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Post by heidihope on Sept 27, 2006 12:54:06 GMT -5
So, my life has been particularly crappy health wise and everything else for the past few months. Nothing new there. The brilliant docs decided to put me on Dilantin a few weeks ago, and I struggled through some pretty bad side effects with that, but what the heck, it was worth a shot if it worked. Went to go get blood drawn last Wednesday, passed out on the tech, and then had a seizure on their floor, so they gave me 10 ccs of Valium right there, and sent me home, b/c I refused to go to the ER. That night, I passed out again, and had another seizure, and the family I'm staying with called 9-11. I don't really remember the next four days after that, but apparently the docs kept thinking if they just gave my little 115 lb body just a little more dilantin and valium, the seizures would stop. Well, they did, but so did the rest of me. Sunday I was finally lucid enough for my friends to fill me in on what an idiot I am when I'm high: catching snowflakes, and pointing out looney tunes characters that were floating above my bed, my boyfriend suddendly became the plant in the corner, and I only wanted to talk to my hallucinations, b/c they were the only people I could see clearly who could actually understand me. Yup, it was pretty messed up. Then the doc tried telling my that it was a mental problem, b/c the EEG they did (keep in mind while I was ENTIRELY HIGH and not even moving) came back normal, so they sent in a psych consult, who fortunately told me I flunked being nuts, and gave me referrals to two supposedly good neuros in the area. I got back home yesterday, and I didn't even bother to fill any of the prescriptions they gave me. I just don't care. I don't want to take any more meds that don't work, especially when I end up in the hospital going toxic on them. I'm done. I'll pad my bed posts and put in softer carpet. So I'm depressed, and bitter, and frustrated, and not at all my usual bubbly self, even though it does make me smile to think about catching the snowflakes.
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Post by Mandi on Sept 27, 2006 15:02:18 GMT -5
Heidi honey... I'm so sorry you're dealing with all this BS. It's ridiculous for those doctors to just keep pumping meds until they go toxic. I think it's wise for you to just give your body a rest. You've been through so much lately. Give yourself some time to really think about what you want to do as far as treatment options. You'll figure it all out. In the mean time, stay away from the snowflakes, ya?  Email me anytime honey. 
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Post by fourstar on Sept 27, 2006 17:35:12 GMT -5
Heidi: Relax and you will find the solution that suits you. Welcome to the med reject club ,you will never be alone, I guarentee you that. Feel better ((((((hugs)))))))
Riva
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Post by heidihope on Oct 2, 2006 12:34:56 GMT -5
Thanks, guys. I've stayed away from the snowflakes. But the rain's been interesting lately. Never mind, I'm a dork, and I'm not even sure that's funny. I've felt a ton better the last few days. I even went hiking yesterday, for about three hours, and I'm sitting upright and smiling this morning, which is soooo not typical. I think stopping the meds may be the best decision I could have made. I'm still going to give a new neuro a try, but right now, my body definately needs the break.
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Post by Mandi on Oct 4, 2006 12:09:35 GMT -5
Hey Heidi... SO glad you are feeling better hun. I'm so happy you decided to take a break from the meds, even if it's temporary. Enjoy it hun, you deserve it.
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Post by havreman on Oct 4, 2006 12:54:37 GMT -5
Fight on, Heidi. You have been in a tough spot but you are still here.
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ranman
Junior Member
Posts: 66
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Post by ranman on Nov 8, 2006 1:28:16 GMT -5
 Hmmmm..........toxic on dilantin ~ been there - done that - not a good feeling. As well as epilepsy, I also have Ulcerative Colitis. The meds that I take for the UC, if not administered properly can have a severe effect on the Dilantin, mainly toxisidy. IE: Ulcerative Colitis ~ when active, is bleeding ulcers in the bowels and/or rectum, blood in the stools, diahrea, bloating etc . The medication I'm required to take paints a protective coating on the bowel lining, hence slowing down the time it takes for the AEDs to "break through the bowel lining and be absorbed into the blood stream". As a result of the blood level reading not being at the theraputic level, my neurologist doubled up on my AEDs and they went toxic in my system. If I have a UC flare up ~ My GI suggested to double up on the UC meds and then I would have to triple on the AEDs, so now my neurologist is managing both of my conditions ~ it's like a balancing act. My Neurologist says that both of these coditions are stress related (although not proven) and the added stress causes an increase of the secreation of adrenelin which is very acidy. Luckily I haven't had a flare up in years. Randy
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Post by heidihope on Nov 12, 2006 23:12:51 GMT -5
Randy, you gotta love the balancing act of all this mess.
It's nice having a break for awhile, and things have been a lot better. The last few days have been a little rough. I had a seizure at a club, which fortunately was pretty empty. It's funny in that situation, though, b/c when you leave walking all funny and looking like crap, everyone just assumes you've drank too much.
I find out in the morning if I got a management position for the local Target, for non-sales. I'm really hoping I did, at the same time I'm worried about going back to work after three months off. But I need to get my own place, and I want to go to school, and I can't do those things with what the state pays. It's time to jump in the saddle again. I'm still not taking any meds - just Ativan when I start twitching too bad. Things are much better for me w/o side effects. The cure is always worse than the disease, and since I have seizures about the same amount either way, I prefer not to have the other problems with it.
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Post by Mandi on Nov 14, 2006 19:40:12 GMT -5
Hey Heidi hun - Just curious if you got the job or not. If you did, CONGRATS HONEY!!! If not, don't worry about it.. they didn't deserve you anyways. ;D
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ranman
Junior Member
Posts: 66
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Post by ranman on Nov 16, 2006 0:13:24 GMT -5
Heidi,
Good luck with the new job.
I worked for the Canadian Federal Government for 30 yrs.
I was an Administration Manager for 21 of those years but my meds were screwing around with my brain and effected by my decision making so I had to demote myself to a lower position.
It's great that you were able to "kick" the meds and have a clearer mind.
Good Luck to you Heidi.
Randy
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Post by heidihope on Nov 23, 2006 19:59:27 GMT -5
I got the job! I started Friday, and it's going really well. No sign of seizures, just a few awkward twitches, but nothing I can't handle. It feels so good to be able to work again! It's a 4 am - 12;30 shift, which is a little hard on my body right now, but I know in a week or two it'll feel normal, and I wont think twice. I'm getting my own apartment next week as well, so overall things are looking up. Yeah! I needed the break from tragedies.
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Post by andrew on Nov 25, 2006 16:44:29 GMT -5
Congratulations on the job, Heidi. The hours sound truly grim but it must feel great getting back to work. I can only imagine how frustrating and worrying the last few months must have been. Hope it's working out for you so far
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Post by Mandi on Nov 28, 2006 23:28:35 GMT -5
Heidi... I am SO happy to hear you got your job. That is amazing news and I'm so proud of you. Don't work too hard, and try to enjoy yourself. Don't worry about the hours, you'll grow into them. 
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