me stop. The prob.  is no IV access, so they don't want to do a central line for a non-ep patient. Its just hard.

I'm glad mine are not EP, and I wish you all the best.

*sorry if my spelling is off

Posted 1/16/2007 1:35 PM (GMT 0)
Uhm, so what do they think is causing your seizures? Makes no sense that they tell you basically to just "walk it off".. . how many docs have you been to?
Posted 1/16/2007 8:56 PM (GMT 0)
My 13yo had her first grand yesterday from a life of petite mals and I gave her tylenol but it didn't seem to do anything. I'm just realizing that some of her other problems (inattention, cloudy thinking, etc.) may have been more to do with her seizures. I'd say find a doc who sympathizes and get their oppinion. I sure wouldn't take the "just walk it off " suggestion.
Posted 1/31/2007 2:07 PM (GMT 0)

Hi,

Buccal Midazolam could be a socially acceptable alternative (compared with rectal diazepam).

It is administered orally, through a syringe (no needle), into the cavity around the gums, each side of the lower jaw. It is as quick as diazepam in stopping seizures and can be administered by a trained person relatively easily. Training is quick and easy too.

I believe dentists use it routinely to calm over-anxious patients. However, it does not have a licence for use with epilepsy in the UK, simply because of the cost in meeting all the testing requirements!

While my daughter was in a specialist epilepsy assessment centre last year, we realised it was widely used by a diverse range of patients. The NSE doctors are unable to prescribe it though, due to the lack of it being licenced!

Hope this gives you somewhere to look for a management solution.

Wishing you success

Kate's Dad

Posted 2/4/2007 8:21 AM (GMT 0)
thanks for the info. I do have rectal diazapam, and so far I've been able to prevent a couple of seizures, and haven't had to have someone else give it to me in public...I do worry a lot about that scene.....no pretty.
Do you know if that med is used here in the US?
I wish your daughter the best.
Posted 2/8/2007 3:57 PM (GMT 0)
I believe midazolam is used in US emergency rooms and also by US paramedics.

I'm intrigued by your use of RD for pre seizure control. Would it not be better to use diazepam in tablet form? RD is used solely as emergency intervention (in epilepsy) in the UK.

In my daughter's case, we only use RDiaz or Buc Midazolam if the seizure does not finish within 3 minutes. Clobazam (frizium) is sometimes used as a pre emptive intervention if we suspect seizures will occur that day. They are all the same family of drugs so we have to ensure we do not administer too much in combinations, otherwise tolerance will develop. If tolerance does develop we cannot use any of them for 3 weeks, until the body 'resets' itself.

Kind regards

Kate's Dad 

Posted 2/9/2007 4:57 AM (GMT 0)
I only use it before a seizure, if I start seeing purple spots/heart racing/tinly...these are my "aura". Again my seizures are Non-ep, so there is a difference. Tablet would not work fast enough. i only us my diastat Rarely.
Posted 3/15/2007 2:44 AM (GMT 0)
graciesmom,
THANKS so much for the info. I too was told i have psychogenic seizures...but I have no trauma or anything to contribute.
i haven't had a seizure since dec. 27th.
but I have had to use the DiaStat when I get an aura.
if you have any more info, like her symptoms, and what the sleep study showed, that would be great. it would be quite odd, seeing that I don't sleep much at all at night.
thank you agian for the info.
I wish the best for your daughter
Posted 3/15/2007 12:39 PM (GMT 0)
Midazolam is used in the U.S. mainly for pre-operative or conscious sedation. It is rarely used for seizure control here. The two Benzo's that are typically used for seizure control are alprazolam(ativan) and diazapam(valium).

AngMichelle: Has anybody ever listened to your heart or done an ekg(ecg) during your NE-seizures or during your aura? Sometimes a temporary change in your heart rhythym can trigger them.

I also agree a sleep study would be a good idea to have done, as sleep disorders and NE-seizures can be confused.

It is a little unusual to use diastat during an aura. It is typically administered by someone else when a seizure has lasted longer than 5 minutes. However, if your doctor knows how you are using it, and it works, I guess why not.

kurt
Posted 3/28/2007 4:33 AM (GMT 0)
Wow, your daughter and I have so many of the same symptoms...
I'm afraid if I did a sleep study, I would never fall asleep(this happens a lot) but its worth looking into.
Another interesting thing, I was bit by a tick on my head, and ended up in the hosptial for 3 days with severe back pain. They said it was tick fever, and it was never mentioned again.
man, i just wish I could get some answers. thanks for your concern and replies.
Ang
Posted 4/10/2007 9:23 PM (GMT 0)
i was treated with IV antibiotics for about 2 or 3 days, and nothing was ever said after that....

Thing is, I've had problems health wise LONG before this tick bite.
I will mention is to my Doc. next month, I'm just afraid he'll right it off(but I really love my doctor).

I have been to the Lyme forum, and they all agreed that I needed to be tested.
How much is it to have your labs tested at the Lab they all regomend??

I'm pretty sure it would be neg. where I live. I dunno though.

Thanks for everything!
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