Having seizures and not sure why

[rhonda23]

I am new to this site and I am 41 years old. In September I had a seizure and it was a bad one. I bit my lip and woke up on the floor and I do not remember anything that happened that night. Then on December 10th I had another seizure and it was just as bad as the first one and this time I bit through my tongue and my stomach and my legs were sore. During this seizure I stayed in the bed. These seizure are happening while I am sleeping at night and I do not remember anything during these seizures. The last seizure really took a toll on me. My son tells me that since the first seizure I have change a little bit and he is worried about me. I asked him what does he see that is different before I had the seizure and he said that since the seizures I am always tired. I am now taking Levetiracetam 500mg twice a day aka Keppra. I had an EEG done on the 30th of December and see a Neurologist on Jan.17 and have a MRI done in March. If anyone can help please feel free to do so Thanks alot.

[Nakamova]

Hi rhonda23, welcome to CWE!

Being tired could be from the medications (which can have a sedative effect and/or mess with your sleep). It could also be caused by nighttime seizure activity. Even if you aren't having full-blown seizures every night, you could be having smaller seizures that prevent your brain from entering the deepest (and most crucial) phase of sleep. Let your neurologist know how you are feeling, and ask about the possibility of a sleep study to see what's going on. Because fatigue is a big seizure trigger, getting youe sleep issues figured out would be helpful.

Any idea what may have triggered the seizure in September? Sometimes there are secondary triggers -- things like fatigue, stress, infection, food sensitivities, issues with fluctuations in blood sugar or hormones -- that can play a role in pushing you over the edge. If you keep a seizure diary, that can help track seizures, as well as identify triggers that you might be able to avoid. It's also a good way to note any things that might might be medication side effects.

Best,
Nakamova

[RobinN]

Welcome Rhonda,
So very sorry that you are facing these health issues. Extremely puzzling for sure when they hit you out of the blue.
The more you learn about triggers, the more you might be able to understand where and how your seizure threshold was lowered.
I have worked tirelessly over the past 4 yrs, to raise my daughters threshold, and now she is a year seizure free, and remains med free as well.
For me the best thing was a blank calendar (I printed them myself) in a notebook, and kept many notes on anything and everything that might be related. It began to give me clues over time, and I was able to share this with her doctors.
I hope you find CWE to be a great resource and place of support.

[rhonda23]

Thanks Nakamova! I have NO CLUE to what triggered those seizures, but trust me I am trying to take notice into my actions now! I am always stressed and tired thats for sure.

[rhonda23]

Thanks Robin! I am writing down when I have the seizures but as far as clues to what might have triggerd them I have no clue. I do not know what kind of clue to be looking for. They always have been in my sleep so it is hard for me to guess what triggered them. I thought It was a normal day and night on those days that I had them, but guess my body or mind thought otherwise!!!

[valeriedl]

Keppra is a big mood changer. Sometimes people will get really angry when they are on it, keprage is what they call it here.

I take keppra now and I have a good bit of problems dealing with things. Little stupid things will just set me off, things that really wouldn't have mattered before I was put on it. One time I started SCREAMING at my friends 2 year old girl who started to color on my $20 coffee table. I made the poor girl cry like crazy. Luckily my friend and I can make jokes about this now.

My neurologist's assistant increased my keppra in the spring and my husband said that my mood was starting to change even more, I was even noticing it too. I don't know if this is a side effect of it or not, but I started eating a ton more. I've gained around 30lbs since.

I stopped taking the increased dosage almost 3 weeks ago and we've both noticed that I'm acting like my old self again.

[rhonda23]

Thank you for that information. I have really become a mean so called person right now. I guess that I am going to stop taking it for now until I see the neurologist on the 17th. I just lost 10 pounds and I do not need to gain any more weight. I need to loose more weight. So what are your plans about your meds? Are you going to stop taking keppra or try to get on something different? Hope things work out for you!

[Nakamova]

Do not stop taking your Keppra cold turkey!. That can CAUSE a seizure. Best to stay on it until you see the neurologist on the 17th, and then discuss tapering down slowly and/or trying another med.

[Cint]

Rhonda,

As Nakamova said, DO NOT stop taking Keppra or any other anti-epileptic drug cold turkey! Been there, done that years ago and ended up in the ER when I stopped taking Tegretol cold turkey.

Currently, I am taking 3000 mgs. of Keppra along with a low dosage of Topomax and an anti-depressant. I've had complex partial's and tonic clonic's over the years, day & night and they started when I was 22 years old, out of the blue. Most of mine were during "that time of month". Hormonal issues can play a role in seizures, so ask your neurologist.

[rhonda23]

Well I am really mad and mad is not the word I want to use as of right now. My appointment has been moved to Feb 23. If I keep taking my meds I wont have enough to last til Feb. 23. So what happens when I run out of meds.?
Thanks for caring

[rhonda23]

My appointment has been moved till Feb 23. I dont have enough pills to last that long. So what do I do now? Thanks for caring!

[Nakamova]

Contact your neurologist and ask him to call in an additional prescription for you to tide you over. Be a pest until you get a response.

[rhonda23]

I don't know who my neurologist is. This is the first time that I am going their. I am a new patient.

[Cint]

Where did you have the EEG done? Call them and ask which neurologist they referred you to. Or call your primary care dr.

[Nakamova]

If your initial Rx of Keppra was prescribed by an ER doc, try calling the hospital to ask about getting a refill there.

[valeriedl]

My appointment has been moved till Feb 23. I dont have enough pills to last that long. So what do I do now? Thanks for caring!

Alot of times if I'm going to run out of pills before my next appointment I'll call the pharmacy and they'll get intouch with the neurologist who will give me a new pescription. This usually get's done alot faster than calling the actual neurologist.

I don't know if you could try that and it would work or not?

[rhonda23]

I am really going insane right now!

[rhonda23]

To let yall know I stayed on my medicine and going crazy but I will try to make it till I see the doctor!

[Nakamova]

Were you able to get a refill?

If Keppra is still affecting your moods, you might try taking a B6 vitamin as part of a B-complex supplement. That has helped some folks with the "kepprage."

[rhonda23]

No not yet. I have to go to the clinic to see a doctor and I can't get off work in time to see the doctor!