Anaphylaxis In My Sleep... Yet Again
As I opened my eyes first thing this morning, I was having difficulty breathing. I couldn't catch my breath. I would suck in lungfuls of air but it may as well have been water. I felt as though I was trying to breath oxygenless air in the vacuum of deep space.
I sucked air deep into my lungs... nothing... the air just went in and out and I still needed air. It was like the air had no oxygen in it... or like I had the wind knocked out of me after being slammed to the ground while playing hockey or basketball.
I also was having difficulty finding the energy to wake myself up enough to get up out of bed. I felt as though I went to bed completely exhausted, fell asleep, and now someone was trying to awaken me just a few minutes after falling asleep. This wasn't just trying to wake up. No, this was weakness like I had no control over my own body. This is something with which I am far too familiar...
I quickly realized that this is bad news... bad, bad, bad news.
As I was slowly waking up, I was coming to the realization that I was showing more and more signs of recovering from anaphylaxis. This is definitely not the way to start the day.
I was still struggling to find the energy to sit up in bed. I decided not to fight it. If anything, I should have been finding a way to raise my legs to get more blood to my brain, however, I wasn't thinking clearly enough to do this at the time. Not thinking clearly was yet another sign that I was in deep trouble. Of course, it is only in hindsight while thinking clearly again that I truly understand this.
After a short time, I began to feel more like I had just regained consciousness rather than waking up from a typical night's sleep. As I laid there in bed my thoughts were becoming more coherent. At some point shortly afterward, I realized I should check my pulse. I laid there with my right hand by my side and my left arm draped over my body looking for a pulse on my right wrist... couldn't find one... but I could feel my heart beating away in my chest much faster than usual...
I found the energy to sit up eventually but it still took another couple of minutes before I could find a pulse. My pulse was very fast but very weak which is why I was having a difficult time finding it. As best as I could tell without a watch with a second hand, my heart-rate was around 150 bpm. I could easily tell it was faster than two beats per second but less than three beats per second. This is a very easy thing to 'feel' for any musician (conversely, if you can't feel this, you probably should not be a musician). This unusually fast heart-rate was a key sign that my body was trying to recover from anaphylaxis.
I've now taken my usual handful and glassful of morning medications as well as some emergency medications to try to stabilize my body. I'm able to breath again although I am still having some relatively minor difficulties catching a breath... just one gulp of air... one satisfying breath of oxygen. Now my heart-rate is in the 120 bpm range. This still is fast but it is slowly moving in the right direction. This is good news.
So now, a couple of hours later, I sit here typing away trying to find the words to describe another aspect of this illness called Systemic Mastocytosis - Mast Cell Disease. For years after developing this illness, I didn't say much about what I experience daily as a result of this illness and I have found that friends then tend to think that "no news is good news". They assume all is fine. This is one of the main reasons I decided to start writing here in this blog. No news does not imply good news. Even while trying to write about my experiences here, I still leave a lot out.
Sometimes I leave things out of this blog because other things are in the forefront of my thoughts. Sometimes I find I just don't want to dwell on this illness nor revisit a bad experience. Other times, there are emotions involved which I am just not ready to express here.
All I can add right now is that I am tired... Yes, it is the first thing in the morning and I just awoke, but I am physically tired, mentally tired and emotionally tired... I'm just tired... This is my greatest obstacle now. I am left feeling like I am only a fraction... perhaps only a minuscule of a fraction... of the person I once was...
Anyway, anaphylaxis in your sleep... This really is bad news. Even when anaphylaxis suddenly occurs during consciousness, it is difficult to quickly counter it with emergency medications. When anaphylaxis occurs during sleep, it is impossible to even attempt to counter this dangerous, life-threatening cellular breakdown.
Regardless of what time of day anaphylaxis occurs, recovery takes time. You feel like you just ran a marathon, were then hit by a truck and, as you lie there struggling to get back up to your feet, the truck then backs up and hits you again. You are left exhausted from what your body just went through... an exhaustion which simply cannot be put into words. Breathing difficulties linger. As a result, thought processes suffer and you find yourself getting frustrated over trying to accomplish the simplest of things. Pain and nerve irritation set in (and consequently some personality irritation, unfortunately)... your muscles ache, your bones ache, your joints hurt... you are so tired that your vision is impaired even more than what is caused as a side-effect of your emergency medications which makes reading difficult, at best... and the lingering fatigue is simply overwhelming. (For those thinking that I had already covered fatigue when I mentioned exhaustion, you are wrong... overwhelming fatigue is different than exhaustion.)
The next few days, or even weeks, will be slow going at best...
I sucked air deep into my lungs... nothing... the air just went in and out and I still needed air. It was like the air had no oxygen in it... or like I had the wind knocked out of me after being slammed to the ground while playing hockey or basketball.
I also was having difficulty finding the energy to wake myself up enough to get up out of bed. I felt as though I went to bed completely exhausted, fell asleep, and now someone was trying to awaken me just a few minutes after falling asleep. This wasn't just trying to wake up. No, this was weakness like I had no control over my own body. This is something with which I am far too familiar...
I quickly realized that this is bad news... bad, bad, bad news.
As I was slowly waking up, I was coming to the realization that I was showing more and more signs of recovering from anaphylaxis. This is definitely not the way to start the day.
I was still struggling to find the energy to sit up in bed. I decided not to fight it. If anything, I should have been finding a way to raise my legs to get more blood to my brain, however, I wasn't thinking clearly enough to do this at the time. Not thinking clearly was yet another sign that I was in deep trouble. Of course, it is only in hindsight while thinking clearly again that I truly understand this.
After a short time, I began to feel more like I had just regained consciousness rather than waking up from a typical night's sleep. As I laid there in bed my thoughts were becoming more coherent. At some point shortly afterward, I realized I should check my pulse. I laid there with my right hand by my side and my left arm draped over my body looking for a pulse on my right wrist... couldn't find one... but I could feel my heart beating away in my chest much faster than usual...
I found the energy to sit up eventually but it still took another couple of minutes before I could find a pulse. My pulse was very fast but very weak which is why I was having a difficult time finding it. As best as I could tell without a watch with a second hand, my heart-rate was around 150 bpm. I could easily tell it was faster than two beats per second but less than three beats per second. This is a very easy thing to 'feel' for any musician (conversely, if you can't feel this, you probably should not be a musician). This unusually fast heart-rate was a key sign that my body was trying to recover from anaphylaxis.
I've now taken my usual handful and glassful of morning medications as well as some emergency medications to try to stabilize my body. I'm able to breath again although I am still having some relatively minor difficulties catching a breath... just one gulp of air... one satisfying breath of oxygen. Now my heart-rate is in the 120 bpm range. This still is fast but it is slowly moving in the right direction. This is good news.
So now, a couple of hours later, I sit here typing away trying to find the words to describe another aspect of this illness called Systemic Mastocytosis - Mast Cell Disease. For years after developing this illness, I didn't say much about what I experience daily as a result of this illness and I have found that friends then tend to think that "no news is good news". They assume all is fine. This is one of the main reasons I decided to start writing here in this blog. No news does not imply good news. Even while trying to write about my experiences here, I still leave a lot out.
Sometimes I leave things out of this blog because other things are in the forefront of my thoughts. Sometimes I find I just don't want to dwell on this illness nor revisit a bad experience. Other times, there are emotions involved which I am just not ready to express here.
All I can add right now is that I am tired... Yes, it is the first thing in the morning and I just awoke, but I am physically tired, mentally tired and emotionally tired... I'm just tired... This is my greatest obstacle now. I am left feeling like I am only a fraction... perhaps only a minuscule of a fraction... of the person I once was...
Anyway, anaphylaxis in your sleep... This really is bad news. Even when anaphylaxis suddenly occurs during consciousness, it is difficult to quickly counter it with emergency medications. When anaphylaxis occurs during sleep, it is impossible to even attempt to counter this dangerous, life-threatening cellular breakdown.
Regardless of what time of day anaphylaxis occurs, recovery takes time. You feel like you just ran a marathon, were then hit by a truck and, as you lie there struggling to get back up to your feet, the truck then backs up and hits you again. You are left exhausted from what your body just went through... an exhaustion which simply cannot be put into words. Breathing difficulties linger. As a result, thought processes suffer and you find yourself getting frustrated over trying to accomplish the simplest of things. Pain and nerve irritation set in (and consequently some personality irritation, unfortunately)... your muscles ache, your bones ache, your joints hurt... you are so tired that your vision is impaired even more than what is caused as a side-effect of your emergency medications which makes reading difficult, at best... and the lingering fatigue is simply overwhelming. (For those thinking that I had already covered fatigue when I mentioned exhaustion, you are wrong... overwhelming fatigue is different than exhaustion.)
The next few days, or even weeks, will be slow going at best...
:-( Sometimes there are just no words......
ReplyDeleteI also have systemic Masto and I woke up with anaphylaxis yesterday morning. I woke up already crying with excruciating chest pain. I was blue and too dizzy and weak to think or walk. At the time I didn't recognize it as anaphylaxis because I was foggy headed and it didn't occur to me that anaphylaxis could happen while sleeping and with no obvious trigger. Once the drugs did their thing my heart rate slowly went back to normal but I spent the next 19 hours asleep and unable to get warm. My doctor later admonished me for not going to the ER immediately. Like you, I have emergency Masto drugs and I took them but apparently our people still need to be monitored by professionals after a mast-attack that severe. I learned my lesson yesterday. Next time I'm going straight to the ER. I hope you do too.
ReplyDelete(I actually found your blog by googling "anaphylaxis while sleeping" because I was still skeptical that what had happened was anaphylaxis.) Do you know of any sources on how/why anaphylaxis can happen like that? Why would we degranulate spontaneously? The other times I've had anaphylaxis I've been conscious and there's been an obvious trigger. Anyway, thanks for your writing! I hope you never have to go through that again. I know how terrifying it is.
ReplyDeleteI am very far behind in my responses... and when I'm going through periods of poor health, honestlly, I do not even attempt to catch up anymore.
Delete"Do you know of any sources on how/why anaphylaxis can happen like that?" There are very few professional sources of information online.
"Why would we degranulate spontaneously?" These seemingly spontaneous episodes may not be obvious to us but we have a little cellular war going on in our bodies. We don't really know what is happening on a cellular level. A sign of this cellular activity would be fatigue. Then, all the other symptoms when the body passes known limits.
I've had this illness for about 15 years now and I can tell you with absolute certainty that this illness causes idiopathic anaphylaxis as well as all symptomatology as a result of idiopathic mast cell degranulation. It happens. The levels of mast cell mediators builds up in your body over the course of time... level getting higher and higher... until you just trigger it with something small adding to those mast cell mediators, or you simply reach a level that is too high.
The way to combat this... the ONLY known way to combat this until there is a cure for this illness... is by an always-changing cocktail of medications starting with mast cell stabilizers. My opinion is that most Systemic Mastocytosis patients are not taking enough mast cell stabilizer medications. We can also help minimize symptoms (frequency, severity) with H1 blockers, H2 blockers, acid reducers, leukotriene blockers, prostoglandin D2 blockers, as well as supplements and proper diet for mast cell disease patients.
Most times the terrible symptoms develop during waking hours... sometimes, however, your body may hit a peak during sleeping hours especially if there were minor triggers/symptoms before bedtime which were ignored.
About the ER.... I hope have a local ER which is more versed in treating this illness than most ER's. I have had numerous bad experiences in ER's, some bordering on malpractice. For my own safety, I refuse to go to an ER for this illness. I will treat it myself and have been doing so for about 12 years now.
Best of luck to you!