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Happy New Year all!!!

I am new to this site, just registered a week or two ago and this is my first post.

I am also new to Epilepsy...

I am a 44 year old single male, that has just been diagnosed with Epilepsy this past October after having a tonic - clonic seizure in mid October. I was having partial seizures for a month or two before that and didn't realize that was what it was, but was getting very worried about it.

I am still having several partial seizures every day and am very worried that it can't be controlled. I have had a few episodes of clusters of partial seizures that went on for hours...

I'm considering getting a second opinion. I live in northern New Jersey; can anyone recommend a top notch neurologist in the New York / New Jersey area? It would be extremely appreciated!!!

Thanks,
 
Hi Bri, welcome to CWE, and Happy New Year!

I developed epilepsy in my mid-30s -- I know that adjusting to the diagnosis can take some time. Are you on meds? Are you looking for a second opinion because the meds don't seem to be working, or because you'd like a different approach to treatment?

There are alternative/complementary approaches to reducing or controlling seizures (such as neurofeedback and special diets) that folks here have had success with. You can search for more info on those topics using the "Search" tab at the top. If you do see a new neurologist, it would be a plus if he was open to considering those alternatives.

I'm in the Boston area, so can't help with a neuro recommendation, but I know there are other folks on CWE who might have some tips.

Best,
Nakamova
 
Thanks Nakamova,

I am currently on meds, they are constantly changing because nothing has really gotten my seizures under control yet. I am considering a second opinion because I really feel I shouldn't count entirely on one doctor. I've had several family members and friends suggest the same thing.
 
Hi Bri! Welcome to CWE! I think that you'll find that this is a fantastic place for support. Feel free to ask questions,vent,etc. Try keeping a journal. You might find that you have some definite things that trigger your seizures. Things like diet, stress, lack of sleep, etc. a whole list of things to track is in the library.
 
Hi Bri, welcome!!

I have had epilepsy for 60 years. A lot of times I have been on the medicine merry-go-round. I know how you feel.

This is a great place. It was started by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.
 
Thanks all for your advice and posting links...

I find this site both very helpful but also depressing because I read about so many people who are fighting this aweful condition for years without beating it and feel I may be just at the beginning of this battle for the remainder of my life.

I've had eight partial seizures today so far, and feel dopey the rest of the time. i hope there is some way out of this...
 
Hi bri,

I am sorry if I made you feel depressed. I have a positive attitude towards my epilepsy. I hope you will develop the same feeling. My epilepsy is a part of me. When I was diagnosed at 6 years of age, I told everyone about it. Everyone knows I have epilepsy and that it is a part of me.

There are worse things like cancer.
 
Sorry Ruth, I didn't mean you. I just meant in general. I am still trying to cope with this, and hopefully some day get it under control, while holding my job...

But you are absolutely right, there are worse things to deal with.

thanks for your support...
 
Bri --

Since this site offers a place to vent and discuss problems, it may skew the impression of epilepsy towards the more frustrating aspects. But plenty of folks are coping with the disorder and coping well. I may be one of the lucky ones, but I definitely feel that I control the epilepsy and not the other way around. There is nothing I can't do as long as I remember to take the meds.

Best,
Nakamova
 
Thanks Nakamova,

I really hope some day I can truly say that I can control the Epilepsy and not the other way around. Thanks for the inspiration...
 
Hi Bri

You do not have to be sorry. I like what Nakamova said. She said the best way of dealing with our epilepsy. Something, I need to remember.
 
I can

understand how you feel, Bri. E is not an easy disorder to wrap your head around (sorry, no pun intended there). But, with some effort, and even some changes in lifestyle, quite a few E patients can have a great life. AND be healthy in the process, too!!!
 
Hi bri and welcome. This second thing I would like to say is that each one of us is entitled to own ones own pain. This was spoken to me by a woman who survived the Holocaust. Imagine that. It's something which I'll never forget and it was a great source of relief for me to hear this. I hurt. And "this" belongs to me. One should never have to say that there are worse things in the world in reply to a "buck up". We have Epilespy and it's not pretty.

I'm not that much older than you and was diagnosed with Temporal Lobe Epilepsy two years ago after my first Tonic Clonic seizure. I asked my doctor "Why so late in life?" He explained to me that I might have been having forms of seizures my entire life. We discussed Simple Partial and Absent Seizures and frankly it all makes sense to me now.

I live on Long Island, New York. If you wish to PM me I'd glady give you my neurologist's number and address. He's very good. You have to book him months in advance. And we're on the North Shore so you can always visit the sound. Long Island isn't entirely miles and miles of concete as some suppose!

Hang in there. You've come to a lively, loving, informative group. Peace...
 
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Bri Hi and welcome.

I live in NY Upstate, use to live in NYC.
I'm sorry to hear about your seizures, I know how they are.

Just wanted to welcome you :)

Billy.
 
I try to remind myself "It could be worse."
I am a 26 year old male and I was diagnosed 2.5 years ago.
Was a bit to accept at first. and I am still working on it.

but it is possible to work throughm and thanks for joining
 
Hi! Welcome to CWE! This is such a great forum with a lot of support 24 hrs a day, 7 days a week.

Epilepsy is SO tricky to manage. One missed dose, one drink of beer, lack of sleep....StReSS....and boom, a seizure occurs. Kindling can happen then. It takes a while to prevent the next seizure once one starts a vicious cycle.

I have had complete seizure control for over 11 years and it's an awesome freedom. It was not always that way and I know exactly how you feel. For me, personally, I always take brand name only meds with no skipping or generic substitutions. And, I set my cell phone alarm to sound off when it's time for the next dose. Most importantly, for me, is stress management and weight management. I obtained a fun mutt 8 years ago and we do a 2 mile walk every night or do a fun play session indoors. She's a bright dog and if she thinks I'll slack off from the walk or fun, she whines and inflicts guilt.
I did start out the walking slowly. In extreme cold weather like now, I've been going to a gym. But, we still need that mental stimulation of a good play session.
 
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Thanks alivenwell, and thanks for your input and experience. The more I hear about other people's experiences managing this condition, the more confident I feel moving forword attempting to get ahold of it. This forum has really helped me this weekend.

Maybe this forum combined with different meds and different doctors will make 2010 a better year!

I appreciate your support...

Thanks!
 
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