I’m an endo warrior and have recently started having seizures for the first time. I have daily headaches, and I have lost full mobility of my left side since the first cluster of seizures. I am awaiting an MRI and an EEG, but a neurologist has dismissed my questions about endo on the brain and told me it’s not epilepsy either. He’s referred me to a psychiatrist. Does anyone have any information? The internet gives very little away, other than the symptoms I’ve mentioned and that it’s super rare.
Any help would be greatly appreciated.
Jessie
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JessieWilde
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Hey, sorry to hear about your seizures. Obviously endo on the brain is incredibly rare, but if the seizures happen primarily during periods it should be considered because that is how endo on the brain tends to present (based on the limited literature). And, goes without saying it'd need to be treated at a specialist centre. I know we're not really allowed to post other links but this facebook group might be a great place for you to get some advice facebook.com/groups/7355153...
THANK YOU. Thank you for taking me seriously. That’s really interesting. Yes the first cluster of seizures was several hours after a big flare up of endo pain. The next day I started my period. I believe it’s the start of a pattern.. we shall see..
You're welcome I really hope you can get some help with this. It would absolutely suck if it was endo, but if it's any consolation the cases in the literature I've come across (info from the fb group) usually do well after proper treatment!
I suffer from seizures too! They told me it’s anxiety years ago but you know your own body and I’m sure it’s not anxiety I’m a pretty laid back person, I suggested it was related to endo as after a seizure or feeling dizzy and sick I bleed afterwards , only the past month have I found a doctor that had actually said he’s never heard of it but different bodies react different xx
Thank you for letting me know I’m not alone! I’m sorry to hear you haven’t been taken seriously either. Have you had any numbness or loss of mobility? Headaches?
I had headaches and the first time I had a seizure I couldn’t walk for 3 days I feel a little dizzy now and then but when I was in my cycle before I’d only ever have a seizure on my cycle x
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