Fed-up!

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I've been diagnosed with epilepsy for about 3 years and every medication I've tried doesn't seem to work. I'm so tired of taking meds and dealing with these f^*king side effects and still having seizures. Why bother staying on meds that don't work? So now I have seizures plus all these side effects of my meds. When I took myself off my meds because they were not working, the Dr's told me I was having seizures because I was not taking my meds. I tried to explain to them that I stoped taking the meds because they were not working so why bother taking them, it just doesn't make any sense to me. I continue to have seizures reguardless of how much meds I take, and when I tell this to my Dr. he just raises my dosage. I wonder if these meds are doing more harm than good. I guess the side effects of the meds wouldn't be so bad if I were actually seizure free and could drive again and have my life and independence back, but that's not the way it is and I'm just fed-up with the seizures and the meds and all the bullshit that goes along with epilepsy! Is there anyone else out there Fed-up?

Comments

Re: Fed-up!

Submitted by heathersmithers on Thu, 2007-05-17 - 11:52

Jodi,, i am one of those in the same boat,, with all the diffenent meds and combinations and amounts that is alot of trial and error...grin.. i am five years in of being a guinea pig as i like to call it... i still have seziures though not as bad.. but still daily,, i take 1200mg tegretol...200mg topamax and 15 mg of frisuim with ativian to put under my tounge if i have more than two or three in a row.. yep thats alot of meds and yep its alot of side effects... but would i rather live with the seziures....hmmm....hell no... i would rather have total seziure control... i dont see it happening.. i think i am going to be what they call intractable.. may have something to do with my MS ..i dont know... i do know that with my meds i could replace breakfast.. if you have ever seen the movie grandma's boy.. you know what i'm talking about...grin... What i do know .. is that i am taking all these meds and putting up with all the side effects so that hopefully i will avoid a grand mal and not end up in the hospital,,, im taking all these meds so that i can maintain some independance in my life... and at times be able to do things alone.. it has not gotten to the point where they have returned my power tools..sigh.. but soon...grin... But fed up and angry with all the bullshit that comes along with it... yes.. i would think that most people on this board are... and i know that some people on this board have been dealing with this for 30 or more years... at this point i cannot even begin to fathom that.... No to by any means lessen your anger you have every right to it... But dont let it take you over and by no means dont let it push you into making bad choices about your own health... read up on epilepsly.. read up on status epilepsly..if im not mistaken that is one thing you may or may not face when chosing not to take your meds if your seziures are continuing... So in the end ...have your anger.. but let it be healty anger... just dont put your health/life at risk because of it.. Heather

Re: Re: Fed-up!

Submitted by Jodi19 on Thu, 2007-05-17 - 12:06

Thanks Heather, You've shown me my situation is not as bad as it could be, it's just extremely frustrating. I'm still taking my meds, even though I bitch about it - I just want my old life back (medication & seizure free) anyway thanks for your sound advice :o) Good luck with your seizures, may they go away and stay away. (((((BIG SUPER TIGHT HUGS))))) Peace ~ Jodi

Re: Re: Re: Fed-up!

Submitted by ltiger19 on Fri, 2007-05-18 - 11:28

Hi there, I just wanted to put my two cents in. I'm 23 and have been living with epilepsy since I was 11. Well, that's when I was diagnosed. They think I've probably had it since infancy. But anyways, I've been on every single medication that they have avalible for epilepsy and none have completely controlled my epilepsy so I've never had the opprotunity to get my driver's license. It kills me. But what I wanted to say is that I finally took my own step to controlling them by contacting the epilepsy clinic at a nearby hospital. They suggested that I have what they call a Vagus Nerve Stimulator implanted. It's not supposesd to completely control the seizures but it's supposed to help with the frequency and intensity. I just had it implanted a week and a half ago. They haven't even turned it on yet. But I just wanted to tell you of the procedure as maybe a little help. With your meds and the VNS maybe it will help immensely. Just another alternative. And another thing, getting frustrated and angry can lead to depression (as if we need anymore help) so please try to stay upbeat. At least you're able to talk to us. People who understand and are willing to help you out.