New Here - Experiences

[Notsure]

Have never been honest with anyone about my seizures/thoughts and experiences, and feel quite alone with this problem. I am going to be 100% honest for the first time just to get it off my chest.

I had my first seizure at the age of 19. It occured after a weekend of partying/drinking/ and recreational drugs. To top it off the night before the first occurence I witnessed a friend almost die while we were both highly intoxicated.

Now for about 1 year prior to my first seizure I was having what I called "Blackouts". I would lose time, forget things that literally just happened. (I was not intoxicated at these times).

I woke up at 7 am on the Monday morning, I felt odd. Was heading out for a smoke and immediatly felt dizzy, nauseous. I began to hallucinate, seeing messed up stuff. I don't remember anything after that, although a family member was there and told me I was convulsing, foaming at the mouth, and clenching. This went on for 10 minutes. At the hospital I had multiple more seizures and did not regain consciousness until 48 hrs later. I still do not remember anything. Obviously I stopped all recreational drugs since, barely drink alcohol anymore also. The seizures continued for about 18 months while I was "testing" out different medications.
- Trileptal
- Dilantin
- Lorazepam

Finally Keppra controlled the seizures and has been for over 4 years now. I thought this was fantastic. Little did I know or realize how I was "changing" very slowly into a person that is now anti-social, anxious, angry, tired, depressed. My family has noticed and tried to tell me multiple times. There has been serious issues with my mood, attitude, and overall interactions with other people. I do not like it, no one likes it.

Until recently I will admit I have been in denial about my Epilepsy and my mood problems and depression, but have come to the realization that enough is enough and I need to change something immediately.

My neurologist now wants me to get off Keppra as soon as possible and onto a new drug for me called "Tegretol". I am very nervous and kind of excited at the same time. Keppra has controlled my seizures for years, but ruined my social and mental health. I am quite succesfull for my age but could be doing alot better. A drivers licence is a necessity for my career. If I go onto Tegretol I will have an increased risk of seizures and in turn my lose my licence and possibly my job, but could go back to the happier person I was.

So this is the huge bind I am currently in.

If possible I'd like to read anyones experiences with Keppra or Tegretol.

Thanks alot for letting me get this off my chest.

 

[epileric]

Welcome Notsure

I've been on Tegretol most of my life & it seems to control my seizures better than any other medication I've tried (which still isn't very good) and seems to cause me less side-effects.

What you have to remember is that everyone reacts differently to all types of medications so even if most people react badly to one, it might be the perfect thing for you.

I know we've discussed Tegretol (carbamazapine) & especially Keppra a lot on this site so I would suggest using the "search" option at the top of the page (3rd from the right) & check out what people have said.

Hope that helps.

 

[bazpa]

When you talk about anti-social-what do you mean? Since my seizure have gotten really bad in the last 4 years, I do not want to go out, and do thing with friends and family. It seemed to get better when I first went on medication. When I was having the seizures, I was just to drained to do anything but go to work, then come home and sleep. Now that I have been on meds for 10 months, I just do not feel like being around people, or talking to them on the phone. I don't know if I am depressed, or this is just another side effect. This is the 6th medicine I have tried. I like the Topomax, because it does not cause me to be so tired, and hungry. They all have caused me to have problems with concentration, and memory. I really just wished that I could feel normal, and have a life again. I don't really feel like doing anything. Since I have shut my business down a month ago, I have done nothing but sit here.

 

[survivor]

Dear! I have never been either on keppra and tegretol, but I am quite familiar with the ways these anti epileptic drugs play with our mind. We really do suffer! But dear its our life and we have to do something about it. All we can do is watch our lifestyle, look for the things which make us feel better (ofcourse not anti social), and have some counselling.

 

[Nakamova]

Hi Notsure, welcome to CWE!

I haven't been on Keppra or Tegretol, so can't comment on that. I'm on Lamictal -- another med you might want to ask your neuro about to see if it's a option. No mood side effects for me on it.

Best,
Nakamova

 

[Cint]

Hi Notsure and welcome,

Sorry to hear of your seizures but good to hear they're under control now. I'm currently taking Keppra and as you said, it can cause mood swings/depression=Kepprage. I've also taken Tegretol in the past, and it lowered my white blood count, so had to be taken off. And as Epileric stated, what works for one, may not work for another. I also had tried Lamictal for seizures. It didn't work for seizures, but it is also a mood stabilizer, and it did help for that.

Here is a link that explains the connection of moods/epilepsy:
http://www.epilepsy.com/epilepsy/social_thinking

 

[skeeter1271]

I have taken tegretol since age 12 and it has controlled my grand mal seizures very well. i am now 39. my new neurologist wants me off of it because of bone loss that it cretes in woman.

she wants me on lamicatal or keppra. I have to be honest too. I am not very social, get mad or angry quickly, have depression and anxiety. I am not the same outgoing person once was.

i am very scared about changing meds as tegretol is like part of my family. i depend on it to do its job and keep me seizure free. reading the warning signs of lamictal and keppra are like reading the warning signs of tegretol. it is an older drug. i am going to have a bone scan to see if there is any bone loss and we will go from there.

if you haven't had children yet it can cause your child to have spina bifida or cleft palate. i have three very healthy children and had to take extra folic acid during my pregnancy.

I am not sure how anyone can be comfortable in changing meds unless they are naturally wealthy and have no medical or financial needs. this is very scary but understand the consequences of staying on it.

good luck to you and hopefully your doc picks the best combination of meds. if it doesn't work just try another until you find the med that will work for you.

 

[grateful7677]

I know how you feel, I think it is the medication, because while I was on Tegretol for years i had mild depression at times, and some socialization issues, but on Keppra, loved socializing, was manic for first 10 months, but had anger outbursts, then suicidal tendencies at that time of the month, then it no longer worked to stop seizures! added zonegran, more anxiety and seizures, then trileptal---no seizures, but DEPRESSION!!!! I think i am going to try sam-E a natural alternative to anti-depressants, as soon as I get okay from dr, this social anxiety and agoraphobia, frozen fear is for the pits!!!! i used to use alcohol to take care of this, but I cant anymore, because i have seizures from withdrawl and/or major depression following a few drinks...((((( Oh, well, at least I am out of my bed today and on the computer! I used to have a job in an elementary school, now I just sit in my house and feel fearful to do ANYTHING!!! i dont trust people, i want to raise my vibration and feel free!!!!!! Any suggestions???????? I know yoga, eating right, meditation all help, but I just want to be me!!!! dont you agree///

 

[Endless]

Hi, Notsure!

On the good side, I'm glad your seizures are under control. On the down side, I'm sorry about your side effects. The meds really can do strange things to our brains - emotional (anxiety, depression, bi-polar, aggression, etc.), physical (dizziness, nausea, and hundreds of other things). Read the posts in here and you'll see many of our members are also on medications for all these problems as well as their AEDs.

It's also worth mentioning that people with epilepsy have a higher rate of anxiety, depression, and some other disorders. So it coiuld be the meds, could be a result of the seizures.

I understand the fear of changing meds. Your doc won't take you off the keppra cold turkey. He'll probably wean you off slowly while you ramp up on the Tegretol at the same time, or most probably get you up on a good dose of Tegretol before weaning you off the keppra.

Different drugs work differently for different people, and have different side effects. The only way to know for sure is to try it. It can also take a few months for side effects to get better, if they are going to do so.

I also understand wanting to keep your driver's license, and not being willing to risk another seizure and losing your licesne. Hard choices.

It would be great if what to do is a cut-and-dried thing, but it's not. Every day we face complex choices about our care, with no guarantees about the results. When we aren't in a place of seizure control and acceptable medication side effects, figuring out wht's going on and all the choices are confusing and scary. I know that saying it doesn't make it feel any better, but maybe helps us have some strength through it.

Whatever your decisions are, we are here to support you.

Will you let us know how you are doing?

 

[grateful7677]

Thank you

I tried the sam-e, not doing too well, more anxiety and depression , psych reccomended effexor, I am extremely frightened to try this!

Thank you for your words

 

[Notsure]

RE: Experiences

First off, thank you too everyone for sharing your thoughts and experiences with Epilepsy and the drugs needed to control it.

I will try to reply to everyone.

EpilEric - thank you for your thoughts I will definetly browse this site for me valuable information.

Bazpa - When I say "Anti-social" I mean I do not want to go out with friends, family or colleagues. I shy away from all social interaction. I prefer to be alone, which is making me very depressed and anxious. I am in the exact same predicament , I only have energy for work then I must go home for sleep.It could be your medication but always good to discuss with your neurologist.

Skeeter1271 - Thank you for sharing. I do know about the side effects of Tegretol which also make me worrysome. Although excited too.

Grateful7677 - I absolutly agree, I think all of us on here would like to be "Normal" in our own heads again. It seems to me that it is our own thoughts driving us insane. Me personally I have decided to take action and change my anti-social ways, and you can do the same. It will not be easy what so ever, but definetly worth it (I Hope).

Endless - Thank you for your thoughtfull comment and concerns. Your name is very true it is "Endless" lol. I have begun to wean myself off of the Keppra and onto the Tegretol. So far no seizures, and I do feel a bit happier. I am still in the transition stage but will keep you updated.

On a side note, I extremely appreciate the fact that there are others out there that can sympathize/understand with what I am going through. The general public seems to think that Epilepsy isn't anything serious, they are SO wrong. I am confident that I would be so much more productive/happier and social if I did not have Epilepsy.

Good mental health to us all.

 

[bazpa]

I find it so odd that I have been so very social until the seizures got so out of control. I don't know if I have just gotten used to wanting to be alone, something has changed in my brain, or I am just tired of people gossiping. Half the time, I don't even answer the phone. Sad huh?

 

[Notsure]

RE: Experiences

"Survivor" asked me some further questions in a personal msg and asked if I'm comfortable posting this publicly. I am, so here you go.

Again thank you to everyone for spending the time to take interest and reply. I think this may be a useful resource for me as I try to get better.

------------------------------------------------------------------------
Hi! Thanks for the interest in my situation. I have no problem sharing if it can help me with my issues.
Some problems I have experienced:

- Not wanting to socialize with people
- Anger towards the General public for stupid reasons
- The need to be alone
- Depression from being alone
- I act irrational to the people that matter the most (Family, Friends)
- I have grown so anti-social/depressed that I have not have a relationship in 4 years. (this really bugs me)

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[Notsure]

Bazpa - You are not alone on this one. Everyone seems to annoy me for years now. I hate gossip and/or small talk. I prefer to be alone, but this is NOT the way to a better mental health. I only realized this recently after destroying countless friendships and burning a thousand bridges. Best of luck to you and try to stay positive (I know how hard that is from experience, but still try).

 

[Blue Cat]

Notsure - you are so not alone, your initial experience down this road is pretty much the same as mine. I know some have Keppra problems, it's an add on for me and no problems but primary is Lamictal like Nakamova, and it's been fine, as far as I know. No one has pointed out anything different and I still feel like me. I hope it all goes smoothly for you - I know how scary the possibility of license loss is when the career is going well. Keep letting us know how it's going, and glad so far the transition is sounding smooth.

 

[momof3boys]

I was on Keppra and Carbatrol (another form of Tegrotal) for over 12 years. Just this march, I had my very first VEEG and was taken off the Carbatrol because if youre on it for a long time, it can cause problems with your bone marrow. But while I was on it, it really did help with my seizures. Once I got off, I noticed I did lose about 20lbs. Ive been off of it for 6 months now. Going from two medications to one, has really made me have alot more energy and feel better.

But I saw you posted about possibly getting on Tegrotal and I wanted to share my experience with you.