Just Need Friends who understand

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Chiyo
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 7/22/2009 6:00 PM (GMT -7)   
Hello everyone i am new to this site.
I am 30 years old i had my first seizure when i was 7 years old due to a high fever (febral seizure) anyways i have been seizure free since then. On December 13th 2008 i had a Grand-Mal (Tonic-Clonic) Seizure while my kids and husband and i were on the lake fishing from boats anyways i flipped out of the boat and thank GOD my husband wass there he saved me from drowning and called 911 he knew what was happening to me because my father had epilepsy also and in 1999 he died from a grand mal seizure he had every kind of seizure known to man. I feel so alone in my world anymore i sometimes wish that my dad was still here i now know how he felt his whole life the loneliness and strange feelings, i wish i had him to talk to and ask questions to him but at the same time i am glad he never knew i developed epilepsy now he would have blammed himself. Anyways i would love to have someone to talk to about some things i go through now in life i always feel like an idiot anymore when i cant say what i want to say even when i know how i just get stuck it feels like just like writting this now i had to ask my husband what a high fever seizure was called and he looked at me funny cause i was the one who taught him what it was a febral seizure anyways thats what i am talking about i feel like an idiot. I just need people who understand and let me know what you think i think maybe i am having speach arrest seizure's and this happens almost everyday now!! I am on Keppra 1500MG twice daily so 3000MG daily and still have this happen to me. Im lost at what to do i really dont want my dose upped again. I did however switched from Keppra name brand to the generic because my neurologist forgot to put on my prescription that i needed the name brand so my insurance kicked it back so i have been taking the generic for about 3 months now so maybe thats why who knows please someone help me and just be there for me so i dont feel so lost anymore.
Chiyo
 
 

Boomer14
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/22/2009 6:43 PM (GMT -7)   
Hi Chiyo,
I'm 32 years old, and I don't know what I would do without my husband. I had my first seizure when I was 13 years old, and always had petit male or speach episodes where I humm or giggle for 30 - 40 seconds, and I can still see everything, but I just can't talk. 1 year 1/2 ago I had another GM seizure, and now have them 2 - 3 times a month.
I'm on 500MG twice daily so 1000 mg of Keppra, and it's not working. I got put on 10 mg of clobazam as well, but only take it when I'm not feeling 100%, which is my decision, which is not easy.
I understand your frustrations, and how lost you feel, I'm right there with you! I am searching for the right doctor for me who wants me to be seizure free, and explain everything too me, I have a hard time getting answers. I'm going tomorrow hoping to get something.

Chiyo
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 7/22/2009 7:56 PM (GMT -7)   
Thanks for your reply and i hope all goes well at the doc tommorow for you i pray for you and that you can get the answers you need and the right doctor as well. I thankfully have a great Neurologist. I should probably make an appt. with him soon though since i think i am having the speach arrest episodes./ I am also thankful for my husband i too would be lost without him he has saved my life in the past from drug abuse and then he saved my life that day in the lake he is truly my hero i love him so much i couldnt do it without him, he is also a disabled veteran who fought for our country so to me he is my very own special hero in alot of ways, god sent him to me and for that i am thankful. Thank you for being there for me i truly appreciate it.
My best regards
Chiyo from Troup Texas

bell73
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/18/2009 2:55 PM (GMT -7)   
chiyo,
i'm 35 and have had seizures since i was 11. i've been on almost every med for seizures and only depakote has made a difference. i still have seizures, but not as frequently. i have a lot of memory and speech problems when having and right after having seizures. i'm frustrated with the medication, too. i take so much depakote that my hands shake constantly and i lost a bunch of hair (fortunately it grew back). the seizures are getting more frequent and stronger as i get older. i think it might be hormonal - i've had some symptoms of early menopause. my neurologist sent me to an epilepsy specialist who thinks i might be a good candidate for surgery. i'm considering it.

anyway, you are definitely not alone.
bell73

bluecreamsherry
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/25/2009 5:15 AM (GMT -7)   
Hi hope you are doing fine I was looking at the message board and saw your note let me tell you about me we have alot of things that alike I started my seizures at 8 and I have a very loving husband 6 years ago I had a seizure with no aura it was the frist time I had done this and I was driving at the time well I flipped my jeep and my right leg was crushed the vns does not work on me so after the wreck I had it taken out I started getting ready for brain surgery I had it 1 1/2 years ago I have been looking to for friends also to talk to about things like seizures and how they make me feal so if you need a ear or a shoulder you can always talk with me I have gone through all of the meds on market angie

bluecreamsherry
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/25/2009 5:23 AM (GMT -7)   
I have found out that I passed on this craziness on to my daughter she will be 18 next week and the doctors now want to go in and do what they did to me so I no how the felling you can get can make you fell right now I have the felling that I have caused my baby girl to have seizures because of my gens

blade1968
New Member


Date Joined Oct 2009
Total Posts : 1
   Posted 10/7/2009 8:44 AM (GMT -7)   
I'm 40 and I had my first attack two months ago my left arm is still sore I passed out next to the canal if my dad wasn't there I could have gone in. I have jut been to the hospital to see the so called specialist I was told I may be Diabetic but have been tested 3-4 times before and the test came back fine the reason she said this is I felt like I did when I had my fit while in Blackpool all dizzy and disoriented as soon as I had a mars bar I felt fine no pain no headache no nothing has this happened to any one else .
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