I'm new

[dbrim]

Hi! I'm a 26 yo female with absence epilepsy. I probably have 8 or 9 seizures a day and my seizures seem to be pretty resistant to meds, which is a pain in the a** sometimes.
I was diagnosed when I was about 11/12 and my neuro hoped I would grow out of it, no such luck! I'm currently on 400mg lamotrigine a day, and have just had keppra added to this because the lamotrigine stopped working.
I have had a nice long list of side effects from the keppra but am reluctant to change it because it seems to be working.

I have problems at work with them not understanding the concept of anything other than a grand mal being epilepsy.

It's really nice to finally talk to some people who understand.

Xx

 

[N Sperlo]

Ah. Epilepsy? Concerts must suck with all the flashey lights and such.

Welcome, dbrim. Sounds similar to me. Diagnosed at 16 and the seizures would possibly go away around 23. Instead they got worse. I was controlled by Keppra for a long time, but now I'm on Vimpat as well. I have minimal side effects from both. Minimal, but they exist. I have three jobs, but at the full time job, we don't talk about it. Kind of a cliche thing that could cause a problem.

Anyway, back to work. Welcome.

 

[Bernard]

Hi dbrim, welcome to the forum. :hello:

My wife used to have multiple, daily absence seizures too. She had them from childhood into adulthood. She hasn't had one in over a decade now since the first time she used EEG neurofeedback.

 

[dbrim]

Yup those lights really get ya!

Nsperlo same was said for me, I would grow out of it but I just seem to have grown into it. Sounds like the keppra went ok for you long term! I started on epilim, which was great for about 10 years until my dose was up pretty high and I put on loads of weight. Since then it has been terrible depression and panic attacks with a bit of control ( ethosuximide ) no side effects but no control (lamotrigine) and now keppra.... Which is a bit of a roller coaster.

Thanks Bernard. I have had a look into neuro feedback but couldn't find much info for it here in the uk, i will have a look at the link youmentioned in another thread. it seems this would be the next step, as my seizures seem pretty resistant to meds.

I'm sure being here will give me the info I have been looking for!
Thanks for having me

 

[cadsgj]

dbrim, how long did you use the lamotrigine before it stopped working? Or were you taking it while continuing to have seizures pretty much daily? If you still have the seizures and get 8-9 per day, yipes! I've been having average of a couple every two days and I AM NOT thrilled with it at all. But that is after surgery time getting settled to 2-3 average seizures per year (cept one year in last ten was a bad one). Anyhow, I certainly hope you go with the keppra and it clears up your days. Good luck

N Sperlo, you said you use Vimpat now, how long you been taking and what do you think of it? I started taking minimal dose (50mg) Tuesday and within a month will be at 400mg per day... reason I ask is after three days I am not thrilled with minimal dose. Even though they told me I'd have side effects for the first month, I am not excited here.

Benard, I think EEG neurofeedback was explained to me before but am I correct in the assumption it is used to stop the seizures?

 

[jyearta]

I have E. all my life, I'm 61 now. I was not diag. until I was 18 - (long story)

my seizures got worse as I enter my teen years.

My E. is pretty much control with my meds.

I only have a seizure when I have given an antib. or some other meds. like vitamins.

 

[niceguyVZ]

welcome. I also new and i have similar thing. But i don't know yet what i have. But all you guys are great!!!

 

[dbrim]

Casdj - The lamotrigine worked in slowing down my absences for about a month.... ( made my hair shed a lot for first 4 months, then slowed down) after month My seizures got worse again, so first dose increase, then about 2 months later, I was given prednislone for a chest infection, again next day, could barely get through a sentence without an absence and from then the seizures never really stayed controlled and slowly got worse over time, that was the case with epilim too, every few months I had to increase the dose until it got too high to continue on that med.

I used to think I was only having 1-2 absences a day, until a new neuro booked me in for an ambulatory EEG, ( i hadnt had one for 12 years! ) well It turns out it was about 8 or 9 a day!! My EEG was supposed to be a week long, but they took it off after 24 hrs because I had so many.

Thanks, I hope so too, but I hope these side effects wear off soon! The list is as long as my arm!!

Jyarta- I have the same problem with antibiotics etc too. Sucks! Just as you think you have a little control - bam!!!

 

[Lbueno]

Hey dbrim, how are ya? I just joined here as well. Hopefully, the Keppra will do well for you. You said, although you're having side effects from it, it seems to be helping. So, I'm glad for that. What kind of side effects do you have from the Keppra? I've been taking that for a while as well, although, I'm getting weened off of it because it didn't seem to be making any difference for me. As we were getting higher in the dosage, it started to blur my vision for a bit not long after taking it. I'm glad it seems to be helping for you

 

[dbrim]

Lbueno

So a list of my keppra side effects.... None too drastic but combined they are a pain in my ass!!

Slurring
Nausea
Lack of coordination and dizziness
Mind feels slow to process ( mixing up words and can't think of the right word for things... And feeling totally confused
Insanely tired
No interest in food
Headaches and blocked sinuses.
Gums bleeding A LOT!
Nightmares

Happy to say most of them dissipated after the first month but I still feel totally confused and find it difficult to read ( have to do it really slowly) get headaches and have been getting quite a bit of hair loss.

The others come and go as I'm still not up to the right dose yet, but I'm going to stick with it as I'm hoping they will get better over time.

I'm happy to say I didn't get any of the 'kepprage' so many people talk about.


So only a few

Well welcome, I'm still pretty new to the pack. But everyone here is really helpful and supportive.

 

[kirsty1327]

I was on keppra and had the headaches,slow coordination,blurred vision,dizziness,slurred speech,tired all the time and always mixed up my words,plus i was still having seizures but it was the anger issues that finally made me stop taking keppra.
Hopefully some of the side effects go away for you soon

 

[mejohn1]

Hi dbrim, welcome to the site. Here's a snapshot of my experience on Keppra as well:

Slurring YES
Nausea NO
Lack of coordination and dizziness YES
Mind feels slow to process ( mixing up words and can't think of the right word for things... And feeling totally confused YES
Insanely tired YES, YES, YES!
No interest in food YES, EXCEPT DONUTS
Headaches and blocked sinuses. NO
Gums bleeding A LOT! NO, BUT MY TEETH HURT FREQUENTLY
Nightmares NO

Been on 3000 mg/daily of Keppra for 3 or 4 months now, the confused language is the worst. I know what I want to say but I can't seem to form the words. Hasn't stopped the aura's either, have those almost daily and have the occasional small partial. Hope you find some resources here and some comfort for this pain in the butt issue we all share.

 

[dbrim]

See I'm only on 750 mg so far and I am petrified of taking much more, i worry I will end up bald and not being able to form a sentence.

 

[Nakamova]

Hi dbrim, I'd like to add my welcome to the others. I hope you get the right medication combo for seizure control. Keep in mind that if the side effects of any med become problematic or intolerable, then you need to weigh your quality of life against the seizure control. There are many meds out there, so don't hesitate to contact your neuro if what you are on isn't working.

Absence seizures respond well to the Modified Atkins Diet, another treatment option to consider if the meds aren't the answer.

Best,
Nakamova

 

[Lbueno]

Lbueno

So a list of my keppra side effects.... None too drastic but combined they are a pain in my ass!!

Slurring
Nausea
Lack of coordination and dizziness
Mind feels slow to process ( mixing up words and can't think of the right word for things... And feeling totally confused
Insanely tired
No interest in food
Headaches and blocked sinuses.
Gums bleeding A LOT!
Nightmares

Happy to say most of them dissipated after the first month but I still feel totally confused and find it difficult to read ( have to do it really slowly) get headaches and have been getting quite a bit of hair loss.

The others come and go as I'm still not up to the right dose yet, but I'm going to stick with it as I'm hoping they will get better over time.

I'm happy to say I didn't get any of the 'kepprage' so many people talk about.


So only a few

Well welcome, I'm still pretty new to the pack. But everyone here is really helpful and supportive.

How often do you have the lack of coordination and dizziness? For me, the dizziness would begin about 30 minutes after taking the Keppra (along with the other meds I take) and last up to about an hour, give or take. It is quite annoying. Lowering the dose is helping with that, though. I definitely understand about the mind feeling slow. Even writing this, I'm stopping at times and thinking to myself - What's the next word I'm looking for? - That seems to happen quite a bit. I'll be talking with someone and forget some simple word while talking. I would hate having the other side effects you listed - nightmares, bleeding gums, etc. I've never heard of hair loss as a side effect. Personally, I'd get the doc to take me off if I was experiencing that. As you said, also, I'm glad I didn't get the "kepprage".

 

[dbrim]

I have never had a medication I didn't get side effects from so I guess I'll just ride them out for a while.

For about the first hour after taking the keppra I get that feeling , when you have been running on a treadmill and then suddenly stop and the floor feels like its moving? Well I get that for an hour or so and then after that, if I move to quickly I lose my balance really easily and get on / off dizzy spells.
It comes and goes all day, if I move too fast and don't allow my body to catch up I walk into things and trip over, and it's the same with my speech and eyesight, of I try and talk too fast I trip over my words and I have to read really slowly otherwise I can't focus on the words


These are probably the easier symptoms to cope with, I kinda learnt to adapt to them.

It's more the psychological ones I struggle with. Mainly the nightmares on keppra..

I was on ethosuximide a while back and had terrible panic attacks, paranoia and anxiety. I used to think if I went to bed the house would catch fire, I would imagine taking my niece to the park and her getting kidnapped and talking to a friend in the street and her getting hit by a car.
My sister said to me, well you know what's causing it so try and ignore it... I can ignore feeling sick and dizzy from the keppra, but you can't ignore how upset you feel when you imagine bad things happening to the people you love.. That was way worse than what keppra has thrown at me so far, I guess you have to weight up what you can and can't cope with.

 

[dbrim]

Thanks nakamova. I have a dietitian friend whose brains I am going to pick about the modified Atkins. Thanks for the heads up.

 

[Lbueno]

Yeah, when basically everything is spinning and I feel like I'm hammered without the sickness. If I have to read something, I have to get close and really concentrate to see what it says. The psychological side effects would certainly be harder to deal with. I couldn't imagine that. If I started having those, I'd be done in 2 seconds. My doctor talked about the VNS a couple years ago. I said I'd consider it next March or so after trying a couple more different drugs. It's funny.. The thing I'm most afraid of with that is losing my voice. Singing, for me, is very comforting. It kind of helps with stress. When I'm home alone, I'll turn on the music and start singing and it just makes me calm and I feel like I have no worries. If I sucked at singing, it probably wouldn't be a big deal. I don't often speak very highly of myself, but as to singing, I can definitely sing. So, although I told him I'd consider, I'm still leaning like 85% no at the moment. Has your neuro ever brought it up?

Edit: I volunteer at a local hospital going around and talking to patients. I came across one and we got to talking. I found out that she has epilepsy as well. She said, X years ago, she got an epilepsy/seizure dog (one that can detect a seizure coming on). I thought that was interesting. Through all of the posts/stories that I've read through this site, other sites, just here and there, I rarely see anything about those dogs. I've read a lot about them. Some say that they can detect one almost 20 minutes before it comes on. I believe (if I remember right) it's a change in smell that they can detect to let their owner know that, basically, one is on its way. If I was having "big" seizures, I would definitely look into it. I would love to have one. With mine, though, I don't really think one is needed. Since it's an assistance dog, they're allowed everywhere. So, he/she's with the owner almost all of the time.

 

[kirsty1327]

Hi,when I started taking epilim my hair started falling out.my whole house was just covered in hair.
I had to wear my hair up in a ponytail everyday otherwise my clothes would be covered in my blonde hair and I wear heaps of black.
Anyway after maybe 4-6 months it stopped and it's all growing back now (I have sprouts of short hair along my part line!!! Looks ridiculious lol)

 

[dbrim]

Lbueno I've not had vns suggested yet, I think I have a good few years and a few more meds to go through before I would try surgery, if ever. I would definitely try neuro feedback first.

I have heard about seizure dogs, I don't have grand mal so I don't know how effective it would be for me, and touch wood my seizures never progress that far. It is absolute incredible how an animal can sense something that none of us have any awareness of and even before auras start aswell! It's amazing. I did notice during my EEG that despite only have about 8 absences lasting about 10/15 seconds each, the actual spike and wave activity n the data lasted much longer than the actual loss of awareness during the absence, there was also a lot of activity in the data that wasn't full absences, during the whole time. My EEG tech was nice enough to clean up some of the data and send me some copies of the absences and general odd activity. I have them filed away, ready to make some personalised artwork.