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My new life for almost 10 years.

Sun, 03/31/2019 - 02:27
Hey everyone. My name is Ally. I will give you a little bit of my story, because I need some opinions. I am 22, on April 20th I will have had epilepsy for 9 years, being diagnosed when I was only 13. I have only had about 9 seizures my whole life, leveling out to about one a year but only due to my medication. One day when I was younger I accidentally missed one dose and ended up having a seizure that night. So my medicine pretty much controls me. Whenever I gain a little bit of weight I have one as well, so I have to work at maintaining my weight. I am actually on 4500mg of Keppra ER a day. My new doctor told me I was on too high of a dose so next seizure I have she wants to add some new medication on top of Keppra. I am sure a lot of you know that epilepsy medication is definitely not cheap. I have been trying everything I can to not have one. Every morning I wake up with a pounding headache and at least once a week I have staring spells which my doctor confirmed was indeed a seizure but mainly I have grand mal seizures, full blown shaking and loss of consciousness, falling to the ground. One day I was actually laying on my side when I had one, loosening the capsule around my shoulder causing me to get shoulder rehabilitation surgery in 2014. To this day though my shoulder "pops" as I call it and dislocates but slides back into place. It still causes quite a bit of pain, only lasting about 30 minutes but it happens like 4 or 5 times a week. I may actually have to get another surgery later this year, not sure yet. It was so bad that at one point when I just raised my hand it dislocated and one of my doctors said she had never seen anything this bad. I also have had scoliosis since I was about 10, getting surgery in 2011 at 14 and again in 2015 at only 18 and possibly another one as well. My back is always in constant pain, at least once every few months it has a spasm that keeps me in bed for at least 3 or so days. I have been told with all this I should go on disability and I have been considering it. I was always one to like to work for my money, even got my CNA (which has been my dream since I was a kid,) and have been trying out some assisted living facilities around me but that's not even working. I just want to live a happy life in as little pain as possible. I am actually very nervous to apply for disability with the fear of getting rejected. I was just wondering what other peoples thoughts were? I do not know much about disability and reading online I found different qualifications for epilepsy and disability. Thank you so much for reading this, ~Ally

Comments

 Hi, I'm 24. Currently

Submitted by Misjoey101 on Wed, 2019-04-03 - 19:32
 Hi, I'm 24. Currently unemployed and just struggling to find a job. (everything seems to need a DL) Where do you live? If you are in CA, CA has a state Department of Rehabilitation which would help you apply for Social Secuirty/Disability benefits. 

Do try for disability. It's

Submitted by Snoller101 on Fri, 2019-04-05 - 16:49
Do try for disability. It's worth a try and you should be able to get it. You are on a lot of Keppra. The highest dose I've ever been on is 3,000 and I thought that was the highest they ever gave. See what she wants to put you on, maybe a lower dose of Keppra will help how you feel. I'm no doctor but I like Lamictal. I was on Keppra and Lamictal for years and the seizure control was great. I had to go off the Keppra because it was making me really angry so I switched to a new one call Briviact. That and Lamictal have been great. Briviact is expensive though.

I take 4,500 keppra , 1,800

Submitted by johnlp on Fri, 2019-05-24 - 21:46
I take 4,500 keppra , 1,800 oxcarsipine , and 500 vimpat. I still have 12-16 seizures a month even with RNS. I get disablity and like you would rather work. I worked my whole life before epilipsey. So I would definitely try to get it. Now on that meds. amount I'm also 260 lbs. was 240 when epilipsey came out thinks meds. caused some weight gain plus in not as active as I was.

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