It was a VNG that I had.

I thought I heard ENG… though I was still close.

ENG is Electronystagmography, so I had visions of being wired up similar to my previous PSG/MSLT experiences… but what I had was a VNG, Videonystagmography…where I just wear goggles that watch how my eyes respond to various visual stimulus, positional situations, and blowing warm and then cool air into my ear.

The blowing of air…makes for some pretty horrible spinning….nauseous, and a horrible headache.

Wonder what kind of find I want though…. in 2002 I had heard terms like BPPV and Meniere’s…and that the medication sucked more than the dizziness. Of course, Meniere’s is yet another idiopathic disease…and autoimmune. Though ENT is thinking that my dizziness/vertigo, etc. wasn’t due to an inner ear problem, but rather some other neurological condition….so that he might be referring me back to the Neurologist that had referred me to him.

So, do we just confirm that its still the same thing I had in 2002, and I just suffer…because primary doesn’t want to give me anything that has a potential side effect of causing drowsiness… Like that has anything to do with my hypersomnia. Or even when its medication prescribed by my sleep doctor. Or, that …. not sure…that this overlooked symptom combined with all my other issues, finally leads to the correct diagnosis.

Hopefully its at least something definite.

First 'download' from new IntelliPAP AutoCPAP

So, I'm about to go off for a trip...and therefore take a little break from my IntelliPAP AutoCPAP machine.... )-o

U-(

&#59;D ....and go back to use my old M-Series Pro CPAP machine.

Anyhoo....a while back I had picked up a 'new' laptop computer

Well, the purpose of that computer was primarily intended to easily record smart codes from the readout of the IntelliPAP AutoCPAP, enter them on the intellipap website and generate my latestly report. But, the laptop is currently spending most of its time competing with my other laptop in the living room. But, I did recently pick up a Thermaltake Toughpower Ultra Slim 95 Watts Universal Laptop Power Adapter High-Efficiency USB Charging Port using Amazon Prime....to be part of a rush shipment of goods that I wanted before going to Chicago TARDIS. Except that I'm sticking with my old laptop for travel, and the reason I wanted a new/different laptop power adapter...was that the Compaq 6910p's adapter uses a 3-wire AC cord...and there isn't one easily available near my bed. So, buying a new power adapter that uses a 2-wire cord seemed the way to go. Though there are cheaper, slower shipping ones available.

And, wouldn't you know it...I was on that sight buying a pre-Black Friday/Cyber Monday special and forgot to get the power adapter I had looked at earlier as part of the order. And, now I probably can't...because the adapter alone isn't enough to get free shipping. But, what I did get is getting free shipping....and it would've be nicer to have it with it. Maybe later...

Though I remember why the logic broke....the other power adapter I was looking at, would've been more suited for permanent use in my bedroom (green features) and the Thermaltake more useful when traveling (can never have enough USB charge ports in a hotel room...) So, not sure what I'm doing now....should really finish packing. Took today off to do that, and I haven't started yet. :oops:

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I went to a Narcolepsy Network Conference in Las Vegas

I was in Las Vegas, NV for the 26th Annual Patient Narcolepsy Network Conference from October 13-16, 2011 at the Stratosphere.

This is my second Narcolepsy Network conference. My first was the 25th Annual one in Arlington, VA (actually the Hyatt in Crystal City, VA)....

What led me to my first NN Conference was kind of strange. In early 2010, I first heard the N word raised in relation to my continuing EDS problem after successful/compliant management of my Sleep Apnea using CPAP (AHI was less than 1.0....closer to 0.0. In fact it was 0.0 in a PSG I had in December 2010, so sleep doc lowered my pressure so that its around 1.5 now.)

I honestly didn't really know a whole lot about Narcolepsy then, so I started researching it online. Since, I was a regular on the TalkAboutSleep message boards, and attended the Sleep Apnea chats regularly too....I started showing up to the Narcolepsy/Idiopathic Hypersomnia/Fibro chats as well.

From the chats, I feel like I've gotten to know Tracy and some of the other moderators. And, Tracy suggested a few times in chats that I check out Narcolepsy Network and its upcoming conference. With the implication that we would finally get to meet face to face if I went to the 25th one.

So, that's why I joined Narcolepsy Network and then went to the 25th Conference in 2010. Somewhere after I was committed to going, namely I had purchased my non-refundable coach airplane ticket. Tracy started saying she might not show up, and eventually it became a definite. But, she would be on for regular Thursday night N/IH/F chat....so I could do that the night before the conference from the hotel. During the chat I met Ann Austin....

At this point, I wasn't sure there was going to be any future NN Conferences for me. Since they seem to usually be second weekend in October...and doesn't line up too well with other conference/convention activities that I want to do this time of year (namely the Ohio Linux Fest...which is usually in mid-ish September, though the year I last went it was on the Columbus Day weekend....and some day I want to go again. And, Chicago TARDIS....Thanksgiving Day weekend. I actually wasn't planning to go this year [2011], but decided that I would when Alex Kingston was going to be there....she's not now, but Fifth Doctor Fest makes it still seem ok....though its missing one companion that I associate with 5, though Tony Lee kept saying at last year's Chicago TARDIS "Adric is dead"... :`( )

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My new CPAP, and final download from the old?

Today I finally got around to setting up my new Intellipap AutoAdjust Travel CPAP Machine with SmartFlex.

Not much to write about setting it up...except that I couldn't find the power cord for it, so I just moved the cord from my old CPAP over to it...saves me digging around behind my headboard anyways. And, there was some question of where on top of my night stand to put it, and how to orient it. Even though I bought it with its integrated humidifier, I opted to not use it...on my current night stand set up (perhaps when I get around to buying the new one...and/or I become more comfortable with the unit...I'll position it such that it'll be easier to slide the tank in and out.) In the meantime, I'll just stick to my HC150 external humidifier.

The only annoyance I found, was that the online DME didn't include the clinician manual with it, and didn't set it up to my prescription. My (current) prescription is 7.0 cmH20. They noted that they had set it to Auto 4.0-20.0 cmH2O....but, they had gone into the menus, because the factory defaults are auto 5.0-15.0 cmH2O....

I did a quick test fit, was surprised to find air blowing already, and it was so quiet. I knew I had enabled auto-on, but didn't expect it to come on so quickly and silently...compared to old Respironics machine. The auto-off was a little more annoying, but I guess that's expected. Wonder what I should set Tubing Length to....choices are 6' or 10'. I'm using a 6' tube, but there's a 2' tube between the machine and the humidifier...and there's also an extra bit of tube (with a quick connector) from the end of the 6' hose to the mask elbow. Guess I'll go with the 10' setting. I suppose I could dig out my cmH2O gauge manometer to verify its pressure.

But, looking forward to first night on it....

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Sleep Apnea disqualifies you from being a bone marrow donor?

Somebody pointed out that having Sleep Apnea disqualifies you from joining/staying in the National Bone Marrow Registry.

Even though they say 80% of marrow donations are done using an apheresis (think plasma or platelet donations)....

The explanation is:

Patient and donor safety is our top priority. Donor guidelines are developed by our Donor and Patient Safety Monitoring Committee. The committee is made up of medical directors from NMDP donor, transplant, apheresis and collection centers, a donor and a patient.

The primary risk associated with sleep apnea is related to marrow collection, which is a surgical procedure. Registry members must be able to donate either marrow or peripheral blood stem cells, depending on the needs of the patient.

Regulating anesthesia is more difficult in patients with breathing. After surgery, marrow donors may require narcotic pain medication, which can further depress breathing. In patients with sleep apnea, even a small amount of anesthetic sedation can cause decreased airflow.

Despite the risk, some registry members express their willingness to assume the risk in order to help a patient. While the NMDP appreciates the courage and compassion that motivates them, it would be unethical for the NMDP to allow donors to do so.

To learn about other way to help patients and their families, visit http://www.marrow.org/HELP/index.html?src=tabinvolved

Of course, the explanation then raises the question of other disorders, such as narcolepsy and/or idiopathic hypersomnia....who also can respond differently to anesthetic or pain meds.

Regarding your questions about narcolepsy or idiopathic hypersomnia disqualifying a donor, it would best be considered on a case-by-case basis to determine the extent to which it affected breathing, and what impact it might have on the ability to donate.

So, there you have it...if you have sleep apnea, they tell you to go away... But, if you have some other condition of similar or greater risk...they'll let you in....because not waking up from anesthetic is okay if you keep breathing? Though one also wonders if they fully understand what sleep apnea can be?