Looking for answers
Hello everyone my name is Drew and I am 38 years old as have had tonic clonic seizures since I was 7 and got them under control at 12 with carbamazepine . At age 25 they came back and we increased the dosage and added clobazam as well and so far been free from the big seizures.
All my life ever since I could remember I would get these weird feelings and they always presentes themselves before a seizure I believe they're called focal seizures or seizure auras , but I have been unable to get a real diagnosis.
Symptoms for me are
Racing heartbeat, always strong urge to go number two, dizzy and this hard to describe feeling where your there but your not... Like you can be talking with someone hearing them but cannot really process what there saying , the whole process lasts anywhere from 20 seconds to a few minutes but don't feel normal again till I go to sleep and wake up.
So I am asking for help from anyone who has experienced anything like this. I am confused if is a panic or anxiety attack or focal/aura seizures due to my history. I have roughly 20 a year .
If anyone has these type of feelings as well and can explain how it feels , tips to make it stop or make The eerie feeling go away I would really appreciate it. I do carry an average amount of stress and drink lots of caffeine and work shift work i am trying to see if can get my doctor to get me on a straight shift at my job to see if that is possible contributing to them as I am lost at what to do. Thanks in advance for any information you may have.
Thanks for the reply. I went to my family doctor today about it and she is scared to play around with my medicine as not having a full on seizure so waiting to see a neurologist (up to a year) . We tried increasing my dosage but my body can't handle anymore on 1600mg carbamazepine 30mg clobazam
From your experience did you try cutting out caffeine or better sleep pattern help? I don't know how to get rid of stress I feel that's most of my life and need to find a way to get it under control.
I know there is a lot of people on this website having a lot more difficult time then I am and I feel for each and everyone of you as I read threw your stories.
Hi Drew,
Sorry for the delayed reply. I would wait to see the neurologist. Call the front desk and explain what's going on and get on the wait list. Also, communicate with your doctor via portal messaging.
Honestly, stress is a part of life. I truly try to take it one day at a time. I am really good with taking time for myself each day - in the mornings (when I get up) and the evening (before bed). Selfcare is good for your mental health and stress level.
I don't drink caffeine. My sleeping pattern is good, because I prepare for bed. I do a lot of selfcare and winding down at night. Try to find a routine that can work for you.
Here's an article that may help
https://epilepsydisease.com/sleep
https://epilepsydisease.com/living/better-sleep-with-epilepsy
Sincerely,
Derra
Epilepsy Team Member
Hi there,
If I were you I would reach I to my healthcare provider. This is vital. I have experienced some of the same symptoms especially due to medicine and stress changes. Are you changing medicine? I have had epilepsy since I was 10 years old and I am 39 now. It can be a number of things from: stress, caffeine, lack of sleep
As far as you hearing someone, but not processing it- it seems like an aura or an absent seizure. Tell your doctor about all these symptoms you are experiencing.
Here are some articles to help you.
https://epilepsydisease.com/uncategorized/coffee-and-seizures
https://epilepsydisease.com/living/what-are-seizure-triggers
I hope I've helped
Derra Howard
Epilepsy Team Member
