Just saying hello

[appsandsuch]

Hey all,

I'm new to posting here, though I've been lurking for quite awhile. I can't tell you how much this board has helped me already in the couple of months that I've been poking around it. Hell, sometimes when I feel an aura/anxiety attack coming on, simple reading through some threads can help me feel more in control and stop things from progressing.

In a semi-large nutshell, I'm 27, have had epilepsy since I was 11, but only recently have really been having trouble with it. Whereas, before, my seizures were just an annoyance - something that happened every so often, were easily recoverable from, and the biggest issue was explaining to those around me - over the past couple of years, pre-ictal and ictal fear has come into the picture, and, most recently, seizures presenting as panic attacks. My staple cocktail of Carbatrol and Dilantin stopped being as effective as it had been for about a decade.

I've recently switched Neurologists, and started testing to see if I'm a candidate for surgery. I'm now on Carbatrol, Klonopin, and a small dose of Zonegran (not a fan, as increasing the dosage made me seize more than ever before,) and, hoping to replace Zonegran with Vimpat, which I just started today. I tried a ton of different anti-epileptic drugs as a child, so I'm running out of options there. Neurofeedback is starting to look interesting as well, as my EEG has always been extremely active (I tend to scare the techs.)

My epilepsy has gone from a small part of me to something that is creeping up to the status of defining me. My fear of having seizures is almost as debilitating as the seizures themselves. But basically, there have been a lot of changes regarding my seizures and treatment thereof, so I've been doing a ton of research...it kind of consumes me sometimes...and this board has been quite helpful for that.

So thank you, and maybe I won't be as silent from here on out

Sarah

[shelby126s]

I too know the pain and fear of seizing now. I am only 18, suffered from seizures all my life. Most of the time they would happen every now and then. I had been seizure free for almost 2 years when I had a really bad one. Thanks for posting. Its reassuring to know that someone else is running out of options!! I too have come to a hault in medication, most of them start running me into problems! Im shelby by the way

[skillefer]

Hi Sarah! ( And Shelby!) Welcome to CWE. The one thing I'm going to be kinda strident about is this....DON'T let your seizures define or limit who you are. You are a person who has seizures...not a seizure who happens to be had by a person. Try to think of it as any other medical condition like asthma or diabetes. Treatable.

[shelby126s]

Thats really good advice..wow never really thought of it like that. lol This may sound silly but, that actually helps.

[Nakamova]

Hi Sara, welcome to CWE!

Plus an extra special shout out because you're in Boston. (I wonder if we have the same neurologist?) Zonegran didn't work out for me either, and right now Lamictal is doing the trick. If you find a good neurofeedback practitioner in the area let me know -- I did some superficial searching, and the closest neurofeedback therapists seem to specialize in ADD rather than seizure disorders. I think there's a place out in Northampton that might be worth trying, though.

Best,
Nakamova

[dfwtexas]

Hi and welcome. I know this forum is a godsend for me! I was talking to neurologist today about Vimpat...he is very impressed with it. We are waiting a few months before he will add that to my Keppra.
After I have a seizure..it takes me a few weeks to get back to a good frame of mind...I am almost overcome by the fear after I have one...so know the feeling.
jenn

[appsandsuch]

Thanks for the welcome everyone

Jenn, I know what you mean. I miss the days when the recovery from my tonic clonics would be literally five minutes. I could care less whether or not I had complete control, because a seizure wouldn't be so life-changing. Now, it can be an entire week of me not feeling like myself- sort of in this deep depression - so each seizure really matters/makes a difference. Sometimes I'm so consumed by the idea/fear of having one, it starts impacting my time when I'd otherwise be perfectly fine. I must be driving my boyfriend nuts.

Oh well. I'll figure this out. I can already feel it getting better than it was a few months ago.

Skillefer, I'll make sure to not let epilepsy define me. I used to actually enjoy that there was this piece of me that was somewhat unique, I didn't mind it. Now that it's such a burden, I'd gladly be rid of it and just shave my head and learn a dead language if I felt I needed to be a bit more unique!!

[RobinN]

Hi Sarah - Welcome to CWE
My daughter had done Neurofeedback. We tried meds, but the side effects were completely unacceptable. Seizures increased. We have since found that monitoring her nutrition has helped bring her more in control of the episodes. I highly recommend NFB along with nutritional changes. Made a world of difference and the quality of my daughters life improved.

I am glad that you joined the party. I am sure you will find support here.

[CleptaK]

Hi Sarah, I can relate to the feeling of being defined by epilepsy, rather than it being a small factor in my life.

Just on neurofeedback, I started neurofeedback at the end of November and it has changed my life. [And RobinN and other nfb-ites, without your posts, I would have never ventured into the therapy (I'd read about it for a while but had disimssed it as being a bit futuristic), so thank you so much.]

I'm on 25mg of Seroquel (quetiapine) per day and along with my vitamins (fish oil, b complex) that's all I'm taking - it's a far cry from the 30+ tabs I was on at one stage. My seizures have reduced dramatically and my quality of life has improved tenfold.

I hope that you find something that works for you! Good luck and all the best

[Nakamova]

CleptaK --

I love hearing that Nfb is working for you. I wish that it was covered by insurance here, and that neurologists would support it as an option.

[CleptaK]

Hey Nakamova - it's not covered by insurance here (as far as I'm aware, anyway) - I was really lucky to find a good psych who offers it at $10 a session for people with a concession card/$30 for others, I wish there were more psychs who did that! My neurologist isn't interested in it, but I thought I'd give it a whirl.

I was thinking about buying a nfb system for the longterm - could that maybe be a possibility if there are no providers and the costs are too high?

[Nakamova]

Wow! $10/$30 per session? That's great!

I've read about home systems for nfb. I think the tricky part is getting one with good eeg sensors, and making sure they're properly attached. Plus all the software was Windows-based (and I'm a mac person).