No Meds and Seizure Remission

[Endless]

Those that have been reading my posts for awhile know that I've been considering going off meds completely. I'm sensitive to drugs and have had intolerable side effects (deep untreatable depression, allergic rashes, untolerable impairments to my thinking ability, etc.) on all that I've tried in the past. I'm currently on Lamictal and I don't know how I feel about it yet.

I don't know if anybody else has considered stopping their meds. Nobody is recommending it. Especially the doctors. But if you've toyed with the idea like I have you may find this interesting.

The doctors and the studies agree that treating until a person is seizure free for a number of years (at least two) is the best way to get to seizure remission. That said, what about just chucking the meds altogether, before seizure remission?

One study is particularly hopeful. It studied unmedicated vs. medicated people and how many achieve siezure remission. But it didn't study the effect of initially being on meds then discontinuing before seizure remission. It makes me wonder if being on meds in the first place could make a difference for better or worse in the success of future seizure remission? (haven't found an answer to that yet)

http://0069ec0.netsolhost.com/pdfs/...ed epilepsy - revisiting temporal aspects.pdf

This paper is not so hopeful for people who are untreated:
http://www.comtecmed.com/CONY/2008/Uploads/assets/speakers abstracts/beghi 1.pdf

I found this study that shows a formula with a score on whether or not medication should be discontinued. You have to remember your high school math to do it. My score said I shouldn't stop.
http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2006.00662.x/full

This is why they usually don't treat people who have had just one seizure:
http://www.aesnet.org/files/dmFile/epc_209.pdf

At least there's a little beacon of hope that if I stopped the meds I might have seizure remission someday. But I guess the odds are in favor of the return of seizures and possible escallation. Feels like a throw of the dice in Vegas.

 

[Nakamova]

I always felt that I would be able to go off meds sooner or later. Since I was put on meds after my very first seizures (and confirming EEG), I tried to go off about 8 months later. I was unsuccessful. So then I figured it was just a matter of waiting a few years, which I did. This time, I thought I might just have one seizure a year and that I could live with that. Instead, I had one seizure, and then another seizure, and then another seizure, and they were happening closer together. So back on meds, where I am now. I still have faint hopes of going med-free (maybe after 5 years?), but in my fantasy world I would win the lottery and be able to do neurofeedback for the two years before stopping.

 

[Cint]

Here is a statement from the Epilepsia online library that does concern me about these drug studies:

We do, however, need to inform our patients not solely about the risk of seizures in, what was for the most part in observational studies, the absence of treatment. We also need to quantify the benefits of treatment in reducing the risk of seizures and the potential risk for harm. Here, we can turn to a number of well-conducted randomized controlled trials (RCTs), two of which represent largest yet undertaken in the therapeutic area of epilepsy and which may have sufficient external validity to allow direct patient counseling (3–5).

Before dealing with the results it is worthwhile considering some of the issues that still lead to confusion about RCTs, and how different designs may deal with the problems in different ways.

The great majority of RCTs in epilepsy are sponsored by drug companies for regulatory purposes. For these studies, internal validity is paramount and external validity may be sacrificed. A good example of this is that these studies often use placebo control groups with observations for short periods, making any application of everyday practice to a chronic condition such as epilepsy difficult. If we want to use a study to counsel individual patients about the risk of seizures we need to ensure that it has external validity (6). RCTs can use a number of means to achieve this end which include

– 
Reduce any exclusion criteria to a minimum
– 
Collect data on nonrandomized patients to show that the trial sample is truly representative
– 
Ensure recruited patients are well described
– 
Have sufficient numbers recruited to examine interactions between treatment effects and prognostic factors.

And as far as being on meds in the first place, do they make a difference for better or worse of future seizure remission? I think it depends on types of seizures, how long one has had them.

Like I've said many times in the past, I've had SP, CP, and TC seizures, had a LTL, tried 10 meds, and now have the VNS and still have breakthrough seizures where I can and have been injured. So I will not take the chance of getting seriously injured again or even dying during a seizure. Of all the medications, one was a drug study, and it made me crazy, literally, very, very depressed I was suicidal and ended up in the hospital because of it. Felbatol made me have serious migraines, and some of the rest made me sooo numb. But I will still stay on something because I have nearly lost my life several times due to a seizure.

 

[sandi]

I think one day will come and there will be a total different way to treat epilepsy , more like diabetes. Individually tailored.

 

[Endless]

What all 3 of you have said is very valid.

And Cint, i agree... how much i believe any one study depends on the methodology used and that can be consciously or unconsciously biased by the source of the money - who funded it.

Just speaking from my past use of statistics, I can design a study that says pretty much anything I want to by carefully selecting the population (there are different kinds of "random"), the methodology used to administer the study (including timing), and the statistical methods used to analyze the data.

 

[Lainsta]

I took myself off the meds 10 years ago because i hated what they did to my awareness, body and soul. Sure they stopped the seizures but they weren't making me happy.
SO the last 10 years i've been monitoring myself and by no means am i seizure free but i found a way to live with them and still maintain a great quality of life.

I wasn't looking after myself very well for a section of this 10 years ie. drinking, taking drugs etc so the seizures have stayed with me.
When i'm deeply emotional(as i have been last 2 years) i have been having a grand mal every 4-6 weeks usually around peiod time when i'm more hormonal etc.
I have gotten to a stage though(and that's why i found this site) where i want to treat the electricity in my mind wholistically.
I want to find out all my options before i take anything orally. The way i've been treating myself the last 10 years, i thought i was doing it alone but now i find the Andrew-Reiter book and i see others are on to this as well.
Anyone know of people in Australia doing the same thing?

 

[RobinN]

Lainsta - my daughter was having seizures about as often and around the same hormonal times as you. I have found making nutritional changes has been the main reason she has remained seizure free now for six months. She does not drink or do drugs, but she takes a hand full of vitamins and minerals daily.

Find ways to improve overall health, and you just might see the seizures reduceds.

 

[Gerrie]

Medication Vs No-medication?

Very interesting discusion,,,
While I'm very pleased to hear, medications provide "epilepsy remission in about 2 years", I wonder why the Doctors & Nuerologists keep prescribing & patients keep taking the medications all their life-time, with all the medication's miserable side-effects?

One wonders,,,
1. What's the point to KEEP taking the medications?
2. How can any one prove medications provide "epilepsy remission"?
3. Which study/research is far more "PROFOUND & GENUIN", for the well being of all epilepsy patients Vs the very few-selected once?
4. With so much studies, with financial ulterior motives & goals, what are patients to do,,,"Medication Vs No-medication"?

As it is, Epilepsy is nightmare to live with. And, having doubts on the "OBJECTIVES" of the studies makes one wonder,,,,
WHERE DO WE GO FROM HERE???

 

[Dutch mom]

My son is free of AEDs for over 5 years now. He has tried over 10 meds but only suffered side effects instead of seizure reduction and his epilepsy (Lennox Gastaut syndrome) was classified as med resistant. We started the ketogenic diet >6 years ago which helps a lot to reduce his seizures. We weaned of one epilepsy med before starting the diet and another one + clobazam in the first year on the diet. He definitly is better without meds.

 

[Lainsta]

Food and seizures

Robin was just wondering how old your daughter is.
Last night i ate Pizza, had 2 glasses of port and an apple crumble (all of which i never do but i just felt like something different).
Well i woke up this morning a mess. I averted a seizure but it was a real battle between the sparks, the jerks and my sanity : )

I am just learning now about the importance of the food we eat thanks to a fabulous naturopath that opened up my world to excess copper in my diet. Copper being an electrical conductor, i now am tuning into that.
It's so hard to be good all the time and frankly, an apple crumble is worth a bit of electrical activity...dont you agree : )

 

[Gerrie]

My son is free of AEDs for over 5 years now. He has tried over 10 meds but only suffered side effects instead of seizure reduction and his epilepsy (Lennox Gastaut syndrome) was classified as med resistant. We started the ketogenic diet >6 years ago which helps a lot to reduce his seizures. We weaned of one epilepsy med before starting the diet and another one + clobazam in the first year on the diet. He definitly is better without meds.

Dutch Mom,
Lady,
You got a very inspirigng story to tell.
Thank you for warming my heart & giving me hope, I've been missing for so long.
You are defiently a voice of altenatives & hope.
In my experience of the last 10 years of seizures out of no where, doses after doses of medications after medications (Keppra, Lamictal, Dilantin), made me lose trust of the medical industry & the confidence over my Doctors.
So frustrated with medications, I wanted brain sugery.
Guess what???
The two years run around till brain surgery has been a ENDLESS nightmare, even though I'm NOT even sure brain surgery is going to stop my seizures.
THAT'S WHY,,, it's good to hear your good news & buetful story.
You sound like a good music to me.
CONGRATULATION FOR YOUR ACHIEVMENTS!

 

[RobinN]

Robin was just wondering how old your daughter is.

Rebecca is 18. She began having seizures when she was 14.

In my opinion no food would be worth being on the floor having a tonic clonic seizure like my daughter experiences. I no longer drink wine because it tends to always bring on a headache the next day. I think it boils down to what you are willing to tolerate. Good days are few and far between, with all that we have to endure in the day to day living process. I want to preserve them.

I have never had a doughnut that I didn't say.... why did I just eat that?
Now I remember, and don't have to hear that voice anymore.

 

[Endless]

I agree. Robin, Dutchmom, and a a bunch of other people in here have been a tremendous inspiration to me - whether the seizure control came from diet, meds, treatment of a medical problem, or spontaneous remission. It's what kept me on my feet and helped me keep trying.

I have to say, Robin is the one that inspired me to pursue looking into every possible root cause, whether it be blood sugar, diet, cardiac, etc. I"ve posted the rather long list of tests, elimination diets, etc. I did to look into them all.

Dutchmom's story led me to call a few dieticians to ask about a ketogenic diet. I found out that the fact that I'm an adult makes the answer "no." My doc also said "no." Vegetarian wasn't a consideration at that point (you'd have to eat a ton of cheese, cream, eggs, etc., so being a vegan isn't possible, but being an ovo-laco vegetarian is possible on this diet) A modified atkins diet is possible, but very difficult for vegetarians like the ketogenic diet is, and the bulk of the research shows that results aren't as spectacular as the ketogenic diet in most people. (darn.)

Because I really want off these meds. Though I'm doing well on Lamictal compared to the other drugs.

Really well, except for maybe the headaches, dizziness, blurry vision, continually stuffy nose, blood pressure that's fluxuating wildly, some mood swings, inability to sleep... but I can handle all this. At least I have seizures somewhat under control, my thinking ability and memory pretty much back, and that's what I care most about.

 

[Lainsta]

wow endless that's a hell of alot of side effects! I just came from my naturopath and we were talking about the diet thing. She is looking into it for me because she's convinced this is one avenue worth taking.
I'll let you know what she comes back with.

All those side effects is why i'm so afraid to go back on the meds even for a little while. People said to me "its been 10 years surely they have better meds now"....um by the looks of it, not at all.

 

[Endless]

The meds ARE better now. Most people go on them and have no trouble at all, or have just mild side effects. Everybody else lands in here.