Introduction and Why I'm Here

[zombelina]

Hi everyone. You can call me zombelina. She's a zombie-ballerina from a cute children's story. Allow me to introduce myself before I start complaining a little bit. I've had epilepsy since childhood (with that small break that some lucky people get in adolescence) and am now in my late 20s. I mostly have simple partial seizures and myoclonic jerks, with the occasional nighttime complex partial seizure. I've had tonic clonics in the past only while off medication.

I joined coping with epilepsy because life has gotten harder recently. I have a really great life. But since my most recent medication change a couple of years ago, I'm having some psychiatric problems in addition to what I would call ADHD-like issues (different from my normal cognitive side effects), and I'm just not me. I was able to lower the dose which has truly helped quite a bit, but I still can't get to where I'd like to be. Lowering the dose also increased my seizures, so the prospect of making more changes makes me nervous.

My loving husband thinks I should "push through it" and "not let the medicine control [me]." He even said if it were him he would try harder to push past it. That comment actually shocked me a little bit and seems quite rude on the surface, but I sort of think maybe I have become complacent. I used to be positive, and I don't feel so positive anymore! Overall, it could be much worse, and I'm so happy to have so many great things and people in my life, but I just don't know where to go from here.

I tried counseling last year and have even done it many years ago and found it helpful, but the woman last year was rude and talked about herself and her struggles and personal beliefs 75% of the time. I guess I was too kind to indulge her and perhaps I became her therapist (ha!), so I left after 3 or 4 sessions. I also have become more paranoid about privacy and who can read or request mental health notes through your insurance, and I don't really understand how that works.

My biggest problems right now are worry and terribly low self-esteem. I guess I am here just needing support from those who understand.
Thanks for allowing me to be a member here!

 

[Ruth]

Hi, Welcome to CWE.

This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout all of the Forums.

Are you lowering the dosage or is the doctor lowering it? You shouldn't lower it without the doctor's knowledge.

Think Positive!! Write down 5 things you can be grateful for each day.

 

[Nakamova]

Hi zombelina, welcome to CWE!

First off,

:hugs:



Epilepsy can make us feel down, but the seizure meds can significantly affect our moods as well. Have you spoken to your neuro about your concerns? He may be able to recommend a med that's a better fit in terms of seizure control and side effects. Aside from that, I think your husband's remark is off base, however well-meant. It doesn't matter how he thinks he would behave under similar circumstances -- unless he's had your seizure history and takes your seizure meds, he's in no position to make that claim. It's great that you've been proactive by seeking counseling in the past. Don't be discouraged by the one bad therapist and consider trying a different one. And there may be other steps you can take. See: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[zombelina]

Thanks, Ruth! Writing down 5 things to be grateful for each day is a wonderful suggestion. I used to have a "gratitude journal," but I misplaced it in a move. Maybe it's time to start a new one. Yes, I lowered the dose under a doctor's supervision.

 

[zombelina]

Nakamova - Thanks so much for the kind welcome. I did speak with the doctor about some of these concerns, and that's when we lowered the dose several months ago. We had also discussed the possibility of discontinuing it and starting a new one, but I already take multiple seizure medications, and I have tried enough of them to know that they all have side effects. I'm sure the time will come to make that switch for one reason or another as my seizures are changing, so I can only hope the side effects will be more tolerable than those I am struggling with now. Thanks for validating my feelings, and thank you for the suggestions.

 

[valeriedl]

Right now I am taking 4 different seizure meds. I've had to change meds and dosages through the years because they weren't helping or I couldn't deal with the side effects. So don't think that the first med that you are going to take could be the right one for you. You aren't alone with all of this.

My grandma had epilepsy and was taking Keppra for it. Keppra is a med that can cause 'Kepprage', making you mad very easy. She was a completely different person, walking around swearing all the time (I think the worse word I'd ever heard her say was poop) and yelling at just about anything. The Keppra was helping with her seizures but she had to go off of it because she couldn't take not being herself.

If your husband knew what it was like having epilepsy and seizures he wouldn't tell you to 'push through it' because it's not going to go away. It's not as though you have a paper cut on your finger that you don't have to take medicine for and just put a band aid on it and are whining about it all the time.

I've gone through several different doctors for other medical problems. It's so frustrating when you have to find one that works for you.

 

[zombelina]

Thanks, Valerie. Yes, I also had a bad experience with Keppra many years ago. I'm glad your grandmother was able to get off of it.