I really need help

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Lexene

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I got diagnosed with epilepsy back in March, and I don't know what to do. There is a lot of back round to talk about though.

When I was 13 I was diagnosed with bi-polar and PTSD. I was put on lexapro, seraqual, and lamictal. I was taken off lexapro because I was 95 pounds and in the first week ended up losing 7 pounds, and I didn't have weight to lose obviously. So they put me on Celexa instead of Lexapro. I was always skinny, my family never gained any weight. Even the pregnant women never gained more then 25 pounds during pregnancy. We have amazing metabolism. So from age 13-16 I went from 95 pounds to 155 at my heaviest. I lost my metabolism. I trained in karate and was always active I ate healthy there was nothing I could do. At 16 I met my fiance, then boyfriend, and he told me I need to stop with the medicine because my mental state was going. I always had a happy personality but the medicine made me dull. The medicine was meant to control the bi-polar but made me more suicidal, depressed, lifeless is the best word. Plus no matter how hard I tried I lost my metabolism, I could NOT lose weight. I stopped the celexa at 17, cold turkey. I was told it could have killed me but I didn't care. Then at 18 I stopped the lamictal and seraqual XR cold turkey.

When I stopped everything I lost all the fat I gained. I'm down to 112 no effort, I can eat what I want, and I don't gain weight. So in 6 years I gained 60 pounds of fat after working my butt of, and eating healthy then lost 43 pounds with little effort.

When I turned 19 I ended up getting dizzy spells that continued getting worse and worse. I could feel that when I would stand up I would get dizzy and fall. And I can't cope with temperature very well. With bathes I would be ok one minute then overheat and start losing conscienceness. I would get out then lay down. I never told anyone till March, when my fiance and I took a shower together, there was no sex, just talking. I fell. I completely blacked out. He caught me and put me down. I came back and he told me were going to the ER. We went they did extensive testing and found nothing. Then I went and had an EEG, and they found epilepsy.

I am not on medicine. After my teenage expierience with nuerological medicine I do not think anything could ever make me go back on it. I am trying with the ketogenic diet, and it works a little, if I eat the diet perfectly. But I know its getting worse. If I stop doing something, anything for an extended amount of time I start to get dizzy, and trip and stumble. I will sit down in 75 degree weather then starting to sweat and not feel the actually temperature. I never have an issue with cold weather.

If anyone can help, or tell me anything that would be appreciated. I do not have insurance, and can't afford to go to a nuerologist. I have no family to help pay for anything. I apologize for all the grammer mistakes, its 1:30am and I can't sleep. I just need to talk to someone about this.
 
Hi Lexene, it sounds like a rough road for you. The drugs you were taking are very harsh on your system as you found out. I guess it is reasonable to see why you would not want to take them. A few questions:

Are you single and low income? If so, you may qualify for health insurance through the government. Worth a look.

Are you in fact bipolar?

Its very important to find out exactly what you are dealing with as you make decisions about your future. It sounds like you are with a caring man who is trying to do what's best for you. Make sure when you do go to a doctors appointment that he goes with you so he is aware of your medical diagnosis as well. Please don't get pregnant until you know. A pregnancy can make matters worse in either case ( bi polar and seizures). It is better to be fully aware of your health first. I only mention that because you are at that family starting age :)

Anyway, from what I've read here at CWE, alot of posts say to avoid the "triggers" that cause you to have a seizure. Sounds like that would be hot water and standing up quickly. However there are other things possibly going on. I hope you can get some insurance so you can get to a doctor and discuss all these issues.

It seems you realize you have some problems and are looking for answers... but the medications scare you. They scare me too. But there are many different types of medications now and some with less side effects. There aren't too many that will cause the weight gain. In fact they gave me one and I lost weight. Also, you don't have to take so many. Maybe just the seizure Med, but not the others if you feel mentally stable. But first step is a doctor visit to sort out the details. If you can't get insurance, you may be able to find a low cost clinic and just pay for one visit to get started. They may know of a way for you to get help.

I hope you are able to sort some of this out. Im glad you posted. Talking among CWE members has really helped me a lot. And there are a lot of excellent resources here to help you look things up and get some answers.
 
Hi lexene --

The Ketogenic diet can be very difficult for adults to follow, and over time it can be very unhealthy for other parts of the body. You might have more success, and a slightly easier time of it, with the Modified Atkins Diet. More info here: http://www.atkinsforseizures.com/

Best,
Nakamova
 
Thank you for the reply.
I always knew I had bi-polar because the episodes I have are uncontrollable I'm 19 and one little trigger will make me go off at someone, then in the back of my mind I'm telling myself to stop but cannot. I'll have depression for something dumb and cannot get out. When I become manic I act like a 5 year old girl who just saw her first pony then cries when something cannot go my way. I work hard at making sure outbursts don't happen but they do sometimes. Plus I have a very long family history of mental health issues.

I was a dependant of the court (it's like a foster child but not quite) so I had medicaid till I turned 18. I moved in with my fiance and he has been taking care of me financially since I have no one else. I lost my medicaid but I am a full time student and at the moment don't work. His job gives him and his spouse insurance, but we are not married so I don't recieve it. We are getting married Dec 12, so that will change in 6 months.

I have no plans on having a child till I am done with school and I want a Doctorate so that will be a while. : p At the moment I do not take any vitamins, medicine, not even birth control. I hate to say I am against most drugs because I know they help, but they are not for me.

I just really want to learn about epilepsy. I had an EEG and that was it. Thank god I took out a student loan that semester. I paid around $1,000 out of pocket, and at the moment I am around $8,000 in debt for going to E.R. I don't know what type of epilepsy I have, how bad. I just don't know much about it. I hope here I can learn something.
 
Lexene, I know how you feel. I'm also living with mental illness and epilepsy. I know what it's like to be on drugs for you brain. I know the side effects, and the best and the worst of them. I can't even remember off the top of my head everything I've tried.

But there is something out there that can help you. There is a doctor who will understand, and know what kind of meds work for you and what don't.

I went through years of hell. Both on and off meds. But now that I can go a day without being suicidal and get a good night's sleep, I will tell you that it's worth it.
 
Some colleges have student health insurance as part of the tuition??? Also there are low cost health clinics. I sure hope you can find one.

I know what you mean about pills in general. I usually don't take anything. It seems you are in fairly good shape other than the hospital bills (ugh!). Balancing bi polar alone with no meds is not easy, but people do it. Seizures on the other hand ... I'm not so sure.

I hope more people respond to your post. I'm very interested in thier answers. I also saw somewhere on here about paying for seizure meds when you have no insurance. Try to search that. ;)
 
I was fully against medication as well - I cannot swallow a pill, I took children's liquid tylenol for headaches or cramps.... very against it... and now, I have to take them for my seizures and they are beginning to help (just stated less than a week ago). Its a sad transition but I'm 24 w/ 3 of my own kids and sometimes the hate is just worth it to be able to love longer...

My medical does not start until July 15th and I have a lovely bill coming for a 3 day hospital stay complete with tests, etc... bills will always be there. See a doctor ASAP.
 
I can see why you are wary of taking any meds- you started on meds for depression, and I know from my brother's and my mom's experiences that those meds are horrible. My brother was diagnosed as bi-polar when he was in high school. Celexa was one of the meds he tried, and after taking it for a few days, he could hardly stay awake and then at school he went to the nurse's office one day because he felt weird, so she let him rest for a little while on one of the cots in her office, and then when he went to get up to go to his next class, he couldn't move his legs. She called the ambulance and of course the paramedics tried to get him to tell them what kind of illegal drugs he was taking because he dressed in that goth style so they just assumed he was a druggie when he wasn't. Anyway, at the hospital they said it was caused by the Celexa. He tried a bunch of different meds and they all had horrible side effects, and one of them made him gain 80 lbs. So finally he just stopped taking them cold turkey and refuses to go back on meds even though he really does need them- he struggles with depression and things that come with it like insomnia.
My mom also has depression and anxiety problems and has tried many different meds but none worked for her and just gave her weird side effects. She recently did find one that has worked, though. I don't remember what it's called.
Anyway, I'm just saying I understand how you feel about those kinds of meds, but I find that anti-seizure drugs aren't as bad. Some of them like Keppra can cause mood swings and anger in some people, but there are so many meds to try and usually people find one that doesn't give them side effects, or at least one that gives them mild side effects they can live with.
I hope you can find a way to see a doctor soon and somehow at least be able to try and anti-seizure med.
 
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