Thursday, May 5, 2016

Radio Star Extraordinaire - Health Update

It's been an eventful week. Monday started out with a 3am emergency trip to the hospital with a very distressed Chanel. I should probably give some back story before I divulge into that lovely journey. I often experience something called Sleep Paralysis; this is a phenomenon where an individuals brain is awake, but their body is not. Imagine you awake from sleep to find you cannot talk, or move. You try to scream and thrash but it feel as though someone is holding you down and stuffing a pillow over your mouth. Your chest and extremities are heavy and you feel like you're suffocating. Often times this is accompanied by hallucinations of voices, or odd sensations.
Sounds horrifying right?

It is. In medical literature it is described as: living in a fully conscious, un-wakeable nightmare. Most SP patients experience one terrifying episode in their lifetime, but very rarely a patient has recurrent episodes, sometimes even more than once in the same night -- of course I am the latter. I quite often jolt back into body and mind conciseness screaming bloody murder. (My poor husband.) Typically this phenomenon accompanies nightmares, which makes the situation so much worse.

Monday at 3am my husband woke me, saying I looked distressed. I remember having a particularly difficult episode of SP before I was awoken. He said I sat straight up and began to cry. From the moment I woke I was in an altered state of mind, unable to retain any short term memory, and in utter confusion. Noel said I kept mumbling "somethings wrong," "how did I get here," "what's happening." Twenty minutes into trying to calm me he decided to pack me into the car and head to the emergency room. Apparently I was not an easy patient as I was extremely disoriented and had no idea how I had gotten there. I knew who I was and where I was, but had no recollection of the events that brought me to that point in time. From a medical stand point it would more than likely be described as Psychosis. This altered state lasted three horrifying hours. Eventually the emergency team pumped enough anti-anxiety meds that I fell asleep; upon waking I was back to normal. The physician described the situation as an acute panic attack form a particularly severe episode of SP; however, I am not sure I am comfortable with that diagnosis. I decided to branch out for a second opinion of my issue and was told it was less likely a panic attack, and more likely a psychiatric sleep disturbance. Luckily, their is one specialist in the state of Washington that deals with such issues and he is located about 20 minutes from my home! Hopefully he can explain this odd occurrence of my altered state, and we can leave this all behind us. It's pretty unnerving to feel so out of control. I have never experienced anything like this in my life, and I hope never to again.

Due to a condition called Angioedema, my face swells up when under great stress. You can bet this episode caused my condition to flare, and my face to look like a ridiculous puffer fish. (Honestly, I could barely open my eyes they were so swollen.) I had a local Seattle radio interview scheduled for that morning and you bet I wasn't going to miss it just because I was in the ER a few hours before! lol I attempted to slap some make-up over my puffy eyes and ran off to record my interview! It went super well and I had an absolute blast with the host of Uplift Radio 1150 KKNW. Listen to my interview here: Chanel White On Uplift Radio
(Yes, it is the correct link for my interview -- There is a small intro for another speaker, but my interview starts at 1 minute and 50 seconds! It's about 45 minutes long.)

In other news, we finally got the whole Mesna allergy situation solved. We have decided to move forward without the Mesna at all. While yes, this drugs function is to protect the bladder from Cytoxan, it is not a "guarantee," and more of just an "added bonus" to a heavy saturation of IV fluids.  While it's absolutely preferred to have both fluids, and Mesna when receiving Cytoxan, it is possible to receive the infusion without it. We will keep my Cytoxan dose low for now to see how well I fair without the Mesna, and if I tolerate it well, possibly go back up to my full dose. I am a tad bit nervous to continue without this drug, but I guess it's better than anaphylaxis!


  1. Wow you are such an inspiration! God bless you girl and your family.

  2. Oh my gosh Chanel I get sleep paralysis too! I used to get it a lot, at its worst multiple times in a week, but never multiple times in a night... yikes :( I would also wake up gasping or screaming as if I've just been rescued from near-drowning. I've never met anyone else who gets SP. I feel for you! Ugh. For what it's worth, I've noticed that when I sleep on my back with my neck unsupported, or fall asleep sitting with my head tilted up (like if I fall asleep in an airplane seat) I'm much more likely to have an episode. I think my breathing might be more shallow then? I'm not exactly sure, I've never looked too far into it because I've never had an episode as disorienting or concerning as the one you described. But once I noticed that I only seem to get them when my head is tilted back I've been much more conscientious of it and now I don't get SP 'attacks' nearly as often anymore. I hope that this helps!

    On a brighter note... Congrats on the radio interview! That's awesome!

  3. ^May be on to something on the breathing thing! Have had sleep paralysis and diagnosed night terrors, the screaming "fight or flight" episodes, since I was 13 years old, way before I got a disease diagnosis. They always flare when I am not physically feeling well I and have always been told that it is just anxiety/sleeping panic attacks (even when I have a mentally good day and fall asleep very happy which makes no sense!). I really think it is something to do with neurological or our muscular function malfunctioning during our relaxed sleeping state. Glad you still made it out and beasted to your interview, so cool! Blessings xox