Category: "NN Conference"

Narcolepsy Network Conference 2013 in parts ... 2

Saturday

So, I got up a bit before 6am, leisurely got ready since breakfast wasn’t until 7:30am. But, I was pretty much ready to go down at 6:30am, as I hadn’t gotten out my computer and resisted the need to use it. I did neglect some of the things I need to do regularly, like my voluntary role as moderator for a couple of mailing lists. But, when I finally returned to the real world, it was clear that somebody else had taken care of it. It has always felt like there was another person moderating as well, though usually the spam just piles up until I get rid of it. But, everything was clear this time. So, I guess no worries when I got on future vacations.

Anyways…I went down and wandered back and forth watching people set up for the day, along with the various other people that had also come down early to wait for breakfast. A little after 7am, I found myself back at the breakfast area and there were other people already getting food and finding tables to occupy. So, I got breakfast too. I picked an empty table by the door, which gradually filled up during breakfast and I met people from past conferences, as well as first timers. Eventually, I got up for seconds, and came back to find that my spot had been cleared…so I had to get another set of utensils.

Breakfast was kind of interesting in setup and layout….the tables were empty and you had to pickup your own napkin/utensil set outside, as well as all drinks. Which was okay, but what was odd was that the space was split across the hall. So, it would make it difficult if you were looking to connect with specific friends during breakfast, etc. Then I made my way to the room where the opening speakers would be. Things started late. Since there was to be a Welcome and announcements bit at 8:45am, before the two main opening speakers at 9:00am and 10:00am. But, the Welcome/announcements were rushed through a little after 9am. Probably having breakfast scheduled to 9am was a factor, though there were also some technical issues.

Keynote Speaker

This was a “Narcolepsy Update” by Dr. Michael Thorpy. Which I recall touched on the recent developments in Narcolepsy in the last few years, including that most of the understanding and work has been in the last few decades, despite it being first described in the 1800’s. He made a note to mention other speakers at the conference that would be speaking more in depth on some of the areas he touched on.

Following this, was Dr. Jerry Siegel, who spoke of “A New Development in Our Understanding of Human Narcolepsy". Which like all speakers start with a summary of what is Narcolepsy, and then a review of hypocretin cell loss associated with Narcolepy. And, then got into the new development. A major increase in Histamine cells in Narcolepsy, yet a low concentration of histamine in CSF.

Not sure what the development means for Narcolepsy though…. since Histamine is wake promoting (which is why anti-histamines make you drowsy), would they be looking to increase Histamine levels as wake to increase wakefulness. Where an obvious downside is that it might make you more allergic or have strong allergic responses to allergens. Or, is it because this is the first time they’ve seen an increase of a certain type of brain cell in people. Where the general understanding has been you are born with a certain amount, which would otherwise stay constant throughout your lifetime if you didn’t have events, conditions, or such that result in the loss of brain cells. And, such losses are irreversible.

After this, was the first breakout session.

I went to “Narcolepsy: Is there an environmental trigger?” by Dr. Todd Swick. After a few minutes, it dawned on me that the answer is definitely yes. Given that its considered an autoimmune disease, where large portions of the population have the HLA(s) that have been linked to Narcolepsy, but not everybody develops Narcolepsy. Including a note that if there is Narcolepsy with an identical twin, the other doesn’t develop it. Even though they obviously have the same genes, and had mostly the same exposures in early development.

But, while the big focus seems to have moved from streptoccocus to H1N1 as the trigger, he talked about other things that have been associated with the onset of Narcolepsy. Like pneumonia (which I do know I had when I was a child), or heavy metal exposure (where I know I’ve had exposure to mercury….)

This session was followed by Lunch, which included the Membership meeting…where things got quite heated. And, eventually adjourned to sometime on Sunday, so that the rest of the conference can try to keep to its tight schedule.

That was probably another weird thing with the Hotel this year, we didn’t have any space that was ours for the entire weekend, not even most of the day. It was we had to end at 5pm, because they needed to reset the space for another group/event in the space.

Anyways…the first session I caught after lunch was “Narcolepsy Advocacy Update on the FDA Patient Focused Initiative” by Dr. Mark Patterson and Julie Flygare, JD…hmm, just noticed they have her name as “July Flygare” in the schedule :DD

Seemed it was to go back and forth between Mark and Julie, though Julie soon found that she was doing most of the talking. Which was fine with me &#59;D Didn’t really learn a whole lot that I didn’t know, having heard about it early on during the dinner cruise last year which led to lots of attention to get involvement following last year’s conference, and continued attention up to the meeting on September 24, 2013. Though it was interesting to hear a bit more in depth of the panelists, and connecting that someone I had met on Friday was one of the panelists, etc.

This was then followed by a “Narcolepsy and Hypersomnia Research Update” by Dr. Lynn Marie Trotti, which I was really interested in hear, since I had caught her presentation during my first NN Conference in DC and had found it interesting, despite not know what I was going into. And, I had wondered about things over the years. Her update was more interesting in that during the presentation she asked how she was doing for time, and learning that there might not be enough time to cover everything. She started talking faster. But, I could still follow along, and in fact it seemed to make it easier to maintain my focus. And, she would still respond to questions, etc.

There wasn’t much of a break, and I then made my way to the “How to Cope in the Work Place Professional Panel"….which turned out to not really be what I had thought it would be, but it was still kind of interesting. And, it was certain interesting to find out some of the things a person with narcolepsy does for work. Namely Mee who is a trader on wall street. Generally, the main theme was that we work in something that we are interested and/or passionate about. With the exception of Sara K., who is working in something really boring and survives by doing Narcolepsy Network business to break up the monotony of her work.

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Narcolepsy Network Conference 2013 in parts ... 1

So, I didn’t write entries during the course of this year’s Narcolepsy Network conference, in fact I spent very little time online during the conference. I didn’t get my laptop out at all during it, and as I later discovered most of the comments I did from my phone to facebook didn’t post…so just the occasional tweet and 4sq check in (which I’m really out of habit of using, so I’ll probably stop again, even though have a more usable phone again.)

Now that I’m back from the conference, I’ve been trying to decide where I should begin….so let’s try the beginning…

I really left getting ready for the conference this year, right close to the last moment. I had been smartphone free for a couple of weeks, angry that T-Mobile was holding my hostage to a contract on a phone when they had switched to no more contracts. So, in the end I got a new phone from AT&T. It arrived on October 9th, and I started activation on October 10th. And, then spent the weekend figuring it out and getting it to something I wanted, instead of packing for the NN Conference which I had intended to start by October 13th instead of on October 16th in the hours before my journey was to start on October 17th.

I also ran into a problem with my plans….I normally get a buzz cut every 5 weeks, but that would put my usual buzz cut in the middle of the conference, so I planned to do this on October 12th. But, when I got the hair cutters, they wouldn’t cut my hair. Fear of what is probably seborrheic dermatitis, though perhaps I should get a specialist to look and see if that’s what it really is, etc. I don’t recall checking my pillow that morning to see if there had been any fresh blood or pus, but they said there was signs of recent bleeding so they wouldn’t touch it. Though I didn’t see any blood on my pillow most mornings during the conference (I don’t recall checking the morning of my return, but I was kind of rushed that morning….for nothing.)

So, I opted to cut my own hair on the 13th. Years ago I had purchased a Remington Short Cut Clipper….so I finally put it to use. I soon remembered all the problems I had back when I used to self cut. I lack the necessary coordination to use both hands…so its a bit awkward getting things even using on my right. And, there’s no mirrors in my tub (since I do that to simplify clean up…) and, its hard to do the finer details….even though I had supported the Edgup project on Kickstarter. I had neglected to plug in my regular clipper. Though I did plug it in for a bit…. since I discovered that I had pretty much missed cutting the hair around my left ear.

I then worked Monday and Tuesday, and kept saying that I should pack in the evenings rather than try to not fall more behind on my TV watching. But, I caught the occasional show here and there. Monday I had gotten home late, and after too much procrastination, I ended up just having a big bowl of cereal for supper. Tuesday things got later than I had intended as well, but I ordered from Dominos for supper and lunch and supper on Wednesday. So, I watched some TV while eating….

At least I had gotten in some laundry during the weekend, with an eye to have specific items for the conference to wear. It had cooled down quite in bit in the week before the conference, so I opted to wear pants and shoes, instead of shorts and birkenstocks (though I wore the birkenstocks for most of the conference…even when I did venture out of the hotel…) There were various items that I couldn’t locate as I was rushing to pack, and I was aiming to be in bed by 7pm (with a target wake time of 3am, to do final preparation before 5:30am Black Car to Manhattan Airport.)

I had a strong suspicion that I was now back to the waist size that I was at before the sudden weight gains that eventually led to diagnosis…where 3 events had pushed into overweight. And, it appears to have been confirmed as I found the pants I had available are on the bit too large side…. During the expanding phase, I never thought I could get back to my old size, so I had gotten rid of those reminders….now I should probably clear out the clutter by getting rid of all the clothing that is now too big for me.

Eventually, I got where I felt I was sufficient packed….though I had probably eaten lunch and then supper a bit later than I should’ve. I finally got to bed after 7:30pm, closer to 8pm. I set my alarms for 11pm and 3am.

I woke to the 11pm alarm, and after some puzzlement I took my next dose and went back to sleep. I then woke on my own, where things felt strange so I checked my alarm….it was a little after 3:30am. ARGH! :##

So, I rushed around taking care of the final packing…which was mainly to pack my CPAP mask into my CPAP bag. Due to the nature of my mask, it is the one item that isn’t duplicated in my CPAP bag. I then continued to get ready and then spent some time on facebook while waiting for 5:30am to approach. About an hour. Finally at about 5;25am I set my bags outside, briefly closed the door so I could arm my security system and then headed on out into the cold. It was about 36F, and it was expected to get colder still before the sun would show up to reverse things.

After that…things went pretty well with the flights, though the departure gate in Chicago changed 3 times and there was a bit of a delay in getting out, largely due to the weather there (though there was also weather in Atlanta.) I didn’t see anybody I knew at the airport, so after some thought I opted to take a taxi from the airport to the hotel. It was a flat $40 + $2 fuel surcharge and $1.5 airport surcharge. And, I didn’t have trouble staying awake during the ride.

Of course, I had slept through virtually all of the flight from Manhattan, KS to Chicago. And, slept during taxiing and take off from Chicago bound for Atlanta. Though I was awake for the rest of the trip and passed the time by reading the in flight magazine and finishing the kindle book that I had started reading during my trip to and from UNMC.

I arrived at the hotel about 2:15pm, and went up to my room and after some thought, decided to unpack and fully setup my CPAP before going down to find lunch.

Unfortunately the hotel restaurant’s lunch service closes at 2:30pm. So, wandered around a bit inside the hotel to see what alternatives there were, I then looked at my phone to see what was nearby, and settled on walking to Lenox mall in search of food. I decided to go with the familiar and had lunch at Panera Bread. Then I walked back….where it started to rain much heavier. But, still acceptable. Though I had lost my bearings while wandering inside the mall, which apparently is much larger than it appeared on the outside….since there’s two stories that I saw when I entered, and two more going down…. Would’ve been interesting to explore the area more.

I eventually wandered passed the Marta station again, where somebody asked me which was some address along Peacetree. Not having paid any attention to building numbers, I wasn’t sure….but I ended passing the address he had been looking for before getting back to the hotel. I considered doubling back, but by now the rain was starting to pick up.

Later I would see other people that had gone out for walks that were caught by the rain worse than I had.

I largely continued to pass the time sitting in the lobby? area waving to familiar faces and hanging out and chatting with other new and old friends. This eventually led to having supper with at Southern Art, and then more socializing before calling it an early night.

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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 »

I got an Eye Exam

So, since my Narcolepsy Diagnosis, I've been having vision problems...since September. I suspected that some of it was due to my medication, and I did find that I was right...but learned from Facebook before the NN Conference in October that what I was experiencing was more associated as a side effect of my stimulant than the other. I might be starting too strong with it in the morning.

Making a change on that front, brought about an almost immediate improvement....and while at the conference, I learned of another thing to adjust and that also made for a pretty quick improvement.

However, I still felt that my prescription had changed...but didn't feel like I could get an eye exam and new glasses done in time for LISA, so I put it off....except I guess I put it off too long...because I finally got the eye exam today....but, I'm off to Gallifrey One next week. Not enough time to get a new pair of glasses. Manhattan, KS needs an 1 hour place....though do they do computer progressives in an hour? No, I need my own time machine.

For the progression...see "The Result of my Latest Eye Exam"

And, then after the eye exam, the doctor remember that I had done poorly in the upper left quadrant of my left eye in the peripheral vision test, and that he would see how I did to see if there is concern.

I again did poorly in that area. Said this kind of thing usually points to Glaucoma, but my eye pressures are perfect so that doesn't. So, he's not sure still...though he did notice in the up close exam of my eyes that my left eyelid does hang longer than my right, so maybe that's impeding my ability to see in that quadrant. But, he recently got this new machine that can quickly determine if it is and he had checked my insurance and saw that I had met my deductible. (Getting my Xyrem refilled on Jan 2nd, made me meet my $2500 deductible really quickly....and it didn't hurt as much as I thought it would either...) So, the extra test would be full covered. The normal eye exam portion is covered 100% and not subject to deductible....as are other defined preventive exams....

Meanwhile, I'm wondering if a pair of prescription sunglasses will work into my plan this year? Since the change is much, and given how I bought 3 new pairs of glasses last year....and only have the one pair. I should have a spare.

Perhaps, I might revisit Transition lenses again... for one of the pairs.... :hmm: Though so far I haven't made any use against my limited use FSA, which I had considered lowering, but in the end had kept at the same level of funding this year.

But, first how will I get by at Gallifrey One.... guess we shall see... :roll:

Latest new problem -- Peripheral Neuropathy

So, last week I had a routine follow up appointment with my Neurologist with Sleep Medicine specialist. In preparation for the appointment, I had three issues that I've been having that I wanted to bring up. And, taking one of the suggestions from "Strategies & Techniques to help the Doctor help you", the last session I attended at the recent Narcolepsy Network Conference, I mentioned two of them to the nurse as I was getting settled in the exam room.

When doctor first came in, he asked a total irrelevant question, which I answered ("yes"...of course, I'm doing that as part of everything so that I can get quality sleep at night, what do you think I've been coming here for.) To which he said was good. As if its the only thing he cares about with respect to my sleep, but it wasn't. But, that's why I have a different specialist for my sleep problems...the Narcolepsy/Cataplexy dx which he didn't acknowledge in the appointment.

Then, he looked at the what the nurse had written and asked what he had me on for my tremor. I'm on Nadolol, he asked if it was 40mg. No, you have me on 20mg. Well, then you should be on 40mg. I'll write you a new script. Back when I lived in Dublin, Ohio and was seeing a Neurologist for it...he had me on 40mg of Nadolol.

Next thing I had mentioned was the tingling that I have all the time in my right leg. And, occasionally in other limbs. This led to wanting to schedule an EMG, which could either be done right away or later in the day depending on scheduling for the EMG. Well, I had taken the whole day off from work, so that wouldn't be a problem....except I had heard horror stories about how he did EMGs.

Well, there was time before the next scheduled EMG, so I was taking next door to strip and gown up for it. And, then the testing started. The shocks were tolerable at the beginning, though the conclusion was that there was significant neuropathy in my right leg. And, then he continued to shock it repeatedly as if trying to get the result to be normal or just to keep doing it, to get a reaction out of me. Then the muscle part....just flick the needle into my leg randomly, not care if he drew blood, etc. That last part was more painful. The result was normal for that at least. The next few days after that I had problem with cramping in my legs though.

The end of the visit, was to schedule a followup in a month and have me under go a whole bunch of (blood) tests, including a glucose tolerance test.

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