Thoughts on being weaned from medication

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I have no personal plans for being weaned from my medication anytime soon, but when I met with my neuro, I thought I'd ask about the process (just for the sake of education). She said for me, she'd wait until the 2-year mark of being well controlled by the medication, and then we'll decrease my dosage until I'm completely off.

I've heard some stories of others being weaned from their medication, all is fine for a short period of time then they have another seizure and have to go back on.

I know our bodies are different and it works well for some and not others, but I ask myself the question if currently there is no cure for Epilepsy, wouldn't I be setting myself up for failure by going off the medicine?

I ask because I had absence seizures as a child, nothing for 15 years, then other seizures that eventually progressed to tonic clonic.

Although, like most, I'm all for the idea of not being on medicine for the rest of my life, when I look at how all over the board (in terms of type and frequency) that my seizures are, and the fact that I recently learned there's a lot of Epilepsy on both sides of my family, I'm trying to understand the logic of being weaned. :ponder:
 
Hi In1
I consider the weaning as related to an experimental process by the Drs when it involves meds. Its a time of adjustment and review. Whilst I'm no dr or pharmacologist there is the issue of drug tolerance and whether meds is doing the job. There is also the need to understand drug interactions and side effects in the long term.

There is no guarantee there is a reduction in seizure stuff and one needs to have an open mind on possible outcomes.
 
I had asked my doctor the same thing, and the reply was something along the lines of:
The decision to wean someone off medication is easier when they are known to have epilepsy associated with an abnormal EEG at the time of diagnosis. If this person has an abnormal EEG even while on meds the trend is to keep them on medication and advise not to wean off. If the EEG has become normal when on the medication then weaning may be attempted slowly and carefully after a given period of time decided between you and your doctor (no less than 5 years in the clinic I am seen at) perhaps with monitoring EEGs.

The issue is far more complicated when one has epilepsy without an abnormal EEG. Often seizure type is used as a factor in deciding whether to try weaning off medication. I don't recall which seizure types are more successful with the "weaning process", but by seizure type the Doc was meaning frontal lobe seizures vs. temporal lobe, and generalized vs. partial.
 
I cut Lamotrogine by 100 and feel better for it.nuro felt been on it to long wean off see what happens I not thrilled about it but only way to find out what going on with e.It unlikely all e meds will stop ain't nooooo way going take keppra after things I read
 
You all make great sense, thank you! I'm on Keppra and in addition to controlling the seizures, I no longer have the uncontrollable anxiety I suffered from before taking it. So, I guess my thinking is it is controlling two issues with one medicine and I love that. But like you said, Blonde Angel, long term effects are something to consider. The good thing is that if we do start the weaning process, there would be additional EEGs, so it's not like the doc would just decrease the medicine without watching the brain's response. Ok, that makes me feel better. Thanks again, everyone!
 
I have not had any seizures since I started weaning off Tegretol slowly and I went up on the Fycompa I know I will never be able to come off my AEDs ever.
 
I been called in for annual medication see what they can boot off my scrip I dread it
 
I tried tapering off my meds twice (both times with doctor's supervision). First was about 6 months after the initial t-c seizure (which happened when I was 35), in the hopes that it was a one-off and the EEG was a fluke. No go -- had a seizure a few weeks after being completely off meds. I was wondering if I had tapered off meds too fast (and that had caused the seizure) so I asked again about tapering off after being seizure-free for two years. This time the taper was much slower, but I still ended up seizing after a few months med-free. So no more attempts for me.
 
Wow...I really have a lot to consider. For now, I guess I'll be grateful that the Keppra is doing its job and sweat bullets when the possible time for weaning comes. :) Thanks all!
 
Hi I am so confused about what is happening. My first question is how are most people diagnosed with simple partial motor seizures? In my case, it seems that's what the neurologists THINK I have, based mostly on process of elimination, as far as I can tell. After that, I don't understand why he is talking about weaning me off the medication in 5 months if I have just gotten used to it [taking Keppra since end of January] and no more motor episodes are occurring. I am so confused. My story is that I was in Spain and kept losing control of my hand, which would move into a weird position with 3 fingers bent and paralyzed for varying short times. Went to a neurologist, had a carotid scan [ruled out ministrokes, etc], and was put on Keppra - had a brain MRI [to rule out tumor, etc], EEG and blood work [normal]. The neurologist there told me she thought I have epilepsy in the form of simple partial motor seizures, and the Keppra was increased to 1500 mg. I went to a neurologist when I got back home, and he had me do a video-EEG. No seizure activity seen - inconclusive regarding epilepsy - was on Keppra when it was done. Have gotten used to the Keppra [although I feel slowed down] and stopped having the motor episodes was April 19. But when I saw the doctor on June 1, he started talking about weaning me off in 5 months. I don't understand the logic. I am really confused about everything!
 
Hi baob1 and welcome to CWE;

Hate to say it, but the best person to ask about exactly why you are being weaned off keppra is your neurologist. People here can only offer guesses. My guesses would be:
1. He wants to redo the video-EEG when you are off keppra
2. He doesn't think keppra is the right med for some reason
3. He has clear reasons for thinking you do not have epilepsy
With regards to the last one, it is important to realize that normal imaging and a normal EEG do not rule out epilepsy but when abnormal can assist in diagnosing epilepsy.

Your neurologist may be contemplating other (non-epilepsy) diagnoses, such as focal dystonia.
 
Thank you so much for responding! You are right, and I think right now working on trying to communicate better with the neurologist is what I need to do. I was just getting adjusted to the Keppra [started end of January], the episodes were reduced, and then stopped as of April 19. I thought the goal was to stay regulated on medication, so it threw me for a loop when he said would consider weaning when I go back in 5 months. I need to get to a point where I understand.
As far as the normal EEG's, I do understand that they do not rule out epilepsy - and I had them while on Keppra...Thank you again, and it's really helpful to connect. I don't think I've really processed all this, with all the ups and downs and feeling "in the dark." :)
 
PS - Just read a description of "focal dystonia" and it seems to describe what is going on. I can ask about that now, thanks to you!!
 
A note about my dystonia comment: sometimes this condition can be helped by seizure medication but usually medication from the tegretol family are the first ones of choice. There may be non-seizure medications to treat dystonia as well (if that is what you have) but it all depends on frequency of "attacks" - sometimes the choice is to not treat it. Many of the triggers for a seizure can be the same for dystonia attacks (stress, caffeine, fatigue, etc.) Between now and when you next see your neurologist keep track of each episode and describe exactly how it felt, what you were doing and how you felt in the few hours before the episode, and how you felt after.

If it does turn out to be dystonia or suspected, request to see a movement disorder neurologist if possible. If things are indefinite on both ends, seeing an epileptologist may be helpful in ruling in or ruling out epilepsy.

Good luck!
 
Thank you, again. I was reading about dystonia, and I will ask about it, but I realize I don't think there is a specific trigger that I can see [like a certain motion].....the neurologist said the way to really know would be to be hospitalized for days without Keppra - and see the EEG results....but it seems like that is not where we are.....I thought simple partial motor seizures was basically "decided" based on process of elimination, and based on not having them now while on Keppra. I have more questions to ask, so thank you again!! I think all this was catching up with me finally...
 
I've had epilepsy for about 13 years. I know I'm always going to have to take meds. My neuro, and myself, would love to lower the dosages, I'm on pretty high ones and maybe get off of some of them, I take a good many.

The meds and dosages I take now have been the same for around 5 years. Just last year he lowered one of the dosages and I've been doing ok, no increase in seizures. I have a feeling he'll probably try to lower something again soon.
 
Thanks for sharing your medication situation...it seems like things may change over time, the medication can change. Take care!
 
Welcome Baob1,
I tried to get off Keppra last summer, with dr. ok. 34 days after I was totally off I had a seizure. I will not be trying that again. I think the general consensus here is that, "there is no cure" and we just have to take meds.
I have to accept that because I live in Fl. and am SOL without a license.
Good Luck!
M
 
Yes, that is what I'd thought and accepted, and I thought the goal was to find the right meds and dosage....so it threw me for a loop when the neuro mentioned considered weaning in 5 months! I just started taking Keppra at the end of January, and finished tests last month. Previous posts lead to me to believe there are possible reasons why the doctor said that, so I think I need to communicate with him to the point that I understand [because I really don't right now - unless there is a chance this type of seizure just goes away and he wants to see.... but that doesn't mesh with what he explained about why it is important to control them!] Thanks for taking the time to post :)
 
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