Still successful

[Heavy Kevy]

Had three nocturnal seizures last night. My wife witnessed two. The third I wet the bed again
I did feel a brief wave of mania during the day. I was pulling weed vines that were up in the trees and in the ground. After probably 15 minutes of work I stopped. I was dripping in sweat, winded and surrounded by a pile of vines.
I’m feeling decent today. Especially after having 3 seizures. My surgery in March is still a positive. We were anticipating a 75% reduction. I’ve had the best few months in years.
I had hopes of seizure freedom.
“Success usually comes to those who are too busy to be looking for it.” Henry David Thoreau

 

[gina19]

It is nice to read your update, and I'm glad you're feeling good.

Hopefully it can last for you.

 

[CQ:)]

Sorry to hear about your seizures Kev, hope you’re feeling better.
I had a rough week this week too.

On Monday I had a seizure, only reason I knew was because I was watching something on my iPad and when I came to it was back to the start so during the seizure I must’ve pressed the rewind button

On Wednesday i I worked but had lunch with my best friend, during lunch I had focal seizure. Luckily my best friend was with me as it was at the busy shopping centre. Once I was ok, she took me back to work. Let my supervisor and co worker know what happened then stayed with me until she knew I was ok

Then Thursday I had another focal at work, 1/2 hour after starting. I did get a short aura but when I came too my supervisor told me I had seizure and to stay at my desk. She was worried I’d walk down the stairs and go wandering.
I felt better by yesterday afternoon and was fine today

 

[CQ:)]

Had three nocturnal seizures last night. My wife witnessed two. The third I wet the bed again
I did feel a brief wave of mania during the day. I was pulling weed vines that were up in the trees and in the ground. After probably 15 minutes of work I stopped. I was dripping in sweat, winded and surrounded by a pile of vines.
I’m feeling decent today. Especially after having 3 seizures. My surgery in March is still a positive. We were anticipating a 75% reduction. I’ve had the best few months in years.
I had hopes of seizure freedom.
“Success usually comes to those who are too busy to be looking for it.” Henry David Thoreau

When I had my surgery in 2011 the epiologist told me I’d never be off meds but they were hoping to get me off 2 and onto 1 med. The team also gave me 80% chance the surgery working

When I went 12 months seizure free in 2012 I slowly came off tegretol and stayed on Keppra but it took 12 months before I was completely taken off,
It was a few months after being taken off the Keppra that I started having funny episodes which we eventually found out were focal seizures.

The seizures I have now are still focal (simple / complex) but different to how they were pre surgery

 

[Heavy Kevy]

Thanks
CQ I’m sorry to hear you’re having a rough time as well. I’ll be contacting my neurologist today for the first time in a while. Our last discussion on coming off medication was very short. Basically, no severe side effects, then no changes. I take a frightening amount of medication before bed currently.
I’m curious if he’s going to suggest a different dose for night.
Thanks for sharing, this is a continuing battle.

 

[CQ:)]

Good luck with your neurons

I don't have as many seizures as I used to but when I have one its not unusual for me to have at less 1 or 2 after

Much better then I was. I'm on 3 seizure meds for the epilepsy and topamax for migraines but theyre not high dosages

Because its a clinic my neuro usually tells me how long until he wants to see me. Usually our appts are 4-6 months

I'm sure you're the same but I'm lucky I have such great support.

 

[Heavy Kevy]

Thanks
Yes I do have great support. My doctor is at Mass General and he is very understanding.

My assumption because they have been nocturnal is to adjust my evening dose. I’m already taking Briviact, Lamictal, Zonisamide, and Clobazam (Onfi) before bed. I don’t think we can add any more!!

 

[CQ:)]

My current neuro who has is great added zonegran to the tegretol and Keppra. I think it’s the zonegran that’s helped my seizures. I also take low dose of topamax for migraines.

 

[Sabbo]

Sorry about your seizures. I have simple & complex partial seizures. I also use Zonegran (500mg/day) in addition to that, I'm using 250 mg Xcopri/day. Unfortunately, despite the high doses of the meds I'm on, I still get breakthroughs, but FAR less than before I began Xcopri. Prior to using it, I could have as many as 3 in a day (that I know of). Since then, I have at most 1 or 2 in a month. The major problem is that I have no auras before the complex partials, & have injured myself or put myself in dangerous situations during them.

 

[Heavy Kevy]

Spoke with my Neurologist. The typical, get blood work done, and get another brain scan.

He suggested trying a Valium next time I feel manic. One when I feel it, and one before bed. It will be hard for me to determine. At least he gave me an option to try something different.

 

[CQ:)]

Good luck with the new med and scan

I saw my gp last week just to get updated scripts, referrals etc.
Because I had more than one seizure at a time shes stresses and wants me to have my Keppra increased.

I’m still having lot less seizures then I was.

I’m due to speak to my neuro next month, I’ll mention what the gp wants to do but in the end it’s his decision.
I personally want to speak to him about adjusting my migraine meds as I still get a lot of headaches

 

[Sabbo]

I think I spoke too soon (about my complex partials, that is). This past Wednesday, Oct. 16, I had 2 within hours of each other! I went out with my mother to help her shop for some gifts. I had a severe one on the way there in which I pulled on the seatbelt & actually opened the door while the car was moving--my mom quickly pulled into a parking lot, stopped the car then stood next to me until my seizure ended.

About two hours later, I had another one in the store we were shopping in. It was one where I became totally limp, and literally collapsed. My mom told me the employees thought I needed an ambulance, but she said I'd be fine in a bit.

 

[CQ:)]

I think I spoke too soon (about my complex partials, that is). This past Wednesday, Oct. 16, I had 2 within hours of each other! I went out with my mother to help her shop for some gifts. I had a severe one on the way there in which I pulled on the seatbelt & actually opened the door while the car was moving--my mom quickly pulled into a parking lot, stopped the car then stood next to me until my seizure ended.

About two hours later, I had another one in the store we were shopping in. It was one where I became totally limp, and literally collapsed. My mom told me the employees thought I needed an ambulance, but she said I'd be fine in a bit.

I’m so sorry to hear about your seizures
I think people who aren’t aware of our seizures automatically assume ambulance

I remember years ago when I was volunteering at the op shop I tried to open the car while my boss was still parking it in the car spot. After that if he ever went driving he was very cautious

 

[Heavy Kevy]

Sorry to hear that Sabbo. I’ve attempted getting out of a moving car during a seizure as well. Once I decided to take a nap in the back seat while the car was parked and my family was shopping. When they returned I was in the driver seat sound asleep. I don’t remember switching to the front. Good thing I didn’t have the key probably.

 

[Sabbo]

I have done many strange things during complex partial seizures, then have no way of explaining what happened when I "came to". Other than the numerous times I've burned myself, I know of 2 times that I actually changed my clothes. In one case, before the seizure occurred, I was wearing a nice outfit to go out w/my mom. A short time later, I was in my pajamas! Recently, I was doing some prep work in the kitchen when I apparently had a seizure. When I came out of it, I was still there, but something felt odd. I looked down & noticed that I was wearing different jeans from what I wore after my shower. Those were laying on my bed--during the seizure I took these out of the closet and switched them.