Newbie - I know my name - yet I know not myself

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the2mco

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Never did I ever think at 60 I would be posting my story about Epilepsy. But here I am. Recently diagnosed with Complex Partial Seizures. Last time I saw my neuro he asked how I was to which I replied: "A better question would be - who am I." Brief bio - have been a technical writer/graphic artist/public speaker/trainer's trainer. Writing/speaking came very easy to me - now I struggle finishing a sentence - stutter -

Been having nocturnal seizures along with typical daytime jamais vous episode etc. I also suffer from sleep apnea, sarcoidosis (which might be causing epilepsy), clinical depression and anxiety/panic attacks. Looking for encouragement and understanding.

Lost my license (PA resident) due to seizures and cognitive impairment.

My story is not any better or worse than anyone else, just need to talk to someone going through this too. A man with an experience is never at the mercy with a man with an argument.

Thanks...
Merilynn
 
Welcome to the site Merilynn.

You'll find a lot of great people here, and a lot of help if you need it. We're all here to help eachother!

Chris
 
Hi Merilynn,

Welcome to CWE! This is a great place to get info, vent, talk to people who understand what your going through. My "E" is no where near as bad as what some of the people here have endured, but they all listen and help. Glad you found your way here and that you find the help and hope you are looking for.
 
Hey ho!

How's it going, Merilynn?? Sorry to hear about your E diagnosis, but you HAVE come to a GREAT place for support!!! CWE is the bomb when it comes to getting support, making friends, and finding loads of information. :bigsmile:

The Library and the Kitchen are great for finding information, and the Padded Room is great for venting when you need to--and trust me, we all need to at some time or another.

Have you ever considered diets or neurofeedback to help maintain control of your seizures?? Just something to consider.

Do you keep an E journal? It's a great way to find your triggers, and a terrific way for your doctor to help you. Gotta make them earn their keep, ya know. :bigsmile:

Just wanted to stop by and say hi, and welcome to CWE!

Take care.

Meetz
:rock:
 
Welcome to CWE Merilynn

This is a great place for support. I think we've got people with everything you have except sarcoidosis (at least that I can think of).

Check the place out, make yourself at home & get to know the place.
 
Thanks for your responses

Many thanks to you who have welcomed me. As far as diets are concerned, I have considered a ketogenic (low carb) which is good for my diabetes too. I have not begun a diary, but I will. Every time I go to neuro I write notes because I know I will not remember what to ask.

I am learning more here than I could ever imagine. For those of you with family, significant others, friends etc., do you find them in denial? I am having that issue with my husband. When he had his triple bypass I read as much as I could to try to understand and be supportive but I don't think that he understands. How could he, I don't understand either. Any advice?

Agape
Merilynn
 
Yes, many

significant others are in denial. Even my parents have been in denial STILL, even after more than 40 years. And I was born with it. Go figure.

Immediate family does not get the concept that my massive injuries over the years from my t/c's (tonic clonics) HAVE had MAJOR consequences. And that there IS a lot of pain from those injuries STILL. I don't know if they'll EVER get it, either. *eyeroll*
 
In some way's I"m lucky. I've had epilepsy as a kid but my father was a child psychologist who recognized a seizure right away & had no trouble accepting it.

I don't think either of my parents were in denial but I"m almost 50 years old & only a couple of months ago when visiting my family my mom asked "what do you think you'd be like if you didn't have epilepsy, you probably wouldn't be as cynical, would you?"

That there tells me she may not be in denial but she hasn't fully accepted it yet (probably never will)

Also you might want to check out the list of alternative treatments, there's a few diets to chose from.
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments
 
my mum accepts it, but feels guilty becasue she thinks she gave it to me, seeing as how she has been having seizure like events since she was 20 (my age) and the doctors never listened to her, and she finally now gets to see my neurologist as I was recently diagnosed (not even a month yet)

My dad had no idea what I was talking about when I told him. So I had to explain that I had seizures. He said, that there i no way, he never saw one. I then had to explain that there is more than one kind of seizure (coming from a fire paramedic) he still doesnt get it.
 
My family is accepting, as far as I know. There are a few doctors scattered in the family tree, so maybe that helps. We don't like to talk about illness, so maybe there's a dollop of denial in there too. It's not an issue because we don't talk about it...
 
refinding yourself can be a challenge but give it time.

and yeah there are people going through similar challenges so you are not alone.
I lost my dl because of mine, and because of that I lost my job as a motorcycle mechanic.

but your job doesnt define you, you can move one and you should hear me try to talk when i get flustered or am close to a seizure.
 
Epilepsy and sarcoidoses

Dear all,

I have the other way around: I am 42 and have epilepsy since I am 17. Rigth frontal start and tonic clonic ending. About 3-4 seizures a year. Last year Sarcoidoses was discoverd in my lungs.

Kind regards, Gido
 
I think people are just afraid of epilepsy. I don't think anyone in my extended family knows, but my immediate family are great. Few of my friends know and I only told my employer 3 yrs ago (after working there 4 yrs!).
 
the2mco said:
For those of you with family, significant others, friends etc., do you find them in denial? I am having that issue with my husband. When he had his triple bypass I read as much as I could to try to understand and be supportive but I don't think that he understands. How could he, I don't understand either. Any advice?

Agape
Merilynn
Click to expand...

My mom has basically told me that she will not accept that I have epilepsy. She doesn't ever call them "seizures" they're alway's "problems" or "episodes". She's dragging me off to more specialists for second, third and fourth opinions, even though I have a firm diagnosis of epilepsy.

So yes, the answer is definitely yes.

Welcome to the forum! As Socrates said, "Know thyself." :rock:
 
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