Hello

[Lolzkitten]

Hi, I'm not quite sure what to say. I've never been around so many other people with epilepsy before.

I guess while it's been annoying I think I've managed to come to good terms with it and don't mind it so much any more, just more of an annoyance and embarrassment when it happens in public. Guess that has a lot to do with having a good man to stand by you.

I feel like my family and I have been flying a bit solo with this whole thing though. I can't seem to get many answers and am puzzled and confused about a lot of things. I've been epileptic for nearly 9 years now and have seen 4 or 5 neurologists (can't remember how many right now) and an epilepsy specialist. Most of them thought my epilepsy was so unusual that they didn't believe us at first and each time I went to a new neurologist I had to take more tests. EEG's always show results while CT and MRI's show nothing. (Otherwise I don't think they would've ever believed me.) The epilepsy specialist just said that epilepsy can be extremely different for everyone and shrugged it off. From what I've read on here so far, it does seem like there's a huge variety. I was wondering if anyone else has had these things...

My epilepsy has changed drastically. I used to just collapse randomly and seize. That slowly changed to me getting severely ill for an hour or two before I have a seizure. It's changed a lot in other ways too, but that one seems the oddest to me. None of this changed suddenly, it was very slow. I'm wondering if it's settling in or if this odd or what.

I've been assuming that the reason the doctors only tried 3 different drugs on me was because I had such nasty side effects and they didn't work. They said if these three drugs didn't work I'd need surgery. Is there a different reason why they didn't want to try other things? (I can't ask them because I moved, don't have health insurance anymore, and well, no way in heck am I getting surgery so I didn't go back- that was 2 years ago.)

Three years ago I had a seizure and I swear it very nearly killed me. Is that really possible? It's hard to explain, but my husband and I are both surprised I survived. As it is, it killed our baby. I guess that's the last question, if drugs don't work is there something I can do to make sure when we decide to try again that we won't loose another child? I've tried to ask my doctor about it but she said that we'll get there when we get there, but I want to know now. (Again, can't change doctors- no insurance. ) That's the only thing that I have a hard time dealing with about having epilepsy and I don't know how on earth either my husband or I could do it again.

 

[Lolzkitten]

Also

I forgot to mention- along with the changes in my seizures my recovery has changed a lot too. Before when I'd have a seizure I wouldn't be able to eat for a day or three and between the seizure and the not being able to eat after I would loose 10-15 pounds in a week. Now I can't eat for a little afterwards but then I get extremely hungry.

 

[Nakamova]

Hi lolzkitten, welcome to CWE!

You've found a good site -- folks here are great at providing empathy, advice and support. I hope you feel free to wander around and explore the different forums.

I'm very sorry to hear that you lost your baby during a nasty seizure. Big hugs to you and your husband. Since you are planning to having kids in the future, it would be great to have an OB-GYN who would work closely with your neurologist. I know you're not fond of the neuro you have now -- are there any other neurologists that are covered within your health insurance plan?

If meds really are not an option, then it's important to be as proactive as possible about your overall health. (See http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/) Keeping a seizure diary is a great way to look for seizure patterns and triggers. If you can, keep track of the time of day you have your seizures, what happens, for how long. Note down as well things like nutrition and sleep, metabolism, hormones, and anything else that might qualify as a physical or physiological trigger. Is it possible that hormones are a trigger for you? For many, estrogen plays a role, and since estrogen levels rise during pregnancy that can be an especially risky time. Some CWE members have found that changing their diets has helped with seizure control, and there's info on that in the link above.

The changes in appetite you mention might have been affected by meds (if you were on any), or by other factors, but it's also the case that seizure disorders evolve over time. If your seizures seem to be getting more frequent or lasting longer, then it's important to try and find ways to get them under control.

Best,
Nakamova

 

[Endless]

Lolzkitten,

Welcome to the forum. I'm so glad you found us. There are great people in here, and having company in all this has made a world of difference for me. I think it may for you, too.

I'm so sorry to hear about your baby. Miscarriages are so impossibly hard. My thoughts are with you and your husband.

Seizures can change over time. Everyone has a different aura - being sick before a seizure happens to some. The fact that your seizures are changing says to me that you need to get them under control. Sometimes uncontrolled seizures can progress and become much worse over time. Untreated/uncontrolled seizures can also be dangerous if you are driving or doing other tasks (like cooking over the stove).

There are MANY seizure drugs out there now. I'm on my 4th & 5th (Lamictal + Gabapentin). If these didn't work, there would have been lots more to try. Same for you - there are lots of crayons in the box. Here's a list of some of the medications available. http://en.wikipedia.org/wiki/Anticonvulsant

Many of the meds are considered relatively safe for the baby during pregnancy, and it will help keep your seizures in check to help avoid another miscarriage. You should probably be on one of these pregnancy-safer AED's now, well before you conceive again.

I don't know where you live, but in my major metropolitan area there are OBGYN's who have a subspecialty in working with expectant mothers with epilepsy. Usually the neurologist and the OBGYN work together. Some may be willing to charge discounted rates for you, if they know the situation.

Here are links for articles on pregnancy and seizure disorders:

http://www.epilepsy.com/epilepsy/newsletter/may10_pregnancy
http://professionals.epilepsy.com/page/hallway_pregnancy.html

Since you don't have insurance, you might find these links helpful:
http://www.coping-with-epilepsy.com/forums/f23/resources-11497/
http://www.coping-with-epilepsy.com/forums/f23/when-you-cant-afford-medication-1452/

Nakamova is right about the seizure diary. It helps immensely in identifying seizure triggers. Here's a list of links to pre-formatted seizure journals:
http://www.coping-with-epilepsy.com/forums/f23/seizure-journals-10776/

 

[Lolzkitten]

Thank you

Thanks to both for the links. It'll be nice to get some information on all of this. So glad I found this site- I could never get concrete answers from any of my neurologists.

I'm definitely not driving- I really don't want to hurt anyone.
I guess the thing with the medications is they affected me so strongly that I'm scared of even trying them again. I would get strong hallucinations, was very high, got violent, aggressive, and destructive. I got so cold and unable to think that I wore a sun dress in the middle of January, on the coldest day of the year. I nearly 'ran away' in nothing but a nightgown in the middle of the night in February. I smashed plates, tested dogs to see if they were high, screamed/yelled, babbled, and cried a whole ton, lost all sense of emotion and love. None of this is anything like me at all. It was a Dr Jeckyll and Mr Hyde. I'm utterly shocked that my then-boyfriend now-husband stuck around at all. I'm afraid I'd do something stupid or harmful if I tried things out again. I don't know, I just seem to have strong reactions to medications. Flu shots get me sick, Tylenol and cold pills make me high, and antibiotics make me far more sick than the original illness. I'm not sure what to do about medication at all.

Thanks again for the links, I hope there's something that'll help me control the seizures somehow.