Monday, August 4, 2014

Whooping Cough and Cough Syncope: A Personal Account

Note to medporn enthusiasts: this website does describe some reasonably excruciating and diverting medical situations.  However, its main purpose is to offer my experiences as a public service to a relatively underserved sector: people who suffer from a) whooping cough and b) also experience cough syncope.  These are conditions largely untreatable in the doctor’s office, and information on how to handle the disease is relatively sparse and dispersed.  So there are thoughtful discussions of icky but important issues such as mucus management, cough strategies, etc. that may not engage or perhaps even repel the casual reader but, I hope will provide useful data to current sufferers.

I would appreciate it if readers could link to this post so that it will show up on the search engines and perhaps provide some useful information or food for thought for other whooping cough and cough syncope sufferers.

I should also emphasize I can only describe the things I did and how they worked for me; readers should understand that the same practices might not work or might possibly even make things worse.  Caveat whooper!

As described in my original post (reproduced below), I never got a formal diagnosis of whooping cough but I surely had it: after an initial week of fever, no fever, no symptoms except production of mucus from the bronchi and an accompanying violent, paroxysmal cough that persisted for weeks.

Judging from my readings on the Internet, I am not alone.  MDs do not seem up on the failure rate of pertussis vaccines and, if they treat whooping cough patients at all, they are treating them for the wrong things—allergies, bronchial viruses, etc.

The Cough

Whooping cough isn’t waterboarding, but it’s on the same road.  Mucus from below obstructs the windpipe; the primeval lizard brain goes to Defcon 1 and starts constricting muscles in the torso to force air out of the lungs to dislodge the blockage.  With most of the air expelled, some other part of the brain announces a pressing interest in rapidly sucking in air.  This air, fighting its way down through the constricted bronchi, elicits the classic “whoop”.  And since the airway is often not cleared by the first cough—and/or the mucus is sucked back in during the ensuing whoop—a cycle of paroxysmal coughing ensues.  And if, in the confusion, some of the material gets into the esophagus and elicits the gag reflex, you, your family, and indeed the aghast neighbors will experience a high decibel symphony of coughing, whooping, and retching.

This event occurs whenever the area of the windpipe has accumulated enough mucus to elicit the cough response.  Unhappily, when the production of mucus is in full spate, the instinct for paroxysmal coughing can be triggered every few minutes day or night.  Nighttime incidents tend to be more violent because the mucus pools and accumulates to a grisly degree while one is quietly sleeping.

The Miracle of Mucus

Ah, mucus.  When the whooping cough syndrome is at its peak, the mucus is clear and viscous like the stuff the Alien drooled.  As the rate of production slowed over the weeks, I could listen to mucus merrily percolating in my chest as I respirated-- and aerated the goo until a critical volume was reached and it was time to eject a grey, frothy slime.  In the end stages, when I was coughing perhaps once or twice a day, mucus appeared as a gluey, pearly snake.   Fact is, at the very end, it’s necessary to prime the pump by drinking some liquid to augment the mucus in order to achieve the critical mass for a cough.  For the later stage, when the mucus was relatively dry, rare, and difficult to cough up, my doctor offered to prescribe an asthma inhaler to dilate the bronchi ,and suggested I take Mucinex to loosen things up.  Since things were going rather swimmingly at the end, I demurred.

Noto bene: Cough suppressants are contraindicated for whooping cough.  One reason is that cough suppressants often contain an “expectorant”, which is supposed to congeal post nasal drip that would otherwise continually trickle down from the sinuses, tickle the throat, and inhibit sleep, into a gummy wad for eventual disposal.  For whooping cough, it simply adds a difficult to eject, inhalable lump on top of the mucus one is trying desperately to push out of one’s windpipe.  Not good.

Important mucus tip: although disgusted observers can and will disagree, mucus that has been coughed up should be emphatically coughed out, with a firm disregard of aesthetic and social conventions.  The temptation might be to hold mucus in the mouth for discreet subsequent disposal or to cough it into a tissue—or, one might simply be dumbfounded by its appearance in one’s mouth and fail to take the second step of spitting it out, as I did a few times, especially when I woke up to a cough in a disoriented muddle--but remember the reverse “whoop” might be coming and the last thing you want to do is reaspirate the stuff you just coughed up (perhaps together some sodden tissue) and let it rejoin the party in your windpipe.

My recommendation for mucus ejection: standing straight up (one learns very quickly that one does not want to cough on one’s back against gravity), preferably with some forward motion to impart some velocity to the material, target being the sink; if not the sink, a cupped hand; it not a cupped hand, a shirtfront.  My opinion, anyway.

Sleep Is a Stranger

From my own experience, and from what I’ve read on the Internet, going to sleep is a source of significant anxiety and stress for a good number of whooping cough sufferers, because at any time they might wake up in a panic that they are suffocating as they flail around disoriented and desperately gasping for breath amid ropes of mucus that, often as not, get reaspirated into the windpipe and keep the whole cycle going.  In fact, I saw a medical paper that alerted physicians that the “patient who is afraid to sleep” was a useful diagnostic for whooping cough.

Sleep, in other words, does not ravel up the sleeve of care; it’s more like trudging up to Dracula’s castle for a night of dread and misery.  I decided that I was going to try to manage my whooping cough proactively.  An important consideration was my predisposition to black out during coughing spells—the “cough syncope” which I will describe below—but the alternative prospect of waking up several times a night to a full-blown paroxysm was unpleasant enough that I think I would have adopted my strategy anyway.

I resolved to try to anticipate and control my coughing, both during the day and at night.  During the day, I set a timer for ten minutes to remind myself to walk around, drink, and expectorate if possible, rather than get surprised by an accumulation of mucus and experience an unplanned coughing fit.  During the night, I set the timer for forty minutes and got up to walk around, take a hot shower, drink some hot liquid and, when conditions were ripe, engage in a violent session of coughing.  It worked pretty well (with an important caveat you’ll find at the conclusion of the piece), albeit at the cost of becoming a sleep-deprived zombie.

As noted above, I might have proceeded with this regimen in any event, but cough syncope made a close and continual attention to my coughing virtually mandatory.

Cough Syncope

A week after the onset of symptoms and a day after seeing my physician, I was reclining in the guest bedroom—to which the violent coughing had already exiled me—and I experienced another bout of paroxysmal coughing i.e. coughing that was convulsive, continuous, and impossible to control.

This bout had an interesting denouement.  After the cough began, I found myself somehow propelled off the bed and face down on the floor in a jumbled, disoriented heap, with a sizable abrasion to my head, and no idea how I got there.  I was also experiencing a powerful muscular spasm across my abdomen.  As I dragged myself back into bed, I noted to my astonishment and, yes, horror, that the entire right side of my abdomen was arching up in a spasm about an inch or so in height and starting to cramp.  Thankfully, the cramp didn’t materialize; I’m pretty sure I stretched out my legs and pointed my toes to counter the spasm.

The doctor informed me I had experienced a vasovagal event i.e. a faint or black out.  Since it was triggered by the coughing, it’s called cough syncope.  The Internet tells me cough syncope, though rare in the population and among whooping cough sufferers as a whole, occurs among ample gentlemen of a certain age who are muscular and fond of drink.  Guilty as charged.

It’s not safe to drive a car when vulnerable to syncope.  Inconvenient, to put it mildly.  No treatment other than to avoid triggers (some people experience syncope as a result of urinating or even brushing their hair). 

This was the first of a couple dozen incidents of “cough syncope” (pronounced sin’-co-pee; Batman auteur Brian Singer for some reason named his production company “Syncopy”; go figure) over the next three weeks.  

At first the etiology of the syncope appeared rather straightforward.  When it was time to cough, the muscles in my abdomen involuntarily and violently constricted like a large pressure cuff, compressing all my various innards to the point at which the pressure around my heart exceeded the pressure of the blood trying to flow back into it.  To avoid blowing a gasket, the heart pauses for an interval, and things return to normal.  The reason they return to normal, as far as I can tell, is because the subject passes out, the abdominal muscles relax, and the source of overpressure is removed. 

For the subject, cough syncope is complicated by the fact that it occurs virtually instantaneously within three to five seconds of a triggering event without any advance symptoms.  A few times, the syncope resolved itself before unconsciousness, though I did lose control of my limbs and stagger around “drunkenly”; but most of the time I simply went down completely and instantaneously unconscious like a sack of potatoes and came to about 25-30 seconds later in a visible cocoon of words, thoughts, and sounds (the only poetic feature of my experience), juddering like I was having a seizure (incontinence is not a feature of syncope, thank you, but there is some mild tongue-chewing going on), with a roaring in my ears, and anxiously trying to determine what damage I had done to myself this time.

They say the syncope doesn’t kill any brain cells; hope they are right.

I syncoped in bed and in chairs.  I gave up trying to sleep in a recliner (a common strategy for sufferers trying to mitigate the effects of waking up pinned with their backs to the mattress in a struggle with Mr. Mucus) because one evening I awoke to find myself the victim of a syncope, sprawled facedown on the floor with my leg entangled in the footrest of the recliner, unhurt but appreciating the fact that I could have cracked my skull open and wrecked my knee at the same time.

A lot of the time I experienced syncope when I was standing up—when I felt a cough coming on, I would immediately stand up, to relax the abdomen--which is rather risky.  As mentioned above, syncope comes on very quickly and acts instantaneously, so if you are standing up you basically fall down, without any protection such as putting one’s hands in front of one’s face.  

Miraculously (knock on wood), my head did not collide with any particularly hard or sharp furniture, but I did clunk my head on the floor hard enough to draw blood a few times.  At one time, I considered getting a special padded headband for figure skaters (they sell it at skating rinks) meant to shield them from dangerous falls.

Breathing Techniques

I developed a repertoire of techniques to try to avoid  and manage syncope.  Once again, I must declare I don’t know if these were good or smart techniques; I’m just relating what I did.

During the first, paroxysmal coughing phase, it seemed my body was determined to apply its total force to clearing the airway through the violent contraction of my abdominal muscles.  As a tribute to the pressures involved, I generated a nice, sizable hemorrhoid “down there”. 

When I sensed a paroxysm coming on, I would stand up (if I were sitting down) to reduce the compression of my abdomen and the resultant pressure spike in my abdomen caused by the contractions.  As the cough developed, I could feel the pressure increasing and tried to relieve it by breathing out of my nose, in three short bursts, even as the coughing was going on.  I believed that this was relieving the overpressure and shortcircuiting the syncope response.  Then I tried to remember to breathe in.  I would actually say to myself, “Breathe, breathe”; otherwise I sometimes froze up in anticipation of the next paroxysm.

This stage lasted for about a week.  In the next stage, the cough was still violent but, to my mind, not paroxysmal; it was a response to the blockage of the airway, not a runaway, convulsive reaction.  Maybe the paroxysmal cough is response to a certain amount of mucus flow and degree of constriction of the bronchi; as matters improve, one continues to cough and whoop violently and miserably, but not in quite the same end-of-the-world way.

During the second week, I had the feeling that my body was dealing relatively sensibly with the problem of expelling mucus from my airway.  Still a horrendous cough, often followed by the whoop; but the “pressure cuff” syndrome was no longer there; the hemorrhoid began to recede.

The syncope, however, remained.  I wasn’t sure if it was a symptom of whooping cough or had turned into a learned, neurally mediated response to any airway obstruction or violent coughing.

In any case, during the second stage if I started to cough, didn’t stand up to relieve pressure on my abdomen, “got in trouble” (did not clear the airway efficiently), and embarked on a rapid fire multi-cough episode, I had a predisposition to syncope.

At this point, I found that breathing in through my nose (as opposed to breathing out, as in the first stage) could forestall syncope.  Not exactly sure why this worked, but it appears to have interfered with the worst case scenario, which was uncontrolled multiple coughs in close succession, by spacing the coughs out and reducing their number and intensity.  Maybe it also it reassured my anxious brain that air was indeed coming in (even though much of it went down my esophagus to my stomach for subsequent belch-retrieval) and short-circuited the syncope response.  

During this second stage, the onset of a cough would elicit a chain of responses: standing up (if I were sitting down), flinging my glasses aside a la Clark Kent (faceplanting during a syncope is bad for the face and bad for the glasses), breathing in through my nose in short snorts, and trying to prevent the cough from becoming serial and convulsive.  Again, I often needed to tell myself to breathe in order to get past the appalled “deer in the headlights” phase.

If I lost control of the cough (for example if I was coughing three times in panicky succession and unable to put space between the coughs by breathing in), chances are I was going down and I would try to lay down on the floor before I fell to the floor.  

Tip: head on the floor or resting on a forearm.  Don’t get the idea that putting one’s head between your knees will help; it won’t (this isn’t a low blood pressure faint) and it simply makes for a longer and harder trajectory for your head to the floor.  The head is heavy and develops significant momentum over a short distance.  Once I drew blood when I syncoped with my head about five inches above a hard floor.

An important ancillary chore was keeping my nasal passages clear so that I could execute my breathing strategy.  If a coughing fit happened to hit while I was congested, the result was often a syncope episode.

Not a perfect system, and I collected an impressive set of marks and abrasions on my face and forehead, on my shoulders, and on my knees from syncope falls.  Not much related to my hands/wrists/elbows as far as I can tell, leaving me to draw the unfortunate conclusion that I was pitching face forward as I sank to my knees, and my arms were not pitching in to protect me.

In the third stage, as the mucus flow and the occasions for coughing it up continued to diminish, I could exert some measure of control over my cough reflex in addition to disrupting it through the breathing; but the cough would still sometimes “get away from me” if I got careless or some unexpected event occurred.  For instance, on one occasion I aspirated some cereal while breakfasting and promptly syncoped; on another occasion, an involuntary snort of laughter at a sneering aside from Jerry Lee Lewis (in a video; Jerry Lee was not present at my sickbed) sent me into partial syncope.

By the fifth week, the flow of mucus required clearing only two or three times per day, and I felt no inclination to syncope.  

Fortunately, it appears my tendency to syncope was somehow linked to the more severe stages of whooping cough, and not triggered by coughing in general.  Now, I haven’t experienced any syncope for several weeks despite some violent coughing episodes related to airway blockage and the vestigial effects of whooping cough.

The Sting In the Tail

By the fifth week I was beginning to get optimistic that the worst was behind me.
However, I became plagued with an ache in my chest (left side, about two inches above the nipple) that turned into a stabbing pain when I coughed.  The first time I felt the stabbing pain during a cough, it startled me enough to throw me off my game and I syncoped.  Rather stupidly, I assumed that the ache was from my persecuted bronchi (I now suspect there aren’t even pain nerves in bronchi). 

In actuality, the muscles in my chest were becoming strained from all the coughing.
In order to manage the pain of the cough, I took to immobilizing the left side of my torso.  When a cough was coming on, I hugged my arms in the fashion of a Page 3 girl seeking to accentuate her cleavage, and pressed my left arm down against my ribcage.  The result was quite satisfactory, and I experienced the dull ache during the cough, instead of the stabbing pain.

However, as students of Newton’s Third Law will tell you, for every action there is an equal and opposite reaction.

I learned this a night later as I felt a cough coming on, bustled my way up to the sink with my arms folded, and pressed.  The next thing I knew, I was coming out of a syncope on the floor with a genuinely blazing pain in my right side.  It took me about ten minutes just to get off the floor and half an hour to collect myself and get a handle on the spasming, at which time I realized that by pressing down my chest on the left side, I had transmitted the complete force of my cough to my right side—and dislocated a rib.

Rib dislocation is not unknown in whooping cough.  At the same time, I expect my aggressive cough regime (coughing every ten minutes during the day, getting up for a cough session every forty minutes at night) contributed materially to the strain.  That’s one of the reasons I wish to reiterate that my experiences are simply that—experiences—and I don’t want them misconstrued as recommendations.  Some of the stuff worked for me but maybe some of the stuff didn’t.

Coughing with a dislocated rib really hurts—it’s a burning pain, not just a stabbing pain-- and I was fortunate that I didn’t dislocate my rib until I was having intermittent coughing fits maybe twice or three times per day, instead of coughing every half hour or so.

In keeping with the generally doctor-free experience, my MD told me that there was no treatment for the rib except rest (they don’t tape up the ribs anymore because it’s conducive to pneumonia).

So there was nothing to do for it but take over the counter analgesics, try to find a comfortable position to sleep, and tell my long-suffering, supportive, and patient family that I would be out of commission for another few weeks.

In summary, whooping cough is a struggle in which the sufferer, the muscles of the abdomen, and the muscles of the chest are virtually equal and independent partners/competitors.  But I believe some relief can be obtained through strategies that accommodate, short circuit, and mitigate the violent muscular responses hosted by the body.

I welcome comments, correction, and advice in the comments.  Hopefully, they will assist sufferers in managing whooping cough and cough syncope.

Saturday, July 12, 2014
I Have Whooping Cough

For the last month I have been wrestling with an acute and fatiguing case of whooping cough (pertussis) caused by the bacterium Bordetella pertussis.

I would like to tell readers that immunization will protect them from this disease...but I can't.  [I subsequently discovered I had received a Tdap vaccination three years prior.]

Pertussis vaccine simply doesn't work very well.  The acknowledged failure rate for pertussis vaccine is about 20%.  However, misdiagnosis and under-reporting of pertussis cases is a major problem, especially for adults.  In my state of California, currently in the midst of a declared whooping cough epidemic, it is estimated that cases are underreported by 10:1.  In Poland at one time, it was estimated that cases were underreported by a factor of 167.  One Canadian study reported a mind-boggling finding that there were over 33,000 unreported cases of varying severity for each reported case in the adult cohort.  Taking the number of undiagnosed cases into account, the failure rate for the vaccine, therefore, is probably 30%, or perhaps even more.

There are no effective treatments for pertussis (identified patients are giving antibiotics to prevent contagion only), and the only sufferers who usually enter the medical system are infants who need breathing assistance.  So it seems that, as an untreatable condition for adults, pertussis isn't really on the radar of the medical profession.

Speaking from personal experience, when I visited the doctor, my practitioner concentrated on making sure I didn't have pneumonia.  My lungs were clear, so he assumed (perhaps also influenced by the fact that I had a current pertussis booster shot) that I probably had a viral bronchial infection. He gave me an antibiotic course "against potential complications", but the p-word or whoop-word were never mentioned.  By the time that my classic pertussis symptoms (paroxysmal coughing, whooping, the pleasure of listening to mucus gurgle up my bronchi, the added pleasure of desperately and violently expelling same upon awaking in the middle of the night, etc.) had presented, it was too late for the standard diagnostic (nose swabs), but I'm quite sure I got it.

I believe I got it from my offspring, who seems to have had a milder, asymptomatic case.  It looks like he, in turn, got it from an adult who was misdiagnosed.

In more good news, today the effectiveness of the Tdap booster is probably significantly less the 7-10 year rule of thumb and, if one has the misfortune of getting whooping cough, one doesn't even get lifetime immunity.

The medical profession is working on developing a more effective vaccine.  Even with the shortcomings of the current vaccine,I recommend making sure one's pertussis vaccine is up to date.  Complete protection would be nice; even partial protection is preferable to the alternative.

I am working on some pieces, but sloooooooooooooowly, in fact in ten-minute increments. If my case lives up to the Chinese description for whooping cough, the "hundred-day cough
百日咳", this situation might persist for a while.   I thank readers in advance for their patience and understanding.