New to the board (and concerned)

[NicholasOkuley]

I've been lurking and finally decided to register. Firstly, let me say I think what you have setup is fantastic, so thank you!

I had a tonic clonic in February of '06. I went and had an EEG + cat scan + MRI, which showed I was "prone to have seizures", but apparently wasn't anything too serious. My neurologist put me on Tegretol-XR. It worked fine. I stopped taking it around 6 months later (because I am an idiot). I had another tonic clonic shortly thereafter, in August. I got back on the Tegretol, and felt better. I ran out of my medicine again last week, and didn't have it for 4 days. I had another tonic clonic on 01/10. Since then, the medicine has been effecting me quite differently, and it has me concerned.

My memory is SHOT. Gone. I feel depressed, and am having horrible anger/mood swings/irritation. I can't concentrate on work, and all day today have been having (what seem to be) absence/myoclonic seizures one after the other almost. I'm new to all of this, so I don't know what to do or ask? My neurologist hasn't even diagnosed me with epilepsy.

I have another appointment tomorrow at 1:30 to check levels in my blood from the Tegretol, but I'd REALLY like to switch drugs because I don't feel okay. At all.

Anyone been there? Any advice? Things I can ask or say to make sure the neurologist understands how I feel? I have a tendency to get there and then say everything is fine, or not be able to explain how I feel because of the anxiety I feel in the office.

Thanks in advance. Sorry for the long ramble.

[Bernard]

Hi Nicholas, welcome to the forum.

I'm glad you decided to "de-lurk" and register.

I'd suggest jotting down some notes on paper of the most important issues you would like to discuss with your doctor so you won't forget when it's "go time".

You might ask the doc about the "seizure control diets" (see chart linked in my signature), CBT or EEG neurofeedback, but I suspect the doc only knows about drugs and the VNS as options.

[NicholasOkuley]

Thanks much! I'll be sure to look at those links, and good idea on the list of things to talk about -- heck, I practically live my life off of lists right now due to the memory, so I'm surprised I didn't think of that, hah!

I'm feeling a bit more calm the past few minutes, and haven't had any "space outs" in around 10-15, so hopefully things upstairs are calming down.

I'll let you know how tomorrow goes! I'm slightly concerned because he's a Neurologist, hasn't diagnosed me with any type of epilepsy, and it's not an epilepsy treatment center (but there is one in that building). I just hope he actually cares, *sigh

Thanks again

[Birdbomb]

Welcome Nicholas

Taking medication and keeping the levels consistant in the blood is VERY imporant. Never take yourself off your meds without consulting your doctor. Many of these meds must be weaned off because they will cause rebound seizures to have the levels suddenly drop.

Hope you are feeling better. This place is great for information and support.

[RobinN]

Welcome Nicholas - Glad that you decided to join us.
I hope you get back into a better balance real soon.

[skillefer]

Welcome Nicholas! This forum has some really super people, that are really nice. But then, I'm sure you know that, since you've been lurking in the shadows.

As for memory loss, I feel your pain. My memory is horrible. So my hubby goes to my doctor appointments with me. That way, he remembers what I needed to ask, as well as what the doctor says. I totally agree with Bernard. Take notes, and keep a list of questions. Also, BB was quite right about rebound seizures. So even though you may not like meds, don't just quit taking them. My neurologist is fantastic. So don't just assume that just because it's a neurologist that he's going to be a less than great doc. Ok?

[NicholasOkuley]

Thanks everyone! After meeting with the neurologist, he decided to switch meds. I'm going to ween off of the Tegretol-XR and onto Keppra.

I've heard scary things about Keppra side effects, but am hoping I am lucky enough to not come across any major ones.

Time to search the board for people currently on Keppra to see what they think.