Greetings !

[Westwind]

Hello all,

I've been enjoying and browsing through a few threads on the forum. Since I thought that I might want to post and add my 2 cents to the conversation, I figured that I better get registered on the forum.

To be brief, I was diagnosed with epilepsy after a grand mal seizure in 1978. I've been on eight meds and combinations of meds, and never had full control. I did have a good 10 years remission, with only occasional partial seizures a few times a year, but since last year I'm back to the 2 - 4 complex partials a week with the odd generalized seizure every two or three months.

Life has been quite a ride.

-WW

[epileric]

It's always good to have more people to add their experiences, viewpoints & support here. This site is a great resource for anyone who has an interest in epilepsy.

As far as it having been quite a ride........ all I can say is "Oh Yeah, definitely!"

[Nakamova]

Howdy Westwind, glad you blew in here!

As you've noticed, CWE is a great place to hang out and chat or ask questions or vent... Sorry to hear of your "partial relapse". I hope you can find some answers and support here, as well as offering your own.

Best,
Nakamova

[Miss Choccy]

Hi Westwind,

Welcome to the site. Great to hear you already had a look at it and thus want put in your in. Hoping you enjoy using this site. Hoping you can regain the control you had - only having occassional partials. I also hope that you find support and get all the help you need! I'm sure with your experience with epilepsy who will also be able to support and give advice/info to others - which is great - its a great feeling to know you are helping some one!

Susan

Miss Choccy

[Blondie47]

Westwind

Welcome-- this is a wonderful community for epilepsy support!

Take Care

[Westwind]

Thank you all !

It is definately a good feeling to be able to be of help for others. So I'm happy to share anything I can that might be of help or encouragement. I look forward to getting to know you all better.

As an update: I've just had Lamictal added this week along with the Keppra I was already taking. Started having some problems when the Keppra was maxed out at 2000MG 2x/day. Dropped back to 1500MG and added the Lamictal. My Neurologist is working on getting me a referal to the Center at Swedish Medical in Seattle for a surgery evaluation. *shudders*

On the brighter side, its been nice to lose 20 lbs since getting off the Depakote in February.

[RobinN]

Welcome Westwind - glad you decided to join us. I am sure your experience will be helpful to many.

[Ruth]

Hi Westwind, glad to have you here.

I am glad that you are open about your epilepsy with us. You can support us!!

I would think twice before I had surgery. Get another opinion before you do.

I am on Keppra. The first thing my neurologist told me when he put me on Keppra was to take Vitamin B Complex once a day. Be sure to do that.

Bernard made this forum out of love for his wife Stacy. That love permeates throughout the whole forum.

[Westwind]

I take a multi-vitamin every day, and extra vitamin D during the winter months, but I hadn't heard about adding the vitamin B complex. I'll double check with the neurologist on it. Thanks !

I now have an appointment with an epileptologist in Seattle in a month, to consult and discuss surgery possiblities. That'll give me the 'second opinion' - but they suggested the surgery 15 years ago too. I said 'forget it' that time, and I'm really of the same feeling now. But I didn't go through the evalution process, and I'm think that I might do that this time. It'd be nice to know for sure whether or not I'm a candidate for it....to know if they can localize where the seizures are intiating. Might help the docs better focus the meds too. Though being on my 9th med doesn't give me much hope on that.

Just afraid I'm going to have to go through the disability process...which is a nightmare in itself.

[Ruth]

The disability process is easier than going through surgery. That is just my opinion.

I am 67 years old and I have gone through a lot more that 9 meds. I am on 5, now:
Lamictal, Neurontin, clonazepam, mysoline and Keppra. I cannot remember the generic names.

Doctor's have recommended surgery for me, I say no. Now, I am too old to be a candidate. It is up to you, though. Have you thought of a VNS? I refused that to, but I think it would be easier than brain surgery.

[Westwind]

Yeah, my neurologist has talked to me about VNS too. After thinking, researching and talking we decided to place that 'on the back burner' and she then recommended getting evaluated for surgery (which another neurologist recommended 15 years ago and I said 'forget it'.) From what I can see, the chances of either helping me aren't great, but yes they are better chances than the meds doing any better for me at this point.

But one of the problems for me with the VNS is that I have a bad heart valve and could end up with a pace maker. And you can't have both the VNS and a pace maker, the frequencies can conflict. I think the pace maker would be more critical to have. I'm a bit worried about the 'shortness of breath' with the VNS too, as I also have asthma.

I'm missing 1 - 3 days of work a week now, so it's to the point of either going with surgery or disability.

My neurologist in Seattle told me to apply for disability in '95. I did and was denied. Talked to a lawyer who told me there was no way I would get it - I was too young (34 at the time) and had a college degree so I was out of luck. Appealed it anyway. At least they admitted that I have a 'seizure disorder' on the appeal, but it was still denied. Didn't work for five years, with no income, no support, no health insurance. Wife ran off with a guy from El Salvador, and I nearly lived on the street. Didn't have health insurance again till last year.

Getting tired of falling between the cracks of support.

I find it funny (in a sad way) as the boss tells me I should 'really get a second opinion' when I'm on my 6th neurologist, and decades of seizures. *chuckles*

[Ruth]

If you have a bad heart valve, then you should not have surgery, in my opinion. Surgery would not be good for your shortness of breath either.

See if you can get SSI. If you get less than $2000 a month income, then you are eligible for it. You will have to keep fighting it.

[Westwind]

You're probably right about the surgery risks, but I figured I go through the process and see what's what. Though I have to admit, that sometimes I wonder why I'm bothering wasting the time and money. I don't know that it's a waste, just seems like it.

I have been thinking about finding a lawyer to consult with about filing, but there doesn't seem to be any that handle it around here. Got a few law offices where I've worked on their machines, and might stop by and see if one of them could make a recommendation on who to talk to.

My GP wanted me to get the seizures 'addressed' before sending me off to the cardiologist again. Been thinking about changing GP's though, he kinda freaked out last time I was in to see him. He complained about the list I brought in with me, said 'what do you expect from me!?!'. Medical help, waddya think ? Good grief.

[Ruth]

Ask the Social Security to give you an attorney. You can get one for free and they are good.

Sounds like your GP does not want to do much. Sounds like my GP.

You can go through the process of the surgery and see what is involved.

[Westwind]

BTW, I talked with an SS attorney last week. He said I should try to wait 6 months or more because of my age. Said it would be better if I was 50 by the time they get around to a hearing.

An update otherwise: I started breaking out with a rash (allergic reation) last week, so I was taken off the Lamictal over the weekend. My vision was getting really messed up too. So I'm back to just Keppra 3000MG/day. My neurologist warned me to expect alot more seizures (yeah, one yesterday, two today - mild though), and she'd put me on a sedative till I go to the Epileptologist in Seattle (July 1st) if I want it. But I don't want a sedative if I can manage. *grumbles about yet more meds*

Recently recieved 'advice'.......aka The Chronicle of Opinions....... My ex-wife says I should get a 'LifeAlert' so I can push the button around my neck for help. My mom thinks I should be using a walker with my being more unsteady lately. She's the only one that wants me to 'keep an open mind' about surgery. Everyone else I talk to thinks it's a bad idea. My half-sister thinks I should move in with my parents, so I can have someone around, and I can help look after them. Never mind that I would rarely see my daughter anymore if I did that. She's 8 years old and they're 600 miles away from here. And a friend that has a friend that trains service dogs wants me to help him train seizure dogs. If I liked and understood dogs, that'd be interesting.

Oh, and there also was the one saying that there is an evil spirit over my house keeping me from getting better.....yeah. Can we get over the 'seizures are demon possesion' already ?

[Nakamova]

The "evil spirits" maybe all the well-meaning types around you giving lousy advice...

[Westwind]

*chuckles*

All too true.

[Inaara]

The "evil spirits" maybe all the well-meaning types around you giving lousy advice...

Just about the only one I take any "well meant" advice from anymore who isn't on this forum is my friend who lives here. Since she's a paramedic, her advice tends to be a little bit more sensible than the advice I've gotten in the past, hehe.

[Ruth]

Hello all,

I did have a good 10 years remission, with only occasional partial seizures a few times a year, but since last year I'm back to the 2 - 4 complex partials a week with the odd generalized seizure every two or three months.

That is great that you had a remission. Maybe it will come back again. My sister had a remission for about 40 years. I hope it does for you.

[Aubrey]

My epileptologist also recommended surgery evaluations. At first I was really open to the idea, but finally I just got exasperated with too many inconclusive tests. And too many negative testimonials regarding surgery and my particular type of epilepsy. My doctors kept telling me, we don't want you to feel like a guinea pig....