Sleep, Autonomic breathing and How Empty Nose Syndrome Destroys Sleep:

Feedback from the nose has NOTHING to do with sleep” (Dr. Greg Davis University of Washington) 2012

Chart below: Measure of the Standard Deviation of nightly Pulse Oximeter O2 level readings since 2011sleep2From studying the chart above with a smoothed 10 day moving average (black line) it becomes clear that feedback from the nose has EVERYTHING to do with sleep. After getting cartilage grafts, I briefly regained the breathing reflexes mentioned below on Wikipedia after years of living without them: 

Below is a graph of my O2 levels while sleeping which compares a typical measurement from 2011 prior to getting help with one day after implants when I thought I was “cured”. My personal experience is this: There is a “hand off” when you fall asleep between conscious breathing and autonomic breathing. When there is no nasal sensation, your brain will not let you drift off. It puts you in a state of heightened alert for suffocation which is of course not compatible with your brain shutting things down and allowing you to drift off feeling that all is well. You feel like you are drowning and these sudden severe spikes in panic occur right as you try to cross the threshold to sleep. Eventually, if tired enough, you will finally drift off but the sleep transition is a very rough ride. Thereafter, not only are there periodic drops throughout the night but there is a high level of “oscillation noise” as if running in open loop with no feedback to control things.

These ill effects have all occurred for years while my wife’s results (when measured with the same device) look perfectly flat.  Getting implants clearly helped me with this transition and with staying asleep longer as the sleep cycles change. ENS is (in part) basically surgically caused sleep Apnea which is a serious disability. During my official sleep studies there was very little REM sleep. sleep1

I eventually came up with a better way to numerically quantify and compare the quality of sleep I was getting. I simply created a spreadsheet that imported the text files and took the “Standard Deviation” for the entire night. This beautifully captured the nature of the constant oscillations in my O2 levels. Below is a historical graph of these nightly measurements dating back to 2011 from which many lessons can be learned. There is a gap in time (red line) where I took a break from measuring.

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I started recording sleep data in 2011 at a low point when things were unbearable. The STD-P values were in the 1.8-2 range in 2011. I felt horrible and was barely able to sleep at all. What little sleep I did get was punishing not restful. Dryness and nerve pain was becoming extreme and I was using oils in my nose to help but oil coats the mucosa tissue blocking what little sensation remained making my suffocation feelings worse. I discovered how to make prosthetic clips to narrow down my nose that I wore on my upper septum and things improved in 2012. The prosthetic clips helped with the dryness and I didn’t have to spray saline as often and was able to sleep in 2-3 hour chunks. In late 2012 I had cartilage grafts and 4-6 weeks afterward, I thought I was almost cured. STD-P Readings approached 0.5-0.6 area but then the swelling went down and I opened up again. After the 6 week period my readings were actually worse for sleep but during the day I felt a lot better and had less anxiety and dryness.

In 2014 I had my first lateral wall implants and the reaction in the graph is clear. Once again 4-6 weeks post op yielded the best results but then the porcine based material used shrank considerably.  In 2015, I had them augmented with Alloderm and the results were way better the second time. Every aspect of life was better and in agreement with the sleep readings which dropped into the 0.7 range and stayed there far longer.  Things slowly regressed again but each implant operation raised the floor. Day time symptoms were much better. I am unsure why things have seemed best 3 times in a row exactly 4-6 weeks after a surgery. There is probably an optimal time where things recover and are still slightly swollen.

Eventually I tried having a previous IN-Fracture undone and pushed back away from the septum. They were in pretty far in at some locations and were causing an obstructed “feeling” despite being very open. Once again, this greatly effected sleep. For the first time in 8 years, I slept 5 hours straight! When the swelling went down, once again things reverted somewhat. The graph results from that period show an unstable system with lower lows and also some higher highs. Next I received some injections of temporary filler in different locations followed by injections of Acell into the areas that seemed to help and today in 2016 I am almost anxiety free compared to 2011 and I am able to sleep 4 to 5 hours at a time now.

Zooming in to more current times only I put red and green bands on the next chart which denote thresholds for “good” or “bad” sleep so things are easier to read. The response to nasal implants was overwhelmingly positive. There were a lot of hits into the green zone following the second implant which was much larger and also more anterior as I had been suspecting would help. Cotton tests prior to these surgeries yielded exceptional benefits. I was out of breath on my way in with any activity at all. While I had the cotton stuck to the lateral walls of my nose I went outside and jogged. I was not out of breath! Later the same day while leaving, I ran 20 yards to catch a shuttle and I was out of breath again. In short, everything I found that “felt” good, (be it prosthetic clips or implants) also proved to be beneficial for sleep.

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KEY FINDINGS:

  • Using Gels and oils in the nose made my day time suffocation symptoms much worse and also clearly made sleep worse too. This is not subjective. Oils may bring relief from dryness for some but oil coats the mucosa and deadens any remaining nerve sensation which proves exactly that feedback from the nose is critical, that the brain interprets this as lack of air flow as suffocation and that depriving one of that feedback destroys sleep. I stopped using oils late in 2011 and things clearly improved but dryness was then an insolvable problem.
  • Being open makes things worse. I can see changes in one night just using steroid sprays. I can even tell which one worked the best: Veramyst because every time I used it I felt much worse because it actually works and shrinking the tissues made me more open. I can even see the effects of nasal congestion with dairy foods. Taking data routinely allowed me to control all input variables and isolate their effects.
  • Implants greatly help with every aspect of ENS including sleep. You can plainly see a big response to each implant surgery. All 3 seemed to yield a peak benefit 4-6 weeks after the surgery then give back “some” but not all of the benefits. Despite the looks of the graph, many day time benefits of implants stayed like a massive reduction in anxiety and muscle weakness, especially after the 3rd intervention. Those benefits remain to this day.
  • The nasal valve plays a huge role. In 2012 The fact that wearing prosthetic clips on my septum helped me sleep better and yielded lower STD-P values is vindication for the theory that anterior velocity is crucial and was missing. These basically narrowed the nares and extended in a few mm away from the heads closing down the over opened head gap.
  • In-Fracturing” or “Out-fracturing” the nasal turbinates or even remnants makes a huge difference. During the same Cartilage graft procedure I had also agreed to an “In-Fracture”. It is clear there was a benefit to the grafts but as the swelling resided and my 4-6 week post operation “honeymoon” was over, my readings and sleep again worsened. I was still far too open but things were a lot better in the day time and anxiety was much lower. My feeling was that after things de-swelled, less air made it into the common meatus due to the In-Fracture. Something felt odd and wrong to me. Of course with ENS there is no more “normal” but I was suspecting the In-Fracture was adding to the usual mix of bad feelings. Eventually, 3 years later after another implant surgery I asked and agreed to have them Out-Fractured “slightly”. This did indeed help things as I slept for 5 hour periods for the first time in 9 years. Previously 2 hours was average and 3hours was the best I saw. Sleep is still very difficult and problematic but the location of the turbinates certainly plays a big role in how you feel. Perhaps an Out-Fracture in the first place alone rather than surgery would have helped me and others as well.

I had encountered doctors who questioned my symptoms of ENS. I had heard quite a few times that it is “subjective” and possibly in their heads, that they are depressed people and that is why they had a bad outcome etc. The reason I became fond of recording and analyzing sleep data is that I can’t “pretend things” while I am asleep. Empty Nose Syndrome DESTROYS sleep. Being treated like an idiot regarding all aspects of ENS at the University of Washington was the final impetus for me to start this study so I should thank them.

We all need sleep to live. Just as we need air, food and water we also need sleep or we will die. It has been shown that a rat will die within 3 weeks when deprived of all stages of sleep. For humans a shortened life span is likely if you get less than 6 hours of sleep per night. Many ENS victims sleep even less. People who are chronically sleep deprived are at far higher risks for heart disease, strokes, cancers and diabetes. When sleep deprived your brain puts your body into a high level of alertness and produces high levels of stress hormones in your body which leads to inflammation and high blood pressure. Sleep is a science unto itself and our knowledge about sleep is still unfolding: http://www.ninds.nih.gov/disorders/brain_basics/understanding_sleep.htm

I had 3 different “official” sleep studies and each told me that I had “Central Sleep Apnea” and that they had no idea why. Earlier in my life I slept right through large concrete blocks being thrown into a dump truck across the street from my house. Even when my nose was obstructed prior to seeking surgery I slept and felt like a healthy person. I hiked up steep mountains with no difficulty. After nasal surgery things started to get worse in different ways. I started having anxious dreams that would pound me awake sweating. I was grinding my teeth. I was waking up more and more frequently. I described to my wife in the period after surgery that “sleep felt like getting into a coffin for me”.

Of course these were all hints knowing what I know now, but I wasn’t warned. One particular night not long after surgery as I lay in the pillow, my breathing felt blocked up. A very short period later it was like a switch turned on and I felt like I was open. This effect cycled 2-3 times over a short time frame of 5 minutes and looking back it was far too fast to be a nasal cycle swelling and de-swelling, it was more like an electrical switch was being turned on and off. It was most likely my remaining nerves in my nose shutting off for good. During this same period I had sleep attack that I thought was a heart attack. I ran to my doctor that day and he called it a “Hypnagogic Reaction”. I was pounded awake by fear but my muscles were still in sleep paralysis state. I couldn’t move or even talk to my wife who was right beside me. I thought I was dying and it sure felt like it. Needless to say I never had one of those in my pre-nasal surgery life.

Empty Nose patients are often chronically sleep deprived. I have seen few on either the facebook support group or the ENS Forum that are able to boast about being able to sleep. Most are like myself, crippled and chronically sleep derived. There has been some debate by doctors as to the effects of ENS on sleep. While some agree some do not and I have personally encountered this. I had read Dr. Marc Oliver Scheithauer’s excellent study: “Surgery of the Turbinates and Empty Nose Syndrome” in which he made more than a few references to ENS negatively impacting Autonomic breathing. While I was at the University of Washington I mentioned this to Dr. Greg Davis and he literally laughed out loud in my face and said: “Feedback from the nose has nothing to do with sleep!” So once again despite evidence from studies, here is another area where not all doctors are in complete agreement which was a final straw for me in figuring things out for myself here. I contacted Dr. Scheithauer and asked his permission to liberally quote from his study. He very kindly granted me permission and I have added all of his pertinent quotes from that study at the end of this chapter on sleep below.

This was of course just another painful chapter in my journey of discovery. I had been keeping meticulous records of my sleep data and after receiving Cartilage grafts by a really great doctor I found that 4-6 weeks after the reconstructive surgery I was starting to feel really strong and I was naturally tired again at night. Prior to Cartilage grafts I never felt naturally tired I felt “physically exhausted and wired”. I found that I no longer needed drugs to sleep. There was a honeymoon period lasting a few weeks which culminated in my regaining autonomic breathing. I really never knew what it was back when I had it. I am sure we all take it for granted like seeing or hearing but one morning I awoke and felt an unmistakable guiding force directing my breathing. I had not slept much at all for years and I knew full well what it felt like to wake up every day feeling like I was run over by a truck. That day the sensation of automatic guided breathing was VERY apparent. It had been so long forgotten and dormant that the process almost seemed “rusty” and “clunky” to me. It was so mechanically obvious but it was also like an old friend. It was odd in that it was so strikingly different than every other day that I was almost afraid. Quickly as I awoke that morning, I realized what it was and I thought that I was cured! There was indeed an absolutely unmistakable connection from my nose to my brain to my diaphragm and my lungs that was driving all by itself. I drifted in and out of sleep a few times which was usually impossible and was dreaming. Unfortunately, I never saw it again. It was like being blind for 10 years and seeing for part of a day. Some people claim to have seen Elvis, all I am saying is that I now KNOW for a fact what it is like to breathe normally. I am saying that this is not theory, it is fact. I have O2 sleep records of that night and many other nights since 2011 that prove that ENS directly destroys sleep by severing one of the inputs to the brain for autonomic breathing, the nose.

Pertinent Quotes from Dr. Marc Oliver Scheithauer’s excellent study: “Surgery of the Turbinates and Empty Nose Syndrome”

When I first read this study it explained a lot to me about exactly what was causing my sleep issues. It is actually a hard article to quote from because the entire section on ENS is especially excellent and it is all critical to understanding how the nose actually works. I asked Dr. Sheithauer for permission to quote from his article at length and permission was kindly and graciously given:

It is well-known that mechanoreceptors, proprioceptors, thermoreceptors and nerve endings occur in the nasal mucosa, the number of which is largest in the region of the inferior and middle turbinate. Above all the activation of the temperature receptors through the inspiration of cold air would appear to be a main stimulus for the activation of the naso-pulmonary reflex.”

Wrobel reports that the plate epithelial lining of the nostrils has the highest sensitivity to air flow so that the whole respiratory system can be adjusted early to changes in air flow [228]. After removal of the turbinate tissue, the number of receptors is reduced so it is probable that reduced tactile perception disrupts signals to the brain [229].”

Through the expansion of the nasal cross-section, respiratory resistance is reduced and thus the pressure gradient at the interface of air and mucosa. This causes a malfunction of the naso-pulmonary bronchomotor reflex, which can then cause a deterioration of pulmonary function. In contrast to this, the optimum nasal respiratory resistance is responsible for a dilatation of the peripheral bronchioles and an improved alveolar gas exchange.”

In this study, discretely higher temperature values in the ENS nose were measured, the absolute humidity in the whole nose was reduced, however. The nasal mucosa in the case of ENS is thus warmer and dryer, making it safe to assume that on the one hand the nasopulmonary reflex mechanism and the introduction of free nasal breathing are affected at the same time. The symptom of subjective dyspnoea in ENS patients may also be explained by this.”

About one third of the temperature and the humidity which are given off to the mucosa via convection during inspiration are extracted from the mucosa again during expiration [233]. Interestingly enough, in the flow simulations significant vortex formation was evident in the choane area, in other words the physiological constriction between the wide nasopharynx and the posterior apertures of nose and the posterior main nasal cavity. This explains the fact that ENS patients complain not only of a dry nose, but also of a dehydration of the pharyngeal mucosae. Normally, expired air coming from the lungs is moist and warm. This air meets a climatic milieu in the nose which is dry and warm. The nose is thus not able to reabsorb the moisture transported from the lungs. The reason for this is the reduced mucosal surface, which does not allow sufficient condensation.”

Elad et al. see a direct connection between the pressure gradients of the shearing forces, the temperature gradient in the nose and the subjective experience of free nasal breathing [229]. As well as on neuronal stimuli such as air temperature and volume, this also depends upon the amount and the functional efficiency of goblet cells in the turbinate mucosa which are triggered by particular pressure conditions and thus determing the secretion of mucous. Studies have demonstrated that mechanical stimuli, such as pressure and shearing forces, can positively modulate the transmembranous transport within epithelial and endothelial cells [236], [237].

It is accepted that optimum pressure values within narrow limits in healthy people trigger both mucus production in the goblet-cells as well as the ciliary function in order to regulate mucociliary clearance on a cellular level. The precondition for this procedure is a correct balance of pressure values or shearing force on the nasal mucosa [238]. In the case of patients with ENS, these regulation mechanisms are disturbed by altered shearing forces; the pressure profile curves show a more rapid drop on the pressure gradient between the anterior and posterior nasal sections (Figure 14). The surgical reduction of the nasal cross-section in order to positively influence aerodynamics and to increase airway-resistance does not, however, alter the conditioning function of the nose, which is irreversibly damaged [220]. The reconstruction or transplantion of the missing respiratory mucosa is not possible at present. For this reason, patients profit only to a limited degree from socalled “endonasal augmentation surgery”.

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