"The Simpler, The Better"- I, Be...

- A Gringo Skateboarder, who has Narcolepsy with Cataplexy and Idiopathic Central Sleep Apnea; Complexicated Health.
Enter the Realm/s and/or Dimension/s of I. -

My 'Horror' Sleep Study, And The Mix, Experience.

It sucks and is gross, the amount of money made is too; please no one get worked up 'at me' over this rant (that's what it is), I was harmed rather than helped yet now a couple of years later I can only look back on it and sigh...

A heads up. You can choose to disagree and think whatever you'd like, perhaps I'm off base, but you likely have not (would, nor will) experience what I did, and 'hopefully' no one else ever does.

My entire point here though, is that: the need for accurate in-home sleep studies, is huge.

There are devices that work, perhaps not quite to the extent of an EEG, but seriously unless you have a 'sleep apnea' matter they can get enough information for the dx of N w/ C.
"Study: Home Sleep Test Equates to Sleep Lab Testing in Outcomes" [May 20, 2010]
"In-home tests gain traction in sleep disorder diagnoses" [February 15, 2013]
There are many more articles out there, regarding such...
The fact that one is not sleeping in their normal bed, at the normal hours they sleep, on top of that with near 30 wires glued to their head and body; it is no wonder there is such typical occurrences.
Be careful.

This is not meant to scare anyone, it is my unfortunate story to do with sleep studies and the mix. I know that I sound bitter, no apologies...

It took a few studies to determine but I turned out to have a minimal (11 AHI or Apneas per hour) 'idiopathic central sleep apnea' which was seen, began, on my first sleep study.

I was supposed to go into the MSLT (Multiple Sleep Latency Test) the next day following it, but unfortunately it took 4 more sleep studies and another 9 months before getting to the first and final MSLT for my 'probable Narcolepsy with Cataplexy' dx. I had 2 SOREMPS in the 5 naps given, and my mean sleep latency was 9 minutes (although they admitted that the door being opened a few minutes into my 3rd nap effected such) which is above the strict 8 minute diagnosis guidelines or requirement. No biggie, and in fact that correlated with my condition which has always been more fatigue than tiredness along with the Cataplexy in many ways being way more of a bother and intrusion, upon my life.

Having 'clear cut Cataplexy', which goes back to my infancy and childhood, developing into collapses in my early 20's, combined with the tetrad of symptoms it really disgust me that the procedures for a dx, are so broken. I've gained nothing either from my dx, I take none of the meds because they've caused me too many side effects that do not outweigh beneficially the negative effects caused by such; I know many people find them to help, but I have other health matters which interfere so that's that (please, do not attack me on this).

The 1st sleep study with no machines went alright but in the morning the tech was really crude about my dozing off in the chair...
Then 1 week later I had another with a CPAP.
Like 2 weeks, or a month later, I had another with the BiPAP ST.
And, another a month later with the VPAP ASV...
Throughout that entire period of time, I was having severe difficulties not only with mask issues but everything I normally experience was worsening; that being headaches, eye pain and dryness, ear/nose/throat problems especially, fatigue and tiredness, and most of all Cataplexy had become immediately much worse as well as much more frequent.

From the beginning of when I went in to see the Neurologist that I ended up with (who was a physicians assistant -sigh-, and I tried did ask more than once if I could actually see and speak with the Neurologist but was assured she was following the case), I'd explained specifically and multiple times that the entire purpose of my going in was to 'confirm and learn about my condition, to rule out epilepsy and possible degenerative disease/s.' This was, I guess unexceptable, as was being allowed to see and/or speak directly with the actual Neurologist...

So, around 6-7 months later after attempting that entire time to use the machine accordingly, which I did use it every single night (except 3 or maybe 4) yet I could only tolerate around 3-4 hours of it before being in real pain and taking it off. I'd been convinced I'd gain a benefit (which I did not) and tried hard to hold onto such possibility.

Finally though, it could not continue in this manner and I went elsewhere; in fact I went over 15 hours away to a top notch and renown Clinic (which had previously, as an infant, saved my life). In hindsight, I should have walked out when the first diagnoses was made by the sleep lab; being Obstructive Apnea, with 1 obstructive apnea and 44 central apneas according to the first sleep study results/report. By the third sleep study, 'idiopathic central sleep apnea' was the diagnosis made.

I now consider (with the understanding I have now and the experiences) both the hospital sleep lab and the neurologists group were I went to be entirely clueless, as they were also oblivious, and on top of that (it sure all seemed) neglectful. I mean absolutely no one, any offense and/or insult, but they were clueless; yet, were one of the top groups in my town. What was I supposed to do? When I'd asked about a lack of hypocretin being perhaps the underlying cause, the response was "What? please don't read on the internet..." And, everything I described regarding my Cataplexy escalating dramatically was completely ignored, although more and more drugs (stimulants and antidepressants) were offered. I did not have any, 0, interest in such.

The root of this story/experience is this: Cataplexy collapses prior to ever using a breathing machine (for me) were in the range of 3-10 every 6 months. During the 9 month course of time, I was collapsing (it escalated to) at least 5 times a day and on some days up to possibly 20 times, if not more. It was dramatic, my life changed and the experience was so difficult upon my family at home. Now, a couple of years later, after being off of the breathing machines, I collapse slightly more than prior to. But no were near as much as during that 9 month course of time... Beware and pay attention, don't hesitate to seek a second opinion, especially if you have complex other health matters; I sure do...

Thankfully, going elsewhere, finally brought the confirmations, seconding and conversations that I'd needed. There are still too many unknowns regarding my health matters, but that is okay because at least my Cataplexy regressed after getting off of the machine (which was also causing severe ENT matters -in fact I had to have ear tubes replaced because one had been forced out of my ear drum which caused a second ear drum to grow with infection- and my headaches as well as migraines had also worsened to be daily rather than weekly); those two years were severely bad and painful, difficult and intense.

All I'm trying to say, is be careful, regardless.
That was a piece of my life 'roller coaster' health ride, story/experience.

Page of ways to help or gift, to, me.
Many typical/standard things are difficult for me to do and/or manage. Describing pieces of that all, is a part of this web venture.
I hopes: To provide something (perhaps creative & possibly for some, of real importance and/or value) through writing (photos, videos, too) on my experience/s, perspective/s & interest/s (with links). To, in return find &/or create some source of money seems basic, logical & such is a necessity. To set out with any profiting intent, though, is bothersome.
This is all, for me a leap, in motion.
It'll come together, hopefully simply, in time. As Time Does Tell...
Please Be, Observe, & Contemplate; All!
Doing so, is beyond fascinating.

HOME LINK HERE -> This site is an attempt to reach out from my solo place.
The hope of mine, is that some people may find my words and what not, interesting and/or perhaps enlightening in some manner.
There are no expectations that I have on any, and I absolutely mean no insult nor direct offense towards any one.
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