I'm Back - though its been so long I may as well be new!

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Rae1889

Veteran
Messages
2,655
Reaction score
9
Points
163
Hey guys!
Long time no talk! its been a while since Ive been on here. I took a break with this forum as things came to a horrible plateau with my seizures. After nearly dying in 2010 (wow that seems so long ago!) I ended up with a lot of anxiety and a lot of depression. Trying to get my seizures under control proved to be really difficult and I ended up shying away from all doctors from about mid 2011 until this month - meaning I weaned myself off my medications and tried to find a natural solution to my seizures (I do not recommend doing this I was just phobic of doctors at that point and needed to do SOMETHING)

I am now happily married to Chad (August 28, 2015!!) and we have talked about starting a family. With this talk also came the talk of getting my seizures controlled. The entire time I was unmedicated I had about 1-2 tonic clonics a month, a complex partial here and there (at worst once a week) and still struggle with daily simple partials.

I set up an appointment with a VERY understanding GP and she referred me urgently to a Neuro. I have been started on Keppra (currently titrating up from 250mg BID to 500mb BID in another 5 days then another increase in a month) Ive been taking the Keppra on time, and 12 hours apart (11am and 11pm) without missing a dose since Friday (thats a pretty big deal lol) and I feel SO tired. Its actually unbelievable how tired I am, and how suddenly foggy I feel. I havent had any partials since yesterday, not sure if thats a conincidence or the meds, as I have had a few days - week where there were no partials I take a Vitamin B complex every morning (100mg) to try to combat the drowsiness but it doesnt hellp.

My question to you is, does this feeling eventually go away once Im on a stable dose, or is this just something I have to get used to with KEppra. I havent been in a drug fog in almost 5 years, and this makes me kind of regret going on meds again.

Missed you guys!
Rae
 
Rae1889

Its good to see you again even if its for the wrong reasons. The feeling may go away once the medication gets back into your system again but as you know a lot has to do with the person and the medication.
 
Good to hear from you again, Rae. And CONGRATULATIONS on you getting married!
I do hope you get those seizures under control. None of us like taking meds because of the miserable side effects, but sometimes it'll save your life in the long run. I've taken 3000 mgs. of Keppra now for over 12 years. Yes initially, I felt so very tired and anxious all the time, but I eventually got better. I do still tire easily. I need to be in bed by 10 p.m. Give it some time. Beware, tho, of the rage impact it could have. If you start having terrible feelings of rage, outspoken anger, let the dr. know ASAP! Those are known side effects of Keppra. Good luck! Hang in there!
 
I have been taking lamictal 600mg for a number of years and recently started with 1000mg of Keppra. It has maxed me moody and tired. From what I have read your side effects are fairly common.
 
Howdy Rae, welcome back!

I remember how awful the docs you saw before were were and hope the latest ones are better.

You might ask your neuro about slowing down your Keppra ramp-up. It can make it easier for the brain to adjust to the med and can potentially help minimize side effects. Once you're at your steady working dose for a bit, the fatigue may diminish (though unfortunately it's a known Keppra side effect). Are you taking the XR (extended release version)? Sometimes folks have fewer side effects with that.

Glad to hear you and Chad tied the knot!
 
Hi Rae, congratulations on your marriage. :clap:

I will be looking for your great poetry. You are so creative.

I am on Keppra and I am having no problems with it. I take the Vitamin B Complex, too.
 
Howdy Rae, welcome back!

I remember how awful the docs you saw before were were and hope the latest ones are better.

You might ask your neuro about slowing down your Keppra ramp-up. It can make it easier for the brain to adjust to the med and can potentially help minimize side effects. Once you're at your steady working dose for a bit, the fatigue may diminish (though unfortunately it's a known Keppra side effect). Are you taking the XR (extended release version)? Sometimes folks have fewer side effects with that.

Glad to hear you and Chad tied the knot!

I didnt know there was an extended release. Im going to look up the pros and cons of that and see. He originally wanted me on Fycompa, but i didnt know enough about it to want to try it right away. so we opted for Keppra. :)
 
There are a few CWE members who are trying Fycompa, if you do decide to go that route. But I hope the keppra works out.
 
Hi Rae, great to hear from you again. Congrats on your marriage. :)

Side effects from AEDs can present strong at first (as you titrate up) and diminish as your blood syrum levels reach equilibrium and your system adjusts/acclimates to it. But the severity of the side effects is felt differently by everyone.
 
Welcome back Rae! I have been on Keppra (generic) since 2006. Luckily, it has been the one and only med. I have taken and has worked well for me. I do not have any rage (would sometimes like to) I do get tired and am in bed by 10 but I get up at 6. So can't really blame it on meds. Like everyone has said, "Everyone of us reacts differently to meds." We just have to figure out what works for us individually.
Good Luck.
M
 
Thanks everyone!
Ive got 3 days left on this dose before I up it again.I sort of feel normal today. slept from Midnight until 10:30am so plenty of sleep. Not looking forward to the increase if I end up feeling how I did the first day I took them.
 
Hello Rae, welcome back and congrats on getting married.
I have not personally taken Keppra. But, I have had unbearable side effects from E meds (mainly zonisamide), gone back and forth with depression and denial related to E, and I am not too trusting of doctors. So... In those respects, I hear you loud and clear. I hope that you find a med that controls your seizures and has side effects that you can deal with.
 
Last edited:
Back
Top Bottom