Hi everyone.

i have a question.

my friend's mom has just been dx'd with absence szs and has been scripted phenytoin as her only AED. she was also hospitalized for a few days and kept on phenobarbital temporarily.

the situation is not simple. my friend's mom is elderly and has had existing neurological issues often not fully lucid for a few years now. i do not know exactly what because my friend doesn't either, but she has been in the care of a neurologist for some time. if she was taking meds, i don't know what. no history of seizures. about 6 months ago she had two strokes, the most severe of which left her paralyzed neck down, even after rehabilitation.

the absence seizures just emerged ... or were just noticed... as the sx are especially subtle in this lady's conditions. my friend was told, at the hospital, that scar tissue from the stroke is causing her szs, which would seem consistent to me with the timing of her stroke, so hopefully the docs are somewhat decent.

but regarding the phenytoin.... i've read conflicting information: some of my sources specify it is useful for grand mal and various partial sz types except of absence sz. other sources give no exceptions and do say it is indicated for seizures [type unspecified] "arising from brain damage".

i've read that ethosuximide (Zarontin) is first line treatment for absence seizures, and that valproic acid/valproate (Depakote) is also effective. These meds also list an indication for seizures arising from brain damage.

so why not one of these two?

i suppose there could be a problem of interactions with her other meds, but phenytoin does not exactly have a pristine profile as far as drug-drug interactions, does it. my friend seems certain her mother has not had other seizures; i suggested to her that the docs may suspect other types of szs. But they confirm absences seizures! So... those need treatment...

is phenytoin appropriate for absence szs? i just don't understand this choice of medication, and i'm a bit concerned. have any of you had absence szs treated with phenytoin alone?

what do you think? i would really appreciate any input on this! my friend will be talking to the doctors on and off.

thanks very much in advance

~ waves ~ waffling in the dark

Hey Waves,

I have the occassional absence, only lasts about 35 seconds so I'm told. I was put on to dilantin (phenytoin) but I was allergic to it and my stomach blew up literally like a balloon and it was sore to even have clothing touch it. Symptoms went away within 24 hrs of stopping the med.

I would think that with some of the meds it is a matter of taking the lesser evil. I for instance take 13mg of warfarin at the moment (has been up to 17mg), and I read that one med I am taking with it will increase the effect of the warfarin so be very careful...but it hasn't made that much difference.

So I think honestly that the information is erring on the extreme side of caution. Which is better than being blase about it.

It has been found from what I can glean from talking to my gp and my old neuro that certain drugs work wonders in conjunction with others, whilst some are either useless or dangerous. And certain types of brain damage respond well to some drugs but not to others. I asked about the brain damage because my e is from a head injury as a child. It caused learning difficulties and dyslexia is one of the problems. So it takes me ages to write and re read everything. Sometimes when I'm tired I miss so many mistakes

But have some confidence in your friends mothers doctors. It's far too hard to get practice insurance to stuff it up by mis-prescribing

Cheers

Thanks so much for your reply... sorry for not getting back sooner. I have been doing things somewhat out of order... sigh...

well, currently i am unable to be in touch with my friend anyway... she is busy.

i suspect they are giving phenytoin to control other "possible" sz types as it really doesn't make sense for absences.

i mean, she is not a kid at school having hundreds of them who cannot concentrate because of them, or someone who might need to drive. she is already bed-bound by full body paralysis, and cognitively compromised. so if she really is just having absence seizures, keeping them would probably better for her than having ANY AED shoved down her gullet, which would just serve to stress out her liver and kidneys and might give her unpleasant side effects.

so it goes back to... i suspect more is afoot here than my friend has been told, or than she understood. (she was quite adamant that there were only absences when i asked about other sz activity and also about the EEG.)

the docs... the cost... insurance payout to the docs?... umm, nope... i am not in the US. state-run medical system and they pay the docs dirt. phenytoin is cheap. docs have many limits placed on them too. there are also plenty of very non-brilliant docs practicing. example. i was prescribed erythromycin while on carbamazepine (Tegretol). in case you aren't familiar, erythromycin can raise Tegretol plasma levels to the point of toxicity and even death. i had told this doc i was on Tegretol, but he did not remember (mind, he didn't ask right then if i took anything else), or did not know of the interaction, i don't know. but that is pretty bad. another patient who didn't know the meds could have ended up DEAD. another time by another doc i was scripted a max dose of an antidepressant that had previously made me manic - doc knew, no titration period. that is just not a good idea. the only reason it didn't happen is that I REFUSED to take that much. i have other experiences of abject incompetence (by 2 neuros at a famous institute, actually) so... so no, i do NOT trust the docs here. i like to stay on top of things as much as i can. i believe in doing my own research, but i think here especially it is necessary. seen and heard too many horror stories. prevention is better than death.

in this case, it is to help someone who may think EEEK epilepsy! quick! medication! when that is absolutely false.... if there are only absence seizures at play anyway.

however my friend has been out of touch... perhaps still "dealing" with this news, surely tired from looking after her mom, and perhaps not ready to talk about things. i tried to reassure her initially but, i doubt it sank in much. it saddens me but i cannot help her / share knowledge / point her to resources until she decides she wants to learn.

meanwhile i just hope her mom tolerates the phenytoin well, and that if she does have other sz, that it controls them.

sigh.

Anyway i appreciate your input. will post if i have news. i will try to call her perhaps in a week to see how her mom is doing, and how she is holding up. it will be interesting to see if the phenytoin does help her... as you mention the fact that perhaps the szs arising from due to lesions might not be typical absences.

~ waves ~

If the generic doesn't help, have them get the brand name Dilantin approved and try that. The generic is not the same as the brand name despite what people will tell you. Good neurologists know this and there are reports on this.

With the other medical issues, they may consider this the less benign medication or one that will give the fewer side effects. Keep up with it.

Hi Lyn

thanks for your reply

i posted this quite some time ago... my friend's mom is in stasis... situation unchanged. she remains on the phenytoin - it is brand (and yes, i know of the horrors with generics! )

my friend has not said anything about the seizures in a while, but then absences are hard to observe. they only actually observed 2, one of which was on eeg.

phenytoin is not really indicated for absences... we still don't know why they gave it to her. my friend insisted they said only absence seizures and no other types... but that they couldn't give her any other AEDs... which corresponds to what you suggest - least side effects/easiest to manage.

i guess it begs the question why bother treat occasional absence seizures - the lady is paralyzed with kidney and liver functions compromised... so lets throw some useless meds at her see if we can kill her off? i guess i was trying to understand that...

anyway... i guess in spite of everything she is ok. of course, we can't know how comfortable/uncomfortable she is, because she can't talk and is not really "there" mentally/neurologically. but she is alive... it is so sad. i was supposed to go visit but it is hard for my friend to juggle everything so we'll see...

i see you are pretty new... welcome to Neurotalk and thanks again for your thoughtful post!

~ waves ~

Hi Waves,
When I first started to have absence sz. from scar tissue my neuro put me on Dilantin but it didn't do much good. Years later I was put on Depakene and that worked well but it can cause liver problems as well as lower your blood platlet level to the point where a person can bleed interally and that's what happened to me. I've found that the best AED's for absence sz. are mysoline which breaks down into phenobarbital and Diamox then I take vitamin B12 which also reduces my sz. Here's wishing you and your friends well. May God Bless All of You!


Sue

Thanks Sue,

yes i told her these things right in the beginning but the docs say they can't give the mom anything else.

~ waves ~

Hi Waves,
Tell your friend to make sure that the mom is seeing an Epileptologist instead of a neurologist and have the Epi do a DNA test on the mom that way they can find out what AED's (Anti Epileptic Drug) can be used to help the mom with the least side effects. I will let you know that often a Dr. doesn't like doing the DNA testing because they know they will be losing out on making money with the pharmacutical co. but if you push it take my word the Dr. will do the test and find what AED's is the best one to take. Here's wishing you and your friends well and May God Bless You!

Sue

thanks Sue,

this is not possible and she cannot change doctors either.

i guess i just wondered if you could see any good reason to give this person ANY meds at all.

as i see it, ANY med would take a toll (and her organs are low-functioning as it is), where the absence seizures do not - i thnk. btw the seizures are occuring in scar tissue where she had a stroke - which accounts for the paralysis and overall poor neurological condition.

~ waves ~

Hi Waves,
I'm sorry to hear that your friends immune system isn't that strong. One thing that can be done to help reduce the sz. is to put a cool face cloth on your friends face and neck 3 times a day or more. I was in a medical study earlier this yr. and they found that people who have sz. the brain temp. will get a little higher than usual on days they have any sz. The did a study asking me to keep track of each time I yawned because yawning will cool the brain. I had to take my temp. 3 times a day at the same time and each time after I had any sz. on the days that I had the sz. the brain temp was higher which fired up the neurons in the brain triggering sz. and I have scar tissue on the right temporal lobe. By putting a cool face cloth on my face and neck 3 times a day it reduced my sz. greatly. I know over in the United Kingdom they are working on a microchip to help cool the brain and help people with MS, cerebal palsy, and epilepsy. My Grandmother had mini strokes that effected her speach and then she got alzheimers and that led to sz. It wouldn't surprise me if the scar tissue came from the stroke. I wish you and your friend only the best and May God Bless All of You!

Sue