My odd story--thanks for being there

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J.L.S.

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I had my first grand mal when I was 71 years old. I am lucky to have waited so long, but I feel a bit odd and don't have many people that I can talk with about epilepsy, so I am very happy to discover you. Before the GM, I had three lesser seizures that involved flinging myself out of bed (and knocking over heavy night stand and lamp), sideswiping a parked truck, "losing my balance" and hitting the wall really hard, but I was diagnosed with a middle ear infection and then a middle ear disease. After a year of being uncomfortable with the diagnoses, I had a grand mal while I was driving over the crest of a CA hill with a 400 ft drop and discovered I was losing motor control and consciousness. I ricocheted from barrier across two lanes into mountainside with damage only to cars (VERY lucky). But I still didn't get diagnosed until 2 MDs later.
I had viral encephalitis in 1961 (in Detroit, MI), had a fall with a concussion in 1978, and nothing else neurological. After multiple tests, my neurologist (who is very supportive) diagnosed me as epileptic partly because the proportion of healthy brain tissue to old scars changes with age and partly because of my experience of memory deficits following the accident. (I REALLY hate how I feel after a seizure.) I am on medication and have had to increase the dose this year following three "absence" seizures (I am glad to have a name for them.) I am driving again after six months off for the 2nd time (we use a paid driver--a very expensive solution). My husband has Alzheimer's disease and is dependent on me, and I feel very capable again now that it has been ten months since I've had any problem. But I worry that I may be wrong, even though my neurologist thinks I'll be fine. What else besides absence seizures may be in store for me?
 

RobinN

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Wow... now that is the million dollar question.

Welcome JLS
You are lucky that you have found a med that works. We haven't found one yet that we can manage the side effects for my daughter. She is 16 and would love to be able to drive.
Glad to have you with us. I am sure others dealing with driving and AS will be along to join the discussion.
 

speber

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Welcome JLS!.....

Sorry you have to go through this crap! I feel for you and your husband.

To cut to the chase...I have to say if you have reservations about driving---DON'T. I feel you either know something inside on a subconscious level....or you feel fine, but are setting yourself up for a lot of stress about it....which is not good either!

If you can get past that...drive as usual. Believe me I wouldn't be able to pay someone to drive either!

Best of luck
:rock:
 

Bernard

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Hi JLS, welcome to the forum. :hello:

E can take you for a very wild ride. Hopefully, your journey will be much less eventful than the one Stacy (and I) have had over the last decade.
 

Birdbomb

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Welcome JLS

Glad you found us. This really is, IMHO, the best epilepsy site on the internet. All the support you could want and tons of info. People form all walks of life amd many different countries.
 

brain

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:hello: JLS!

Welcome to CWE! Thank you for
sharing your story! You'll find a lot
of folks who're in the same situation
as you are in. Stick around!

 

alivenwell

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Welcome!!! I have been driving for several years after not doing it for over 20 years. I walked everywhere. Fortunately, I live near public transportation (cheaper than today's gas prices!), doctors, grocery stores, a mall and a few other walkable locations. This is a back-up plan if my E ever acts up again.
It sounds like you had a pretty scary experience. It's understandable if you do not want to drive.
It's my personal wish that cars will soon be able to drive themselves to a specific location. Technology is advancing in that direction. We have built-in navigational systems, built-in sensors in the front and back of vehicles, computerized radios....
Then driving will just be another minor issue.
Maybe GM or some major car manufacturers will start this ball rolling(?!)/.
 

RobinN

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Disney made this happen years ago with the People Movers.
Not sure why it didn't catch on
 

alivenwell

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I heard a special on TV that was showing technical advances towards helping a car detect the side of the road. Magnetic strips were tried with some success. I think their last attempt was done with either sounds or infrared or ultraviolet lights. The lights were the most successful. I wonder if this was an extremely expensive experiment.
It could be very useful to people from any disability who do not drive. And the dangerous drivers can be circumvented technically.

This is a description of one of the free patents online:
'A method and system for detecting a target obstacle in front of a vehicle traveling on a road includes a radar positioned at a center of the vehicle for transmitting radar waves ahead of the vehicle for use in determining a first position of the objects in front of the vehicle relative to the radar. A lane position measurement device determines a lateral deviation between the center of the vehicle and a lane boundary of the road. Control logic then determines a curvature of the road based on the lateral deviation, independent of the traveling path of the vehicle. The control logic then determines a second position of the objects based on the curvature of the road and the target obstacle based on the second position of the objects. '

I bet those drug companies have the research and development money to start this type of patent working on roads within the next 5 years. If only they would take their TV commercial money and put it to a really good use. That would really make a difference and they might get more respect!

I went to Disney a few months ago and their automatic futuristic 'Wedway' was not functioning anymore. They are in the process of updating their 'Future world'. I wonder what they have up their sleeves.
 
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J.L.S.

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Hi alivenwell. Thanks for your reply. I live near San Francisco, and I have long wondered why a system similar to the cable cars couldn't be developed on our major highways--a car could lock on to a cable (propulsion force) at an access point, notify the system computer of its destination, and be disconnected from the power source at that point. The car would be driven away (or enter a slower system). It seems to me that a lot of energy could be saved by running cars as if they were parts of a public transit system. The driver would give up all control of his vehicle (except determining his destination) for as long as the vehicle was connected to the power source. There may be a reason that a more sophisticated technology, such as the one you describe, is necessary, but I feel that, for example, a common electric rail running at the side of the highway to which a driver could attach his car, giving up the control of his car when he does so, traveling at a common speed (which would be attained as the car joined the highway) might provide a more easily attained system.
 

RobinN

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I digress a bit here, but it reminds me of our new Whole Foods Store here in Pasadena. It is a two story shopping experience. I put my cart onto a cable system and it carries my cart upstairs as I ride the escalator next to it. Reminds me of Angels Flight.
Quite fun.

I use to live near SF and it sure would make it easier to get across the bridges if there was some kind of cable system like you speak of.
 

J.L.S.

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Thanks for your reply. I'm from California, too--just north a few hundred miles. I don't know enough even to offer this comment, but I do wish very much that your daughter could find a reliable med program. So I'll mention that I am taking both Lamictal (250 mg) and Lyrica (200 mg per day). After the Lamictal dose was increased by 50 mg/day to 250 mg, I am feeling more secure. Do you think that using two meds at the same time might help your daughter? Probably your doctor thought about this long ago. Just wishing I could help.
 

J.L.S.

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Thanks so much for your reply. You are right--I think my problem is regaining my confidence about my behavior, but worrying about it doesn't help. It's a little like getting over an earthquake. I lived in Palo Alto on unstable soil in '89, and for months after the Loma Prieta quake, if my husband rolled over in bed, I got a huge adrenalin rush.
But what I wanted to mention is that I joined this chat group because of your discussion of music. I have always loved Bach and other Baroque composers and had discovered that listening to such music worked better to help me "hang on" than taking ativan. Thanks for pointing out that music does work and for talking about alpha waves, which I'll now go research a little. I am asking for an iPod for Christmas that I can then program and have with me always. Thanks again for sharing.
 

alivenwell

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Maybe that genius who created those tiny hands-free vacuum cleaners that avoid obstacles should start working on bigger things like cars. I like your solution presuming all vehicles using that system are well maintained. Some dude with a flat tire could wreck an entire trip to work and cause everybody to take a vacation day. Hmmm...sounds like a plan...
I bet it all narrows down to building a new infrastructure, better roads, and highly efficient and accurate vehicles.
 

RobinN

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JLS - I was going to suggest an iPod. OOOH I hope you have been good and Santa brings you one. I have one, and love to use it when I paint, but when I have a migrain attack, I want QUIET. I think the conversation about music and brain waves is fascinating.
Speber is the man!

I wish Rebecca could find something that works too. When she was taking Lamictal, I was so positive and yet it caused her such body pain that she said she would rather have the seizure then put up with that pain. So that was out of the question.
Another one caused suicidal thoughts....didn't want to go there.
Vision loss... can't see where that would be considered a good thing
So now.. guess I am fighting the system a bit. Can't blame me for that. I don't want my baby girl to hurt any more.

I am looking at a chart to figure out why she had some seizure free months. There just might be a clue.
I appreciate your kind words and thoughts for Rebecca. That is what makes CWE so special.
 

speber

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iPod is a great idea!.....

But what I wanted to mention is that I joined this chat group because of your discussion of music. I have always loved Bach and other Baroque composers and had discovered that listening to such music worked better to help me "hang on" than taking ativan. Thanks for pointing out that music does work and for talking about alpha waves, which I'll now go research a little. I am asking for an iPod for Christmas that I can then program and have with me always.
J.L.S.!!!.....you made my day!
:banana::rock::piano::brock::bjump:

It always encourages me to keep researching the music\brain connection when I hear stories like yours!

Check out the links in my signature for quick jumps to the latest music\brain stuff.....or start your own and I'll link to it!
:rock:
 
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