Nights Like These

I've managed to ignore, overlook, perhaps even pretend at times that I'm as normal medically as I've always been until I have a night like this. These are the nights that concern me the most, the nights that I fit the perfect profile of what this syndrome is best known for, taking its victim in their sleep. This is why I hate to even close my eyes, that paranoid element that you try so desperately to keep in the back of your mind but it manages to sneak up and grab you on an evening that seemed to be going so well.

Along with the long list of things that become an issue for people who suffer from Dysautonomia, acid reflux can come & go as it pleases. I stay clear of most things that cause this issue such as spicy foods, heavy concentrated sauces, popcorn, pretzels etc... Tonight however, I had two items that when combined apparently close to the time to which I prepared to go to sleep, it almost became a lethal combination. Could you imagine that eating something so simple as a Butterfinger & some potato chips two hours before you laid down to go to sleep, could cause you to be gasping for breath & awakening to stomach acid burning your entire chest worsening with every cough as you try to clear your airway? I was coughing & gasping so loud that I woke my parents dog up on the other end of the house with this horrible coughing fit. Sad part of it all, the scary part so to speak, wasanother visit from Katie leading me towards a bright light & asking if I was truly ready to crossover. When I asked what it would mean exactly if I crossed over she said I wasn't ready just yet & suggested I head back, this is where the violent gasping for air combined with the worse acid reflux I've ever experienced took place.

Now this is where I'm most confused. I'm sitting straight up in my bed mind you, my entire chest is on fire & it feels like I drank Drano, I'm trying to determine what is a dream verses what seems to be the final destination. I've talked to my friend about this in several conversations prior to this evening, this obviously was not my first time I woke up trying to breath again. My friend is a minister, an Evangelistic healer who travels the world spreading  the word of the bible. We share Christianity but different denominations which doesn't prevent me from seeking his guidance on spiritual matters.

According to his perception of the afterlife, from numerous years of research & I must say, all kidding aside, his knowledge of religion regardless of origination makes you wonder if he was a cowriter of the Bible itself. When I described past visits which included a very clear image of Katie, my first girlfriend who passed due to leukemia, regardless of whether there was dialog or just her presence, this is considered a dream rather than a point of crossover. People that are turned away by loved ones are apparently having dreams that are orchestrated by our minds which hold no signifigance to any known spiritual transportation yet every time its happened to me, I awoke gasping for breath & in some cases feeling as if blood was again rushing through my body almost giving me the illusion of my body warming up from a cold spell so to speak. Its SO HARD to even describe the things I've endured when I wake up this way, its overwhelming sometimes as well as concerning.

The one thing that's never been disputed is the bright light sensation that people have experienced after being brought back to life on operating tables and such. So what am I to think when I'm heading towards a light, intense beyond anything I've seen in a conscious state, how do I explain Katie's presence as I headed towards this light? Dream, not a dream, crossover, not a crossover? I'm so lost right now on what I'm supposed to think that you begin to wonder if you are losing your marbles. All I can say with 100% pure accuracy is my chest is on fire and my lungs feel like they have sunburn, that's fact! Stomach acid heading where air oxygen is intended is without a doubt one of the most uncomfortable feelings ever. Not being able to catch your breath is awkward enough especially when accompanied with coughing acid, i felt like I was drowning which is not a comfortable feeling whatsoever.

I'm obviously not going back to sleep, there is no way I'm going for round two of this crap. I do need to call him tomorrow to get his input on what I dealt with, dream or not. I honestly at times wish I could give a shit knowing this answer but with the vast history of ANS disorder patients dying in their sleep, I must say I'm intrigued to know some answers. I can't prevent it,(even avoiding Butterfinger & chips) I've had other incidents of waking gasping for breath that were not involving acid reflux, this just happens to be the most unpleasant of ways I've experienced waking up.

I suffer from EXTREME sleep apnea which I have a medical device called a BIPAP. In my case, air is forced not only inward but also on exhale. Between my mind & my airway obstruction when I sleep, even with the necessary equipment I still stop breathing regularly throughout the night. This puts tremendous strain on my heart which causes more blood pressure issues etc... Here is an example of why Dysautonomia is SO DIFFICULT to control & why Drs stay clear of patients effected unless specifically trained for this. Due to the sleep apnea, I also have narcolepsy, which for those who aren't familiar, I'm that guy that falls asleep while sitting down sometimes mid conversation with you & when I awaken again, resume the conversation as if I was alert the whole time. The only problem is, I was asleep & silent for a period of time & you are the one amused & trying to balance peanuts on my forehead until I wake up again. Where was I heading with this? Oh yes, the difficulty of controlling ANS. For the sleep apnea/narcolepsy issues they use amphetamines to keep a person alert. For most patients this is a dose which is usually 30mg daily maximum. My case, took 90-120mg which meant I needed frequent visits to my cardiologist to ensure my heart didn't explode & my blood pressure didn't stroke me out.

Within a year, all recorded on my implanted heart monitor, instead of my heart working extra hard from all the speed, mine was actually doing less & beating at such a slow rate the word "Pacemaker" came into the picture. It wasn't until I reminded dear old doc it couldn't be possible due to the high percentage of speed I took daily, that's when that Dr discharged me to seek the professionals at a university hospital. Wonderful!

As I prepared to leave, her last comment was "you may need to increase your sodium intake to try and regulate your heart naturally". Now this is the same Dr that said I needed to limit or totally remove sodium from my diet to keep my blood pressure normal. Do you see now the complication? So I did increase my sodium, which in fact raised my heart rate to a more reasonable BPM that everyone was happy with HOWEVER now my blood pressure is through the roof. Damned if you do, damned if you don't. I'm the only person I know who can lose weight and actually have worse blood work results then when I'm 50lbs overweight. Another situation my other Drs would just scratch their heads over. A total medical mystery on a daily basis.

I entertain myself sometimes taking blood pressure readings at random in my home. I check it a few times a day. Tonight for giggles and shits I decided to do the NCS/POTS diagnostic so to speak where your BP is checked in a lying position & then rechecked in an upright position. I enhanced this by adding sitting which led me to wonder WTF is my body thinking. Lying down: 144/65 77BPM not bad, no medication whatsoever mind you for BP issues. Immediately stand 155/60 104BPM ( for those of you who may not see the issue, your BP is supposed to go up when your BPM goes up) sitting 168/108 99BPM lie back down 148/70 75BPM sit upright 185/104 91BPM stand 160/80 111BPM. All of these pressures happened within a 5 minute period. Now I think you can relate to why more Drs in my area have gray hair.

What bothers me is the unknown. When you have other terminal diseases they give you a window, you start fading away, make peace with everyone, a lot of cases say goodbye to people prior etc... My case its going to be sudden & unexpected which means a lot of people I'm not going to have the luxury of saying goodbye or for that matter truly finding peace. I met with my priest already for the blessing that as sudden as it may happen, God has my back & all but let's face it, not knowing when or where is so F'ing stressful you couldn't possibly imagine! It would be like the most highly respected psychic in the world telling you that you'll die as a result of getting hit by a bus but never telling you where or when. What do you do, move to Amish community to avoid buses? Frustrating right? Welcome to my world.

In closing I guess what im going to say to have some closure to my current situation, the optimist side of me expects to live until I'm 100+ and see my kids reach all their life goals and expectations. Based on my health & the realist side of my personality, if chosen to leave before my time, please know that my love for my family & friends has always been my biggest priority. Whether we knew each other for years or months, if I spoke to you in ANY capacity along the way, you were always considered a friend from the get go. If I suddenly disappear from Twitter for any length of time, I'd say more than two weeks without ever returning, my destiny was finalized but because of all the support of friends & family near & far I left knowing I made a difference in each persons life & you made a huge difference in mine. It would take me months to include everyone's name so we'll consider my blog entries as my connection to you all as well as my departing thank you for all the support you have all given me should the unthinkable happen to me. God Bless & love you all. Thanks for reading, Ciao.