Category: "Sleep Apnea"

NN Conference 2014 ... part 0 #nnden14

Traveling to this year’s conference seemed to be more challenging that previous years. Not sure if it has been the steady increase of entropy and the proliferation of piles. Or the added joys of my Ataxia.

So, way back in May, when I was trying to decide on what nights to book at hotel….I was looking at what kind of flight itineraries there were available….since it affects whether I would want to fly in the day of the conference (or more likely the day before the conference…to at least start it off with one good night of sleep :zzz: ) And, whether I would be looking to fly out the day after or stay an extra day of nothing. Had done the latter for the 2012 Conference. It was kind of boring that extra day, though it was nice than when I had exceeded my sleep debt and had slept through my alarm after the 2013 Conference (meaning no hotel breakfast before trip home :..( )

What I found was that flying out Wednesday was substantially cheaper than Thursday….more than enough to justify the extra night at hotel, etc. I should probably have taken Monday off….I should also probably have started packing at least during the weekend before. Instead I left it to Tuesday…and didn’t really start until after 6pm. (with a 2 hour break to whip up supper and sleep, after a little too much time playing “Doctor Who: Legacy"…)

The mistake I made on Monday was starting a new project and feeling compelled to see if it worked Tuesday morning, and spending too much of it figure out why it didn’t. Its actually a small sub-project where the larger project isn’t yet fully working….and has been going on for months already. So progress or not, its still going to be there when I get home. There was also an extra accumulation of trash that I needed to clear out before I could start packing. Like the giant box my new suitcase had come in…back in July, which I was just opening now. Took a while to figure out how to open/close it, etc. Turns out that its not really practical for the kind of packer/traveler that I am. Though probably will just put up with it for a year or so.

Also, I knew that I needed to do one load of laundry for the trip, which didn’t get started until about 5pm. Ended up cramming lots of other items, especially after I discovered that my NNA shirt at the bottom of my hamper pile (I have hamper, but there’s a pile next to it too now.)

Anyways….I had found this great itinerary… Leave home at 10am…. have 3 hours between flights in Dallas, so that I can spend some time at the Centurion Lounge….like grab a quick bite, pop some pills, and maybe even get in a massage. But, then in late august I get a notification that the airline has changed my plans….its down to a 2 hour gap between flights….I had booked Supershuttle way back when I had done Hotel and Airplane…. so debated whether I needed to adjust my reservation.

The plan for returning, would have me leaving the hotel at 10am and getting home while the sun is still shining.

Then a couple weeks later I got another notification of changes to my schedule. They moved up when I needed to leave my #NNFamily…. who I wish I never had too. Much earlier….now I’d have to leave the hotel at 7:30am. Which is bad because for some reason after Labor day…I had stopped only managing to get 5.5-6 hours of sleep each night….so getting 8-9 hours a night. So, I was back to 7:30am being my normalish wake up time. Because of this change, I had contacted Supershuttle to revise my entire reservation which resulted in a 7:30am pickup time. (a bit longer time window than the original, but suspected traffic might be a more of a problem at that time…) It didn’t seem to really affect airport to hotel scheduling….its still when I’m done at baggage claim visit their counter, etc.

In fact, Monday night I had overslept my first dose by 2.5 hours, so opted to not take my second dose and just sleep for about another hour. Perhaps the problem, was that I had been putting off replacing the nasal pillows on my mask ’til after the conference and had finally caved to replacing that night…. Though delaying making a new mouthpiece, since I just had a dental cleaning on Monday, and my bite tends to be off for a few days afterwards….

During #nchat, I mentioned how annoying it was of the airline to have done this to me. Which led to chatting with the airline via Twitter, and they offered (and I accepted) a change to my return flight. Now I don’t have to leave on Monday until 12:30pm…..while I get home at night, its not the last flight of the day (so less worry that the building closes and they kick me out of the building before a taxi materializes…happened to me coming home from Galifrey last February.) It would have me coming back via Chicago….and give me about 35 minutes to make my connection.

I guess I can live with that. Though probably won’t try to see if I can schedule my next Xyrem shipment for the next morning (Oct 21st…last shipment was on Sep 24th.) Speaking of Xyrem…for some reason they been starting to call me around the 14th to try to schedule it…wonder if they’re going to try calling me during my conference window to schedule it.

I was able to get a reservation this year for Black Car to transport me to and from airport. So much nicer coming come from a trip, especially last at night when you have argue the taxi driver that really do want him to come out the airport to pick you up. And, that he’s not coming out there for nothing. Well, if an hour goes by and you still don’t show up and its below freezing and they’ve closed the airport and kicked out into the cold 45 minutes ago….then its because I called a different cab company who eventually came and got me about 30 minutes after that. Instead, Black Car is waiting for you at the airport (sometimes even with a sign.)

Eventually, at about 11pm, I decided I’ve had enough with packing….either I have it or I don’t. And, there’s still a little bit more that I’ll need to do the next morning anyways, when I pack up my CPAP bag. Though as I get ready for bed, I check out Facebook quickly, and end up printing off boarding passes, etc, and retrieve other items from my printer that I had printed for the trip. And, later on as I’m getting ready for bed, I dig out some newsletters/magazines that I had set aside to have something to read should I find some free time during travel or before conference… Stack those on suitcase as I’m not sure if there’s any room left.

Not sure if there’s a raffle this year, but most of what I had set aside for that this year…ended up not making it.

Wednesday, October 15th….9:58am….I’m moving bags out the door, so I can make a quick escape after arming my security system….when the phone rings, though it was just one of my daily telemarketing/charity calls (not sure which, but Google voice has flagged them as spam so they get shunted to voicemail…and no message is ever left….except an occasional one of some background typing….) Though later when I’m in Dallas, I see that among my missed calls was SDS. But, first I have to get to Dallas.

IIRC, there had been a slight tweak to the flight from MHK to DFW….But, Black Car has been so wonderful that there’s no worries about getting there by the cutoff for check-ins. Have had cab reservations, where the driver has to stop and get gas along the way…. (though partly because they lost my reservation…and I had called them, forcing them to find rush somebody over who wasn’t told that I wanted to go to the airport….or something.)

So, I’m sitting at the waiting area waiting for security to open…flight was scheduled for 11:30, and boarding time was to be 11am. There was guy across from me that was already sleeping when I sat down. He wakes around 11am, wondering why security hasn’t opened yet. I’m it a bit of a fog, but I’m pretty sure I hadn’t dozed off….but how can I really tell…. Occurs to me that I get flight notifications to my other phone (since I had switched it after forgetting my usual phone one trip.) Find there are 3 unread texts. The first is the flight is on time and details. Second its been delayed about 20 minutes. Third its been delayed another 20 minutes.

12:10pm maybe.

Security opens shortly afterwards…probably sensing that we’re getting restless now, though the guy across from me had just laid back down for more sleep. I rush, because I have feeling like they’re going to be a hassle to clear, even though I’m TSApref. At this airport it just means that I can keep my belt and shoes on, and optionally a light jacket….if I hadn’t crammed the pockets full for all the stuff from my pockets.

No belt this trip…had opted to go casual.

They’re running my bag through xray…hear that they want to run it again the other way. Overhear person at xray machine saying I think that looks like a camera…. the other guy (after getting permission) starts going through my bag….pulls out my Tamrac 5682 camera bag….guess that wasn’t enough of a give away….opens that and takes out camera….yup, its a camera. Then gives it to me to put everything back in its place….restore the spot where I stuff the Ziploc with my Xyrem bottle.

And, then we wait for the our plane to arrive, and for boarding to start. At least they still did some groups….they start with the usual diamond, platinum, priority access, people with children, uniformed military, but then include group one to board first. That’s me.

I always get group 1, because its an Embraer…and I need to find a spot in the limited overhead space for my CPAP bag.

And, then apparently some delay in take off….while I manage to stay awake for it, and go through the American Way magazine…then start into the Skymall catalog, but after a couple of pages, sleep wins and I wake a bit before plane begins descent.

Hmmm, boarding time to my next flight is about 30 minutes away….we’re to be at B2 and I need to get to C10….will I make it? But, we arrive and the pilot announces we’re going to be at B1, except there’s a plane in it and we’re waiting for it. Though neighboring gates are empty??? Eventually we get there….I down to just 10 minutes to get to next flight. Somebody behind me is grumbling that she only has 5 minutes.

I start in hunt of escalator to skytrain, when I pass walkway to terminal C. Decided that the time to go up and down and wait, etc. Might be faster to walk it….well, it might have been if all the moving sidewalks were working. Only the first 2 of 5(?) were… End, up arriving at gate just a little after the start….still doing priority lane, so not much longer before Group 1 is called and I can see about finding my seat.

That flight goes pretty smoothly…I stay awake to finish off the Skymall catalog, and then dig out something to read…a “Generations” newsletter (my first issue since joining NAF, following my recent new diagnosis…) And, its a special one…. Learn that the latest new problem that has been bugging me, might be part of my Ataxia progression…and is mentioned as something that leads to increased risk of falls later on, as it impairs our ability to compensate as well as we have been.

Also came across a research summary of “Modifying Machado-Joseph Disease Progression by Caffeine Blockage of Adenosine A2A Receptors". It starts with “MJD was originally described in people of Portuguese descent and it presently considered the most common dominantly-inherited cerebellar ataxia world-wide. Where apparently “chronic consumption of caffeine…alleviated neuropathological modifications and motor behaviour impairments.”

Hmm, wonder if that’s why my symptoms got worse….following the constant consumption of caffeine. Had at one point largely been completely caffeine free, except for chocolate. I had eventually gone back to enjoying a cup of coffee in the morning, or having a Dr. Pepper or Mountain Dew with Lunch….though still way less than I was before I had decided to try eliminating it.

Being Caffeine free did seem to help when I was on Ritalin as my daytime stimulant….but as I built tolerance the doc only wanted to increase the same dose times, not change timing to try to smooth things out….I switched to Nuvigil (was on Provigil before Ritalin, and had wanted Nuvigil then because paying 65% of its cost is about half of paying 35% for Provigil….this was before Provigil went generic, and Nuvigil got reclassified as a specialty drug…capped to $75/month.)

Not sure if I can train myself to drink more coffee though….sometimes I don’t finish the one cup I make in the morning….or notice until the next day.

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Dear Lawrence

This is my response to the “Dear Diagnosis” Blogathon

December 27th, 2008

Dear Lawrence,

SPOILERS!

If you haven’t read the letter from Manhattan Medical Associates, read that first.

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.

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Hopefully this letter has arrived on the indicated date, however been having trouble with the timing circuit after I tried to graft a serfboard into the chameleon circuit in hopes of at least getting the old familiar shape, causing an overload which re-engaged the randomizer into navigation.

So congratulations, you might be thinking, now that you’ve received the letter that you’ve been waiting for an agonizing almost 4 weeks, since your PSG on December 1st, 2008. (you’ll later find that insurance paid the claims for the sleep study the day before. Not that the PSG summary [printed on Dec 3rd, 2008] took over 3 weeks for the results to travel through the mail vortex to make the 3 block journey.)

You’ve done little research on sleep disorders, despite your suspicions with the sleep study turning into a split when the sleep tech woke you to shove a mask on to your face. But, you’ve read enough to think that this should finally fix all your problems, even if a sleep problem was the last thing you thought you ever had.

Plus you will get a new toy to play with….for at least few years until you get bored of looking at your sleep data.

Be warned, that this will be one of those rare times somebody will be annoyed with you for passing a test. And, you’ll hold back saying that your actually jumping for joy on the inside that they finally found something wrong with you that can be managed, and potentially with great success.

But, be careful, and be informed, because in the near future you will run into a lot of expenses. Which will burn through all your savings and start running up those cards again…. Also all that clothing that you mysteriously out grew in a couple of months that precipitated the suggestion of getting a sleep study, that you may decide some new year’s day to toss out, thinking you’ll never be down at that size again. DON’T DO IT. Because you will. Even after the other mysterious surges in weight.

More SPOILERS, read ahead if you dare. (which I know you will ;)

What’s going to put the damper on your joy, is that once you repay the sleep debt from sleep apnea, you problem of insomnia/sleep fragmentation will come back, and don’t worry…lucid dreaming will come back as well, along with those hallucinations you used to hate. And, you’ll still hate them, especially when it causes sleep paralysis.

While the journey ahead will be rough, including insensitive doctors with their “Good news, your test results are negative….[we still don’t know what’s wrong with you.]” Or they only care about the single word in the MSLT summary of “normal", and refuse to discuss it any further…to the point where the doctor will tell you that he’s ignoring you until you move off of the subject. He’ll even tell other doctors that you’re crazy and you somehow got the idea that you have Narcolepsy (when it was your doctors that had first mentioned it to you, that led you to research it and finally fess up that you do experience sleep paralysis and hallucinations, both while falling to sleep or waking, and the occasional hypnic jerk when your falling asleep.)

While you will soon find that there’ll be no more talking to your mother, and you’ll feel physically isolated from anybody that can truly relate. You will meet a lot of wonderful people in the virtual world, and while one of them will plant the idea of meeting them in person at a conference and then back out at the last moment. There will be some people there that have been told to watch out for you…particularly someone named Sharon. Or someone (named Sean) that will spot you wearing a “First Timer” ribbon sitting alone, and stop you from doing that ever again…

And, there will be other amazing/inspiring people in your life, such as an Ann or a Julie, even a Bailey.

While this may on occasion interfere with your pursuit of being with your other family that pursues that blue box that travels through time and space. You will have another new family that you place more importance on. And, sometimes you’ll wonder if you’ve seen somebody at one that you had seen before at the other…. But, you’ll have, at least, two families that get the things in your life that your first family doesn’t get about you.

And, perhaps someday you’ll get to starting up a local support group, or work up to considering one more move to somewhere with one.

Your almost 5 years in the future self…

…stumbling around in the time vortex, in search of pants he used to wear before things started getting weird near 30 or worse near 40….

RIP: Peter Hsu - 1920-2013

Earlier this month, I took a little staycation (during which I did my "Narcolepsy: Not Alone" photo)...didn't get all the things that I wanted done, and watched even less TV than I do normally. During this time, I didn't check my 'work' email accounts (including the gmail account that I had associated with my work smartphone, which I haven't had one for a long time since I opted to downgrade to a basic prepaid phone on my own dime.)

When I returned to work on August 12 and started catching up on my email, I found a bunch of emails from my cousin June. My grandfather likely passed away due to sudden cardiac arrest Friday night (August 9th, 2013). He wasn't discovered until Saturday morning, slumped over in his walker, when my grandparent's helper showed up. He was 93 (June 12).

Guess there were other emails to my other gmail account (from my parents), but that account has become overrun by emails from places I've shopped and many discussion groups. Need to make more filters to clean things up.

Anyways, I was in shock. I was quite close to him, he's in many of my early childhood memories. Perhaps because he was the other tall person, we shared some common interests (namely photography and home stereo) growing up and he facilitated my growing interests and lead me in how passionate I am in those areas. Which has led me to being equally so in many of the other areas that I've gotten into both personally and professionally. I'll probably never have the a home stereo system like the system that drew my attention in Taiwan, Photography continues to be a part of my life despite it becoming harder and harder to do. It was how my tremor was making it difficult to enjoy my Photography hobby that had led to the diagnosis of Essential Tremor, not that it was making it hard to do precise mouse clicks at work. I've never really been a big GUI person....and as my Tremor progresses, its not likely to change....

While I hadn't seen him since 2010 when I visited him for his 90th birthday, which as it happened was also during an email move at work. In my mind there was that there ought to be a family reunion in 2015 for my grandparents 75th wedding anniversary (and 95th birthday), where we haven't had much of a family reunion since my aunt Clara had passed (in 2004). There was also the thought of a reunion in 2020 for his 100th birthday.

That makes 2000 our last family reunion (and my first cruise), which was for my grandparents' 60th wedding anniversary and my grandfather's 80th. We did try to have a reunion in 2005 (my third, and final :?:, cruise)...but no Leo, Cathy or Charissa...and my grandparents eventually backed out. They haven't been into air travel for some time, and we weren't able to find a cruise around Los Angeles. We settled on one started/ended in San Diego with arranged car service to transport them to and from the port. Still it was a good cruise, even though I was flying back to so that I could be laid off from my previous job on Christmas Eve.

Then some guilt crept in as I then became angry that I didn't know about his death sooner. Along with trying to figure out bereavement leave policies and whether I could get an airplane ticket, etc. to attend his funeral on August 20th. I managed to mostly keep it together and push through the rest of the day at work. When I finally got home, I was starving and much sadness came in bursts.

Eventually, I call my parents to find out what travel plans they had to give me an idea of what plans I should make for my trip. And, then it was to see about finding an airplane ticket....I had been combing sites earlier looking for tickets for other upcoming trips, like NN Conference in October and Chicago Tardis in November. Which I probably should pull the trigger on purchasing soon, but there's a staging of when I purchase such things to manage the hit on my credit cards....

After some playing around, I find a combination of flying in the morning of August 20th and flying back on the 21st for $440...with ATL being around $470 and ORD being around $415. But, its only for a specific flight out of MHK and a specific flight back to MHK. Moving to either side, practically doubles it.

Also, I had to leave the booking with no seats selected, because the only seats it says are available are preferred or extra room seats, so two levels of extra charges. So, I left it to see what it would do when it tickets, which isn't until the next morning. It has seat assignments for MHK to DFW and DFW to MHK, but neither of the LAX flights have seats.

Should probably get to buying ATL ticket soon (now), though was considering buying ORD first given the notes of only a few seats left at the lowest price.

Full story »

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Not everything that ails me is directly from my sleep disorders.

Meant to write this sooner, but wanted to do some research online on Costochondritis and Diclofenac....but never seem to remember when I had a free moment....

Anyways...somewhere about 7 month ago, I woke up one morning with severe lower right chest pain, and it made it difficult to sit up to get out of bed....ended up rolling out of bed. I figured it was a muscle injury....not sure what I did during the night to cause it.

Wearing a rib belt helped with the pain, so I used one on and off. Though as the frequency went up, I started wondering if there was something wrong with my CPAP/Sleep Apnea. Since, I recalled from last download that my AHI creeps up slowly during each sleep set, and get's much higher in the second sleep set than it did in the first. Usually reaching ~10 about an hour before I wake in the morning. So, perhaps the problem is indirectly from the management of my sleep disorders - AutoCPAP & Xyrem.

I wondered if my AutoCPAP was set too high. Since, I had come across my CPAP titration when I was re-reviewing my sleep studies to see if what they said at the NN Conference about a PSG could be sufficient to diagnose Narcolepsy. In fact found that the PSG said I might have it, but clinical correlation is needed. But, the doctors I have don't have time for that....they need objective tests with binary answers. Anyways...what I had found was the titration just tried 4, 5, 6, 7, 8....7's good enough use that. But, the upper limit of 15? I'm told its just a number that is generally safe enough. Plus the newer machines can tell if the apnea would respond to pressure or detect if the pressure is making things worse.

There are nights were I do hit 15, but its quite sparse and when I've been sick (AHI those nights can also get into the 20's).

But, it turned out to a major operation in getting the SmartLink software working again on my Windows XP VM. A while back after a Window patch it failed to boot, I was able to rollback and try again and again. Eventually removed some of the offending .Net packages, cleaned up and reinstalled and things were mostly working again. But, evidently I had left things bad for whatever the SmartLink software needed. So I ended up really removing all the .Net pieces...and reinstall the portions not used by SmartLink, letting the SmartLink installation install its version....

I had tried installing SmartLink on my Windows 7 VM, but that's on a FreeBSD host, so no USB2 support at the time. I have since picked up a Silex SX-DS-4000U2....

I finally was able to run some reports the morning before my next appointment with my Narcolepsy doctor. But, conclusion was that it didn't seem likely that my pain was directly being caused by things....though if it was a concern we could lower the upper limit (and raise my lower pressure again, with my 90% pressure 7.5 and 95% pressure 8.0. I had long ago raised my start pressure to 7.5 (when I was on just regular CPAP I had raised it to 7.5 until it was lowered back to 7 after the second PSG, because sleep lab can only do whole numbers....and sleep lab said I slept best on 8 :??: ) I had intended to get that done, but never got around to it. There was some discussion though on whether a new titration might be in my future, and the word BIPAP was dropped.

I hope that if BIPAP is necessary it happens sooner than later...since I'm considering getting another Intellipap AutoCPAP for when I get around to building my new go-bag. The old bag works great for my Respironics M-Series, but I don't really want to go back when next time comes.

Anyways...things continued....where it was a morning or two about every other week, or more. While looking to see if there were other things I could change related to my sleep. There'll be new pillows and bedding eventually...was going to start replacing things gradually, but seems I've decided to wait until all the items are here to replace everything at the same time. That could be interesting.

Full story »

Life without CPAP Headgear

Has been wonderful, I don't know why I waited so long.

Anyways, as I had alluded to in my previous post I've had it with CPAP headgear, I had ordered the CPAP Pro....wishing I had gone with 2 now.

The mask arrived on March 15th, but then sat around waiting for a good moment where I could do the boil and bite fitting.  Some stretch of time where I would feel up to be vertical for a sufficient stretch and have flossed and brushed my teeth.  A side effect of using such a mask, is making sure that I've flossed before going to bed now (something I've been known to put off until morning when I'm too sleepy or rushed.)

During this time, I had switched to using a different backup mask....my EasyLife Nasal mask....a weird mask that creates suction to stick to my face while delivering pressure, though the headgear soon started in aggravate my problems and I was starting to develop a sore on the bridge of my nose.  The night before finally starting the CPAP Pro, I end up going back to the Bravo II for one last night.

Meanwhile, later on March 15th, I finally got around to ordering the TAP PAP, which I had somehow hoped would be the better mask given the direction of tubing....but I'm getting ahead of myself here.  I ordered it from CPAP.com, and had them ship it to my personal mailbox at the UPS Store to avoid any chance of a repeat of the problems I had with USPS on my previous order.  Though it came in a box that probably would've fit in a parcel locker this time.  (though I've been left delivery notices for boxes that would've fit, lately...so it might've been at risk.)  The order arrived on March 22nd, another shipment had arrived earlier that week....so it was going to make a challenging grocery/UPS store trip on March 23rd.  And, it was.

Especially with the one last hit of winter that weekend.... I only did a quick pick up of a few items, like bananas, donuts and oatmeal....breakfast, intended to make normal grocery run on Sunday, but the weather didn't permit it.  So, another week of delivery.  Just as well, standing and moving about is getting to be a real challenge these days.  And, it was still a tight cram to get the items into my duffel bag, and balance the cpap.com box on top as I walked home.  But, glad I had still done the quick grocery store trip in hindsight.

But, before that journey...I had finally gotten around to doing the boil and bite of the CPAP Pro on March 20th.  The mask only comes with one size pillows, where standard size fits 99% of users.  Except I'm almost always the outlyer, rarely ever been in the 99% of any other mask that I've tried...and evidently that's the case with CPAP Pro.  While testing the fit of the pillows waiting for the water to boil, I found that the standard pillows barely made contact with the edges of my nares...suggesting that it was going to be a problem once I laid down and more so as the night progressed.  At it was very exact on alignment to make the seal, which would add to the challenge in bed.  Well, it took a couple of tries to do the boil and bite...the first time I had bit down too soon, second time I still didn't get as close as possible to the front, but thought that it would do.  I had let the bite piece fully harden before remembering that I should trim....which now fully hardened wasn't possible to do.  Decided that the excess wasn't bothering me, that it could stay.  I also didn't get the back all the way down, so I thought that might cause problems....seems the main one is that it doesn't hold onto my teeth as well as it could.

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