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When is it good enough?

Thu, 04/30/2020 - 21:40
I'm only having nocturnal seizures. About two a month. Sometimes I'm extra tired the next day or two. Other times I wouldn't know if my wife didn't witness it. Currently on three medications. Feels like I've tried a dozen combinations over the last ten years. Do I keep searching for the lucky dosage, or be content with the way things are. My main concern is not having GM's and keeping them nocturnal.

Comments

Hi, Thank you for posting, it

Submitted by Anonymous on Fri, 2020-05-01 - 10:22
Hi, Thank you for posting, it sounds like you’ve been through a lot. It’s important that you’re continuing to follow-up with your healthcare team to express your concerns regarding your seizure frequency. If you have not already, you may want to consider seeking more specialized care for your epilepsy at a comprehensive epilepsy center. A comprehensive epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist, (epilepsy specialist), who can help explore all treatment options and determine what individual treatment plan may be best for you. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center  . It may be helpful to keep a journal or a diary to help keep track or your seizures and document how you’re feeling. My Seizure Diary can be used to organize your health issues, manage medications, record side effects, other therapies or personal experiences and more, which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . There are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet, with your healthcare team to see if an alertdevice is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf . For additional information regarding nocturnal seizures and safety while sleeping, visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline  , or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates

Me too. I had the resection

Submitted by OldPunk123 on Wed, 2020-05-06 - 21:05
Me too. I had the resection surgery in 2002 and, as far as I know, I’ve been seizure free ever since. But last October during a sleep deprivation eeg I had a seizure. The. I went in the hospital and they tracked more every night. But none while I was awake. I switched medicine and the SI was so bad I went into the mental health hospital for a few days. I had been fine for years before the add on medicine. Now I’m considering RNS and DBS surgery as well as switching to the 3rd medicine since October. I wonder where I would be now if I never took the sleep dep test. It has been a hellish six months, and still no seizures that I’m aware of. Only what they find when I’m asleep. Sorry, no help, but you’re not alone. 

is one of the biggest

Submitted by wichitarick1_5a7dc4f30d6c4 on Fri, 2020-05-08 - 03:36
is one of the biggest questions in treating this it seems,Not sure I can help either but same the other poster ,your no alone,over the last 10 yrs. have taken most aed's or combo's of them,am alone now and may not know I had a sz. unless it was a longer one and I feel it,,have about 8 of those a mo. so in constant recovery is more my "norm"my current combo.does shorten them,but want to stop keppra,BUT I ask the same thing as you,do I want to go through the adapting or side effects? and now I am older it  takes to long to recover,, but you and the other posters just know your not alone. and keep reading stories from here ,you should find a similar one, and I would invite you to CHAT about it on here. "PEACE TAKES PRACTICE" Rick

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