I Was getting Better now I'm Getting Worse

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Hello,

This post is mostly so I can just vent. I had epilepsy for about a year now. I was getting better after being put on Kreppa and Zonamide. I was only had simple partial seizures and they weren't that strong, after having partial complex that turned into generalized. Most of the time I was the only one aware I was having them. Unfortunately during my last visit to my doc, I pointed out my simple seizures started getting stronger, and sometimes people at my work are aware something is wrong with me because I have problems standing with my legs trembling and my speech is messed up before and after (well more than normal). She was told me to stop driving, even though legally I was allowed to in my state (I waited my acquired time and plus and knew the law) and changed my meds (Taking me off Kreppa and putting on something new I have to learn to pronounce). Right now I still on the full doses of the two old meds and half dose of the new one because is takes so long to build it up in the system. I thought I might be okay for a while at least with all the meds in my system but I had a pretty bad simple seizure the other day. The doc is worried I may become immune to my meds eventually. If these don't work I will be scheduled for a sleep EEG. I worried they won't find anything. I mean to took me forever even to get someone to give me a prescription for Kreppa after several trips to the hospital. One hospital even let me go without checking to see if someone was coming to get me even though they had witnesses that it was a seizure (and that was the second trip to a hospital in a week) and I told them I didn't know what was going on. Sorry this is long. I just worried and right now my parents are my support and I really don't want to worry them anymore then they are. A lot of people vacated their friendships with me when they found out I wasn't going to be "cured."

Comments

yES I KNOW WHAT THIS IS LIKE,

Submitted by Anonymous on Fri, 2014-12-05 - 12:40

yES I KNOW WHAT THIS IS LIKE, I STARTED HAVING SEIZURES AT 40, NO KNOWN REASON, A NUMBER OF MEDS DID'NT WORK, I HAD SURGERY AND I WAS GOOD FOR 5 YEARS AND THEN THEY CAME BACK WORSE THEN BEFORE. i HAD TO TAPDANCE AROUND PEOPLE AT WORK BECAUSE THEY KNEW ABOUT THE SEIZURES AND THE SIDE EFFECTS OF THE MEDICATIONS CAUSED ME MEMORY PROBLEMS, I COULD'NT REMEMBER THE NAMES OF THE PEOPLE I WORKED WITH. 3 YEARS AGO THE SEIZURES CAME BACK, WORSE THAN BEFORE, WHEN I WAS IN THE HOSPITAL BED THEY TOLD ME LATER THAT I KEPT TELLING THEM TO PLEAS LET ME DIE, I CANT GO THROUGH THIS AGAIN. TWO MONTHS AGO I HAD A SEIZUE WHICH LASTED 45MIN AND THE INTERBATED ME. NOW I'M SCHEDULED FOR A SECOND SURGERY. WHEN I WAS IN THE HOSPITAL ONCE THEY TIED ME TO THE BED. ANOTHER TIME WHEN THEY FOUND ME MY KIDNEYS SHUT DOWN AND I WAS ON DIALYSIS FOR A WEEK. AND ONCE A FAMILY MEMBER ACCUSED ME OF HAVING SEIZURES ON PURPOSE. I KNOW HOW DIFFICULT IT IS TO GET EMOTIONAL SUPPORT, BUT YOUR PARENTS PROBABLY CARE MORE THAN YOU KNOW. THOUGH I DON'T KNOW IF PEOPLE WHO DONT HAVE SEIZURES CAN UNDERSTAND. ITS SO CRAZY, WHEN ONE MED DOES'T WORK THEY JUST KEEP RAISING IT, I WAS ON KEPPRA UP AND UP AND UP TILL THEY GAVE UP AND STARTED ME ON VIMPAT AND THEN UP AND UP AND UP BEYOND THE MAX DOSE, THEY SAID DONT WORRY. YOU HAVE THE OPTION TO SAY NO TO YOUR DOCTOR IF SIDE EFFECTS ARE BAD. I STARTEED TO HAVE A TREMOR IN MY LEFT HAND FROM THE LIMITAL AND TERRIBLE ARTITIC PAIN DUE TO DIALANTIN, WHEN THE NEUROLOGIST AT THE HOSPITAL WANTED ME TO TAKE DIALANTIN AGAIN I REFUSED AND HAD TO FIGHT WITH HIM UNTIL I CALLED MY DOCTOR AT NYU AND HE AGREED. TRY TO SEE OF THERE'S AN EPILESPY HOSPITAL CLOSE BY, IM LUCKY I GO TO NYU HOSPITAL IN NY

I am a 35 year old adult

Submitted by Anonymous on Sat, 2014-12-06 - 23:02

I am a 35 year old adult that had been having seizures since I was 10 years old and have been on several different medication to help control them and and over the past 5 years my seizures have gotten worse and doctors have determined that my medication was not working anymore so I was taken off and sent through some therapy through a mental health therapist hoping that that would help the mental issues that i have (Depression and Anxiety) doctors were thinking that was what was causing my seizures. I finished therapy and was told i did not need it any more but i am still continuing to have seizures they are almost always happening during my sleep. my doctors do not have me on any kind of medication for the seizures or for the mental health issues. . My seizures are affecting me cognitively and also affecting me at work. It is also affecting my equilibrium and i am always feeling dizzy when i have to bend down also messes with my vision, it makes things look like they are moving around me. I really would like to get these under control but I feel like no doctors are listening to me and they are not helping me through this. I had 3 seizures in a row this past Monday morning and after the last seizure is started throwing up. I puked of and on all day long and was out of it for the next 2 days. I had to mis 3 days of work because of it. It is Saturday now and i am a still feeling out of whack and it has really messed with my depression I have just wanted to cry a lot everyday. when trying to use my brain to think of simple things it is very hard for me and it makes me feel like I am stupid which also makes me want to cry and it has done a number to my self esteem. I feel like i am getting no support from doctors and I don"t know what to do. I have been asked by some friends if I am receiving disability for my seizures and i said no they have suggested that i try to get it so that it will help me financially when i have to be out of work because of the seizures but i feel discouraged because i have called the phone number that i saw on a commercial for disability and i was asked if i lost my job and i said no and they say then we can't do anything but i know there is a kind of disability you can get where you can still work part time. I need help or to be pointed in the right direction. I can't take this anymore. This is not only affecting me but it is making my family and friends very worried.

 I am a 35 year old adult that had been having seizures since I was 10 years old and have been on several different medication to help control them and and over the past 5 years my seizures have gotten worse and doctors have determined that my medication was not working anymore so I was taken off and sent through some therapy through a mental health therapist hoping that that would help the mental issues that i have (Depression and Anxiety) doctors were thinking that was what was causing my seizures. I finished therapy and was told i did not need it any more but i am still continuing to have seizures they are almost always happening during my sleep. my doctors do not have me on any kind of medication for the seizures or for the mental health issues. . My seizures are affecting me cognitively and also affecting me at work. It is also affecting my equilibrium and i am always feeling dizzy when i have to bend down also messes with my vision, it makes things look like they are moving around me. I really would like to get these under control but I feel like no doctors are listening to me and they are not helping me through this.  I had 3 seizures in a row this past Monday morning and after the last seizure is started throwing up. I puked of and on all day long and was out of it for the next 2 days.  I had to mis 3 days of work because of it.  It is Saturday now and i am a still feeling out of whack and it has really messed with my depression I have just wanted to cry a lot everyday.  when trying to use my brain to think of simple things it is very hard for me and it makes me feel like I am stupid which also makes me want to cry and it has done a number to my self esteem.  I feel like i am getting no support from doctors and I don"t know what to do.  I have been asked by some friends if I am receiving disability for my seizures and i said no they have suggested that i try to get it so that it will help me financially when i have to be out of work because of the seizures but i feel discouraged because i have called the phone number that i saw on a commercial for disability and i was asked if i lost my job and i said no and they say then we can't do anything but i know there is a kind of disability  you can get where you can still work part time.  I need help or to be pointed in the right direction. I can't take this anymore.  This is not only affecting me but it is making my family and friends very worried.

I am a 35 year old adult that had been having seizures since I was 10 years old and have been on several different medication to help control them and and over the past 5 years my seizures have gotten worse and doctors have determined that my medication was not working anymore so I was taken off and sent through some therapy through a mental health therapist hoping that that would help the mental issues that i have (Depression and Anxiety) doctors were thinking that was what was causing my seizures. I finished therapy and was told i did not need it any more but i am still continuing to have seizures they are almost always happening during my sleep. my doctors do not have me on any kind of medication for the seizures or for the mental health issues. . My seizures are affecting me cognitively and also affecting me at work. It is also affecting my equilibrium and i am always feeling dizzy when i have to bend down also messes with my vision, it makes things look like they are moving around me. I really would like to get these under control but I feel like no doctors are listening to me and they are not helping me through this. I had 3 seizures in a row this past Monday morning and after the last seizure is started throwing up. I puked of and on all day long and was out of it for the next 2 days. I had to mis 3 days of work because of it. It is Saturday now and i am a still feeling out of whack and it has really messed with my depression I have just wanted to cry a lot everyday. when trying to use my brain to think of simple things it is very hard for me and it makes me feel like I am stupid which also makes me want to cry and it has done a number to my self esteem. I feel like i am getting no support from doctors and I don"t know what to do. I have been asked by some friends if I am receiving disability for my seizures and i said no they have suggested that i try to get it so that it will help me financially when i have to be out of work because of the seizures but i feel discouraged because i have called the phone number that i saw on a commercial for disability and i was asked if i lost my job and i said no and they say then we can't do anything but i know there is a kind of disability you can get where you can still work part time. I need help or to be pointed in the right direction. I can't take this anymore. This is not only affecting me but it is making my family and friends very worried.