new here. sick of meds.

[leslierh9]

i've been medicated for over 6 years now.. most of my teens.. and i have been thinking a lot lately that i want to take myself off meds.
i am taking a variety of 4 meds right now, but that number will probably go up in about a month or so.. that is, if i continue taking them.
i've never had a problem taking/swallowing pills until just the past week. its as if my body is trying to reject them. and that is what got me thinking about this whole subject at all.
it could, and might just be all psychological. but i have never liked the fact that i have to be dependent on pills. and i dont want to live a life like that.
is it really that hard to be normal? for me, it is.

one year after i got diagnosed with epilepsy, i stopped taking my meds, cold turkey. and never experienced any kind of seizure, or even headache for that matter. but once i spoke out about that and told my mother i wasnt medicated, i got put back onto medication of course, and then seizures started happening again...
i know i cant expect for it to happen like that again, especially since i have had spells recently and i do have headaches and migraines often, but i truly think that is because of the medicine i am on now.

arent we more in tune with our own bodies than any doctor out there?
what to do what to do..
hmmm
:e:


what to do what to do.

 

[Nakamova]

Hi Leslierh9, welcome to CWE!

You're not alone -- most of us here are frustrated by our meds in one way or another. Check out:
http://www.coping-with-epilepsy.com/forums/f34/i-realized-im-afraid-meds-9319/

The anti-seizure meds are very powerful, and have a variety of short-and long-term side effects. It's always worth considering adjusting dosages to minimize side effects, or eliminating a med altogether if possible. (If you're on more than one AED).

It's also a great idea to be proactive about your overall health, and consider alternative approaches that might also help with seizure control: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

If you do decide to taper off altogether, it's important to be aware of the risks, especially if you go too fast. It's great that it worked for you cold turkey the first time, but the longer you are on the meds (and the more different ones that you are on), the more careful you should be as you taper off (ideally with your doc's supervision or knowledge, in case something happens). The process should be as slow as possible, in tiny increments. There can be side effects that are experienced as part of the tapering process, so it's important to be prepared for those as well. If you are keeping a journal, that can help track what may be symtpoms and what may be side effects.

Definitely get informed before you take the next step. CWE is a great place to start -- the members here can offer a ton of anecdotal advice and support.

Best,
Nakamova

 

[Endless]

Hi, Leslier! And welcome!

I agree with everything Nakamova said.

I completely understand what you are feeling. I waffle back and forth between "what's more important - seizure control or no side effects?"

I've struggled a lot with the drugs. Trileptal was so bad I went off of it against doctor's orders, and at a speed that was ill advised. It was awful. I will never go off a medication without the help of my neurologist again. So I encourage you to work with your neurologist if you decide to quit taking them.

It's possible that perhaps a new drug might be better for you? Ask your doc the question. Maybe he'll have a suggestion. I'm on Lamictal now and it seems to be better for me than the other ones.

Also ask him about the risks of going off your meds. Many in here thought their seizures were under control, they quit taking the meds, and then a few months later their seizures not only returned but escallated. Others in here went off, no problems.

 

[leslierh9]

Thank you both

Some of those things I have not taken into account, so thank you very much for bringing them to my attention.
Both of ya'll have helped in as far as what to do next, which will definitely be talk to my neurologist.

I really and truly appreciate it. [:

 

[RobinN]

Your situation is exactly where I saw my daughter headed. It wasn't the quality of life that I wanted her to have. Her seizures began at the age of 14, and we tried medication. It seemed to make matters worse, not better. I was told that we had just not found the correct compatible drug. Ha! I used the information that after 4 meds the probablility of finding one that works is reduced dramatically. So I said I wanted to try alternatives.

It has worked. Making serious changes to her nutritional choices, adding in vitamins and minerals for brain and body health, as well as keeping blood sugar balanced, she has now made it 6+ months seizure free. She use to have 6 per month when on meds.

For her is has made a difference to heal the GI system. My research has proven that there is a brain gut connection. You might consider emphasis in making sure all organs are as healthy as possible. You might easily be able to reduce meds or eliminate them all together.