Just needed to vent a bit and was wondering if anyone else has felt similar. I was recently diagnosed with a CCM and told that the weird episodes I had been told were panic attacks have actually been seizures my whole life. I’ve been waiting for my consultation for LITT. My appointment is in June. In the meantime, it’s been hard trying to get used to calling what I’ve always just called “episodes” seizures and come to terms with the fact I have a mass in my brain. I’ve lived life fine for so long that it feels weird to suddenly know there is something in my head that needs to be taken care of. Because I have focal seizures and I have a CCM, I feel like I should be grateful it is not more serious. I know this is probably normal, and I have talked to my therapist about these feelings, but it’s been weird coming to terms that I have a rare brain malformation. Has anyone felt similar after their diagnosis?
Hi @Kall6000
Yes! I had a seizure out of the blue, and have had an MRI which showed a large AVM in my right temporal lobe. I only had thd MRI because I pushed as I wasn’t recovering from the seizure.
I know this could be a lot worse, and like you I am reflecting on symptoms I had put down to other things. Menopause etc…
I can’t work at the moment, but am managing ok reslly. I have a neurologist appointment next Monday, and my biggest fear is that they will tell me my symptoms are not bad enough to treat, and that I should just get on with it. That so many others have worse things going on … that I am overthinking… etc..,
I hope this gives you some solace, your post certainly did me.
Wishing the best
Tracy
I just want to say you’re no imposter here!
Lots of love,
Richard
It does feel good to know i’m not the only one feeling some of this doubt! I hope your appointment goes well! I’m sure they will offer some options for treatment, even if it is just meds for now.