Main » July 2004
July 29, 2004
Looking Forward To An Interesting Experience
I am hanging around here this week kind of waiting for next Monday to get here. That's when I go to the hospital to the Epilepsy Monitoring Unit (EMU). I need to be there at 7am! I am just so hoping that I don't run into any "problems" like I did before I went the first time to another hospital a while ago. I don't know if I could honestly handle that again. It's going to be a long week in the EMU since I won't be able to leave my room for safety reasons. I'm going to take a variety of things to occupy me, but I'm sure I won't have enough! I am looking forward to an interesting experience!!
Because of all that's going on, my 81 year old Mom and I have spent some time recently discussing all this and I'm continuously trying to help her understand what I'm doing and why I'm doing it. I'm sure she's scared for me. But she's supportive, like she always has been!! The only family member I have right now who cares. But that's another story.........
Posted by Rhonda at 5:34 PM
July 23, 2004
How Hormones Can Affect Epilepsy
Well, I got a call from that first hospital to go their Epilepsy Monitoring Unit (EMU), where they decrease meds so they can observe you having seizures. You are hooked up to an EEG and also on a video camera 24/7. This is to know where they need to operate.
I packed my clothes and other items to take so quick and then a few hours later got a call from that hospital informing me there was a problem with my insurance. Someone at this hospital told me when I was there several months ago that they would check into my insurance for me; little did I know that meant waiting 'til the last moment like this ! I don't remember the exact words, but I was out of their network, so my insurance would cover part of their costs....and he even stated that they were considerd a bit higher priced than other hospitals.
Well, keeping in mind I just recently went through bankruptcy....medical bills hanging over my head was not a pleasant thought (my lawyer wouldn't have been pleased either). And I knew none of these upcoming medical bills were going to be small ones !! My insurance company tried to help me out, but the hospital wasn't willing to "bend". I thought it would be the opposite. Nice to know my insurance company would be there for me.
I had to call my neurologist about this, he wanted me to try and get this hospital to work it out with insurance...I tried, but they weren't willing at all. So I got another option from him and got an appointment set up there !! I went yesterday and had a GREAT appointment with a new Neurologist for me there. I started out giving her my background, how my epilepsy/seizures started and how the most recent problems with Catamenials/hormones started. It seems like things are finally moving for me !! I will be going to the Epilepsy Monitoring Unit(EMU) at that hospital, here in Columbus where I live. I'll be there for about a week, decreasing my meds so they will hopefully see some seizure activity. They need to determine where it's happening. I'll be hooked uo to an EEG 24/7 and also will be on video cam 24/7. I'm going in a few weeks and she said all the tests for surgery will be done in six months ! If surgery is still an option for me, I want to wait 'til summer. I work in a school setting and my sick time is minimal due to that car accident 4 yrs. ago....never have been able to build it up....other things going on. It would be great to be ready and able to schedule it for the beginning of summer. That would give me lots of recovery time when I'm off work !!
I am still kind of in shock....finally have an idea when I could have surgery for all this...before it was hard to imagine. Most people have this type of surgery because of seizures....me I 'm looking into it because of my hormones that have wreaked havoc with my seizures. Makes a bit of a difference I think.
Another thing this doctor was willing to do for me is to put me on a med for depression !! I explained to her I felt like I was in a "constant low-level depresson" all the time and had been like that for a long time. My GP was afraid to put me on anything for it due to my seizure meds
It will be so nice to keep you updated on how things go.
I just wish I didn't have to look into surgery...but it's the Catamenials/ hormones that have forced me to. I just can't imagine living my life like this forever. I have no control over it at all. I was telling them how someone online asked me what I liked to do in my free time and I really had to think about it...........that really hit me, that I shouldn't have to think about it and I knew why I did....I was so used to driving where I wanted to go, when I wanted to! When I was out and about I'd find out about other thing I liked....never got bored !! I'm starting to hate my home now...that's not good !! When I was explaining that to the doctor (and two students who were observing with my permission), I couldn't finish what I was saying without being interrupted by someone else (person who took me there).. I don't think they wanted to hear what I was saying, you know...it wasn't the most "pleasant" thing I suppose, but I was being honest to this doctor and it was my time with the doctor, although I appreciated them helping because they can also give good info on my seizures that I can't.
Posted by Rhonda at 10:59 AM
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 at 11:27 AM
July 16, 2004
The Beginning Of A Long Journey
It's hard to know where to start with all this...it's been going on with me for so long now....I guess the beginning is the best...right?! Well hope you're ready for a long one!
I have had epilepsy since I was about 2 years old, due to having encephalitis when I was 2 months old. I had an extermely high fever for a long time. I'm actually lucky there was no other damage done. I lived a relatively "normal" childhood having petit mal seizures that were well controlled with meds and I went to my Neurologist for my yearly check-up. When I turned 16 my neurologist had no problems with me driving and so I started driving with no problems ! I even was able to stop taking my meds for a couple of years when I was in college and I had no problems for a while. However, when my epilepsy came back it made sure it got my attention !! I had 3-5 (don't remember it's been years!) grand mal seizures.........my poor mom had to deal with those. I'm sure that aged her dramatically. We had tests run...found no reasons for those and I never had any more of them. As an adult I have had complex partial seizures with no auras and they have been controlled with meds as well.
Things changed drastically 4 years ago, when I was 40...driving home from a nice lunch when I had a day off from work. I was almost home even ! When I came out of the seizure I had gone into a large tree on the side of the street I was driving on and I was in so much pain I was screeming so loud my eyes were closed. When I realized what MUST have happened...and I was in shock..I wanted to know if I had hurt anyone else. I had to clench my teeth so I could stop screaming and open my eyes. Well, the one good thing was that I had driven off the right side of the road and nobody else had been involved ! My left leg hurt so bad I didn't know what had happened to it. I couldn't stop screaming with my eyes closed...while they cut my clothes off --with people around watching...I hoped they were enjoying the show :( that day I didn't care--. They covered me with a blanket and finally figured how to get me out of that very small car. One of those nice emts sat in there with me telling me what was going on while I screamed, it did help to know though ! They got those "jaws of life" out to get me out of the car. Finally lifted me out and got me into the squad to transport me to the hospital. OH!!!! I felt every bump they hit on the way...my left leg was sooooo sore. I had no idea what had happened to it, I just knew how bad it felt
Well, at the ER they worked on me for a while. I don't remember a lot. By that time I had just about had it. I sure wasn't very pleasnt to them. I'm sure they are used to that. I do remember one thing they did before they sent me to surgery was to twist that left ankle back "the way it was supposed to be" (their words). I heard it "crack", but it did'nt hurt when they did it and I felt so much better I was finally able to stop screaming!!!! I think I even sighed...may have said thank you or something before either I just passed out or they knocked me out for surgery. That's just the last I remember. When I woke up I sure looked different!!
I woke up in a hospital room with a cast on my left leg and they had my right hip immobilized. I looked pretty bad!! It was scary to me!! And there was nobody there...no friends or family. My older sister did come in soon and stay a few minutes. I saw the orthopedic surgeon later and he explained what he did and what still needed done.
He said I was lucky! Sure didn't feel like it!! But I listened to him. He had worked on my ankle and on my lower leg...ankle has pins in it and lower leg has two metal plates in it. I was thinking to myself "If I needed that much repair work done....no wonder I couldn't stop screaming like I was". He also needed to go back in and clean the site...then he would put on a more permanent cast for me. He was explaining that I would be off that leg for a while...no weight on it...also the hip was dislocated....trying to get it back where it should be without surgery...that meant staying in bed....boy this was getting worse!! When he left I couldn't help but cry. This did not sound good. I couldn't imagine why I had a seizure which is why this all happened. I also had to think that the man I had just started to get to know was going to run when he heard all this....I'm a mess!!
I went for surgery the next day, when I was out of it, the doctor saw me again and gave me more info about what's going on with me and what to expect.I wasn't ready for this!
He did the cleaning as planned, but now I was going to have to stay in bed for at least 4 weeks!! This was going to mean going to a nursing home that does rehab. Oh my God !! I was NOT expecting that!!!!!!!!!!! WOW will my relationship be over with now...who is going to stick it out through tha?!?! Well, we figured out where my insurance would cover for me to go and got it all worked out. They got me transported there and another part of this story begins.
I know I haven't gotten to the part about the hormones and epilepsy but I really felt I needed to explain the whole story. I will get to that part...soon!! I promise!!
Posted by Rhonda at 9:14 AM
