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Tilei

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Hi everyone! I just found your website today and have spent the last several hours reading the threads. WOW! You have a lot of information available that doesn't seem to be freely given at the other E sites. As newly diagnosised with E, I am looking for real information.

So, here's my little story so you all can know where I am coming from. I have been working as an Environmental, Health & Safety Field Tech/Safety Manager for several years. I had gone back to school for my degree after a divorce and the death of both my parents. The year this all happened is when I experienced my first episode. I call it an episode as at that time I had no idea it was a seizure.

Every once in a great while I would have an episode. They never happened during the day or while I was awake. They only seemed to occur in my sleep and when I was under extreme stress. Well, this has gone on for some time now. Several times a year I have my episode that wakes me out of a sound sleep, I wander around the house wondering what day it is, do I have work in the morning, are my parents still alive, etc. Eventually I go back to sleep and wake up in the morning back to normal. Several months ago I had another episode on a weekend. In the morning I got up and saw this black tipped tongue, it didn't hurt really, just looked gross. I stopped by my dentist's office and he said it was trauma and I needed to see a DR. asap.

OK, so I finally go see my primary care physician. He listens to my story and sends me for a MRI, a carotid artery study, and a CAT scan. Several weeks later I get an appointment with a neuro, who promptly puts me on Dilantin. Orders a sleep deprived EEG and some other test for my heart. Within 2 weeks I am having an allergic reaction to the dilantin, can't seem to get a return phone call from the neuro and drag myself to my PCP for further evaluation. PCP gives me a steroid shot and some antihistamines and tells me to stop the dilantin. The neuro takes 4 days to call me back. Needless to say the neuro and staff were fired by the patient.

So, now I am waiting to get in to see another neuro. In the meantime I am investigating all the information I can find on E. My PCP doesn't seem overly concerned about the wait and in fact stated that she felt its such a mild form of E, she didn't need to report it to the DMV. So, with that in mind I admit I am wondering if I need those toxic drugs after all?

This is the first forum I've seen an open and honest discussion regarding alternative therapies, holistic options, and complementary therapies. In fact, this group seems to be open to exploring the cutting edges of what is being studied. All the other forums seem to be scared of open and frank discussion regarding treatment options. They seem scared of a lot of stuff like driving, swimming, horseback riding, hiking etc. I find that kind of talk aggravating to the extreme. E may very well be part of my life, but it is not my life.

The diagnosis of E has already interfered with my work etc. and I am looking for a new job as I type this. :? I feel fortunate that I've been able to do some really cool Field work and have been places most people would freak about(like the middle of a nuclear reactor core). So the job change is expected with having E, I certainly have no right to expect my coworkers to have to pull me out of a core somewhere. It just means I leave the Field aspect of my job to a younger generation.
 
Hi Tilei, welcome to the forum!

My wife, Stacy, has a degree in Industrial Hygiene and also has worked in the EHS field. She quit work so that we could start a family and her former employer has practically begged her to come back several times.

Did you lose a spouse and both parents all in one year? Wow, that must have been tough.

I'm glad this forum struck a chord with you. Let us know what you try and how it works for you.
 
bernard said:
Did you lose a spouse and both parents all in one year? Wow, that must have been tough.

Thanks for the Welcome Bernard. Yes, I am sure Stacey and I could swap stories, is Stacey a CIH?

Yes, I had a very rough year a while back. It was pretty darn ugly at the time. Most of what happened isn't fit for casual conversation, but my father passed away from coronary disease, my mother from ALS (Lou Gehrig's), and the husband didn't die he was just runnin' around with every gal in town! What a year! They say what doesn't kill us makes us stronger.

I got stronger, went back to school, took several adventure trips to boost my confidence and self esteem and moved on with my life. Landed jobs on several projects, paid off the house and car and have been pretty happy since then. There will be a new job in the wings soon, so things will all work itself out.
 
No, Stacy never took the CIH exam although she thought about it. She used to belong to the AIHA. She also used to have a basic EMS certification although she let it lapse as she was not using it for anything.

I'll see if I can encourage her to jump onto the forum this evening when she has some free time. I'm sure she'd like to say hello.

I'm sorry to hear about your folks. Sounds like you are a tough cookie. :cowboy:

Adventure trips hmmm? Anything worth sharing?
 
Mmmmmm......
Fresh meat! :sw:

Welcome Tilei.

Bernard does have a great progressive site, And we have a little fun here too. I have my husband on a few suppliments I read about here and his doctor was impressed with his improved change of health. So much so he ordered prescription suppliments!

Your additude about epilepsy is about so different than most people when they develope it. The world needs more positive people like that, especially in the realm of health issues.
 
My idea of adventure trips are somewhat out of the ordinary. The year in question when I had all those depressing changes, I chose to go white water rafting on the mighty Colorado River through the Grand Canyon. It was wonderful! I went into the Canyon a beaten woman and came out with what seemed like super powers at the time.

Another adventure trip was spending a week in the Rainforests of Belize. That was a great trip from the standpoint of being with the native peoples and learning about their lives. Did you know you can catch minnows with flour in the palm of your hand? Fascinating trip along with visiting the Laminai Ruins.

The third excursion wasn't quite as exciting for me, but it was a gift to my nephew for his graduation from highschool. He had been sooo interested in the Grand Canyon rafting trip, I took him on his own rafting trip. We did the Gauly River in West Virginia along with a few friends. Took some time to do some rock climbing while we were there too. I've climbed in the rock gym, but never off the side of a real mountain. Whoooeeee gave a whole new meaning to mountain view!

The next trip I am trying to put together for next spring to early summer. Its a nature trip up to Glacier Bay. The trip I am looking at is a cruise that doesn’t visit any port cities. Each day you leave the small cruise ship (less than 40 cabins) to explore the wilds. Imagine an entire week bereft of civilization–an entire week devoted to the wildest places of Alaska. The days are spent exploring Alaska by kayak, on foot and small excursion craft. My belief is that a pod of feeding whales, mountain goats perched on the cliffs and birds diving for their supper are sights too important to miss. The route explores the untamed wilderness of Alaska’s Inside Passage. I am still looking for a partner for this trip, although I've done the two previous trips on my own.

Naw, I don't plan for E to get me down. I don't plan on much taking me down to those low places ever again.
 
Those trips sound great. I thoroughly enjoy whitewater rafting myself though I've only done it 3 times - twice on the Pacquare River in Costa Rica and once on a river in Colorado (don't remember the name).

The Colorado rafting trip was a bit intense. A strong storm moved into the area as we were rafting and it had been storming upstream for several hours. The river was raging much faster than normal. Our guides told us that our 20 minute ride usually took closer to an hour! I could not feel my toes afterwards because my feet were completely numbed by the cold.
 
HI from Stacy

Hello Telei,

I have not ever taken the CIH exam. I'm pretty close (2 classes and a thesis) away from my MS in Environmental Science (concentration: Industrial Hygiene)

I've gotten up a couple of mornings wondering where I was... which direction should I go to get to the bathroom, and who's bathroom was it? The house seemed big and strange to me. Not like I'd been here every day for the last 5 years or so. ... hmmm... this MUST be the place the people that live here do the laundry.

I've not been on my Dilantin long, but I hate it already. I feel very lethargic, and very low psycologically. My brain feels like a miscillaneous pile of junk. I long for the days when I was on NO meds, and could drive. I had stress then too. I've found that as long as my sleep patterns are consistent, and I have a goal to work toward, I'm able to handle stress much better, I'm more organized and get more done. I'm going to try and watch a movie with Bern. It was nice meeting you.

Love, Stace
 
Hi Stace,



I've gotten up a couple of mornings wondering where I was... which direction should I go to get to the bathroom, and who's bathroom was it? The house seemed big and strange to me. Not like I'd been here every day for the last 5 years or so. ... hmmm... this MUST be the place the people that live here do the laundry.

Oh yes! That has to be one of the most frightening effects from a seizure. Since my seizures occur so rarely and only wake me up from a sound sleep, I am very discombobulated when they happen. One time last year I had one that scared me quite badly, but not enough to get me to the doctor, yet.

I had been preparing for an important presentation to be given at The First World Congress of Agroforestry 2004 being held in Orlando, Fl. I had been working very closely with the President of the Rwanda Wildlife Club to be able to present their work here in the United States and to the rest of the world. About a week before I was to present their work, my computer crashed and I became very stressed...(well that's not even a fair description--I totally freaked out!). I thought all of my correspondance with the RWC had been lost as the hard drive had to be replaced. The computer people said it would be a few days before they could get a technician out to fix my computer.

A few days later the tech shows up and installs the new hardrive. The harddrive has no programs loaded on it. Now, I don't know about most people, but I bought my computer already programed. The tech tells me he doesn't load the software, he is only there to install the harddrive and leaves! I spend over 12 hours trying to get my computer running, with no luck. Let's just say Award Winning Service isn't in my recommendations any longer. I finally breakdown and take the tower into a computer repair shop. The Technician was wonderful and as he listened to my distress about all my computer troubles and now...failing to be prepared to present the work of the RWC he asks me about my email. I looked at the tech funny and he invited me to log onto a computer at the store, which I did. And lo....my email had 80% of the original files. My old hard drive had the tweaked files, but those were now lost forever. The tech set me up with a rental tower for free and wished me luck at the Congress. So now I have several days to get it all together. Between me, Kinko's, and the rented tower....it all comes together.

The night before the Congress I go to sleep and about 2 in the morning I wake up to immobilization, tingling on my face, muscles doing whatever they want and a few seconds later it is gone. I get up use the bathroom and begin wandering around the house. I see my suitcase and wonder if I am going somewhere or worse did I miss my flight, when is my flight, look at the calender and don't know what day it is...even looking at the calender, log onto the computer to get the right date, cause I don't know what it is! Still staring at my suitcase...am I going somewhere....why can't I recall this...did I die and this is the other plane?

For me that scares me badly, it is a total loss of my place in time. I eventually get tired enough to go back to sleep and in the morning I am perfectly fine. I recall everything I should and I recall the night befores episode. I made a mental note to go see a dr. when I got back from the Congress, but it went to the back burner until this year.

Then in March I had another one and actually drove myself to the hospital at 3 in the morning. :oops: The docs there said I had a TIA. Boy, were the docs wrong!

And most recently I had one in July 2005 before before being diagnosed with E, so I don't know how I will react the next time knowing what is causing the episode. All those times it seems they were brought on by extreme amounts of stress. Again, all at night in my sleep.
 
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