I was told by a male neurologist that i was just a hysterical woman, so petrified of becoming a mother (I wasn’t even trying for a family back then btw) that I was “faking” seizures... not sure what use the tonic clonic in the bath, on my own in the house, was supposed to prove to anyone, especially as it was pure luck my partner care home when he did?!?!!

Catamenial epilepsy doesn’t exist in his world... Irregular periods and always a tonic clonic 14 days before, when us hysterical birds apparently ovulate. Surely even men, I thought, understood us women don’t get some ethereal communication telling us when we’re ovulating? Apparently not all, “even a consultant neurologists, don’t you know, who even [he] at 35, was scared of becoming father!!!” (I was a 36 year old ma qualified social worker at the time!) That consultation did finish with me being slightly hysterical, or pissed off as I’d prefer to call it.

Lest I need to say, I now have a new neurologist, who diagnosed catamenial epilepsy immediately after seeing my seizure diary and medicated me accordingly, so I’m 18 moths seizure free, weird that if it’s all in my head, as I am now planning a family?!?!!!! (Apologies to those who’ve heard my rant before, it still pisses me off somewhat strangely... can you tell?!??!) 🤪

Hey Kathryn, did your seizures get worse after your pregnancy? It might be worth looking into catamenial epilepsy so and you’ve not already heard of it. I was seizure free for 15 years with only a progesterone contraceptive implant. May not help at all as I don’t know your situation, but always worth sharing good experiences in this world I reckon? Good luck!

@A MyEpilepsyTeam Member
I feel for you, in Canada our medications are paid for by the government if you are a low income earner and some employers have some form of extended health insurance. We have a medical service plan that pays for our basic necessities. I had a professor in university whose brother died because he did not have enough money to purchase meds and he resided in a third-world country. That’s how I came to my conclusion. Different country, different experience. Sorry if I offended you☺️

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A MyEpile...

I do believe that many of us may have it easier finding services than others. Like myself I have an Epileptologist instead of an Neurologist. I live in the U.S.A. and not everyone know what they are nor able find them in their area for quite a few different reasons.

Then again we don’t totall know if there are good Epilepsy Organizations across the world. I know if I need any information or advice., I can lean on the Epilepsy organization for that help. I don’t know whether or not they have these organizations in other countries , to be able to lean on for , support, assistance, information and other resources.

Another thing to look at is how Educated our Doctors are in our country. I know some of the Dr.’s in my country be Dumb Witted and don’t have a clue on Epilepsy. Then there are those Dr.’s who think we are looking for attention or just imagining things. Where’s the respect in that?

I agree with @A MyEpilepsyTeam Member , what help are other people able find across the world. Maybe there isn’t much help programs, or organizations they can lean on. It would be interesting to see what everyone else have to lean against for help.

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A MyEpile...

That sounds rubbish! Tonics are horrible, but mostly for my partner, the simpler partials/auras are definitely more unsettling for use that have to go through them, especially the ones hat don’t seem to ever end. I used to get really sensitive to noise when I was on carbamazepine after simple partials. Good luck, and I hope you find some respite. But if the pregnancy, postpartum hormones seemed to effect things, I’d definitely suggest looking into progesterone. My body hates lh hormone, which I think is really low in the first 6 months, or longer if you’re breast feeding. I’d definitely look into progesterone. Medical cannabis and cbd oil have actually been approved (I think) by nice in the uk for the treatment of epilepsy. Thinking of you xxx