Tell me about your experiences coping with epilepsy?

In My Humble Opinion
1

I’m doing class work involving epilepsy and I am interested in getting experiences straight from the horse’s mouth, as it were. Anything is of interest: medications, how long it took to figure the medications out, severity or timing of seizures, how they make you feel, what an “HA” on a medical report might mean relating to seizures, how epilepsy has affected your work life or schooling or social life, etc. Anything you wish to share. It can be about other people, too, if you know someone with epilepsy.

Essentially, while I’m doing reading of actual clinical information, I’m curious about what it’s like to deal with at a personal level.

2

One of my best friends since high school is epileptic, and had been since she was a young teen. It’s only been in the past few years that we’ve reconnected, and she and I have talked a fair bit about what she went through.

Some highlights:

  • She almost lost a year of school when she was first diagnosed. This would have been in the early 80s, and it took them a while to figure out the right meds. She went from being an A student to barely passing, and she’s pretty sure at least one or two teachers passed her only because they knew she was bright, but dealing with a lot at the time.

  • I knew she was epileptic since we met during middle school (I think). But I guess not everyone did; she told me she only told 3 or 4 of her very best friends. We didn’t think anything of it beyond knowing that we’d take care of her if she had a seizure. I never was present for one when we were kids, though some of our other friends were.

  • She did have a seizure in front of me a few years ago. She was in town for a visit, and came over to my house one night. We had a glass of wine, and right in front of me, she went into a seizure. It started out slowly and I didn’t realize what was happening at first. but figured it out soon enough to break her fall - we’d been sitting on bar stools at the bar in my kitchen. I knew what was happening because I knew she was epileptic, but hell if I knew what to do. Out of the blue, a phone number I hadn’t dialed in 20 years jumped into my head, and I dialed her mother’s number. I have no idea how I remembered that, but I’m incredibly happy I did. Her mother talked me through it, and then told me to call an ambulance. Scary stuff, though she ended up all right.

  • That seizure was caused because she’d been forced into a new doctor because of insurance, and for some reason, the doc wanted to change up her medication. After this, she went through about a year of really bad times as they mucked with the meds to find a blend that worked. She lives alone, so this was very scary. Her mother ended up having to move in with her for several months.

  • She’s pretty gun-shy of having her work find out about her condition. I don’t think she tells anyone, because she doesn’t want them to think differently about her.

  • She consciously and constantly has to will herself not to shake. She almost always sits with her hands under the table because they shake. She told me once she really can’t eat soup, at least not in public; she can’t bring a spoon to her mouth without it spilling.

  • She can’t have kids. She wanted one bad enough to look into adoption, but apparently that wouldn’t have worked out either (single parent, epileptic, and her field doesn’t pay particularly well).

I guess overall, I had no idea how hard of a disease this was to live with, because most of the time she simply doesn’t talk about it. I never thought it was a big deal until the last few years, where we’ve bonded over our various chronic diseases (I’m a Type 1 diabetic, diagnosed in adulthood). I really feel for her, especially since whatever meds she’s on now are controlling the seizures but have a lot of other not-so-fun side-effects (like the shaking).

Overall, though, she’s successful and doing great. She has an advanced degree and a good job in a decently high position in her field, and happy and (other than epilepsy) happy.

3

I have an idiopathic seizure disorder (Tonic–clonic seizures (formerly known as grand mal seizures).) of unknown etiology and each and every seizure except the very first one was in connection with some doctor wanting to change my medication. Now after 42 years on the same old medication I may have developed an autoimmune reaction to it. I am awaiting a call now. We don’t know what to do if the autoimmune tests are positive.

4

Thanks to you both!

5

Have you tried a Google search on “epilepsy forum”? There seem to be a lot of them out there, probably with more information than you’ll ever need.

J.

p.s., I’m not trying to be snarky here – just straightforward. I’ve been trying to find out information on non-epileptic seizures recently, and have had a hard time getting info because “seizure” always brings me to epilepsy-related sites.

p.p.s., search my user name for my recent experience with seizures, and PM me if you want more personal info.

6

I didn’t take it as snarky, no worries. I didn’t want to join another site and wanted the option to ask questions if it made sense.

7

I have a partial-complex seizure disorder. When it first developed, I was living in South America and it was triggered by sleep deprivation. Several years later, the trigger changed and the trigger now seems to be hormonal. I haven’t had a seizure since 2008 when I had a “breakthrough” seizure. I take a drug (Lamictal) that I’ve found to be extremely effective and have taken during two pregnancies and breastfeeding. Unfortunately, it’s affected by birth control pills, which is why I had my last seizure. I’d stopped nursing my son so I started taking standard-dose birth control. Apparently it metabolized the drug in my body to below therapeutic levels. My dose was adjusted upward and I discontinued the birth control and haven’t had one since.

I also had a seizure back in 2006 with the birth of my son, though I think that was because the labor was 33 hours long and I completely forgot my meds, and so did the nursing staff. It was categorized as eclampsia, though, because I also had high blood pressure that had started at the onset of labor.

With respect to how I feel before a seizure - I hear this weird Muppets song I only remember when I’m having a seizure. Otherwise I can’t remember the words. There’s a rushing in my head and my ears feel stopped up. If I’m sleeping, I’ll wake up from a dead sleep in a panic before I have one, frantically patting the covers trying to stop it. I remember the pre-seizure very, very well. I can’t speak, but I’m coherent enough to find a safe place.

I black out, but when I wake up, the pain is excruciating. I usually have a days-long migraine (that is new since the trigger changed) and of course it’s like I’ve had a full body workout on steroids or have been hit by a truck. My emotional centers seem to shut down for several days, along with any sensation of taste. I don’t feel anything - not happy, not sad, not frustrated - but I’m good at faking it. I don’t taste anything, no matter how spicy. It’s like there’s just a shell of me and I’m pretending until the part of me that’s me and locked somewhere in my head can come back, bit by bit.

I’m very sensitive to any “tingles” in my head. I feel like I may have talked myself out of a seizure a few times, but accept that that’s probably not true. If my brain gets that weird, rushing sensation and I can count to 100 and say the alphabet, the storm usually calms down in my head.

One thing about having seizures for me that’s quirky is that it seems to have wiped out very selective memories. I can remember what I was wearing down to my underwear the first time my husband and I had sex. But I have absolutely abysmal recall for movies. Almost every movie I’ve seen between the ages of 21 (when the seizures started) and occasionally to present (I’m 37) has been wiped out. My husband will put in a DVD and I’ll say, “Oh! I always wanted to see this!” Inevitably it’ll be something I’ve seen before, sometimes many times, and it’ll come back to me as I watch, but I can’t for the life of me remember it beforehand. And that’s something that only began since I started having seizures in my 20s.