No more AED's

[todub]

I have complex partial seizures. I was diagnosed in August 2007. I currently take 100 mg of Topamax in the morning and 100 mg more at night. The meds pretty much make them stop altogether, but my quality of life since admitting to the epilepsy and being put on meds has gone down so much because of the side effects of the medication that I would rather be drug free and attempt to combat the mild case of epilepsy that I have with a combination of a healthy diet, healthy sleep pattern, and exercise. I am going to tell this to my nuerologist on Thursday and also ask him if it will be possible to keep my drivers license while stopping the meds, does anyone think he will go for this? Also what is your opinion of everything else stated about? Any ideas/opinions of any nature will be much appreciated, thanks!

 

[Bernard]

... ask him if it will be possible to keep my drivers license while stopping the meds, does anyone think he will go for this?

He is bound by the law which requires you to be seizure free. If you experience seizures or go against his medical advice, he isn't going to stick his neck out with the DMV to keep your driver's license.

Also what is your opinion of everything else stated about? Any ideas/opinions of any nature will be much appreciated, thanks!

I think you should go ahead and start your proposed regimen while still taking the drug and once you've established the routine, talk to your doc about possibly tapering off the drugs and see what happens (ie. if you maintain seizure control).

Docs are more willing to work with someone that is working with them, than someone who ignores their advice wholesale.

 

[Meetz1064]

I am

on the same dosage of Topamax, along with Carbatrol, and Klonopin.

What kind of side effects are you having?

I do agree with Mr B, though. Your neuro is NOT going to stick his/her neck out for you........not the way you'd like.

Have you considered alternative treatments? Check out the link at the bottom of Mr B's post...that will take you to a bunch of interesting information.

Also........these 3 links will take you to the 3 major diets that ADULTS use to help aid in seizure control.


http://www.coping-with-epilepsy.com/forums/tags/gard+diet.html

http://www.coping-with-epilepsy.com/forums/tags/modified+atkins+diet.html

http://www.coping-with-epilepsy.com/forums/tags/lgit+diet.html

You might also want to check out the Epilepsy 101 thread if you haven't already......

http://www.coping-with-epilepsy.com/forums/tags/epilepsy+101.html

Good luck, and take care!

Meetz
:rock:

 

[brain]

I side with Bernard 100%. And no Medical
Doctor is going to risk their own profession
and liabilities "just because a patient wants..."
It just does not work that way.

While every State / Country has their own
laws, rules, regulations which varies in which
Doctors must comply. Some areas are more
rigid than others; but the main issue here is
"common sense".

First of all - being seizure free is the first priority,
not being med-free.

While I am NOT A MEDICAL DOCTOR - I am
implying that if you feel that you have been
E-free for xxx number of years/months, and
having been on this xxx medication(s) and have
had absolutely NO SEIZURES and you are being
completely honest.

The next step would be to gradually reduce you
off of your medication(s) under the Neurologist
or Epileptologist's supervision, ONLY IF HE/SHE
deems that it can be done. He/She will NOT do it
if they know that it cannot be accomplished, even
if you feel otherwise. You may go for a 2nd opinion
for a further evaluation and review, but it does not
guarantee that you will be off of the medication(s)!

The titration of the medication(s) being gradually
reduced is a slow process and must be carefully
monitored, because if at any point if a seizure does
occur, it will blow your chances of obtaining a driver's
license and not only that, it may very well "rock the
boat" of the medication(s) that was working for you.
There have been cases of individuals where what
was working for them, when they were gradually
titrated off of it, just could not be titrated back to
where they were before! So there is a risk factor
involved there. And sometimes is not wise to toy
with something that is working.

But if the evaluation is revealing that it is possible
for you to be taken off of the medication(s) or be
lowered (but not removed entirely) or removed off,
you can expect a year or two or three of this process
(it varies depending on the individual and the reaction
and the response).

Then "if only" after the medication had been removed,
there is a time frame/period - depending on the laws,
regulations, etc - of some States / Countries; in regarding
how long you have to be E-free while being off of the
medication before you can even be considered eligible
for a learner's permit (if you never driven before) or
a driver's license or a restricted driver's license for
a time being.

It is a lengthy process - but it will be worth it all at the
end, but whatever you do, never do anything without
your Doctor's supervision and do not take yourself off
of anything on your own!

 

[todub]

What kind of side effects are you having?

I'm 6'6" and gone from my natural weight of 205 to 175 since starting it. There is also fatigue, weakened immune system (I have had a cold for 6 weeks), extreme sensitivity to the heat, really bad cramps in my legs from time to time, and some mild mood alterations.

 

[RobinN]

And no Medical
Doctor is going to risk their own profession
and liabilities "just because a patient wants..."
It just does not work that way.
[/B]

I have to say that our neurologist at USC has been keeping Rebecca med free because we want her to be. I think she is pleased with the results as well.
We are told to remember to make sure she keeps up the higher dose of MAGNESIUM as her therapy.

I think there are some doctors that are willing to work with you, if they see that you are being proactive, and finding ways to reduce the episodes.

 

[Bernard]

I'm 6'6" and gone from my natural weight of 205 to 175 since starting it.

Every time my wife has experienced significant weight loss, she has had increased seizure activity.

 

[todub]

We are told to remember to make sure she keeps up the higher dose of MAGNESIUM as her therapy.

how much magnesium is your daughter taking? Within just the last week I finally wised up and started taking a multi-v which has 100mg of mag., and a mag supplement which has another 500 mg., is this too much, not enough considering I'm a male at 6'6" 175lbs.

A bit of an update on this thread. I went to my neurologist and instead of getting less drugs I was prescribed more! I know a lot of street drug dealers a couple who are my friends and I swear a couple of the doctors mentality I have come in contact with is quite similar they are just more intelligent in the way they approach you. If that offends anyone I apologize but as someone who sees stupid people ruin their healthy bodies and brains with illegal drugs (not having ever done it myself my epilepsy was inherited) and then being forced to take a poison everyday against my will and pay a large amount of money for it, it is quite frustrating. It is also extremely difficult not to see a correlation between American doctors and drug dealers for me personally because I'm around it.

Anyway, I'm currently taking 100mg of topamax in the morning and 100mg more at night and now I'll be taking 300-500mg of lamictal depending on how my body takes to the "medicine". For anyone who has found a new life thanks to any combination of aed's I am extremely happy for you and don't mean any disrespect I am just frustrated at this time.

 

[skillefer]

Honestly todub, I doubt your neuro will let you keep your license. After all, the law in the law, and if he thinks you're going to be a driving hazard he'll be honor bound to report you. As for going off the meds, I can understand your frustration...I suggest you do as Bernard says and start your lifestyle changes now. Also, as to the Magnesium, I'm 5'3" female and take about 1500 mg. a day.

 

[Bernard]

... is this too much, not enough ...

If you experience diarrhea, you are taking too much.

 

[dfwtexas]

I was told DMV laws vary by state and in TX (where I live) that dr are not required to report seizures to DMV. Not sure about where you are. I was told the reason why this is...is because patients will not be honest with their doctors if they know that it will only result in a report to DMV.
I know CA requires Dr to report to DMV

 

[RobinN]

My daughter is about 115 lbs and takes 800-1000 mg.