Hormonally Challenged

[Pinkattitude]

Hello,

Totally new here, I've had seizures for 45 years of my life. They are basically absence seizures except for a bit that my hands play. My mother knew when I had a seizure because of a thing I would do with my hands when I had one. I, of course, would not tell her I had one, trying to avoid going to the hospital to have those needles put all over my head for an EEG.

We moved a few times when I was young and landed in a town with no neurologist. My dr was concerned that I was getting the max amount of mebaral recommended for my size, but I needed extra help as a sophomore in high school, so he added tranxene to the mix (this stuff is horrible, btw, made me need sleep way beyond the norm). The tranxene made me sleep lots, but did nothing for the seizures as I recall having a few through college. Got a great caffiene habit, too, trying to stay awake to study.

After college a neurologist who was straight out of school suggested that I may have outgrown my seizures, so he took me off the tranxene and slowly started taking me off the mebaral. Was great to be off the horrid tranxene, but no matter how slowly we went, getting off of mebaral was not a good idea, seizures came. So I went back on the mebaral, but to a slightly higher dose.

Seizures stayed away in my 20s and 30s except for the time the pharmacist gave me half strength pills (they were the same size as the others, so I didn't know they were half strength). Six weeks later I was having auras and couldn't get to sleep easily. Finally called a pharmacy and found out I had the wrong stuff, but it was a good blind study.

At some point mebaral became hard to obtain, so I called my doc and asked what was going on. He said they weren't making it because it was basically the same as phenobarbital except that mebaral had an extra phenol group on it that "breaks off right away and doesn't do anything for you." That was false because on phenobarbital I started having strange hot flushes on my hands the day before my period would start. Hmmm.

Then the doc thought that I may do well on a newer medication like dilantin or tegratol. Neither worked, and I became pregnant with child #1, so that ended and I went back on phenobarbital. Used it through two pregnancies and to this day.

Enter the fun perimenopausal phase of life. I start having auras, then weird seizures where it seems like I'm conscious the whole time. Once when emotionally stressed I came out of a seizure to find I had burned my finger on a hot pan. Then I regularly started having seizures in the evening as I fell asleep. Now I seizure when falling asleep and when waking up. Occasionally I have a night of seizures - not a good sleep at all.

I'm really hoping that once through menopause, the seizures will either go away for good or go back to what they were before perimenopause. Call me spoiled, but for years I just had to take my phenobarbital every night and I was fine - just give me coffee in the morning to jump start me.

Anyone with experience or advice about going through hormonal times out there? Advice gratefully accepted!

Thanks!

 

[Nakamova]

Hi Pinkattitude, welcome to CWE!

Perimenopause is when estrogen levels start to fall -- usually good news for folks who's seizures are at least in part triggered by estrogen. But perimenopause is also when progesterone levels start falling (and progesterone is what ordinarily helps keep estrogen in check). If the progesterone levels fall faster than the estrogen ones, or if the estrogen levels are fluctuating up and down, then you may be vulnerable to more seizures, rather than fewer ones. You might want to have your hormones levels tested (TSH, free T3, free T4, thyroid antibodies, estrogen, and progesterone) to see if they are playing a role. If your seizures do have this hormonal component, then you might ask your doc about trying progesterone cream.


Aside from that, it can't hurt to look for other triggers, and then avoid them. You mentioned emotional stress -- are there others? Keeping a seizure diary can help. Sometimes there are things like foods or behaviors or environmental stressors that are making things worse, and the diary can help to pinpoint them.

Best,
Nakamova

 

[Pinkattitude]

Hormones are almost certainly a trigger because while I was still having monthly periods, seizure activity was centered around specific times during my month. Stress seems to be a compounding source, but I haven't been able to tell if it alone can cause a seizure. I have a large hunch that emotional stress as a child was part of the cause of the beginning of my seizures.

Thanks for reminding me to keep a diary. I have done this in the past when seizures entered my life, usually during medication changes, but haven't done so recently.

I'm certain that fatigue is also a trigger because the end of the work week is always more likely to include seizure activity than the beginning. I usually "catch up" on sleep during the weekend - if I can sleep in late on Saturday or Sunday it helps a lot to keep seizures at bay. I remember having a sleep deprived EEG in my early 20s, but I don't think the lack of sleep was a trigger then. But, things have changed a lot in 30 years!

Thanks for the welcome, Nakamova.

 

[Julie Mc]

Hello! I'm new on here too. :/
I'm 45 now, & have been having all sorts of fits since I was 13. Way back then, I didn't know that when my leg started going all funny & jerking about, I was having a partial fit! Later, I became pregnant & had my first full-blown seizure, after that, I kept having them.
Now, it seems I'm going through the perimenopause. I didn't have a major fit for a year, only those partial ones, maybe because I didn't have a period during that time. But, now they've started again and my partial fits have moved up a gear too. Like you, I have them at that time when your either going to sleep or waking up. AND more so when I start my period. Its making me dread going to bed because I know these 'small' fits can lead into the horrible 'full works'.
I'm replying to let you know that you're not on your own with these. I'm taking Keppra, with Sodium Valproate thrown in too, but I will go back to the drs to tell them about the change I'm having. I'll let you know how I get on.
In the meantime, I'll quietly get annoyed at paying for tampons etc. (Now THAT gets on my goat!)
You take care.

 

[Wobblez]

Hi Pinkattitude,

Welcome to a great place to be =)

I have more seizures the week leading up to my period. You could research Catamenal epilepsy.

 

[jonsey]

Hi my daughters trigger is her cycle. Shes on keppra and lamactal and has the depo every 10 weeks. Big improvment when she started the depo , but noithing last for ever . Amy has been on keppra since febuary, and has experiecend two small seziures.We have had a bit of a tramatic time this last week . First dr absoultly useless , now our regualar dr has been pro active . Amy is going to see a gynie to discuss her hormones not sure when this will be. But at last after 6 years we are finally moving in the right direction. And the information received quite interesting . This is where he got it from (www.epilepsy.org.uk)

best wishes

 

[rich956]

Welcome to CWE.