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Old 02-04-2003, 07:32 PM   #1
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Location: Rawson, Ohio, USA
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skynoel1 HB User
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Hi, I am 43 years old and had my first grand mal seizure at an Olive Garden in August 2002. I have had 21 grand mal and an unknown number of nocturnal seizures since. My EEG showed left temporal seizure spikes and two MRI's showed three areas of possible demyelination. I was also Dx with diabetes in June 2002. After one seizure I was unresponsive for one and half hours and have had trouble with left leg weakness and left eye lid weakness since. I have eye spasms and blurred vision, extreme fatique and dizziness at times. My family and friends have noticed short term memory loss. It is so frustrating and scary. I am now on Dilantin 500mg and Zonegran 300mg. Before all this I worked hard for my independence and graduated from my nursing class with a 4.0 GPA and I loved nursing! Now I can't work, I can't even remember if I took my own pills. I understand why the doctors won't let me work, it's to dangerous, I have applied for disablity upon my doctors advise, what a nightmare, I more than meet SSI's criteria (at least one grand mal seizure a month for three months with therapy) but they are still giving me the run around. We need to file bankrupcy but we can't even come up with the money for that. I didn't ask for this and I didn't do this to myself. I have worked all my life and would do anything to get in my car and drive to work! My husband has been great thur all this, he is one of a kind. Our kids are grown and live in Maine and Indiana. I guess I am still in the angry stage! I am so glad I found this message board and there are people like you that understand and listen to us vent! Thank you

 
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Old 02-04-2003, 08:45 PM   #2
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skynoel1 HB User
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thanks Dan, my angiogram was negative and the two MRI's showed three areas of possible demylination (so possible MS). I did contact the Epilepsy Foundation and they do not recommend disability because they do not like to consider it a "disability". I understand that but when your income has been cut in half due to seizures, etc. what do you do? I have nursing experince in ER, detox, hospice and rehab, I hate being on the other side of medicine. I am sorry to hear of your difficulty with work also. One day at a time, some days its one moment at a time!

 
Old 02-05-2003, 02:13 PM   #3
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Lisa T HB User
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Sky, I can really relate with you! My seizures came out of the blue in October of 2001. I'm 29 and have no family history of seizures. I was healthy and energetic, I have to children 4 & 5, working fulltime. My life drastically changed. All my eegs came back normal, along with mris, cats, and anything else they could think of. So they went for the pseudoseizure diagianoses(sp). I went to a therapist who agreed with me, that it was absolutely a medical condition, so back to square one. I was just started on Dilantin in November (I think). They have uped it now to 400mg a day. I'm doing alot better. I have went from having seizures every three days to having them every two weeks. They are also less severe. I was having anywhere from one to twenty in that one lucky day to now having one to three in that two week period. I am still working, but I call off more than I work. My bosses have been absolutely wonderful and understanding. They know how hard this has been on me and they try to make it easier on me there. I am really lucky to have such a great place to work for.

My short term memory and long term have really taken a hit though. I'm like you, can't always remember if i have taken my pills. I'm not sure if its the dilantin or not. I really haven't been on it that long so....it could just be the seizures taking a toll on me.

My husband has been great also! He is my rock!!! Without him i would have crumbled along time ago.

Bankruptcy is a familiar word. My husband lost his job awhile back and with me missing so much work, we simply aren't making it!!! We also can't afford filing, how ironic.

Not that yoou wanted to hear my sob story, but I wanted to let you know that many of us are just like you!!! PLEASE keep in touch with us and let us know how you are doing.

Lisa
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Old 02-05-2003, 03:05 PM   #4
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I am so glad I found this site, it helps so much to hear other peoples stories. I am not alone!! I just came off three months of steriods, I feel like a balloon! But they did help the headaches. Is there anyone else out there that has seizures and also possible MS? Skynoel

 
Old 04-07-2003, 11:26 PM   #5
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Deborah Marie HB User
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On reading your posting from 2/5/03 asking if anyone else has epilepsy & possibly MS - that's me! I'm 40 years old & have been diagnosed with temporal lobe epilepsy x 10 years. Now I'm having new symptoms (tingling, numbness, weakness in extremities, etc..) starting 7/02. I also had an abnormal MRI showing some spots on my brain. My neurologist now thinks I may have MS & am undergoing more testing. I also have Lupus & I've read where MS may be an autoimmune disorder. My seizures are also getting more frequent.

 
Old 04-08-2003, 08:15 AM   #6
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KittyMom HB User
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Sky,

I am with you too! I have yet for them to diagnose(sp) me but I have all of the signs for Complex Partial seizures...and I mean ALL of them. I had this for 9 months and had no idea what was happening. I had just the auras at first. I thought that all of these deja vus were just that...deja vus. They were (are) very frightening. I have them with EXTREEM panic and fear! One man put it, "It is like being in front of an oncoming train with no way of escape". That is how I feel when I get them. Just thinking about them makes me cry. Now they have progressed into these PC seizures. I was at a job interview for a big managment position when I "went out". Not pass out but "the lights are on and no one is home" kind of thing. When I was coming around I found myself walking down the hall with a woman asking me if my headache was better and if they should call my husband to come and get me. I didn't remember a darn thing and I was to embarrased to ask. Needless to say that I didn't get the job. We have just moved here to AZ from NY. We lived in NY for many years (I love that place) and my husbands job was effected by 9/11. He was out of work for a year and 3 months. We came into a little bit of money and we moved out here to be near my very sick mother. The jobs were better out here and my husband found one just 3 weeks ago. I don't know how this E is going to play into me finding a job out here (or anywhere for that matter) but I can't see not working anymore. We are getting close to the bankruptcy(sp) ourselves but I still have a trick or two up my sleeve so we will see if that works.

I too have those darn things (seizures) 3 or 4 times a week with the "aura seizures" (cant remember the name) at least 2 times a day. I feel your frustration and if ever you need someone to talk to this is the right place. http://www.healthboards.com/ubb/gabby.gif

Hope all things turn out the best they can for you and yours.

KittyMom

 
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