Welcome to the family. Here you will find many friends who are happy to answer you questions or guide to the resources that might help. We are also happy to read your rants whenever you feel you must "scream" cuz most of us have had those days.
As Candi says, "Yes, you have epilespy". You've made an important step by simply posting your concerns with us. Also your name "fighter" says alot about your spirit.
To some people, seizures as well as loss of memory can be scary. The memory loss is likely due to the seizures. In my later yrs of ep, I had no recall of the first few minutes following a seizure. Since '75, I've had only one that truly unnerved me. I can share that one with you at another time if you wish.
Do you recall feeling any particular way that you might have felt prior to the seizures? Butteflies in the stomach, strange taste, vision changes, etc? These are some to the auras( warnings of a possible upcoming seizure) that I experienced.
Keep moving forward as you seem to be doing. Ask questions. Be prepared for one at anytime but don't sit waiting for it to happen. Have a good day.
p.s. If an incomplete post appears, the computer screen went blank for a short time and that post was lost.
Do you have a phone camera or video cam? If so, see if one can be captured to show the docs. Mine began in the "prehistoric" age when such techonology was unavailable. I'm talking about the "70s.View Thread
I woud be happy to help you. Please read my story. You might find some answers there. I am the young lady with the turban. That pic was taken the morning after I had grids placed for seizure monitoring.
Please get your questions to me quickly cause I have family duties coming up and won't have a computer availabe for 2-3 weeks.
My email is included in my story. I'll contact the girl standing by me who had a lobectomy about 4 months prior to mine. Candi, you do know that's Dana(aka clarinet)?
Be sure to mention those twinges to your doctor. Think about asking your pharmacist about it too. If you're taking more than one med, it could be a counter-reaction. I never experienced the side effects that have been mentioned with Keppra. BTW, I was on the research group that got the med approved. I think Keppra was then known as "LO59" when it was under study.
Thanks for asking about my mom. She's doing really bad. This past Thursday,she went to ER and discovered that her postassium level was very low. She was also very confused. They kept her overnite to get her stable. Within 12 hrs we were back at ER. This time the discharging doc who is also the admitting doc would not re-admit her as an in-patient. We were sent home. Less than 24 hrs passed before I had her back at ER. This time I took her to a different ER. This ER did a urinalysis and discovered an acute UTI. They also did a CT and discovered some abnormalities in one area of the brain. I spent the next 4 days/nites with her at the hosp. She was transferred to rehab yesterday, tues, for evaluation and excercises. I learned today that the docs feel it is time the family look for a permanent health care facility for her cause she needs steady medical attention. The docs feel if a family member were to stay with her, it simply would not be enough.
Her memory is slipping. While she was at the hospital, she occasionally thought I was the patient. She also had thoughts that we were at a hotel cuz she often asked me "when is checkout time?"
It has been a long, difficult week. I went to the school that I volunteer at to tell them that I couldn't finish the school year with them. They were sorry to see me go but totally understood.
Right now I don't remember what her meds are. Simply that she must take them and resisting. I have asked her many times, "mom what would have happened if I had resisted my meds?"
I will probably disappear from you guys for awhile. Meg, please feel free to contact me via my email(click my picture) I do wish you good tidings to come. Take care of each other. I'll check when I can. Love you all.
so good to hear from you. Sorry about the injury due to the seizure. That is a concern for all of us.
Sounds like you're doing what you want to do which is very important regarding our seizure control, or any medical condition. Keep moving forward.
I don't think that you have to worry about losing the entire left side of your brain. They will do many tests to see if there is one location(spot) that is the trouble. If it comes to choosing surgery, the docs will do it only if there is a higher chance for a decrease in seizure activity or complete elimination WITHOUT damages the other functions of the brain. It's been 12 yrs since my lobectomy. I have one regret. I DON'T HAVE A TAPE OF THE PROCEDURE.. I would love to see the procedure they did on me. You know the commercial where the docs are doing brain surgery and the patient is searching he web for the least expensive flight? What nerve did they hit and what was my response has been something I joke about.
I do hope the Keppra is effective for you. I have been on Keppra since it was in research. I had none of the side-effects that many people worry about.
Independent living is great. To come home and have everything as you left it is wonderful. That last Starbucks coffee is still there. Yeah!!!!
Thanks for asking about my mom. She appears to be slipping away from us. Her short term memory is very weak. She has also been experiencing anxiety attacks. The major problem is that she won't take her daily meds regularly because she doesn't like the way they make her feel. I got her a pillbox to her remember. She takes her pills out of the box and forgets where they are. It has been a nightmare.
I'll catch up with you later. If you need any info about the surgery, please ask me any of your concerns. Heading to the TV to watch the LAC and OKC.
High sugar? Definitely. Years ago, somewherre in the late 70 or early 80s, my psychiatrist made a connection with my diet( ice cream, chocolate, sodas) and my seizure frequency. Elimating about 95% of that did decrease my frequency for quite some time. But we all know that all good things don't last forever.
As for meds, I understand!!!!!! Finding the right one or combination takes much patience. Add in willpower and belief in your med team as well as yourself.
Don't stop asking questions or requesting answers/explanations. Do seek an epileptologist. DO NOT QUIT ON YOURSELF.
I had a reaction to cigarette one day. I was visiting a neighbor who happened to be a chain-smoker. I became very nauseated and had a bad headache later. One or two days later, I had a seizure. I mentioned this to my nurse who said that the smoke likely caused an interruption of oxygen to the brain. This interference most likely caused the seizure.
Like you said, "anything is possible". I simply logged that episode in my book and avoid smoke as much as possible.
I have no regrets about the lobectomy. Well, I do have one. I regret that I didn't have it filmed so that I could watch the procedure.
I had no unusual pains during, or after the surgery. The head bandages were uncomfortable in the beginning. Occassional headache that focused around the incision. Overall, I was very comfortable during my stay.
I did have to take an extended LOA from work due to a temporary bout of confusion. That passed too. It was frustrating not being able to return to work as the docs and I had expected but it worked out well.
I do have an occassional seizure still. But I will take 1 seizure a year against 20/month. Prior to the surgery, I was taking 4 AEDs. I am now on two!!! I was never expecting complete seizure-freedom. Didn't want to set myself up for a disappoint. The 99.99999 decrease in activity is simply wonderful.
Have you started any testing to find out where the seizures begin?
I'll contact a friend who had the lobectomy some months prior mine. We had the same med team who thought I would benefit from her experience. It worked out very well.