Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

new diagnosis and need some help

Mon, 03/02/2015 - 20:50

I am 24 and have been diagnosed with absence seizures. My dad thought he noticed me having them since last 4th of july and we finally went to the doctor after i had a minor accident because of them. I am now on the 3rd different seizure medication in less than a year.  I took Lamictal at 500mg a day and it made me extremely irritable, so the doctor pescribed oxtellar xr at 1200mg a day and after about 3 weeks of taking it (1 week at full dose) it started giving me extreme migranes almost daily and once they started they would last all day. Sometimes they would be severe and i could barely work through them, no matter how severe i would get kind of an aura and feel like my vision is messed up but could never pin point exactly how it was, just felt off. And the headaches would feel better somewhat if i sat down and my vision would return to normal while sitting down. Now i am on tegretol xr 600mg (200mg 3x a day) and it seems ok but i am concered about symptoms sneaking up like they did with the oxtellar.

 

A little about me, I had a traumatic brain injury as an infant and the right half of my brain has a substantial amount of scar tissue. According to my dad they said I would not live through that night, when I did they said i would be a vegetable and would most likely die very young. I am now working part time and going to school full time. I am irritable to begin with, the lamictal seemed to just make it where any little thing would throw me into a rage, one day i was late to work and when they called me and woke me up (had forgotten to set alarm) i went nuts and started throwing stuff and yelling (after i hung up the phone). I have road rage ect. I was bullied a lot in middle and high school and pretty much had to fight my way (literally) through it. I have not had but a handful of friends since middle school and its all caused me to be very depressed and anxious since.

now i have seizures to deal with as well as college and trying to make something of myself. Its all very stressful as i do not make much money and cannot afford all this. Insurance, doctors visits and medicine as well as blood tests its just too much. It also seems that i have been getting headaches more often even before and now after the oxtellar which just adds to my stress. also even with depresson i had a good work ethic and would get ahead with college work and work hard at work, however, recently i have noticed i just dont have any drive anymore. all i feel like doing is sleeping and watching tv or going out to get away from everything, i slack off at work and just kinda go along with school work and get it in right as its due. it seems like the seizures have messed with something else in me and having depresson already has made it worse. i no longer feel like myslef anymore.

Comments

Looks like you have been thru

Submitted by just_joe on Tue, 2015-03-03 - 10:49
Looks like you have been thru a lot. My epilepsy is caused by scared brain tissue. That scar tissue was from a hemmorage to the brain, That hemmorage was caused from a blow to my head. Now it wasn' as bad as yours but it did cause my epilepsy.It takes time for a persons body to get used to the medication. Seizure sontrol medications are not one time fits all medications. Asperin works and take it and the pain is gone. It leaves the body in hours. Medications for seizure control take 3-4 weeks before your body gets used to them. Adjustments will generally be made after you have been on them for 2-3 months. I read the medications you have used. They are good. I personally took tegratol. It works well and when I was takingit it was coupled with 2 other medications.Almost all medications for seizure control can cause a person to slow down. They calm down the central nervious system. I know at times when I was your age I would fall asleep after getting in the car when we were about a block away from home. As long as I was active and moving I could do anything. which also means I kept my mind active while at work.As far as having friends while in school.... I had some that said they were friends that once they saw me in a seizure (focal motor going into a seizure that looked like a grand mal) I heard them say "I don't want to be arround him any more." So I avoided them for a few weeks until they came up and asked questions. I also know about the people that want to think your weak and can't defend yourself. I ended up suspended for a few days. But he had a few ribs cracked. When a friend of his jumped in I had the best fighter in school pick him up and set him down. So at times I did battle and at times Ilet thing take their course... Understand that your neurologist prescribs medications that he knows work along with dosages that he has patients on. It does take time to find th medication and dosage levels to be gotten. Those dosages at times need to be adjusted because your body changes. Weight gain or hormonail changes can affect levels which can cause a break thru seizure. If you take medications 2 times a day those dosages need to be 12 hours apart.. If you are having issues with your medications it could be the dosage levels are too high ot too low. Call your neurologist and ask him. Phone calls don't cost money and a lot of things can be done in them. You posted your father thought you were having them since july 4th.  Fine I do understand that that can happen. However I do know that a person can have absence seizures for longer without people knowing it. I was being written up for day dreaming in class for well over a year. Those day dreams were seizures and not day dreams. when a person passes pop quizes with scores in the top 5 in class those day dreams were not day dreams. Focal seizures look like day dreams but in them you see hear and know whats happening. I heard the question but my answer came out when the seizure was over which meant a few seconds later when the teacher had gone to the next student, If that had been happening to you it can take a little longer to get meds and dosages set. BEEN THERE DONE THAT. Relax and let your doc do what he is being paid to do. keep your mind active and move arround. Talk to your friends and se them. It isn't easy but I too was in college and worked a 40 hr week. Oh and back then it was not easy since I didn't drive and needed to catch a buss to get to college. You can do it just know that you are not alone one. Others are at the same place as you are.   I hope this helps Joe

yeah, i know it could have

Submitted by kms1990@ymail.com on Wed, 2015-03-04 - 10:18
yeah, i know it could have been happening earlier. however, when my dad brought them to my attention i realized about 5 minutes after i had one that i could not recall what i was doing 5 minutes ago. I have never had that happen before in my life. I did not have seizure activity in middle or high school. It was just my mom keeping me in occupational therapy (i did not need but she would not have it) and the like that got me ostracized. But hey after severely hurting a few people i kind of got what i wanted, left alone.  I know the meds take a little bit of getting used to. the tegretol seems to be helping and not have any major side effects. I feel all these meds have zapped me of all motivation to do anything but sit in front of the TV and that bothers me. The tegretol seems to do it less however as i feel more awake when i have to get up early for work. before all this i had cut way down on caffeine (drank a ton everyday) and now i am back to having 2 monsters most days and soda constantly(which maybe why it seems i feel more awake) I hate drinking these constantly but it seems like thats all that gets me to do things i need to do. it slowing me down seems really bad as it combines with my depression and  i just dont feel like even standing up.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.