New and want to be Drug Free

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!

B

betterlife

New
Messages
8
Reaction score
0
Points
0
After reading several posts and seeing what others have gone through, my issues are not as severe. I am trying to find anyone that has gone off seizure medicine and is seizure free.

I have only had 2 seizures. I had a noncancerous tumor removed in 2002. I was only on seizure meds briefly while I healed. My surgeon did not believe in them unless absolutely necessary. I remained seizure (and med) free for 6 years after my surgery. In 2008 I was put on a hormone to shrink a cyst and the following day had my first seizure. It had also been an extremely stressful week. I felt fine afterwards but was put on Dilantin, which gave me all kinds of side effects. I was out of work for 3 weeks while they adjusted medicines!

I was on Lamictal for about a year before being switched to Keppra XR. I ended up with a break through seizure 7 months after my first seizure when the generic Lamictal was substituted. I was still on the hormone for the cyst.

I have not had any seizures since 2008 with only taking Keppra XR 500mg. My surgeon does not feel that I should still be on the Keppra since I have had no seizures with such a low dose. Unfortunately, I cannot find a neurologist that is willing to take me off. They want me on "just in case."

I feel the side effects far out weigh the benefits. The two times I had my seizures, I knew something was wrong for a good hour before it actually happened. Both times the paramedics were called and were with me before it started. Since being on Keppra, I went from having no bone loss to Ostopenia and arthritis in my spine in two years. I have a permanent bruise on my finger because of a weak blood vessel. I went from having "great veins" to not being able to find one. I have had issues with bleeding, not too mention the strange dreams and bouts of depression.

I am a health geek when it comes to eating healthy and remaining active at 55. It goes against by being to give myself this chemical knowing what it is doing to my body.

Is there anyone out there that can direct me to a healthier option?
 
Hi and welcome to CWE.

I wish I didn't have to take meds. to keep my seizure under control too. But I don't have a choice. Every time I try to reduce one of meds. just a little there it is, a siezure.

I have temporal lobe E. of the right side.
 
So its been 4 years since your last seizure. Well I'm not suggesting anything because I have no medical background, but unless the neuro is handing you the pill with a glass a water, what happens outside their office is up to your discretion... but again I am not suggesting anything.....

I would be careful driving if you decided to do anything I am not suggesting....
 
Thanks! I have considered it. I guess I just want some backing. : (


I also wouldn't mind the side effects as much if I felt it was something I truly needed.
 
I hear you. I'm actually suprised the Nuero doesnt want to try to ween you off.

I was always told that if I went two years seizure free, I could then start trying to get off meds. I thought that was pretty typical.

It's a dicey slope trying to get of meds....
 
You can try reducing your meds. a LITTLE amount.

I done that before, but for me, the seizure would start up, therefore I had to go back the amt. of meds. I was taking.

BE CAREFUL.
 
I'm actually on the lowest dose I can take. Since I am on the XR, it is time released and even if I cut in half, I (supposedly) am taking the same amount.

I've been two neurologists and neither one are eager for me to go off of them. I think they would rather be safe than sorry.

When I had reached my two year mark and my neurologist did not want to take me off, I went to a different neurologist. She was surprised I was doing so well on such a low dose and felt that it was better to be safe. They always put the scare tactic into it on what if something happens....
 
Last edited:
I'd talk to your dr before doing anything with your meds, there could be a reason that she's keeping you on them.

I take a ton of pills every day and would love to not have to take so many but I wouldn't do anything with them unless my neuro knows.
 
If I were certain of the route I wanted (no medication) I would bring this question directly up to my neurologist with the reminder that if necessary I can always restart this medication if necessary (if seizures occurred or worsened), but at the moment and for quite some time my desire has been for their help in going off of this medication for a better quality of life.
Our doctors should help us make our own decisions.
 
Some children (who had multiple seizures that did not respond to medication) have achieved seizure freedom through the ketogenic diet, and been able to go off of meds. Our son was able to be seizure free for 11 months, although he has recently relapsed.

Since your seizure disorder appears to be mild...I would take DayDreamer's advice. There's always the option of going back on meds.

You might also want to consider nutritional ways of controlling seizures. The ketogenic diet would not be appropriate for a middle aged person, but Johns Hopkins works with a Modified Atkins diet for adults. And you might not even need to be that strict. My nutritionist (18 years of experience with ketogenic diet) recommends that simply cutting sugar and gluten out of the diet can buy seizure freedom without meds for many people.

There's also other ways, such as biofeedback, which I have no experience with. I think there's a thread somewhere around here called "Proactive prescription for epilepsy" or something like that.
 
Little concerned of what is mentioned below “Since I am on the XR, it is time released and even if I cut in half, I (supposedly) am taking the same amount."

One should not cut or break XR tabs it breaks the XR/extended release, when ingested broken release is immediate.

Can’t you tell your docs it’s been long enough and you want them to help bring you off the meds safely and under medical supervision? If you feel it’s time to come off then they should help and support you in a controlled manner, for your safety. You deserve that.
 
Thanks for all the info! Good to know about the immediate affect of breaking an XR tablet-- that would not have been fun!

I will check into the book and the different diets. I am very conscious of what I eat with lots of fresh vegetables, whole grains and very little red meat. I don't do caffeine, watch my salt and do organic when I can. I think there are many chemicals in our food that cause health problems. It is hard to avoid it.
 
Once I asked my Neur. to help me come off meds since I had not had seizure for a long time.

He said that if I stopped meds. I stood the chance of having my seizures return, that THEY could a diff. type of seizure and would not be able to control with meds.,

I never tried, since you stated you are on a low dose do meds. just wanted to let you know this.:
 
I went off meds 3 years ago and just last week I had two back to back.... Its a small risk TAKEING meds rather then not and then never really knowing when it would hit
 
welcome to CWE. :) I know how you feel. I felt the same when I took Lamictal for 3.5 years and was seizure free. But I learned the hard way that the drug was actually controlling my seizures. I relapsed after 6 months of not taking Lamictal. So I would say try to stay on the drugs.
 
katzy- I am curious how strong a dose you are on. My one doctor doesn't think I am even taking a therapeudic dose. It is scary though. I would love to go 3 years without meds and without seizures. I think quality of life is worth more than quantity. I feel that the meds are doing more harm than good.
I wonder, too, once being on the medication if you are not more susceptible to seizures when you go off. The chemicals affect the brain. Kind of damned if you do and damned if you don't. : (
 
betterlife said:
katzy- I am curious how strong a dose you are on. My one doctor doesn't think I am even taking a therapeudic dose. It is scary though. I would love to go 3 years without meds and without seizures. I think quality of life is worth more than quantity. I feel that the meds are doing more harm than good.
I wonder, too, once being on the medication if you are not more susceptible to seizures when you go off. The chemicals affect the brain. Kind of damned if you do and damned if you don't. : (
Click to expand...

I was taking 200 mg of Lamictal twice a day; 400mg total.

When I took Keppra for about a year, I was taking 3000 mg a day. It didn't work, so doc took me off of it. If you're taking just 500mg, then I don't know if that's what's really controlling your seizures. I'm no doctor so I can't really say anything:(
 
I'm taking 1,500 MG of Keppra a day and IF I ever got to go off it, my Neurologist said it can be dangerous to just stop taking it, it has to be gradual and if taking meds is the only way you can be seizure free, I'd stick to taking them.
 
My one doctor doesn't think I am even taking a therapeutic dose.
Click to expand...
With many of the anti-seizure meds, there is no specific therapeutic dose. Even the suggested range is just that -- a suggestion -- since many people will find seizure control with doses on either side of that range. In my case, I have had seizure control with very low doses. One of my neurologists initially insisted that I was not on enough medication to make a difference. Over time, she learned (from my example) that even a small dose can provide seizure control. I have tried going off meds, with no success, so the medication -- even in a "homeopathic" dose -- seems to be enough to help my stabilize my brain.

That said, I would love to be med-free someday. My current neurologist (unlike yours, betterlife) has suggested that I could try tapering down this year, since I am 4 years seizure-free. My past attempts haven't been successful, so I am a tad wary. In an ideal world I would taper down while also doing neurofeedback to "train" my brain to suppress the bad brainwaves and maximize the good ones. More info about neurofeedback can be found here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/ It might be a useful approach to tapering in your case.
 
You must log in or register to reply here.
Back
Top Bottom