epilepsy linked to hormone changes?

[lauraloveschocolate]

so I was diagnosed with epilepsy as a teenager after only even having 2 grand mal seizures, ever since then I suffer with partial absence seizures which come on every 2-3 months and last about 3-4 days each time.

I live with it because I don’t want to change my medication as I’ve been stable with no further grand mals for 15+ years but I would really like to know what causes it. I used to think it was hormonal as it would happen around my period but as I’ve got older it is so random, could it still be hormones? My neurologist doesn’t know and other than trying to change my meds I will have to continue to live with it affecting me every 2-3 months.

does anyone experience anything similar or know who I could turn to for advice? I was thinking of maybe hormone testing to see if it is an imbalance around certain times of the month? As minor as it may sound I don’t want to live with this forever any replies would be much appreciated

[Hatchen]

hi there,

What you’re saying is pretty much identical to me! I’ve been using so many different medications until the ones I’m using now (but have been using for about 15 years and am stable now).

Partial absence seizures can definitely be hormonal, but it is also unique to the individual brain. I wouldn’t want you to be messed around by your neurologist - or any more kinds of medication than you need - but I want you to know that I understand.

[lauraloveschocolate in reply to Hatchen]

What medication are you on? If you don’t mind me asking. And how did you go about getting on the right path. Great to hear a success story, thank you for replying.

Must be such a relief being stable for all that time.

[Hatchen in reply to lauraloveschocolate]

I’m on Keppra and Topirimate now - although it took years to get the balance of the both of them. And also trials of different ones (like finding out that I was allergic to Carbamezipine, or however you spell it! and trying others) before getting to this point.

I think having a kind, empathetic and patient neurologist really helped me too - as well as close circle of friends. Those that really believe me when they know that I’m not “just daydreaming” etc - that is so very important.

[lauraloveschocolate in reply to Hatchen]

I’m on Keppra but don’t have anything additonal, maybe it would be something for me to mention, however changing your meds comes with a whole new world of problems and anxiety doesn’t it. I would just love to get to the bottom of it once and for all.

Thanks again.

[ann38]

perhaps your consultant could contact the Epilepsy society. They have a consultant who has an interest in this area and how periods affect your seizures. They might be able to answer some questions or refer you there.

[lauraloveschocolate in reply to ann38]

That’s good to know thank you. I’ll be sure to mention it.

[Hidden]

Hi, it’s completely understandable that you want /need to know what causes your seizures. I’d think everyone would . I certainly do .

That’s something that has been mentioned with me (early menopause) by the neurologist & someone at epilepsy Scotland . With me, they’re not investigating until/unless my epilepsy is more controlled.

It’s good to see that someone has mentioned that the epilepsy society has a constant who has an interest in this area. I really hope you’re able to find out what can be done to help find the answers you’re needing.

Stef.

[apache31]

Any progress on the link between epilepsy and hormones? Different blood tests like nutrition deficits or imbalance?