Just found this site and wanted to say Hi

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!

Messages
15
Reaction score
0
Points
0
Hi everyone,
I just found this site (wished I had years ago :) and wanted to say hello. I began having TC seizures out of the blue 12 years ago while I was in grad school. A number of drs were never able to figure out a cause, but fortunately I have very good control with medication. I actually seem to have more problems with the medications than with the seizures themselves. Since I've been on zonegran (400 mg/day) for the past 2-3 years, I've noticed (as have friends, family and co-workers) that my moods swing like a pendulum from highs to low for no rhyme or reason, that I'm always extremely tired, have no energy, not interested in anything anymore, apathetic, irritable, easily confused, and have difficulty concentrating and remembering things. I feel like I've been in a fog for so long and just want myself back. I've told both my PCP and neurologist about this, and neither seemed that concerned, but these symptoms are disconcerting to me, since they are not like the usual me. Has anyone else felt this way on zonegran? Maybe it's not the zonegran, but when I was on tegretol and depakote before the zonegran, I didn't feel like this, and was doing things I love like hiking, biking and skiing. Now, I have no interest in doing anything. What has been bothering me more is that I've also noticed that these symptoms have been increasing over the past couple weeks, since Keppra (1000mg/day) has been added to my daily routine. I have a follow-up with my neurologist in a couple weeks, but wondered if anyone else experienced these types of medication side-effects? Or whether I just need to be more patient through this Keppra-zonegran adjustment time? But after a couple years, my patience is pretty thin, and I just want to get back to myself again. Thanks for reading.
 
This sounds VERY familiar. As much as it sucks to admit, you might want to consider bi-polar. The symptoms you are having are classic bi-polar and sound exactly like my experiences.

Bi-polar seems to be related in some way in my opinion. You will find many people on here that suffer from both.

the fact that you had relief of some of these symptoms on depakote is another sign as i believe this is also prescribed for BP ( I could be wrong on this). I take Lamictal which is prescribed for both epilepsy and bi-polar.

Good Luck!!

John
 
Hi kayaker! Welcome to CWE. :) I've never taken zonegran, but several people here who take Keppra have reported mood swings. Some found that vitamin supplementation helped.....I'd definitely talk with your doc.
 
Skilly's right.

Keppra's FAMOUS for causing mood swings. I believe it's B6 that is used to help calm things down........I might be wrong though, as I have never used it.

DO talk to your doctor though about what's going on. And if they're not going to listen, well then, it's time to find someone that WILL. You deserve better than that. Whether or not you have bipolar and E, or the symptoms that you have right now that sound like bipolar are being caused by your AED's, your docs NEED to listen, and help you through it.

YOU PAY YOUR DOCTOR'S SALARY. THEY WORK FOR YOU.

Good luck. We'll be thinking of you.

Meetz
:rock:
 
Hello Kayaker4157,
Welcome to the group, and there are a bunch great people here,
Always feel free ask anything.
I've had E since I was 2 T/C absence,simple parial, complex partial.
and Atonic.
Your lucky have good control with meds,I 'm not so lucky oh well.
I've been on every drug you've mentioned and a lot more never controlled.
I take Tegretol,Clonazepam, and Topamax.
Belinda:e::woot:
 
Welcome -
Glad you found this forum. A lot of medications used for E are also used for bi-polar and I think that is what can start causing mood swings. If you search "prescribing information for zonegran" and then for Keppra, you will get all the information you need about the drug. This gives you all the clinical testing information that lists every side effect. Even the ones that only affect a few people. I was having problems with my granddaughter on Lamictal and my doc thn said it was not the drug. I did the research and found out that in a very small percentage of people, it caused behavior chages. I finally found a doctor that would listen and when we reduced her dose, her behavior got better.
 
:hello: Kayak!

I was on Keppra and Zonegran, and unfortunately
Keppra wasn't the right AED for
me, however, my Epileptologist at that time didn't
inform me of any B vitamin supplements to take
alongside with it - which could have made a difference,
and that, we will never know the answer.

So like Meetz had posted, please do have a discussion
with your Neurologist about this. And welcome to CWE!

:)
 
Thank you all for your responses. This site is really a great inspiration and I'm so glad to have found it.
 
Hi ~ I think I've taken just about all the meds and I've done quite well on them (well, if you don't count continuing to have seizures).

Even Keppra -- I did just fine on Keppra -- no mood swings or anything.

Zonegran? Vile, nasty, hateful, filthy, disgusting stuff. It did not cause mood swings for me. It didn't cause me any sort of swings .... that's because I simply slept until I had enough strength to stumble to the couch where I sat and stared until bed time. Every few days I would take a shower.
 
Welcome to CWE!!

Never taken zonegran, but am taking Keppra...for my sins!! Mood swings are very pronounced with Keppra.

I take B6 and find that it helps, it doesn't stop them, but it helps. Worth a try - but be careful with the dose, maybe check it over with your doc, as B6 has it's own side-effects!!

Hope you find something that will help.

All the best, and welcome again
 
Hi Kayaker

Welcome to this wonderful place! I am sure you will get all the help and support you need from this fantastic bunch of people!

I can so relate to what you've said about mood swings with the Keppra, I've been on it for a few years now, and I was quite disconcerted to see that it can cause depression, mood swings, and wait for it...suicidal tendancies!! I haven't felt like jumping in front of a train or anything since I've been on it, but I have very big highs and lows, I've just had my second lot of brain surgery, so having half my head shaved peed me off a bit! Never mind, it is growing back!!

Talk to your specialists about your feelings, I can actually e.mail my professor if I have any worries or concerns, he is totally wonderful, and always replies, also, having just finished two university courses in Epilepsy Care & Management, I have a lot of books at home about the drugs and their side effects, so it is worth reading up on what does what and with which side effects, I just decided when I was diagnosed that I wanted to know as much as I could about what pills I was popping!

I hope you enjoy your time here at CWE, it's definately been a great support to me, and we all simply understand each other! I wish like you, that I'd found it years ago!

Love

Elaine x
 
Back
Top Bottom