Has anyone stopped their meds?

[daisy.girl]

I am wondering if anyone has stopped taking their meds and noticed much of a difference in the amount of seizures?

From what I have been reading, it appears that most continue to have seizures even while on meds, even several meds, and changing meds. Not to mention the side effects that come from the meds.

Has anyone counted the number of seizures with and without meds for a period of time? Is there really that much of a difference? Enough to go through all the side effects of the medications?

Maybe I am just thinking outloud here....but, has anyone else had these thoughts??

 

[epileric]

The only time I deliberately stopped my meds was when I was 18 years old. My seizures weren't really controlled but they were only partials. 3 days after I stopped my meds cold turkey I had my first tonic/clonic seizure.

Wasn't a good idea, even if I did cut sugar out of my diet.:dontknow:

 

[RobinN]

I have proof on paper that Rebecca has fewer seizures while not taking meds and making nutritional changes. Enough proof that the neurologist wanted a photo copy the calendar journal we keep.

 

[Nakamova]

I've stopped my meds on two occasions. The first was about 6 months after my initial seizures. I was seizure-free on meds, but I wanted see if they were necessary. My neurologist had me quit cold-turkey (a real no-no, I've since learned) and I had a seizure after two weeks -- basically when the last trace of the meds would have exited my system.

The second time was after a few years of being stable and seizure-free on meds. My neurologist wanted to switch me to a new med, but I requested to again try going med-free. This time I tapered off over 3 months. And I had a seizure about a month after my last dose. Over the next few months I had more seizures, each one coming a little sooner than the previous one. When I had one where I dislocated my shoulder I realized I needed to go back on meds, not only to prevent the seizures from continuing to escalate (a dangerous pattern), but to prevent additional bodily injury.

So for me, yes, the meds make a difference (although I hope to try going med-free yet again some time in the distant future, perhaps with the help of neurofeedback and/or dietary changes). Going off meds was useful for figuring out how I feel off of them, and also for showing that my seizures will progress if left untreated. On the plus side, I learned that I can have seizure control while on a lower-than-average dose.

I realize that having complete seizure control on meds is perhaps the exception rather than the rule here at CWE, and that makes the risk-benefit calculation a little clearer for me than for others.

 

[Billyboyboo]

If you stop your meds, please taper... especially if it's a Benzo such as Klonopin, Valium so on...
Yes I tried stopping cold turkey and it was unpleasant to extremes...
My seizures were worse.
Billy

 

[dfwtexas]

I know you have partiel lobe epilepsy like me....my neuro told me that going off my meds would never be an option, since seizures can happen thru out your brain...it is very dangerous.
I have to say my amount of seizures have gotten so much better on Keppra.

 

[Cint]

....my neuro told me that going off my meds would never be an option, since seizures can happen thru out your brain...it is very dangerous.

Same here. My first TC seizure I ended up with 2nd and 3rd degree burns and had to have surgery after surgery because of it, and that was before being diagnosed with epilepsy and not taking any medication. Since, I've had numerous falls, bruises and another burn recently that required surgery, even while taking meds. I will never go off meds and I even have the VNS, also.

For some, IT CAN BE VERY DANGEROUS, even deadly!!

 

[RobinN]

I don't doubt that Clint, but for some it can be dangerous to stay on them. That story needs to be told because it never is, especially in the doctors offices. It is difficult to find out the truth and to find support. All the support is on the side of the drug therapy.

 

[daisy.girl]

why can't this just go away.....I just want to stick my head in a hole and pretend it isn't happening!!!
I woke up to a simple partial this morning! I think I want to do one thing then I get scared what will happen if I do.

 

[Cint]

I don't doubt that Clint, but for some it can be dangerous to stay on them. That story needs to be told because it never is, especially in the doctors offices. It is difficult to find out the truth and to find support. All the support is on the side of the drug therapy.

I agree, some drugs and therapies (such as VNS) ARE dangerous for some folks, but for some it is also dangerous NOT to take or do any therapy. I've had my share of nasty and even dangerous side effects of some of these medications but then the effects of the seizures for me can be deadly, too. Those consequences of seizures are not told in the doctor's offices, either. Had I been home alone that morning I fell in the shower, I probably wouldn't be here today. And if I had stopped taking meds completely, I probably would not be here, either. The doctors don't discuss everything with their limited time, unless the patient starts asking the hard questions.

 

[Endless]

I've gone off 3 meds cold turkey because of serious side effects.
- I have the most seizures when going cold turkey off a med,
- the second most on low levels of AEDs OR ramping up on a new med
- the third most on no meds
- the 4th most by far when on an optimum dose of meds

Obviously the last option is the very best for me. My body does not respond well to changes in meds, so consistency in dosage, type, time when I take them, etc. is really important for me.

I want to go off meds some day, but I don't think it's ever in the cards for me. Without getting the seizrues under control I can't work, drive, too hard to socialize and interact with others in public, etc. I choose a life over no meds.

Change of subject - hemespherectomies for seizures were covered on "The doctors" today. Small boy had over 100 generalized seizures per day. The crew went into the operating room and filmed everything. Showed the surgery happening inside the brain, the parts of the brain, their logic in what they were disconnecting and why, how they stitch things up inside the brain.... Yikes. But very, very interesting. (surgery went fine and little boy is okay)

 

[douglas]

why can't this just go away.....I just want to stick my head in a hole and pretend it isn't happening!!!
I woke up to a simple partial this morning! I think I want to do one thing then I get scared what will happen if I do.

hi daisy, it is what it is. unfortunately it's something you have to learn to deal and live with now. perhaps it will go away, perhaps it wont. either way, you will need to learn to deal with it, and if it wont go away, you will need to accept it as a part of who you are now.

i can think of a lot worse things one could be stuck dealing with, so this perhaps is not as bad as it could be.

re: medication. i highly recommend that you consult with your doctor if you want to get off them. they will advise and they will advise how to taper off.

i was off medication for a couple of years and was seizure free in those times. however, the seizures came back, and they came back more frequently. looking back, in my particual case the medication does work. i have had no partials or grand mals while on dilantin. and when i switched to keppra, i had partials but no grand mals - not yet anyways, it's been a little over a year with the keppra.

i wont pretend to know what you are going through, because i am not your age. however, i was once your age, and i remember that i worried a little too much about some things that really didnt turn out to be the end of me.

stay well.

 

[daisy.girl]

thanks everyone....
I guess I just have such mixed emotions right now. part of me thinks I have had these simple and complex partials most of my life....and I have not been on any medication. but of course I have no way of knowing for sure.
the other part of me is so aware now of every new twitch and jerk that it seems like I am having seizures every other day....way more than what I have thought I have had most of my life, therefore, I would now need medication to control this increase in activity.....but is it more activity or just me being more aware?
Does that make any sense??

And I hate topamax! I keep saying things, like you know, the thing, over there, that you, hold, the thing...etc...I make no sense.....it is getting very frustrating.

 

[henhouse]

Stopping meds

Yes, I did it. Wound up in a coma for 3 1/2 days (including my entire 50th birthday). I went off the meds on my own. It was so great, I felt like the guy who didn't first have sz until age 43. After about a month, I finally told my wife what I had done, but swore her to secrecy. Within a few weeks had a major sz in the middle of the night, bit my tongue badly. The only thing I remember is looking in a mirror and seeing all that red. Paramedics asked my wife if I was taking my medication. She dutifully said yes, so they shot me full of the stuff. Good night nurse Irene, nurse Irene good night. Haven't missed a dose since.
Afterward I went on Lamictal and Keppra combination, which stopped the seizures. Stopped Kepprra after 7 mos. and sz came back (every 4-6 weeks - like before). Changed health plans and got a new doctor who switched to Depakote and Keppra. For less than a year, painful sz came every 8 weeks or so. Now sz free (w/o explanation) for over 1 1/2 year and have had two small reductions in Depakote, PER DOCTOR. Hoping for no sz and more reduction.

 

[douglas]

part of me thinks I have had these simple and complex partials most of my life....and I have not been on any medication. but of course I have no way of knowing for sure.

before i knew i had epilepsy i had partials, probably all of my life. but i didn't know that thats what they were. i thought everyone had them. for example, i would go through these thing where all the sounds entering my ears didn't make any sense and i didnt understand. it only lasted a minute or so and then would go away. later on in life, i would have this thing where i was constantly smelling rotten grass or rotten trees in the middle of the city. no one else could smell it. same thing, it would go away on its own. but back then, I didnt know any better, so i didnt do anything about it. thought it was normal. all these things went away once i went on meds.

the other part of me is so aware now of every new twitch and jerk that it seems like I am having seizures every other day...

stop thinking about it. do things to take your mind off it.

 

[dfwtexas]

Being new to E, requires a lot of you emotionally, physically and it does take time to understand it all. When I first got diagnosed, I know I was in denial and just wanted to pretend it wasn't happening. I have to say this forum did a lot to help me to adjust, understand and accept E. Oh, I still have my days that I let me get me down....but then I think this is something I can deal with. Hang in there and come here often to let others help you in this process.
jenn

 

[Endless]

Hey, Daisygirl,

I'm in the same boat. I wonder if the seizure activity has gotten so much worse over the last year, or is it that I finally know what they are and am noticing it? I think probably it is a little of both.

I hate my meds, too. But I'm resigned to taking them. The only thing that keeps me on them is the thought that if I don't the seizures could continue to get worse and I'll end up with TC's or I'll really hurt myself during one of my CP's, which would be really bad. Plus the auras and fear seizures are really awful.

Sometimes I dream about just moving out into the middle of the woods in a little cabin, where it doesn't matter if I have seizures. No meds. No worries. But for the reason above I know that would be a really bad move.

Stick with it. You don't want your seizures to become more serious either.

 

[Billyboyboo]

The meds that lower my seizure threshold are Anti-Depressants, personally.
I took Celexa once and I woke up, my head was on fire, I felt like I was going to go into shock...
I don't know about anyone else, does anyone have trouble with Antidepressants??
Billy.

 

[msat1981]

I had to stop cold turkey and that was about a month ago. I deal with the myoclonic jerks. After a day and a half I got my first two jerks which were pretty strong.
My mouth jerks have stayed somewhat under control i've noticed but the jerks happens from the right side of my mouth now instead of the left. My normal jerks are back but now I have a few new ones too. Also when I first went off the med (generic keppra)
I would jerk a lot and have what were in my mind brief shorting out when i was falling asleep. Also sometimes if i wake up really sleepy i feel like i'm shaking but physically i'm not shaking??? Anyway those are my experiences I wish it could all disappear too