Struggling with Epilepsy Diagnosis and Medication

Hello Sweet pea, I also suffer with silence season. My doctor at the time had proscribed a med that I was allergic to. It caused my silences seizures even though I was taking meds for it. I'm not saying that is the problem but it's something to mention to your doctor. I don't remember the medicine's name. God bless you and your family.

In terms of the epilepsy it might be a case of it not being the right meds to combat it I had 3 before I found the meds that helped. I was told I grew out of my epilepsy at 11 went 8yrs without a seizure then started having them again we thought it was epilepsy but it's my bodies way of getting rid of stress now I'm on anxiety meds and I'm in therapy.they seen to come in clumps almost I can go a month without one and then have like a week of having them everyday. Possibly seeing if there seem to be any triggers for the non epileptic ones might help.

I recommend an SEEG, it's a little more invasive but it takes about as long as an EEG study and you'll get much more accurate results for your seizures along with better possible options. I found out I was having seizures I didn't even know about or even remembered seizures I was having until the SEEG and now I'm on the fast track to getting an rns implant to help reduce my seizure frequency

A similar thing happened to me when I was 12 all I said is you have to change my meds but the hospital didn't so I moved hospitals so I would say try to calm down and tell your fiance to ask him for a word of advice as well

I’ve went through so many tests and they can’t figure out why i have seizures. I understand your frustration. One of the worst mental pain i’ve been through is missing big moments because of my epilepsy. I’ve tried multiple meds to get it under control and have finally found one. consider switching neurologists and find one that’s better suited for your needs

Sorry to hear about your experience with your doctors. Unfortunately, mine has not been much different, I don't know why it so hard. There is definitely a lack of understanding and support with epilepsy. Are to sure you have non epileptic seizures? As I am hearing more and more of young people(mainly women) with epilepsy are getting diagnosed with Neads. However, they only have mental health history to support their theory. Good luck on your journey 🙏

Hey, it's okay to rant. We all need to sometimes. I had a 5 day eeg that was filmed 24/7 back in March 2021 and only then did they start to think I had a different type of epilepsy than the one they had diagnosed me with for a couple years. I know am presumed to have the rarest type of epilepsy which was a real downer and I've had nothing but scans and tests since. Even now I'm up for more scans this year to see if surgery is possible. Basically it's not an easy journey or a quick journey but it's great you have a fiance who is sticking by you. Turn to the people in your life and be honest if you're struggling. Talk to your doctors and tell them how your mental health is being affected. ❤️