New here but NOT to seizures or E ;)

[RavensLight09]

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:rock:

Hi all

I am new to the forum but in no way new to seizures or E. My seizures started when I was 21, about 21 yrs ago They were few and nocturnal. Then in my 20's and 30's I had a horrid neurologist who though he had witnissed me having complex partials, complex clusters, and tonic clonics in his very own office, by my early 30's he was calling my complex clusters and complex partials all in my head, he had diagnosed me dispite irregular EEGS, and then he began calling the partial seizures "anxiety" so he prescribed me horrible meds that sent me into status and I lost at least 2 weeks of memory and that was only being on those meds for 1 week.

Needless to say, that was the end of him...I woke up, still having partials for days, being accused of trying to kill myself though the medication levels were normal..I had and always have normal MRIs but I always have a sinus infection, I had abnormal EEGs back then I do now, I switched doctors, Have a great Epileptologist and after 14 yrs got a diagnosis, TLE with Frontal as well.

My seizures changed, they were uncontrolled and still at night but mostly all complex partial clusters.... then my new doctor prescribed Keppra XR I cannot use Generic, and Zonasamide, I also take Carbamazepine and Phenobarbital and Ativan for Emergencies. Still mostly Complex Partial clusters, but much more controlled.

My seizures changed again. 3 years ago my father passed away, two years ago I split open my head (not seizure related) then my seizures and my hormones flipped to nocturnal again. I am still on the same meds, and I am grateful for life. Feel free to write mee

As Always,
Erin

 

[LisaBee]

Hi Erin! Welcome to CWE! My daughters seizures are nocturnal, she has never had one while awake. Are all of yours nocturnal or have you had daytime episodes as well? Sounds like you have good control now, and a great attitude! Glad you got a diagnosis after so many years! The Drs here were telling me that my daughters partials in her sleep were just bad dreams and would go away. I knew different so we changed to a Ped Neuro. I was right. Best of luck to you!!

 

[RavensLight09]

Thanks Lisa,

Not all of them are nocturnal, but they started that way...then morphed into day and night. Grand Mals at first only, then complex partials that would wake me and turn into grand mals, then complex partials that would be in the middle of day at work...now it is more grand mals....with sometimes the complex partials that wake me....I am lucky to have someone that is so understanding...I think that was the hardest part, because I understand the pain of others, I hated being pre judged by even family members who didnt understand....now I have someone who is an angel, I am forever grateful... Yes always be leery when they say it is a one time thing or grow out of or just in the head aka nightmares ... that is their way of hoping or that they can't explain.... I was grateful for an E diagnosis at 35 after 14 yrs, because I knew then they would take me seriously...they couldn't tell me it was in my head figuratively