Endometriosis & Seizures: I’m an endo... - Endometriosis UK

Endometriosis UK

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Endometriosis & Seizures

JessieWilde
JessieWilde

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

9 Replies

It a hard one u do need a mri scan as soon as poss before u can even think about it yet.

I had something like this about 11 years ago and it was severe stress.

I kept passing out( anything up to 4-5 times a day) my left side of face went numb.

I could not go out as i would have these passouts anywhere! Once brought a Whole shelf of tampons down on me in supermarket.

Had mri nothing..

Saw a therapist and he recognised i wasn’t breathing properly! So my head was not getting enough oxygen. It called hyperventilation syndrome.

I gave up my job and i got sent to a physio for breathing and believe it or not trained me to breath properly and i got better it all went

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...

also just to say, if it was endo on the brain you'd need to have the MRI etc whilst on your period to have the best chance of something showing up.

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

JessieWilde
JessieWilde in reply to Nat21

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?

Nat21
Nat21 in reply to JessieWilde

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

JessieWilde
JessieWilde in reply to Nat21

Also, do the seizures seem to be linked to your cycle?

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