2 replies to this topic

[princy]

I'm going to give you the somewhat nutshell version of my story before I question my treatment since I'm a new poster and I am really looking forward to receiving the best advice possible. As anyone would, I assume!

The cataplexy started when I was seventeen years old, straight out of high school. It was very, very seldom... an occasional laugh with a friend would be the only trigger, and they were such weak attacks that no one even noticed them and I was sure I had my dirty little secret under control. At the time I had no idea what they were and to be honest, they scared me to death. I was seventeen years old and becoming paralyzed on random occasions for no reason. I actually thought I had a brain tumor for a while! By the time I was nineteen they were a more regular thing. I still hadn't seeked medical advice out of pure fear, and though my friends knew about it from witnessing it often I hadn't told my parents. At twenty-one it became so bad that my job noticed. Every time I laughed, I hit the floor. Or if I was sitting my head hit the desk. They all noticed it and asked me what was going on, but I brushed it off for a while. Then one of my co-workers saw a special on television about narcolepsy and the symptom of cataplexy and came into work to tell me about it. I had never really thought that my crap sleeping might be connected to my falling. I thought that I was just twenty-one and pushing myself a little too far, and that was why I was tired all day and waking up constantly through the night. I finally sought help last year from my general doctor, who was very angry that I had gone so long without telling anyone about my falling. His first thought was epilepsy, but since I had known about the narcolepsy/cataplexy connection and had done lots and lots of research since my co-worker told me that might be it, I knew it wasn't that. I was sent for an MRI and to a consult with a Neurologist. My MRI came out clear (of course, because I have narcolepsy!) and my neurologist sent me for a sleep study and a consult with a pulmonary doctor. It was no surprise to me when both of my doctors informed me that my sleep study proved I had narcolepsy. Though I complained of EDS and being up and down all night, the only prescription I was put on was Lexapro to contain my cataplexy. It took just around nine months for the 10mg to lose it's affect, and I've been about 15mg for about six months and it is already losing it's touch. My neuro once mentioned the possibility of a stimulant for the EDS, and Ambien for night, but when I questioned it again he wouldn't budge on giving me anything new. Please note that this is also the doctor that needed to pull out his medical book when he found out I might have narcolepsy, because he's never dealt with this before.



I just feel like there has to be something better, and that my doctor is low-balling it because this is new to him. I understand that and I do not hold it against him, but I'm thinking it may be time to switch doctors/treatment.



Any input would be greatly appreciated... I don't have many people to talk to about this because my family doesn't understand it very much (my uncle whom I live with still swears I am just "tired" from being on the computer too much, what does he know?), and my friends don't understand it at all except that when we go on vacation not to wake up and let me wake up on my own!



Thanks for your time everyone.

[greatbig47]

princy,

I think most everyone can relate to what you're going through...
Here's what I would do...

1. If a sleep specialist has diagnosed you with narcolepsy, your friends and fam should respect and support you. No if's, ands or buts.
I know family and friends can be ignorant, so you can either educate them or save your breath. Perhaps having one of them sit in on a Doc's appointment would help. I've seen this work.

2. If you have narcolepsy, and your doctors hasn't mentioned provigil or xyrem....bring it up. They are major life changers for us. If they refuse to talk about such "demon drugs", find one smart enough to know what has a well proven track record to work...like provigil and Xyrem. You are soooo worth the best available.

3. get to know some of the folks on this board. Most of us have had to deal with the exact same issues you are going through.

Our thoghts and prayers are with you....
Be better than well!

-Stu

[xiola23]

I'm currently not on any medication simply because of lack of health insurance (only for the time being)....but I have to say that there are many anti-depressants out there that will help lesson the cataplexy attacks. There are many side effects and withdrawal problems with these types of drugs, so beware and just discuss these things in detail with your doctor beforehand.
I would also look into finding a very reputable Neurologist specializing in Sleep disorders. The road to finding the right medicine can be very long and frustrating....so the more research and questions that you ask and the more detail you give, will help lesson the time frame.

Hopefully you will have some relief soon. In the meantime, keep stress free and get plenty of rest and relaxation...Blessings!