Category: "Narcolepsy/Cataplexy"

Swinging for Sleep Campaign With Nicole Jeray

Link: https://www.narcolepsynetwork.org/get-involved/swinging-for-sleep/

Narcolepsy Network has teamed up with long time loyal Narcolepsy Network member and golf superstar, Nicole Jeray, LPGA Touring Pro. Narcolepsy Network is soliciting your support for a unique fundraising endeavor, “Swinging for Sleep”.

Jazz Pharmaceuticals will donate $25 for every birdie that Nicole makes on tour. And, you can pledge any amount you wish to also donate for every birdie that Nicole makes on tour. Or, just make a one-time donation of your choosing.

Personally, I've pledged $0.50 for each birdie.... :cool:

I had a Spinal Tap

...though I don't know why, but hope that I'm not in the 11.5%

This all started when I had a January 13, 2011 appointment following my PSG/MSLT of December 2&3, 2010. The finding of the MSLT was 'normal', and there was no room for discussion or questions on it with my sleep doctor. But, while I was waiting on the MSLT results, I got a letter dated December 14, 2010 from Stanford saying had the DQB1*0602 subtype.

After the appointment, I was to get a referral to somewhere like Stanford and maybe I should see a Neurologist because maybe I'm actually have seizures and not EDS + sleep attacks. When I asked what 'somewhere like Stanford' might be, the doc said Stanford is the only place he knows so that's where. So, why did he say 'somewhere like Stanford' if he doesn't know any such place.

But, the whole Stanford thing seemed to stall after I was told that I needed to call my insurance and tell them if it would be covered...and not just let me tell them there that it would be covered. Somehow leaving and then saying that I had called my insurance was better than just saying it? :??: Anyways, I called, and found out that it would they would be covered as an in-network provider (so even better than I had thought).... But, when I called back, the doc said that he had been thinking and probably wouldn't do the referral now.

The following week, I got a call from his office saying they had called the number of Stanford...and it was not in service, and wanted me to find out the correct number. I provided them with the number that was on their website, the URL being part of the letter that they had gotten the number they had called from. Though later it occurred to me, that Monday, January 17th was President's Day. Which was a University holiday for me, and likely was a University holiday for Stanford....and I found out that it was, and they were closed that day.

And, then I heard nothing..... I contacted Stanford a few times after this, and they average about 3 calls from medical professional each day but they don't recall having gotten any phone call from mime.

After a couple months, I decided to take it upon myself to do the second thing....and found a nearby neurologist that I wanted to see. I had first appointment with him, on March 28, 2011, during which he said he wanted to see the MSLT data for himself since it looked borderline and I finally got something for my RLS and he wanted to run a bunch of other tests, such as MRI and then he would see me in about a month and after he get's back from vacation.

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I survived a PSG/MSLT

On December 2nd, 2010, I went in for a PSG/MSLT. 2 years ago, on December 1st, 2008, I had gotten my first PSG.

Originally, I was scheduled for 9pm, but they moved the time up to 7:30pm...which was the same time as first PSG, though it was a much bigger inconvenience this time around. Partly because I was going to be bring more stuff with me, though it turned out that I only needed my cpap mask and not all the other stuff. But, this time I brought my own pillow...specially, I brought my Regenesis buckwheat pillow. But, the other hassle is that I don't move as quickly as I normally do, due to a broken toe.

But, I made in in time. Though I was getting pretty angry/frustrated by all the things that had to go wrong as I was scurrying around trying to get out in enough time to hobble over to the sleep lab.

The night before when they called to confirm my appointment, I finally asked if there was internet access there. There isn't, but being that I'm with K-State...I should be able to pick up the network and use that. So, I brought my laptop.

Getting wired up wasn't a huge deal, wasn't as bad as I remembered the first time being. But, I heard my watch chime 8pm while I was still getting wired up....so I guess I was going to be a little late to the Narcolepsy and Hypersomnia chat on TalkAboutSleep.com, but I made it in and hung out there until it was over. And, then it was time to get to the PSG part of my stay.

Full story »

What is an MSLT?

An MSLT, Multiple Sleep Latency Test, is a nap study. It is used to see how quickly you fall asleep in quiet situations during the day.

The study is based on the idea that you should fall asleep in a shorter amount of time as your feeling of sleepiness increases. The MSLT charts your brain waves, heartbeat, records your eye and chin movements. The study also measures how quickly and how often you enter the rapid-eye-movement (REM) stage of sleep. Results of the nap study are routinely used to detect sleep disorders.

The study isolates you from outside factors that can affect your ability to fall asleep. These factors include such things as the following:

  • Temperature (too hot or too cold)
  • Light
  • Noise
  • Activity

Other factors that can still affect the results of the study include the following:

  • Anxiety
  • Tension
  • Depression
  • Age
  • Caffeine
  • Drugs and medications
  • Amount of sleep prior to the study

The use of stimulants needs to be stopped for two weeks before the MSLT. Your sleep specialist should help you properly schedule the use of any other medications.

An MSLT is used to evaluate people who are thought to have narcolepsy. Most people with narcolepsy fall asleep in average of less than fire minutes during the test. Some take longer than five minutes to fall asleep. There are also people without narcolepsy who fall asleep in less than five minutes. The test also counts sleep-onset REM periods (SOREMPS). This is having REM sleep very soon after you fall asleep. REM sleep is normally the fifth and last stage of each sleep cycle. Having two or more SOREMPS in an MSLT is usually the indicator of narcolepsy.

An MSLT may be used to see if a person has idiopathic hypersomnia. These patients will fall asleep easily but do not have SOREMPS.

An MSLT will reveal a broad range of time in which it takes normal sleepers to fall asleep. Normal sleepers usually fall asleep in an average of about ten minutes during the five naps of the MSLT. Due to the wide range of normal times, the results alone are not enough to diagnose a sleep disorder. Doctors must also consider other data, tests, and medical information.

Sleep Disorder Support Group at K-State?

Link: http://www.kstatecollegian.com/news/student-learns-to-juggle-disability-college-life-1.2210101

At some point after my diagnosis for Obstructive Sleep Apnea and my continuing problems that seemly too perfect CPAP compliance didn't solve, I wondered about the existence of a support group in town.

Eventually I found the AWAKE group, but that doesn't meet very often or regularly.

Then I started to wonder if there was or could be a support group at Kansas State University...not sure if that was before the word Narcolepsy was raised with me....

But, then the article linked above ran in the K-State Collegian...and in the comments to the article was the thought of a sleep disorder support group for K-State. So, I decided to send Megan Reynolds an email about the possible formation of such....along with a bit of my plight :)

The idea got tossed around, we talked about meeting, but neither happened before the end of the semester. And, I wasn't sure about bring it back up in the fall. But, things happened. I've been meeting people online, learning more and more about the subject, and then I was contacted via the NRG side of this site about whether there is a sleep disorder support group in the area. And, then that prompted me to bring it up again.

During the early exchange, Megan had said that she wanted to meet me....but I'm shy, so I avoided that part &#59;) But, yesterday I get a call...she's looking for me. And, I went ahead and said where my office is (co-workers commented that I shouldn't have done that :p ) But, we finally met. At least I'm pretty sure we did.

So, I finally made the trip over to Disability Support Services to make my interest known, and maybe further the possibility of the group happening. Perhaps something will come to be later this fall. Fingers crossed.

Not sure what the time frame is for me finding out why I still have most of the symptoms I had before CPAP, along with a bunch that I had forgotten that I had. That the seeming perfect resuls of being on CPAP....