New Here and scared about withdrawing meds!

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Oh go on. Can't be that bad.

By the way I just read the “help me ladies” post – you certainly communicate well in this way – next girl you chat up, pretend she has a monitor and a keyboard. Foolproof. I should be a motivational speaker. Definitely.
 
thats how i know its the SAD....cause im by myself right now. i dont have a computer phobia. and i never used to be like that. i used to talk to girls all the time. its weird. how im communicating now is how i would with others.......i dunno. it turned me unto some lame-o. anyways, it means "that is kinda kinky"
 
Ha ha it's not kinda kinky when you introduce yourself to your friend's Polish grandparents that way! Mortifying!

I was just messing about with the computer thing. If you don't mind me asking, are you under 25 or over? Totally get it if you don't want to say.

Not all girls like to be chatted up by a man who is arrogant and over-confident - it is offensive. Be yourself, the person you are NOW.

If that fails be like me - pretend that you are strong and confident because you are too proud to let people see that you are a bit fragile from time to time. VERY healthy attitude. Not.
 
under....and througout my life i have never been arrogant. i know in my one post i said i wasn't ugly, but i was stating fact. you're only arrogant if you're trying to overcompensate a flaw. even before i got a zipper attacked to my mouth, and talked with girls i was still soft spoken
 
A zipper? Hey i wasn't implying that you are arrogant and over confident at all, i was just saying that there are a lot of men out there who think that confidence equates to success with women. It's not always the case. Soft spoken is a good way to be. Don't women always go on about the strong, silent type? :)
 
a zipper= i don't t talk. and yeah they do, but i don't make any kind of contact. almost as if im scared to. =(
 
Ha ha I had no idea what you were talking about - I thought you meant you had some kind of accident! Dumbass Lola. You are pretty young though... plenty of time to work through the shyness. Is it really that bad?
 
we've kinda gotten off topic...but its ok. you're fun to talk to. yeah its pretty bad....hoping the anti-anxiety pills will help. i can't make eye contact with anyone either. male, female, professors, whoever
 
Yeah I'm not even sure what the topic was! It's been fun talking to you too. Regressing back to arrogant men: I had a boyfriend when I was about 20 who was about 29. Very arrogant, very cocky. When in hospital with the aforementioned black eye, he said to me "worse things have happened to better people". Ouch. Hurt at the time, but there was some truth in it. If he had said "just think Lola, there's someone out there who has it worse than you" I might have learned from it.

The point being: you are suffering as a result of epilepsy. But you have IDENTIFIED it and can do something about it. You're ahead there. Do you talk to friends or family about it?
 
I would have kicked him to the curb right there. In fact I posed a question before asking if people in here could ever have a relationship with someone with epilepsy. And in a case like that, it would be beneficial because you are guaranteed to have support. As far as discussing epilepsy, I don't really talk to my friends about it, but my sister has cystic fibrosis which is a lethal disease and she probably won't live past....25-30 so we are each other's backbones
 
Ah well he ended it so I guess in a way I sidestepped that landmine!

I have wondered that about relationships too - I am undecided on that one. Leaning towards no, but I think that's just a female perspective.

Sorry to hear about your sister. Really. That must be heartbreaking.

I have to go to bed now as it is midnight in The Land Down Under. I will inevitably be on and off this site tomorrow anyway, venting about how nervous I am.

Fun talking to you.
 
Hi..
I was on epilim chrono 1200mg and 200 lamitical daily and in january my neurologist started to ween me off the epilim and in may i was off it completly. 3 weeks later i got a seizure and severe headaches and had to go to hospital where they increased my lamitical to 300, its now 3 weeks later and still don't feel right and still have headaches but i guess i'll just have to wait till the meds kick in. I was seizure free for 18months and the doc wanted to take me off da epilim chrono because its not safe to be on if you become pregnent (not that i'm planning to anytime soon. I'm only 24! Just wanted to share this experience with you hope i don't scare you. But just remember everyone is different.
 
Yeah that's one of the reasons I am ditching Epilim - (and like you, I don't plan on kids any time soon!). From what people have told me, Lamictal doesn't feel good unless you increase it REALLY slowly. How often were you having seizures? Were you diagnosed very long ago?
 
I'm also new here and just want to wish you luck!!

Weaning off meds is like learning to ride a bike without the training wheels. A little scary at first and you may tumble, but how great to be free and ride on your own!

My advice is to go easy on your water intake...I drank so much water one time that it cleaned the meds right out of me.

Prayers to you - if it's meant to happen, it will!

-Laura
 
I don't want to be an ass and personally i have JME but usually it's for life.

Normally people can't outgrow it and when meds are stopped the seizures tend to return.If youll notice you start to have myoclonic jerks get back on your meds.

Lamictal should give some resistance to tonic-clonic types but for myoclonic seizures it might not help as much as epilim but the seizures are not as bad as grand mals. (both din't help me)

Hope you will be one of those lucky once that were able to outgrow from JME :)
 
Lola Lolushka said:
Hi, thanks Robin. What sort of medication did your daughter take? And how long did it take? Thankfully I haven't had major side effects - well, not that I have noticed.

I haven't had any supplements suggested to me. I've had aromatherapy recommended to me, what are your thoughts on that?
Click to expand...

My daughter tried four:
tegretol - vision loss
gabapentin - suicidal tendencies
lamictal - severe muscle and skeletal pain, rash
trileptal - throat sores

Her seizures all increased, and there were odd seizures (or so the neurologist call them that) that went away when the medication was out of her system. I think it took about a month for the med to be totally out.

No conventional doctor will recommend supplementing. If you find a need, or a symptom that you can connect to a vitamin deficiency then you can run it past them, but I did it on a trial basis. Now her nutritionist MD, has said to keep her on all that she is taking since she remains seizure free. He said we can look at exchanging them for food after about two years. I know how important they are, because I was relieved of a 30+ yr history of migraines when I began taking magnesium. It changed my life. Pharmaceuticals never have. (though I am not saying for some they don't)

You might get the book: Epilepsy: A New Approach. She talks about aromatherapy as being useful in her improvement.

If you have anymore ?'s give me a call out, because I don't always see the individual posts that are directed at me.

p.s. I also wanted to add, that my daughter was not controlled for quite some time after eliminating the meds. She made the choice that a TC here or there was far more acceptable than every day side effects. Her life improved dramatically when the meds were out of her system. Then we could make the adjustments to figure out the cause. It was all trial and error, but with each month it has only improved.
 
Last edited:
Lola, how are you feeling? Hope the first step went well and that your mind is clear.
 
Hey Eibhlin,

I'm feeling really good - the last couple of days I haven't had any auras or twitches, and my mind feels really, really clear. I'm so pleased!
 
That's great to hear, Lola. I have been on Depakote (Epilim) for about 16 years now, with a few times I had to be taken off, a couple of them weened off and when I was in a week long eeg study to see if i was a candidate for surgery, I was taken off immediately from 2000 mg a day to nothing because sleep deprivation and no other types of stress would induce a seizure. The other time I was pulled off was the day prior to my RNS implant, but they gave me a bottle of Ativan as a rescue med and instructed my brother on administering it.

The only time I went status from going off Depakote was the time they pulled me off immediately, but the hospital staff was in immediately to IV ativan into my system to stop the seizure. I think the only reason they were willing to take that step is because my seizures are only complex partial and don't generalize.

I am sure the doctors are going to keep good track of you and ween you slowly to prevent anything too bad. Besides, if they are taking you off it is probably because they weighed out the risks to benefits.

Best of luck
 
You must log in or register to reply here.
Back
Top Bottom