Posts tagged seizure medications

The Sun Will Come Out Again

I love being at the lake with my Mom

This is in our front yard.

I felt like it was impossible for me to feel great again, last week.  I was so unhappy that I thought it would be this way now.  No matter what I said to myself I couldn’t feel hopeful inside.  I was very afraid and it caused all kinds of trouble in my body with Rett Syndrome.  I prayed, I talked with my Mom and Amy, I walked, I watched relaxing videos, I listened to soothing music, I went outside as much as possible, we went for long, relaxing drives, I listened to books on CD, I listened to sermons from church and nothing stopped how my brain was thinking.  I felt so crazy!

I decided to share this today because I’m almost done now with the seizure medication that caused all of this to happen to me, and I feel great today!  I never want to feel like that again.  I would rather have a seizure than feel crazy.  I don’t know if other people feel that way on their medication, but if any of my Rett friends do, I feel so sorry for them.  I have never felt well on the medications that are suppose to stop seizures, but this was the worst.  I think if I had to do it again, I would say No.  My Mom had me decide if I wanted to try the medication and didn’t start it until I said, yes, it was time.  I feel glad for that, but I feel really glad to be done.  We are seeing my Dr next week to see if she has any other ideas.  She wanted me to start anti-anxiety medication to stop how crazy I felt, but that made it worse.  

I’m eager to say something: In my life I have had many hard days with Rett Syndrome.  I have had days when I couldn’t stand to be in my body anymore, and I get discouraged.  I pray a lot for those days so I don’t feel so alone in my struggle.  I haven’t always felt joy in my life.  There have been many days that I can’t imagine a harder life than the one I have lived for 26 years. But then days like today come and I see how beautiful life is and I see that I have not been alone, that God has given me a great gift.  How He has used the hardest times in my life to give me understanding, courage and gratitude.  I know that God doesn’t like Rett Syndrome.  And I believe with all my heart that He didn’t create it.  That it’s something that happens to humans for some reason we don’t yet understand.  I believe that God has given me the ability to communicate my experiences for a reason, and today I am sharing some of those.  Only God can make sense of Rett Syndrome.  I’ve been surrounded by great, loving people.  My Mom and I have been through some very painful days together.  They have been hard on her.  But today, our lives are better and our spirits are happy.  We have many friends to thank for that.  People who have entered our lives recently and people who have been here with us through much over the years.  

I wanted to share one of my favorite songs that I composed when I was 16.  This is one from my CD, In My Own Voice.  It’s title is:  For Real Friends.

I hope you enjoy it.

One of my favorite friends who has Rett Syndrome. I have so much joy when I am with her.

It is always a lovely day when we are together. Both of these sisters has Rett Syndrome.

Love, Karly


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Carbatrol is Not For Me

Much has happened these past two weeks.  I have not been able to write because my body has had a reaction to a medication we decided to try for seizures.  I have never felt good on seizure medication and for many years, over 20 at least, I had about 1 or 2 seizures each month.  But for the past two years, they have been getting stronger and more often, so we talked to my neurologist again who wanted us to try Carbatrol.  It seemed fine at first.  I felt pretty normal.  She had us start on a really small dose and increased it.  Even then I felt pretty good until about week 5.  It was the worst I have felt in many months.  

I got so afraid and had so much breath holding and hyperventilating that I could hardly breathe all day.  I became so angry that I couldn’t be around people.  I was so agitated that I couldn’t sit still.  I felt like I wanted to leave my body, but I couldn’t!  I only peace I had was when I was sleeping.  I couldn’t even urinate.  It stopped that too.  I was afraid to be around people because my arms were swinging and I couldn’t stop chewing or grabbing.  I even remember throwing myself backwards.  It has been horrible for me, my Mom and Gregg.  My Mom tried everything thinking that I was just having some bad Rett days, but then over last weekend, she did some more research on Carbatrol and found out that what was happening to me was all of the side effects of Carbatrol!!  With Rett Syndrome, all the weaknesses I already had were made so much worse by that seizure medication.  

I’m being weaned off of it now and the anti-anxiety medication the Dr gave me to overcome the side effects of Carbatrol.  I have never felt so bad on a medication in my life as I did the past two weeks.  I’m so glad to know that I was not going crazy and that my thoughts about suicide were not me, but another side effect of that drug.  I have always been open about my personal struggles with Rett Syndrome on my blog, and I hope this helps others who are wondering if their daughters are affected by the medications they are on.  My body is very sensitive and I feel overwhelmed that the alternatives to seizure medications is seizures for me.  We have tried everything we have ever been told to do to stop them without drugs, and so far, no luck.  But I am praying along with some other friends, that we will find the answers, because a life feeling like I did, is no life at all.  

Love, Karly


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