Seizures after 14 years - not reacting to meds well

[bangerlm]

Hi. I am new here. I had 4 seizures when I was 15 years old. They started in my leg and then spread to grand mal. It is very odd because I remember them entirely. My first one happened while I was sleeping and I thought I was being possessed by a demon. I managed to crawl across the house and wake my parents and I had another one. I remember my mom telling my dad to call 911. The third was while they were trying to x-ray me. I remember almost falling off the table. Anyway they diagnosed me with viral encephalitis. I was in the hospital for four days. They put me on dilatin. I got a rash, they switched me to Tegretol. I took that for 6 months, never had any more. Went off of it and haven't had a problem since till a few weeks ago.

I woke up in the middle of the night throwing up. It wasn't very surprising because my daughter had had the flu a few days prior. My husband started throwing up an hour later. I didn't eat anything all day. I was really tired. Me and my husband sat on the couch while are two kids (1 and 3) ran around like crazies, unsympathetic to our plight. Finally we called my sister and she came and got the kids and took them to McDonalds to play and me and my husband went to take a nap. I woke up about 30 minutes later having a seizure. Same thing-- it started in my leg and crawled up my body till I couldn't breathe. Then I passed out. Apparently I had another one in the ambulance as well.

They put me on Tegretol (generic) initially because I was breastfeeding and that one seems to be ok. But I didn't react well. I was very sluggish. It felt like I was walking through jello, and I don't remember that week at all. So then they put me on Levetriacetam, and I had to wean . It was significantly better, but giving me bad insomnia, anxiety, and felt like it was messing with my blood sugar. Also when I tried to bump up from 500 to 1000 it got way worse so I went back down to 500mg. So then the neurologist told me to try zonisimide. I swear she said she wanted me to start on 25mg and not to wean off the other for a week, but when I got the prescription it was for 50mg. The zonisimide was awful and I was puking, shaking, and the anxiety and insomnia was even worse. I was absolutely terrified and probably borderline depressed. I didn't take any more, but I don't think its completely out of my system yet, but I do feel better.

I haven't had any more seizures. My MMR came back normal. She said there was a fingerprint on my brain?, but not anything she thought that looked like damage. My EEG came back normal as well, but I had been on the Tegretol for a week when it was done, so I suppose it could potentially have been masking some abnormalities.

But my quality of life isn't good. The only time I feel good is if I'm not too close to time to take my medicine and I've just eaten a large meal. Otherwise I feel tingly, faint, basically like I have low blood sugar. In the past I have felt like I was sensitive to blood sugar drops (possibly reactive hypoglycemia) and had slowly started eating what a low glycemic load diet and it has tremendously helped me. I've never taken my blood sugar though so who knows. But I am the opposite of all the risk factors--i eat well, exercise frequently, etc. But I got a glucometer and my blood sugar isn't low (100-110) when I feel icky so it isn't actually affecting my levels. (I've only taken it once when I felt good, but my blood sugar was higher (145) and it was about an hour after a meal)

Also I keep having freak out attacks where I feel like I am going to have a seizure and I pace all around. Sometimes they are near a dosage time, so I've taken medicine. Most of them have been in the middle of the night and I wake up freaking out. Eating also seems to help. So I don't know if I'm thwarting off seizures, or if they are just side effects from the medicines (all of them could be tied to new medicines, or too much or too little medicine due to experimentation or spaciness by me). My husband's work schedule is flexible which is nice because he can drive me and help me take care of the kids, but he has to work in the middle of the night sometimes, and when I'm by myself with the kids and it is time to go to sleep I will panic, especially because when I have one it sets off more. In general I feel like I am a mentally strong person, but I'm fighting the meds too...

I am also not totally convinced that I need medication. My seizures weren't completely unprovoked. I was sick. I kind of want to go off medicine to see if I would have another, to see what my EEG looks like unmedicated. To get some proof that I am at risk and that the dealing with the meds is better than the alternative. I hate how I feel, but after the zonisimide I am scared to try new medications. But I am also terrified of having another seizure and going off the meds I dont' think will be pleasant either. Basically everything just sucks.

Sorry so long.

 

[Endless]

Bangerlm,

Welcome to CWE! This is a great forum with lots of info and support.

I'm so sorry you are going through this right now. How old are your children?

I've asked myself many a time, "What's worse - the seizures or the meds?" The side effects are pretty hard to take sometimes. My worst two were Topamax and Trileptal. I'm on Lamictal now and it isn't a picnic either, but it's better for me than the others so I'm sticking with it.

Sometimes the doctors have to fish around and have you try lots of meds before they find the right one. It's a balance between seizure control and the side effects, and finding the right drug/dose. Be sure to tell your doc how awful you feel, so he can make adjustments if needed.

Going off the meds entirely is a hard decision, with pros and cons. Every time you have a seizure it makes permanent changes in your brain, and makes it more likely you'll have more seizures in the future.

Your first illness could have definitely caused your seizures. The recent illness was a seizure trigger - not necessarily the cause of your seizures. (though it could have been) The trigger added on top of your predisposition to seizures brought one on. That means you may have other triggers. What if you are driving, carrying your baby, or cooking over the stove and you have a seizure? How would that affect you and your children? Most doctors want you seizure free for between 2-5 years before they take you off the meds, to prevent this very thing.

On the other hand, there is an outside chance you could be seizure free for life. Especially if you work to understand what things are triggers for you and avoid them (lack of sleep, blood sugar, etc) If you try going medication-free, call your doctor for instructions on how to do it, then wean off your meds very slowly. Like at half the rate your doctor tells you to. The slower you ramp down, the easier it is on your body and the less likely that it will trigger a seizure.

Will you let us know what you decide, and how you are doing?

 

[RobinN]

Once I learned about seizure thresholds, I understood my daughters seizure disorder better.

Everyone has a seizure threshold. You write about a couple of events that seem to lower your seizure threshold. My daughter also has a birthmark on her brain, which "might" be another reason her threshold is lower. However, she also was 14 when she had her first seizure. Which meant to me that she was seizure free for 14 yrs. I realized I needed to raise her threshold.

She also tends to be affected by reactive hypoglycemia. Most of the time her numbers are fine, but there have been occasions where they have been way far off. She had a glucose tolerance test, which proved my theory that she was having insulin problems.
Monitoring her sugar, refined carb intake has helped a lot. Healing her GI system has also helped. She no longer is on meds and has been seizure free for 6 months.

The medication seemed to make my daughter worse (6 seizures per month) and they tended to through her system way off. So I requested that she no longer be medicated.
My journaling proved that my instincts were correct.

I hope you can see similar results. Managing nutrition has been the most important. It takes months though to see the results.

 

[bangerlm]

the encephalitis is a virus that causes an inflammation of the brain, so it definitely caused the initial seizures and probably/maybe is the source of the finger print on my MRI.

Because of the initial seizures my threshold is probably lower than normal, which might have been why the recent flu triggered the second incident.

However it isn't completely uncommon for people who survive encephalitis to start having seizures 10-20 yrs later and be diagnosed with epilepsy, but of course I am just hoping that it was a random event. But I don't know...

I am not planning on going off the medication immediately, but I have a 1 yr old and a 3 yr old who take a lot of energy and feeling crappy all the time just doesn't seem acceptable especially if I don't know if the recent event was just a coincidence or not.

It seems coincidental that I had done some research into blood sugar before having the seizures, and much of my findings show up here as a way to control seizures. It is also odd that the keppra makes me feel like my blood sugar is always low.

I also really want to know if my freak outs are anxiety attacks caused by the seizure medications or if it is seizure related. So many questions.

 

[Endless]

Oh, my... freak out attacks? You bet Keppra can cause it. People call it "Kepprage," but it included other emotions for me, too.

If your side effects are intolerable, maybe it's time for a new medication.

Your doctor will know what drug would be best for you. For me, I've found Lamictal to mess with my head less than the other drugs. Or at least it messes with my head in ways that are more tolerable to me than the other drugs.

I'm in the middle of ramping up on Lamictal now. It takes a long time - like months. But I seem to have more energy and less brain fuzz than I had on the other drugs.

Hang in there.