I just had to reply to your post about hormones and menopause... as for me, I had been on Dilantin and well controlled for many years, having only 3-4 CP in a year at best and very mild. In fact, in 15 years of marriage, my husband had never even seen me have a seizure. That was how good my seizure control was. When my seizures decided to escalate in severity and frequency a few years ago, it was associated with the onset of early menopause. No amount of drug manipulation had seemed to help me, and I saw a Gynecologist specializing in catamenial seizures. I am taking homones now in addition to my Anticonvulsants (Oh, joy). I was averaging 12 seizures a month before menopause, and now its more like 2-3. I think the worse part was that I was told menopause was going to be rough because with the fluctuating levels of estrogen in my body, I might expect poor control of my seizures. That's exactly what happened to me. So, in addition to having the hot flashes and waking up in the middle of the night sweating, I was also having all these intense CP seizures that were much more severe than I had ever experienced. I'm happy to report that I HAVE lived through menopause, and although the seizures are not under as good control as before, at least they are a lot better than when I was going thru hormone hell! Glenda
I'm 46. Menopause started with my periods being just irregular and having a lot of backaches. This went on for at least 6 months and when my seizures started to get worse... I knew something was lurking around that wasn't good. My twin sister hasn't gone thru menopause yet. (She doesn't have E - double lucky). My mother died of lupus at age 46 and didn't go thru menopause.
Yes, That's right about menopause being a pattern in women in a family. I can just tell you that with all the women that I've talked to about menopause, it's a wonder that anybody recognizes it in the first place because it never looks the same in anybody until most people get hot flashes. Some women are lucky not to get even that! A good friend of mine went thru menopause at age 32 if you can believe that. My neuro told me if I went on hormones it would probably help me with seizure control because mine were so sensitive to the onset of menses, but unfortunately, I feel that the consequences of the additive effects of my anticonvulsants and hormones are contributing to this ever present headache problem.
If you are presented with the issue of taking hormones, then make sure you know about possible side effects too. I wish my body wasn't so sensitive to these drugs. It's taken me over a year to just get over the nausea and lethargy with lamictal and now I am starting to feel that zonegran is the same story. Sometimes I'm a little desperate when I have a bad headache for 4 days straight. That's the time when I want to get rid of the drugs one by one. I've often wanted to try to do without the hormones to see how I would feel- but would the seizures be worse? Heck if I know. But like anything, there are two sides to every coin- on the days when I don't have a headache, I feel thankful that I ONLY have 2-3 seizures/month instead of 12. Glenda
My name is Sally amd I am 47 and have been going through the change for 2 years now only having had 4 periods in that time.
But the worse thing is that my Epilepsy is terrible at the moment,very frequent and not at all controlled.Up until this I 'd gone for 11 years without a seizure and had even stopped all AED's.
I'm feeling desperately unhappy,tied to the house and very lonely so was SO pleased to read these posts here....at least I know there are others suffering for the same reason as me.....menopause and hormones!!!