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A Toronto Girl with Narcolepsy, My Story
Posted: Apr 8 2012, 06:43 AM

New Member

Group: Members
Posts: 1
Member No.: 538
Joined: 8-April 12


I was diagnosed with Narcolepsy when I was in my 30's after years of being told I was depressed and that is why I slept all the time. As long as I can remember I have always had to have a nap in the afternoon, I was always the one who fell asleep first and woke up before anyone. I don’t remember ever sleeping through the night.

I made some changes in my life when I turned 30 and decided one of them would be no medication. I started going off my medication and noticed I was more tired than usual but decided that was just the medication working its way out of my system. I finally weaned my way off the anti depressants, couple months later I started to notice that I would get so tired I could not control falling asleep. Sometimes didn't realize that I had fallen asleep until I woke up and a few minutes had passed. Very scary! I also started getting this weird feeling every time I laughed, weak facial muscles and legs. Even more scary!

I went to the doctor and explained the symptoms, he knew right away that I had a sleeping disorder and sent me to a sleep clinic.

I was diagnosed with Narcolepsy and Cataplexy along with all the other weird things that happen when you are that tired…Paralysis when waking up, vivid dreams, and hallucinations.

I was prescribed Alertec and Ritalin, and given some sleeping pills as well. They seemed to work for a year or so then they stopped lasting as long and I was taking up to 16 pills a day. Started falling alseep at my desk at work, was always extremely tired and couldn’t do much besides go to work and come home to sleep. My work, basically forced me to go off on disability to be also to find the right medication. I was off for close to 2 years and during that time the disability company tried everything to prove I did not have Narcolepsy. Sent me to so many specialists and for tests etc., and all to prove I did have it. They were making me jump through hoops so I went to my specialist and he sent me to a psychologist. He then referred me to a psychiatrist who's specialty was Cataplexy and Narcolepsy.

Over the years, the drug Xyrum had been recommended to me, but I am a single mother with a young daughter I did not want to be on medication that made me unconscious and unable to wake up if she needed me. This specialist explained that depending on the dose and the times I took the doses, it would be safe. My daughter was older and able to understand the medication and my sickness so I decided to try it.

First, we had to get all the other medications out of my system. Detox for almost 2 months, wean off the Alertek, Ritalin and sleeping pills. This was a horrible experience, nauseous, shakes, tired all the time and cataplexy came back. Couldn’t do much of anything for 2 months.

He then sent me for some clean sleep studies. The results, severe narcolepsy and cataplexy. I began Xyrum in June 2011 along with Dexidrine slow release.

It was as if I had a new life, I was sleeping - really sleeping - like NO weird dreams - no dreams at all! I wouldn’t remember anything, just waking up 2-3 hours later, rested and awake. It was awesome!!

One problem, my blood pressure went crazy. The salt in the Xyrum made m feet and hands swell up, and my blood pressure to go very high. Had to be put on blood pressure medication and have been referred to a heart specialist as I will be on this medication for the rest of my life and my heart (blood pressure) should be monitored.

I was able to return to my job in October, to find out that I had been downsized and no longer had a job or benefits to pay for these awesome meds. Now what to do?

I looked into every individual or government plan available and none cover this drug that saved my life. The only plans that would cover it is large group plans and until I could find a job - which was going to difficult since I had been off on disability for 2 years and my employer would not be able to give me a reference as none of the people I worked with were still employed there. So I was screwed. No meds, can't work! Disability for the rest of my life???

I then went to my doctor and asked him for help, he called Xyrum and Xyrum called me and asked me to send them a letter explaining the situation and to provide my tax returns. They explained that they could try and get the medication subsidized. I received a call back within a week letting me know they would help until I got back on my feet and found a job with benefits.

Now that was the Xyrum covered ($1100 per month). Benefit plans will cover the Dexedrine but not the Dexedrine Slow Release. Any drug that does not have a generic version is not covered but government plans. In the end, it is costing me approximately $150 per month for my medications.

I never realized how much my Narcolepsy was controlling my life. Had to consider my meds and my sleepy times of the days before making any plans. Turned down weekends away, invitations to celebrations and functions because I knew I would be too tired to get home. My family and friends have always joked about my sleeping disorder and just accepted it.

Xyrum and Dexedrine is my saviour, and if you have not looked into taking it…you should!

Posted: Jun 12 2012, 08:57 PM

Sleep Addict

Group: Respected Adviser
Posts: 87
Member No.: 364
Joined: 9-May 09

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