Here I am again

[JeffD]

About 12 years ago I had a couple seizures. Took Tegretol XR for several years until a job loss followed by an insurance lapse which mean not more seizures or neuro visits but luckily I didn't have any more seizures... until last week when I woke up at 2:00 in the morning to have a seizure. Luckily I'm back in an ok position with a job and pretty good insurance...

Anyway, after the seizure went to the ER where they prescribed Tegretol. Got into a Neuro on Friday who switched me to Keppra (750mg twice daily). Last night I woke up again at 1:00 and had several waves of almost-seizures (auras? I'm not sure) so he upped me to 1000mg today.

I hate this. I'm scared to go to bed. I want to sleep and I don't want to feel this way. Don't know what else to say... just sad and scared. Things have been going so well lately, fixing to buy a house and now I'm so afraid this E is going to derail everything. I so hate this.

 

[N Sperlo]

Jeff, my brother. I know exactly how you feel.

Stopped taking my Keppra for a few years. I had complex partials that were controlled by it. Hadn't had a problem in all that time, when one night I woke up to my wife balling and a cop poking me in the chest telling me I had a seizure. The EMTs came in to do their thing and left. I called the doctor. He put me back on it. I had more problems, he raised the dosage, I had more problems, now I'm on Vimpat and we have played with the cocktail until I am more confortable. I'm still fighting drowsyness and dissyness, but I'm doing ok.

I have gone to bed after my wife said I was having what looked like seizures and I shook out of fear for about an hour. Just couldn't settle. I finally got to sleep and didn't have a problem. It helped that my wife was there to comfort me. Knowing that she was there and hearing her voice was a huge help.

There is nothing I can say to make it easier to sleep. Find a way to comfort yourself and sleep will finally take you away.

Sounds like you were having auras aka simple partial seizures. Your body was shutting the seizure down before it had a chance to become something bigger. That's at least how my doctor explains it.

Let your doctor know, but it may just take time for the medicine to get to its full potential. Still keep the doc informed.

I've been there, Jeff. Be strong and hold on. You'll be up in the morning. Good luck getting to sleep.

 

[JeffD]

Thanks for making sense of my message. There are so many more details I wanted to get down but just couldn't seem to put it all together.

My wife's been great. I didn't know her when I had my first seizures, but told her about them before we married. Now this is new for her too. But thank goodness she's here. She's read and learned more about sz's in the last week than I can tolerate. I have so much anxiety about them it's hard to read for long because I start panicking. I haven't been on it that long but the Keppra is shortening my fuse... makes me short tempered with her and the dogs.

My first EEG in 12 years is Friday. The previous diagnosis was something like left temporal lobe epilepsy, but I don't remember all the details. (I don't feel like I remember much of anything anymore) My new neuro suspects the same left temporal lobe issue now.

I read another thread here about piano music helping and just burned some Chopin and Mozart. I don't normally listen to classical/piano but it seems soothing. I've had ringing (more like buzzing) in my ears ever since my first sz all those years ago so listen to music at night to drown that out anyway.

Your message was so important to me tonight. Thank you. I'm going to try this sleep thing again -- I know I need it.

 

[cadsgj]

When you get in for your EEG this Friday, I wish the best for you to get a few good seizures :cheers: I can remember in all the years I have had seizures, the only time I hoped for some good strong ones, it was during EEG. Good Luck.

 

[mejohn1]

Hi Jeff, hope your hanging in there. E sure has the ability to wipe away the best laid plans and I know where you're coming from. I've been dealing with mine for almost 30 years and have never had a concrete diagnosis; EEG's have always been normal, as well as MRI's. I wasn't on meds the bulk of my life and had learned to live with the aura's and partials. I'm lucky, I guess, that mine don't seem as sever as some of the other folks out there, but it's still lead to a few near misses on the highway, on a ladder, etc. A grand mal sent me to the ER earlier this year and that changed everything. I'm currently on short term disability from my employer who said I couldn't return to driving until I fulfill state laws about driving so I now haven't driven since July. My income has dropped by 2/3, lost my home, and am a single dad to boot. Yes, epilepsy can suck the life out of you and almost did me. Careful with the Keppra as it caused me to be a royal jerk for a while but it seems to have leveled out. I know we're not supposed to preach, but prayer is a powerful thing along with a couple of good shoulders to lean on. All my best to you and yours.

 

[N Sperlo]

Jeff, you mentioned being short tempered. That may not only be the stress, but a possible side-effect of Keppra. After being on it for so long, I just found out the other day.

If you want some more modern piano music to listen to, just let me know. Just classical may get a little boring.

I challenge you, Jeff to get the response all my doctors give me. Both my pediatric neurologist and my current neurologist, after reviewing my video EEG, had asked if they could use the data in a lecture they were giving to students. Apparently I'm an interesting subject.

Hope you slept well and I hope to hear from you soon.

 

[N Sperlo]

Also, Jeff, I have been searching for a sillier cylinder head picture, but all I've come up with is the Nissan L28 head.

 

[JeffD]

Well I made it through the night. Woke up several times for unknown reasons and think I had more panic attacks than anything else. But I'm here and I think I actually got a little good sleep too. It took me a long time to get up. I didn't want to move because I felt a little normal and didn't want it to change.

That's the head of an old Lister single cylinder diesel stationary engine. I was searching for something to match my mood and that expression was appropriate. The Nissan looks like it's spitting watermelon seeds or something...

I do think my short fuse is more a result of the Keppra than anything else. I don't remember why my Neuro wanted me on it instead of the Tegretol that worked before, but I think he said something about bone problems? I'll ask my wife. On the plus side (sort of anyway) I haven't been very hungry and have lost like 5 pounds. Not a recommended diet plan, but one bright point.

Thank you John. Monday I went through my paperwork to figure out what my options with disability might be if I need it. It's not something I want to do but I hadn't even thought about it until then. I wanted to be back at work Friday but I still wasn't with the program. I don't know when my head will clear enough for work -- I need to be able to think straight anyway. I told them not to expect me this week either.

cadsgj, yea, I guess I do want 'good seizures'. Hadn't really thought of it that way. I don't think I knew what to expect when I had them so long ago and I'm not sure I even realized I had seizures. Maybe I didn't ask the right questions or was just too young and still indestructible. But now the thought of the hyperventilation test scares the poo out of me.

It was so encouraging to wake up this morning and see everyone's responses. It's got to be the meds because I'm not usually this much of a basket case.

 

[N Sperlo]

"A question that sometimes drives me hazy: am I or are the others crazy?" - Albert Einstin

Jeff, Have you been having dreams? I find that when all is good, I dream. If I'm not dreaming, (not remembering dreams) I need to see the doc.

 

[JeffD]

Occasionally I have dreams but I don't normally remember them. I've tried to remember them before and even kept a log by my bed. (Dream log) But I rarely had anything to write in it.

I'm feeling tired again and yawning like mad. I trying to decide if I should lay down or not...

 

[N Sperlo]

Keppra, man. You're gonna be tired on the 1000 mg horse tablets. I'm on 2000 and they work as good as adderall on a hyperactive four year old. Judging by what you said, my dream theory is no good for you. Works well for me, though.

Take a nap. Their helpful. That's my plan for the afternoon. Then maybe some GTA 5.

 

[JeffD]

Well the nap worked. My evening went fairly well even though I was really down in the dumps. We also called my folks to tell them my sz's had returned. That went about as well as can be expected.

I've been reading about GTA 5 but the hard drive in my 360 died and I've not gotten it fixed. Waiting for either Xbox one or ps4 (can't decide which)

So it's past my bedtime again and there's still some anxiety about going to sleep. I would have gone to bed a couple hours ago without it. One more day... please let me sleep tonight without anymore trouble.

 

[JeffD]

I guess I made it through the night again. Only woke up three times for no apparent reason but was a bit panicky each time. Even got out of bed almost in time to take my Keppra at the right time. Ate a little cereal, but nothing really tastes good anymore. Down another pound today... even after eating a whole piece of chicken for dinner last night. I was so glad about that.

Now I'm exhausted again and ready for a nap. I haven't even been up two hours.

Monday when I called my neuro about Sunday night the nurse asked if I was tolerating the meds well. I said yes, but now I wonder... am I really? I'm a bit depressed, but wouldn't anybody be?

I'm gunna take a nap.

 

[N Sperlo]

Its always depressing to start having problems or in our cases having them again when you thought you were doing well. Lately I have been calling and leaving messages with the assistants if I even think I'm having an issue. Once you have any auras (if you have them) under control, having them is a damn good sign that its time to talk to the doctor. You'll get back to sleeping well, but I'm sure it'll take a little more time. It did for me.