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Hi there! I am wondering if you may be having seizures? Strangely enough, I have a condition which is somewhat similar, called Catamenial Epilepsy... started at the age of 39 out of nowhere, took years to define, and it is related to an imbalance of estrogen (too much) in the body. Have you had any history of anything like this?
For me, the seizures can be just 'absence' seizures, having an aura (smells, a feeling of 'deja-vu') all the way to grand mals, which fortunately have only occurred 4 times.
Doctors thought I was over-hydrated, needing sodium, and so many other crazy explanations over the years. Now I take Prometrium (bio-identical Progesterone) and zonisamide (a seizure drug) when I am symptomatic, and it helps keep me fairly level.
I see that you are offline; I will check back to see if you have more info to share or ideas that we can use to problem-solve with, and until then, take good care!
You hit the nail on the head with 'a feeling of deja-vu' with my absences, & yes! my period started two days before these 'other' attacks I hadn't experienced prior. I now feel I have a name (catamenial epilepsy) or at least something substantial to go back to my doctor with in the morning. I did NOT think I would get anything useful from this site at all. Thank you so much Heidi for a glimmer of hope. <3 :-)
You say you take the medication when your symptomatic, but how is that manageable? Do you simply start your medication for example 5 days before your period until it's finished or how does it work for you? Also what happens when menopause kicks in? I just thought Im not sure at which stage of 'life' your at, sorry I didn't mean to appear rude.