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seizure disorder is the worst I HATE IT

Sat, 08/22/2015 - 16:41

Hi, Im ryan and Ive had a siezure disorder since I was 18, Im now 39. It sucks. I was on depakote 2000mg/day til I was 37, and have since switched to keppra at 3000mg/day... and although the meds make me 95% normal..I can drive, its controlled unless I mess up and cause something unfortunate.  However with out the seizures it still kept me from doing any career path I wanted to do. I was going to the Navy to fly jets, nope, sorry kid you have epilepsy, you basically cant do anything fun. No skydiving, no ship captain, no sailing the world, no getting lost on a greyhound bus around america.  Been lost since. People who dont know I have epilepsy just think Im some lazy loser who never got his life together.  

Ive only mananged to wait tables or bartend since I really didnt want to do anything else but fly. Had a brief IT job in the 90s but office life is dull and I really didnt enjoy it, Im active  by nature and cant sit still let alone at a cubicle. Bartending works because the schedule is flexible, the shifts dont start til later in the day, which works out since I sometimes wake up feeling funny. My version of epilepsy only surfaces when I get less thatn 6-7 hours sleep, and or combine that with a night of drinking. Not gonna lie, I drink all the time-- after 5 of course lol. Drs always said dont drink but Ive never noticed anything, except when I wake up with a "what I call sqirrelly, loose feeling" in my shoulders and down my spine..in which case I drink some water, pedialyte and sleep it off; generally a 12-14 hour sleep.  THere have been times where I flew too close to the sun and had to work at noon the next day...resulting the strangest feeling. Actually that happened 2 times and itll hopefully never happen again. Only since being on keppra.

 Id like to try a different drug then Keppra, same low toxicity, but a long half-life like Depakote.

Briefly heres what happened. Had to work early(10 am was early) I knew it but went to a baseball game and out til 3am after that. (I refuse to let my life be controlled by this BS epilipsy.) So anyway, woke up fine, had a 5hr energy like I always used to consume instead of coffee and went to work hoping for the best.  Hahaha well about 1-2pm that day I started feeling very strange. Happened very quickly, and I was well aware, like watching it happen from inside my head......( I compare it to the movie John Malcovich), and unable to do anything about it!!

 Couldnt focus on anything. Someone would order a beer, cocktail anything and Id hear it but was unable to compute it in my head. I remember grabbing a cup and not knowwing what to do next ..like walk over to the tap and pour the beer. I remember I couldnt count money, like I truly for got how to count, but I was completly aware that I needed to count the money, but I just couldnt. I got lost in the store room grabbing supplies. this room is only 5x10, with shelves, I couldnt figure out how to get out of there. No siezures, but this kinda stuff. Someone found me in there and I couldnt explain, they thought I was on drugs and I was sent home.  Later I told them I had epilepsy andmy Dr squared it away..  If Id of done something like this on Depakote, it wouldve been a siezure for sure..since I learned the hard way with Depakote too I confess. Now I dont play around, but I do drink, and just sleep in if I feel squirrelly.

 For me thats the worst part of living with it. Id like to be normal, a normal job where I work at 7 and am done by 4-5, weekends off. In fact Im trying that out now.

Im trying to get out of the hospitality industry. Its not meant for old people. I never thought Id be doing job this past 25, but its been the only way I can consistently be punctual and make any money. Sometimes in the morning I just cant get up yet and need to sleep more. That only flies a few times with a 9-5 and then youre fired.

Ive been applying for jobs that are M-F normal work hours. Im worried I will get a job, and soon be fired since I may not be able to be at work for 7am or whenever it starts.  Often I cannot sleep, and thus cannot function the next day since I may have another expirience like I mentioned earlier. THeres a job I really want and I am worried this may happen, and through no fault of my own Im fired. Im in florida, so I can be let go for any reason.  

As far as work and making any money goes Im running out of options as I age. THe way I see it I have a few choices. Stay in hospitality and be miserable forever since I only make just enough to get by, work in retail and have the same result, or start a business. Im going to try the last option, however the industry I want to get into requres a hard to get business license. Its a simple thing too once you aquire the license. And to get the license you have to work in the industry for 3 years and do some schooling..but thats the easy part.  THIS IS WHY I HATE EPILEPSY.

Im normal and just like anyone else, not handicapped, Im active, I cycle 10-15 miles a day, have a 10 handicap, hell i beat most people I play golf with. 

Sorry Im rambling, almost done, stay with me a bit longer!

I used to live in NH, loved skiing. Was on Depakote at the time. I could always stay up til 2am for example and wake up at 7 am to go skiing. Keppra? Forget about it, however the trade off for me is that Keppra is supposedly better for me longterm, as the Depakote slowly kills your liver.  I dont know, I save the rest for another post in the correct forum.  

Id like to know if my story is similar to anyone else.  

Before you say it, I know Im lucky in the sense that I can at least live a somewhat normal life. Ive read the stories etc about ppl who cant ever move out of their parents house, or even get the most mundane and simple jobs since the epilepsy isnt controllable.

Thank you for reading and Id like to read some feedback.

Have a reat day!

Ryan

 

 

 

 

Comments

Welcome to the clubWhile many

Submitted by just_joe on Sun, 2015-08-23 - 12:58
Welcome to the clubWhile many people complain about the situation they are in they do not think about what they might have that can help them. You wanted to fly and do other things that you wanted to do. You have had seizures since you were 18. OK so you have been having seizures for about 21 years. Tracy has been having them for about 10 years. Well I started having them when I was about 12 diagnosed when I was about 13-14 and now I have been living and dealing with seizures and epilepsy for 50+ years. I never had a drivers license. I couldn't join the military when NAM was going on even tho I wanted to make sure my brother got home safe. That doesn't mean I couldn't do the things others could do. Well I loved climbing the mountain and it was easier an faster to do that rather then walk the 20 mile trip to my uncles house. I could walk the 2 miles to Box Springs mountain and climb over it and walk the other mile in about 2-3 hours. I ran track faster then most of the kids on the track team. They could wax me in sprints but give me a long distance run and I could wax them. I did research to find out the different kinds of epilepsy I had and the different kinds of seizures I had. Back then there were no forums, no computers and very few people around that knew what epilepsy was. Back then people with epilepsy were looked down on more so then today. In the 1960's people with epilepsy were still being put in homes. Out of sight out of mind. In the 1970's there were still some states that wouldn't let people with epilepsy get a marriage license. It takes research and wanting to deal with your issues to come up with many different answers. Tracey actually thought of things she could do and tried them. Ryan from what I read you really gave up on thinking about things you could do. In school I couldn't go in shop. Hey I loved working with wood and metal and could make all kinds of things but schools have regulations and one of them was no epileptics in wood or metal shop. Ever think of what might happen if you were in shop cutting something on a band saw? Wouldn't be a pretty picture. I told them if I can't make it I will draw it. You guessed it I went into drafting. By the time I was a junior in drafting I had gone thru every course the school had and Mr Ebarola  came in with another book.. I found out 2 years later it was the first book in mechanical drafting at RCC So we have come a long way. As for different jobs... Well I have had many. Cooking I worked my way up the ladder and was being trained to be a roving chef when I had the first seizure I had after being seizure free for 3+ years. So much for the cooking industry. I was going to triple my pay and cover 3 states going to different places Sysco Food Management had cafeterias. It seems that getting too hot to fast is a trigger for me. I worked building boats in the glass (fiber glass) shop and was to be moved into the drafting room but a week before the company laid a lot of people off and just kept the ones needed to handle the military project. The boats we hade were hover craft. Could go 35 mph on land and move from land to water with little problem. This is not the boat many people think  of or see with the skids and one prop in the back. It had a prop in the front at an angle pointing down and pone in the back. Those props forced the air down lifting the boat up about 10inches and the one in the back propelled it both forward and backward. Military used in in Nam and the coast guard used then in several states. I was in sales. Telemarketing. Outside sales and with that company I landed in the office managers position. well That went farther since I also managed purchasing and the warehouse. A friend and I ended up buying that office and we owned the business. Since then I have done many different things.   As for meds I have taken almost every med there is on the list. All of them work. I took Depakote for a period of time but it did no more then the other meds I took. Newer meds are better and have less side effects. Keppra has been the best medication I have ever used. It reduced the number of my seizures and shortened the time in those seizures. Now for how I got results. It does help having a good relationship with your neurologist. It also requires you to ask questions. In every visit the neurologists have asked me questions. Are you still having seizures? IS this medication working and reducing the number of seizures? and others. For every question they have asked me I have at least one for them. Is this the best medication for this type of seizure? If it has reduced the number of seizures I have been having is there another medication we can couple with it for get better results? Simple questions which lets the neurologist know you want better results and you want to get more control over your seizures and epilepsy.Hope this helpsJoe

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