Tags: mslt

Narcolepsy Network Conference 2013 in parts ... 3

Sunday

So, breakfast was a 7:30am…this time I went with all the bacon I wanted right away, instead of going back for seconds. I wish there was an easy way to have bacon like this at home, as well as finding a way to be more consistent of at least having breakfast in the morning. With the importance of it being protein focused (and less carbs…which my breakfasts tend to be when I’m at home.)

Breakfast was followed by breakout sessions.

The first session I went to was “Narcolepsy and Disability Law", which was something a lot of people were interested in, though it wasn’t as interesting once it started. Perhaps because it largely focused on driving.

Where I had on my own given up driving in large due to my problems in staying sufficiently awake while driving, and since I had applied the ethical responsibilities of being a professional to my life well before I earned my designation of “Professional Engineer". And, consider myself a “Professional System Administrator", even though there’s a lot of debate on whether its where our profession wants to become or what it really means. Even though we belong to an organization called LOPSA (League of Professional System Administrators)….

Anyways, at one point the discussion touched on the idea that if you’re trying to find out if you have Narcolepsy, could you be cleared to drive by your doctor but later get into an accident that leads to diagnosis and then sue that the doctor failed to diagnose you sooner and had cleared you to drive on the basis of his failure to diagnose you, etc.

Though I didn’t hear the answer on it, though there was mention that there have been cases where of such suits being filed….but no mention of outcomes. Which was interesting, because in the years prior to finally getting my diagnosis, I had considered getting a license and a car, and pay for some really expensive gas….and see if it results in me having another accident that finally get’s me diagnosed, and maybe get a lot of money from a malpractice suit.

Though I decided that it would be too expensive, and too risky, to try that experiment. Plus I still consider myself a “Professional” in all aspects of my life, even if nobody else does.

Not sure what else was all covered anymore. Kind of wonder now if I shouldn’t have caught one of the other sessions at that time instead.

Next, I went to “Integrative Mental Health: A New Approach to Depression and Anxiety” by Dr. Rubin Naiman. He’s someone I find interesting, especially since having supper with him before any of his sessions at the NN Conference in Las Vegas. And, conversations that continued afterwards. Plus I found some of the things he had talked about in past sessions interesting, some of which I wouldn’t have considered attending otherwise.

Again there was some interesting stuff in this session, even if I can’t recall any of it at this particular moment. I did hear from others during the conference that the weird memory problems that I’ve been having a lot lately aren’t uncommon. Just as I had never heard of the term “Brain Fog” until the FDA meeting, and it came up often during this conference and it certain describes what I’ve been experiencing more and more now.

I had heard people mention that they used to have excellent recall in specific areas when they were younger, but now are frustrated with the trouble they have now…. I used to have a thing with dates when I was younger, now it is starting to become a real problem. Especially the kind where I get my days wrong. Like I started Thursday, knowing that it was October 31st and that it was Thursday (as my Xyrem shipment was to appear later that morning)…but when I got out of the shower, my mind had switched the day to Friday.

So, I dressed like it was a Friday….nothing registered that it wasn’t when FedEx and later UPS showed up…and I removed the entries from Delivery Status (which I include the Day/Date of expected delivery as part of the entry name). And, I went through the whole morning thinking that….almost brought it up on IRC, wondering where Friday lunch was going to be, when it finally clicked that it was Thursday. (though the mess the migration to office365 made to my master calendar at work, didn’t help…since I got the reminder of my Thursday Xyrem delivery on Wednesday morning….and notification that Friday, Nov 1st was a University holiday (instead of the fact that Black Friday is a University Holiday…) Also its annoying that everything has a reminder by default now, not just the meetings that I had set a reminder for.

Turns out OWA is incapable of having a default reminder setting of none. >:XX

I forget if I wanted to request the information that Dr. Naiman had said we could email him for during his session.

Next was the “Medications Panel"….which was a bit better as panels go, though can’t say that I learned anything new that I needed to learn. Though wasn’t sure which other session I would’ve gone to at this time slot. If I had to pick one of the others….I suppose I would’ve gone with “Survey Results on How Women with Narcoelpsy Perceive Pregnancy"…. Perhaps because, I sometimes think that if I were to break my singleness, that it would be through finding someone that get’s me because she’s also a PWN, etc. Though I don’t seem to be getting any younger…so the finally starting a family now that I’ve been diagnosed seems to be less and less likely now.

Now its time for lunch, where I can’t help wonder when they are going to bring up the rest of the membership meeting. But, instead they do all of the drawings for the raffle, and then have Dr. Thomas Scammell give his talk on the “Neuroscience of Narcolepsy". Which covered got more in depth about the two systems associated with sleep/wake in the brain…including some that Hypocretin is the master switch for the wake promoting systems in the brain, and the closest system it affects, also in the hypothalamus, is the Histamine cells, and another look at this area of research. Evidently like Orexin/Hypocretin which independent groups discovered in parallel…there were separate researches that had similar discoveries in Histamines. There was also a plug for a new site that Harvard University was going to be putting up about Sleep Medicine in November, though he wasn’t able to play a sample video. It had worked on his computer earlier that day, but wouldn’t work during…and rebooting didn’t help.

After this was done, there was a quick mention that the rest of the membership meeting was going to be in Windsor C. The result was like 72% (where 66% - 2/3’s majority needed to pass bylaw amendments) passing both bylaw amendments. Plus ~91% for all 3 people running for board to get in.

Which while controversial, the outcome wasn’t unexpected. Hopefully, things are back to what’s important….though there’s some rumors that there’ll be more to come next year….

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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 »

Sleep Diary Spreadsheet

With an impending PSG/MSLT (December 2nd, 2010), and a particularly disrupted night's sleep recently...I got to thinking that I would start my sleep diary now. Rather than wait until the requested 2 weeks before the PSG/MSLT.

Of course, the sleep lab provided a sleep diary on a printed sheet to fill out. Which means either I fill it from memory now and then, or carry it wherever I go. If only there were some way to, say, use a computer.... :hmm:

I did a quick google search, and all I could find were PDF files. Surely somebody else has thought of this? :?:

So, looking at the provided sleep diary sheet from the sleep lab, I sat down and created a sleep diary spreadsheet using OpenOffice....using my laptop (Ubuntu 10.04LTS) [which when at home is on futon in front of TV, but I'll be at Chicago TARDIS the weekend before the PSG/MSLT]

:!: SleepDiary.ods :!: BlankSleepDiary.ods :!:

I opted to leave it in the default format, so that I won't have to deal with OpenOffice asking if I'm sure that I want to not use OpenDocument format.

I then saved the file into my Dropbox folder and created a link from my desktop to it. I can now update my sleep diary wherever I might be.

Such as living room computer (Windows XP Professional - OpenOffice), or computer next to bedroom (Ubuntu 10.04LTS 64-bit Server), or computer at work (Windows 7 Professional - LibreOffice).

Liking the result so much, I've decided that I should share it. &#59;D

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.