New to the board - Feel a bit lost - An introduction

[iboost]

I want to start off saying i'm still learning about this condition that I have and I hope i'm posting this in the right place. I'm not sure if I have epilepsy or if these seizures are caused by something else. For roughly 10 years I've had episodes where i'd have a deja-vu feeling. After that i'd feel like I was in a dream at the same time that I was awake. I could/can feel, smell and hear music and voices, but after I come out of it i can't remember any details and feel extremely tired and confused. I started seeing a neurologist about a year ago and was diagnosed with complex partial seizures. I've had an EEG but it turned out normal. After two other meds had bad side effects, i'm now on Keppra. I also take Zoloft for depression.

Recently my Keppra dosage was tripled to 1500mg. Since then I've noticed my headaches have gotten much worse (Almost blindingly bad). A few days ago I stopped to get gas. I remember putting my card into the pump and seeing 'please wait'. The next thing that I remember is i'm standing there and wondering why the numbers aren't moving. They say $49. I quickly realize that the tank is full. I have no idea how long I was standing there, but I felt dizzy. Embarrassed and confused i hung up the pump, got in my car and pulled into a parking space. Every day after work this past week I've come home and immediately went to bed. I've had minor seizures while at work and often when i sleep this past week.

My mother and I recently moved into a house together, since we are both now single (having a house on your own is difficult and expensive). She seems annoyed with me and said today (Saturday) that she is making a to-do list for me, instead of me just sleeping all day. She knows that I had a terrible headache and have been not feeling well. She also knows of the memory issues and seizures, but I don't think she realizes how much it effects me. She's always had a 'get over it' mentality to others, but when she needs help the world has to come to a halt. I don't want pity, but I want space and understanding. I love her dearly but am not sure how to handle this.

I drive approximately 40 minutes each way to work every day. I'm terrified now of driving but can't afford not to work. I'm thinking back of other lapses in memory and realize that some minor incidents have happened months ago. I work in the IT field and have a ticket system that people report problems in. There are 'tickets' that I've apparently spoken to people about and resolved, but have absolutely no memory of it. I feel like a complete idiot when I'm troubleshooting something and the person tells me how I fixed it weeks ago and that we had a lengthy discussion about it.

As I said, lately when I'm not at work, I'm in bed.

Another odd thing is, I realized a few months ago that one of my cats is always at my side after an 'episode'. If it happens when i'm sleeping, I'll usually wake up to her swatting my face or licking my nose. I'm told that besides a blank stare, I don't show any other symptoms when this is happening so I don't know how she'd know. Also I have days or weeks where I have up to 5 'episodes' a day. During this time she doesn't leave my side while I'm home. I've even had her follow me into the bathroom, or sit by the stove while I made dinner. Normally she is very affectionate but has her own life as most cats do. I feel lately that she's the only one that really understands and cares.

I feel strange calling these 'episodes', seizures. I guess my thought of a seizure was someone falling to the floor shaking and foaming at the mouth. Guess I still have a lot to learn and accept.

I'm sorry if this is long but I don't usually talk about this and I guess laying here at 2am, its finally coming out. A bit confused and scared.

 

[Chaz1]

Hello iboost,

You are most warmly welcomed to CWE forum!

You have been diagnosed with having complex partial seizures yet your doctor did not confirm epilepsy? I would ask him to verify so that you are clear on this matter. Many, many people with epilepsy show no signs of seizure activity on their EEGs. Your episodes are seizures and your neurologist confirmed this.

Some seizure type info
http://en.wikipedia.org/wiki/Seizure_types

http://www.webmd.com/epilepsy/guide/types-of-seizures-their-symptoms

In order to explain to your Mother why there is such a need for all this sleep then you will need to be well informed of both your condition and the potential side effects you are having from the medication, then start to share this information with her (a good book or print out from net and leave on table). You love her dearly and no doubt she feels the same. As a Mother of a Son with epilepsy (he is 26) I never stop researching to understand both the E and its impact on his life, and we always looking for safe alternatives that may help minimize the impact of the heavy meds (they are heavy). Helps keep us all positive and I can be there for him 200%. I can help educate those (partner/family/friends/ anyone who will listen) who do not fully understand the challenges of living with E. Especially if he is vulnerable, like after a seizure.

There is a ton of info on CWE on diet/nutrition, the meds, how we all dealing with the day to day and warm support from a wonderful group of people. Please take time to browse every nook and cranny of CWE, also book recommendations (so important to be informed)

http://www.coping-with-epilepsy.com/forums/f40/

http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

While I understand your job is critical to life. I do have to say, it’s very very dangerous for both you and others if you are driving while having seizures (think of us and our kids/loved ones), did your neurologist not inform you of this? Any alternative until you get your seizures under control?

There are lots of CWE members using Kepra who will no doubt give you some good feedback.

We need each other here at CWE

Chaz

 

[Cint]

Welcome iboost,

I take Keppra- 3000 mgs, a day for seizures and Zoloft for depression. Headaches can be a side effect of keppra as can depression. And those deju-vu feelings of hearing, smelling things sound like an "aura" or warning just before going into a seizure. Also known as a simple complex seizure. I have several types of seizures: complex partial that sometimes go into generalized TC or grand mal, where one falls to the floor and foams at the mouth. Both can be debilitating afterwards, especially if you're having 5 episodes a day. And then there are the side effects of the meds, too, which can be exhausting. So your mother and others need to be educated about epilepsy and what it does to a person's cognitive abilities. We don't just "get over it".

Here is another website with lots of info about seizures, etc:
www.epilepsy.com
http://www.epilepsy.com/EPILEPSY/EPILEPSY_BRAIN

 

[JLogefeil]

I feel the same way, like I can't talk to anyone and for me it's the same thing as you.
I would be careful driving and my mom is the same way, having a to do list and all.
I have days were I want to stay in bed but I can't or feel to guilty for staying in bed.
Days I have seizures I have to push myself and act as normal as I can so no one thinks I m lazy and don't want to help out.
Im sorry your going though all this alone but we at CWE are here for you and by the sounds of things your cat is there for you too. I wish I had my cat but my in laws don't want cats so I have to listen to them. Goo luck keep me posted

 

[Nakamova]

Hi iboost, welcome to CWE!

It's possible that the side effects may go away once your body adjusts to the higher Keppra dose, but if they continue to be problematic, let your neurologist know. You may also want to try taking a B6 supplement -- it can potentially help mitigate some of the side effects. (Keppra interferes with the metabolism of B6).

Best,
Nakamova

 

[rich956]

welcome to CWE

you came to the right place.
I was switched to keppra last year, from Dilantin.and for my Deppression i take Prozac .so sometimes im bouncing off of walls or i feel like im all alone in a cardboard box....

 

[iboost]

thank you i will try the b6 supplement. I find it odd that I'm finding more information on this forum and the internet than was told by my Dr. It seems very common to have fairly severe side effects, so you'd think that my Dr. would warn me instead of saying 'yeah just tripple your dosage and let me know how it goes'.

Glad I found this place, don't feel so alone. Taking off work tomorrow as I've been in bed all weekend and still feel aweful. Boss isn't happy about it, I can tell but I don't know what else to do, i need money.

 

[JLogefeil]

Honestly I don't think your doc will worn you. Sorry I hate to say it but now days doc don't care. But he might

 

[Krista2882]

Welcome to the boards!
I'm sorry you are having a hard time. I think you need to talk to your doctor about the trouble you are having with the Keppra- how it gives you horrible headaches and you feel like you need to sleep all the time. It also sounds like it hasn't really done anything for your seizures. A switch to a different med, or even lowering the dose of the Keppra might help. That's strange that the doctor decided to triple it instead of having you try an extra pill a day. Having too much of a medication in your system could also cause seizures instead of helping them.

Another odd thing is, I realized a few months ago that one of my cats is always at my side after an 'episode'. If it happens when i'm sleeping, I'll usually wake up to her swatting my face or licking my nose.

That's so sweet. Animals can sense a lot of things humans can't. Certain dogs and cats can sense when their humans are having or are about to have a seizure. I saw a TV show once about a lady who had a dog who would start barking like crazy right before she had a seizure. So when she realized her dog was sensing a seizure coming on, she knew to get to a safe place right away so that she wouldn't fall and hurt herself during a seizure.
You have a special cat. Pay attention to when she starts being extra clingy like that. She may be sensing a seizure coming on. You'll be able to sit down somewhere to keep yourself from zoning out when you're cooking and burning yourself or something like that.

 

[iboost]

Just an update for anyone thinking of or taking Keppra. I contacted my doctor yesterday (tuesday) after laying in bed since friday night. The secretary spoke to the Dr. and called me back to say to lower my dosage to 1000mg a day from 1500. I asked about the headaches and dizzyness and was told to take Tylenol. I only took 500mg on monday as I slept most of the day, and took none yesterday. Today i'm back to work and although I still feel slightly dizzy, the headache has settled down to a dull roar (which i can live with for now). I've learned more about my situation from reading posts on this board then i was ever given by my Dr. Today i'm going to try to find time to shop around for a new neurologist.

 

[Nakamova]

Be careful about dropping the Keppra dose too much, too quickly -- that can put you at risk for having a seizure or other withdrawal side effects. It's best to keep at a consistent dose if possible, and make any changes slowly, in small increments. I hope you continue to feel better, and are able to find a great neurologist to help.