Periods and temporal lobe epilepsy.

[Nicole1]

This is a post regarding woman with tle. Without sounding crude, do any of you ladies tend to find, your seizure activity spikes/gets incredibly worse, around the time of your menstrual cycle? I have noticed a definite pattern regarding mines, it always seems worse/more intense seizure wise, around that time of the month. Thanks in advance. xx

[Lj08]

Yes mine are terrible I also come out in massive bruises as well. When I see my bruise on my thigh I know I’m in for a week of twitching until what I call the control freak raises it’s ugly head and knocks me out for a couple hours. Oh the joys twitching and cramps, I will always keep smiling though 🥴🤗

Lj

[Nicole1 in reply to Lj08]

Thanks for your reply, glad I'm not the only one, it feels to me like butterfly's, but really bad ones and then bam, seizure. Just goes out of control at this time of month 😢 (more than usual) xxx

[Lj08 in reply to Nicole1]

Unfortunately it is all to do with hormones get raised

[6002athome in reply to Nicole1]

I too had the “butterflies “ and my husband always said the seizures were worse around the time of a period.

[sweetpotatoes]

I also think my seizures get worse around this time but when I spoke to my dr about this she said I should keep a diary just to make sure.

[llanarth]

With many women I think they now find hormones can be a trigger, so if there's a pattern this could well be the case.

[AmyBadd]

I had my first seizure within a couple of weeks of my first period! In many women their epilepsy is linked to hormones. Some women stop having seizures after puberty, during pregnancy or after the menopause. You might be interested to listen to this recent episode of BBCs Women’s Hour, which I actually just listened to over the weekend. The woman interviewed has epilepsy which is very closely linked to her cycle. bbc.co.uk/programmes/m0002gqb

Amy xx

[Lisali216]

Hi Nicole i did when i had a menstrual cycle. That was when and where my auras started then i knew a seizure was about to happen. Due to terrible fibroids i had to have a full hysterectomy (with ovarian cancer in family) so they took it all out. After the procedure i have not had a seizure in 4 years (with a break through 6 months ago) but if i stop taking the med I'll be right back with seizure activities. So I personally feel as if mine had a lot to do with the seizure activities.

[Nicole1 in reply to Lisali216]

Thanks for replying and so sorry to hear of your situation. I definitely think there is a link with period cycles and tle. Mine are always worse when it's my totm. Xxx

[SJClaverley in reply to Nicole1]

Hi Nicole, I went through the menopause very early 9 yrs ago & that was horrendous. Definitely all linked which my neurologist has confirmed it is. But doesn’t help. X SJ

[llanarth]

One more reply. Now it's my perimenopause. At one point I found that the coil (mirena) worked wonders. Sadly that no longer controls my epilesy....but if you notice a link then it is worth a try. Now I'm in my mid 40s my seizures went haywire. They have calmed down, but I no longer have the pleasure of calming the seizures without the AEDs.

[SJClaverley in reply to llanarth]

I have since discovered my medication for epilepsy has effected my bone density. I have a high calcium intake.

But the drugs (only certain ones) in simple terms breaks down the Vit D which this then breaks down the calcium in the body.

It has effected my hip slightly, luckily I do high impact sport- weights etc & now take calcium/Vit D which I get on prescription.

X SJ 😃

[sweetpotatoes]

Yes mine spikes also around this time.

[SASQUATCHBOBO]

yes.. and I'm dealing with it now. I'm not a fan!