July 18, 2004
The Beginning of My Journey With Hormones and Epilepsy
Well, I got to the nursing home and started an interesting experience there. It was supposed to be four weeks and ended up being six weeks. Not exactly a "fun" place to be. I even had problems getting a phone put in....that was hard for me because I felt I was stuck in bed and what if something happened I had no control over? I was so used to being the one who cared for others...not used to being on the other end of things!!!! This wasn't going to be fun...or easy for me.
I got through all that though and when I got home it was interesting. I had time on my hands sort of as I "hopped" around my house with my "boot" on and using my walker.....boy I must have been a sight ! I kind of wish I had some pictures of that...in a way I'm glad I don't...LOL! Don't think I'll ever forget it. I was watching Oprah on tv one day and she had a doctor on there who was talking about perimenopause. That's something my mom never talked with me about. Well, she got me started thinking that maybe I was in perimenopause and maybe I had been for a few years!!
I got online and did a search and as I did that I found out some info that shocked me...you know how sometimes you get info in a search you weren't really looking for?! I found out something about Catamenial seizures and started reading it....they're hormonal seizures that occur just before, during, or just after a woman's cycle. I started thinking and I gave my Neurologist's office a call after I wrote some things down. The woman who works in the office is so good about giving the doctor information. I asked her if she had at least 5 minutes and if not could she call me back when she did? She said she did and we started talking. I explained about what I'd seen on Oprah and then looked up online. I told her how I had been the last few years. I had not been able to wear sweaters or sweatshirts in the winter...only long sleeve tees. I had no idea why ! If I wore anything warmer, I would break out in a sweat !! You have to realize I wasn't that "old" that happened when I was about 38...never thought of menopause and never heard of perimenopause before !! I asked her about the Catamenial seizures. Told her I knew maybe there was no answer to my wreck, but that I really thought my seizures were under control and it did bother me that it happened...she understood and would give all this info to the doctor.
She got back with me the next day! My doctor is so good about getting back with me...I appreciate it soooo much! He agreed that it could be Catamenial and wanted me to increase meds around the time of my cycle....they were regular thank goodness....at least perimenopause hadn't changed that....YET!! We went on like that for a few months...then those darned hormones had to mess things up again...my cycle, which had been like clockwork forever, had to get messed up! So I couldn't increase meds as needed. At that point I needed an OB/GYN who would work with us on this. I asked my GP (a friend of my Neurologist!) to refer me to one and started there!!
I got the OB/GYN for the first time and was real nervous. My past experiences had not been good. This ended up being a pleasant experience and that sure was a good thing. I talked with him and explained what was going on. He was willing to work with me...and even communicate with my doctor which was a BIG deal to me...that was like a fantasy for me...never dreamed the doctors would all communicate together like they are!!
He ran some tests on me and found out there was nothing wrong in there and then decided how to try and work on this. He decided to try a birth control pill. He said my cycles were pretty strong and this would help to control them for me.....wow, he thinks this is strong, he should have seen me several years ago ! I was four times worse than this, I just didn't "bother" to go to the doctor about it...figured I just had to "live with it". Dumb, huh?! Oh well, can't change it now.
Well, we got the birth control pill started and it has made things a bit "easier" I will admit. I have gone 2-3 months at a time with no Catamenials, but that's not good enough !! Because you see after that initial accident I had been approved by my Neurologist to drive a couple times in a little over a year because I had been seizure free for 6 months and shortly after I started driving I had a seizure and another accident...in one accident I messed up my left wrist and had to have a metal cast put on it...odd looking thing, but it did work well!! My wrist is fine now! It's in a LOT better shape than that poor ankle of mine, so I guess I can't complain too much about the 2 scars fom the metal cast (although I do sometimes!).
I have been on the pill now for a litle over a year...and it has not helped the Catamenials very much. I have had times where I skip 1-3 months, but that is not good enough. For "control" you have to be without seizure 6 months where I live...can be different other places. The pill has controlled my cycle a bit and that's good.
I have had more problems with seizures...some are not Catamenials. Some are just my complex partials not being controlled by meds........that I really don't like and don't understand!! I've had them happen at work, once I even fell down...not sure what type to call that one! They are always very short(1-3 min.), but that's all it took to have that major accident that started all this!
I have gone through so much because of this. Due to being off work, I ended up in major financial problems that led to bankruptcy. I had a terrible lawyer first time around who "drug it out" for a year. The second lawyer finshed it in about two months !! Imagine having to come up with money for 2 lawyers when you're going through bancruptcy anyhow !! Relationships are hard to keep up with all this, that's for sure. Getting to and from work is always an issue since I can't drive. People around here haven't been too willing to help. I've often wondered if I'm going to have to retire early. I am so close to retirment age I would hate to lose my full retirement after all these years. I don't want to stop working yet, not because of a transportation problem anyhow ! I went through several different sources to help me get home. I have had a way to work over the past few years thank goodness, but getting home has been crazy.The cabs here are horrendously expensive...$20 to get to work or get home !! Eventually I have gotten some help, but it's terrible having so much trouble getting home from work!!
Well a while ago I saw my Neurologist in the midst of all this and he had a suggestion for me........brain surgery. I think I surprised him when I was VERY open to his suggestion! The reason was because we just hadn't gotten things under control yet. I wasn't arguing. So, I started on another LONG journey thanks to those blasted hormones.
I never dreaded getting older and going through all this menopausual stuff I'd heard of. Boy, how come I had to get hit by this "other stuff" that would mess up my life in a big way?! Sometimes it just doesn't seem fair.
I went to one hospital here in Ohio to see the Neurologist my Neurologist referred me to. I also had an EEG done there. I was to go there for a weeklong
stay, but something "came up"....will get into that next time !
Rhonda
Here's that metal cast I told you about...
hard to describe to people.
Posted by Rhonda on July 18, 2004 11:27 AM