Hi

[Uncle Mark]

I was diagnosed when I was 15. I'll be 49 next month. I live in what used to be a small town in Georgia, have been here most of my life. I've been married for 25 years to a wonderful (and patient) woman, have 3 children and 2 grandchildren. I was extremelyfortunate for many years (30+) to have my seizures controlled by Dilantin. In all that time I only had 8-10 TCs. Until recently, I didn't even know what a partial was. I saw my GP every 6 months for a level check, and I was right back to my day-to-day, as 'normal' (it seemed) as my 'non-E' friends. Several months ago, I had the most severe TC I've ever had. Since then, nothing seems to work. I've been to more 'ologists' than I can count, my meds are constantly being shuffled. I have a whole new understanding of what 'normal' is to many people with epilepsy. To be honest, I'm having quite a bit of difficulty wrapping my head around it all. I never needed to research new medicines, or even to fully understand the physiology. 34 years ago, a doctor told me "Take this (Dilantin), and you'll be fine." I did, and I was... but not so much anymore. That's why I'm here. Suddenly, I find myself needing to know much, and knowing very little.

My only brother, three years younger than me, was diagnosed a year before me. He was hell-bent and determined that epilepsy would not 'control his life'. At 18, he wanted nothing more in the world than to join the Army and become a Ranger. It took a lot of hard work (and some string-pulling by some high-ranking officers), but eventually, he did it. The day he got the Black Beret was the proudest moment of his life. While studying at UAB in 1987, he took a job cleaning the campus pool every morning. He didn't tell the family, because he knew how we'd object. One morning he had a grand mal seizure and fell into the pool. There was no one there to save him. His body was found three hours later. He was only 22. I loved him so, and miss him with all my heart.

I'm not telling you his story because I need or want pity. For years afterwards, the devastation of his loss took control of my life. Blaming myself for not magically knowing, anger at him for being so bull-headed, drowning myself in alcohol and drug abuse...been there, done that, burned the t-shirt. I wanted to share it because it taught me two things. First, though epilepsy is a major annoyance to most, and horribly debilitating to some, every small victory counts, and we should all aspire to be Rangers to whatever extent that we can. Secondly, there is a line between aspiration and denial, and epilepsy is a harsh taskmaster if that line is crossed.

I know...I'm preaching to the choir. But thanks for listening anyway.

 

[gigi]

hello

welcome to our forum. Your post made me cry, so sorry for such a huge loss for you and your family. You are right, we can't live in a bubble and still achieve goals, a heartbreak none the less.

My life is similar to yours, as I am almost 54, and had my first seizure at age 11. I am married with two kids and two Grands. My second child was full term stillborn due to E. My seizures, (T/Cs), have been mostly few and far between. I have been on Dilantin for over 30 years, Phenobarb prior to that. I hope you can get some helpful feedback and info from this site. It has been enormous help and consolation for me. There is so much preventive work we can do for ourselves, no longer having to just take meds. like a doctor says. I try to approach my E. from a proactive approach, as opposed to feeling stuck with a diagnosis beyond my control.

Lots of useful advice, and great people on here. Knowledge is power! Let us know how you are doing.

 

[travel bug]

Hello Uncle Mark, and welcome to CWE.

I'm so sorry for your loss and for the toll it has taken on your life. Your story was sad, moving, inspiring, and beautifully written. Thank you for sharing. I hope that sharing your story and helping others may bring some measure of peace.

There are a lot of great people here who are very knowledgeable and supportive; I hope you find the answers you are looking for.

All the best!

 

[qtowngirl]

Welcome Uncle Mark,
Your post made me cry too, that's quite the journey. And thank you for the 'We should all aspire to be Rangers' comment... optimism like that is so precious.
We share similarities in the way of 'some tonic clonics and frequent simple partials with meds that no longer work.' I'm younger, and *HUGS* to you, you've had to deal with this for so much longer, yet the day in-day out is similar (I HATE SIMPLE PARTIALS!)
Earlier this year I had two tonic clonics 7 weeks apart (meds went for s--t) and that's how I ended up here also; am on a few other forums but don't find they are near as good. I'm sure after not so long you'll agree - esp. at midnight or so when you can't sleep as all you're laying there thinking about is your E... E... E. Take care and thanks for sharing.

 

[RobinN]

My daughter had her first seizure at the age of 14. She went on to have 6+ a month while trying out meds. Each med caused a new and exciting (not) type of a seizure. Finally my instincts took over, since conventional medicine was not looking for an answer, only treating the symptoms.

My first original instincts which had been denied by Neuro #1 were hormones, and nutrition.

Now my daughter remains med free and seizure free, while improving both areas of her life. She is not perfect, but it is enough to raise her seizure threshold to the point of no tonic clonics. She suffered over 50 Tonic Clonic seizures during a period of 5 yrs.

By the way... WELCOME Mark.
I am sure you will find this forum to be a source of comfort and great info, as I did during my journey to help my daughter.

 

[Uncle Mark]

Thanks for the warm welcome. I'm sorry that I made some of you cry; that certainly wasn't my intention. I hope at least that you felt better afterwards.

A little more about how I landed here, if you'll indulge me...

In spite of all I said before, stress has never really been an issue for me. I've worked for 12 years as an emergency response dipatcher for a utility company. You want stress? Come and sit at my desk during a power outage. Recently, due to budget cuts, my department has been merged with the water treatment plant, and I'm cross-training to be a plant operator as well. It's one of the most dangerous jobs for a person with epilepsy. There are 16 pools of water at this plant (for filtration and such), some large enough that you could drop your house in and watch it sink. I finally had no choice but to 'come out' to the company. They've been very cooperative in ensuring my safety.

But I think that stress has finally caught up with me.

For thirty years, every seizure I ever had was T/C, and was caused by a combination of sleep deprivation and photosensitivity. (Translation: computer games junkie.) The last one was different. It hit me out of the blue, sitting at my desk (at home), and I seized so hard that I fractured a rib against the chair arm. After a trip to the ER, for days afterwards I had multiple partials. I finally went to my GP. He scheduled an EEG, referred me to a neuro, upped my Dilantin from 400 to 500 mg/day, and gave me a prescription for Ativan. (Yeah...Ativan. 'Hey, this stuff works great!' :roll: )

The neuro said he didn't see anything in the EEG, started me on Keppra (whee!) and scheduled an AEEG. I asked him about Keppra, he spoke highly of it, but said "You may have a little mood swing."

Uh-huh. A 'little' mood swing like a roller-coaster. I figured it would ease up as I adjusted to it. Uh...no.

So I go back to get wired up for the AEEG ("This may be a little hard to get out of your hair...") and carried it around for 4 days. On the next trip back (is it just mine, or can no neuro do two things in one visit?) he tells me that he only saw a little activity (left-brain) on the AEEG. He tells me - I swear this is a direct quote - "Maybe you just freaking out." This may not seem funny to you, but hearing it in his Chinese accent, I thought it was hilarious. Then the roller-coaster went down the hill, and I let loose on him.

"Six months ago, I was told that I have early-stage emphysema and a 'spot on my lung. Two months later, my 68-year-old father was diagnosed with renal cancer and is slogging through chemo. I have a stressful and sometimes dangerous job that I can't quit because I provide the sole income for my family [our youngest children are still in grade school and I can't drive, so my wife is a SAHM]. The only medication that keeps me from having seizures is one that I despise because I know that I'm becoming addicted to it. And I've been telling you and my GP for months that my ears are ringing- constantly - and you keep. ignoring. me. So maybe I am 'freaking out', in which case I need you to tell me how to start unfreaking myself."

He decided that perhaps Keppra wasn't a good fit for me.

I'm halfway through the Lamictal titration kit. Stopped taking Keppra after the first week. The mood swings are gone, but so far the Lamictal/Dilantin combo don't seem to be very effective either. And he keeps giving me scrips for Ativan...because it is effective. I have a feeling that's going to be a high board to dive off of (but it's not like I haven't been up there before).

My apologies for rambling on, but again, thanks for listening. Family and friends mean well in their attentions and their sympathies, but they don't quite 'get it' like you do.

BTW - My Dad had surgery on Tuesday. They removed 20% of one kidney and 100% (they think) of the cancerous mass. His recuperation from the operation has been nothing short of astounding, even to his surgeon. He was released from the hospital on Thursday, and went for his daily walk yesterday. (Didn't go far, but still...)

 

[bazpa]

This is a great place to be. I found it a few months ago, and have gotten the best information and support. I'm sorry for your loss, and what a hard time you are having. It seems most of us are either having a hard time or have been through hard times. That is what makes this place so great-everyone seems to understand. Best of wishes.

 

[huskymom]

Mark,

Welcome to the site! By the way, you are my kinda person!! Life sucks big time when it does, but can be so sweet! You have found a way to deal with your loses and stress in the form of words that are very moving and inspirational. I try to life my life in the same fashion, and use a lot of dark humor to make my way through. Hope to see more of you here!

 

[Nakamova]

Hi Mark, welcome!

I have to agree with your comment "there is a line between aspiration and denial." I negotiate that line whenever I consider tapering off my meds (I have done so unsuccessfully a few times).

I'm currently seizure-free on Lamictal. I hope it does the trick for you once you reach a working dose.

Best,
Nakamova

 

[gigi]

Uncle Mark

Read your second post. What Bazpa says is true, so many of us are in the middle of the storm, or have been through it because of our E.

What a time you are having. So many of us could write books on the great or not so great medical community we deal with. Being pro active with this is so important. Managed care is, well just that. We have to be our own health advocate, and the internet can make us junkies at it!

Glad you found us.:bigsmile:

 

[jyearta]

Hi uncle Mark. I glad you found this site.

I am so sorry for your loss and for all that is going on.

You are so blessed to have the support of your wife.

Like someone had said early the way you put your feelings into words, the pain, disspointment, frustrations was said so touching.

I know that you will find people here that understand a lot of what you are feeling about your E.

I too am a Georgia native also in a small town.

God Bless you.