An Olfactory ‘Reboot’ – my personal experience

The following may be of interest to anyone who, like me, suffers from rhinitis and accompanying ‘inflammatory’ anosmia, i.e. the type that can be managed with anti-inflammatory medications such as nasal corticosteroid inhalants, or Prednisone and so on. I have been managing it this way (up to a point) for over a decade.

Reading through the Yahoo Groups Anosmia Forum, it appears to be a fairly common complaint, and people are managing it in a variety of ways. In my case, it appears to be caused by inflammation in the cribriform plate, in the upper part of the nasal cavity.

Recently (late 2013), I decided it was time to ‘fine-tune’ my anosmia-management regimen. I subsequently expanded this into something a bit more ambitious, and embarked upon an experiment. As it turned out, this took on board a couple of ‘wild cards’ – which may have had a positive net effect.

The results have exceeded all expectations. In fact, my anosmia has disappeared completely – and my sense of smell has returned to normal. Mysteriously and unexpectedly, ongoing rhinitis symptoms have disappeared as well. 

For the first time in many years, I’m not taking any form of (conventional) medication. 

A breakthrough? Perhaps it’s a bit early to tell, but it may be a significant step forward. Even if the effects turn out not to be permanent, this particular approach might be a valid way of ‘rebooting’ one’s sense of smell, whenever required. Other anosmia sufferers might like to try this approach – so I’m putting pen to paper with as much detail as possible.

The method involves starting off with a very specific combination of medications – which are then phased out, and natural alternatives phased in. This was something I stumbled upon partly by chance.

Of course, I have no idea whether the approach will work for others, and I’m also not sure which precise mechanism has produced the result – therefore I will include a lot of detail, even though some of it may not turn out to be relevant. One important point: I’m not even remotely medically qualified, so ­– as always – obtaining professional advice is definitely advisable before attempting to follow the same program of medication.

Overview
Firstly, in what follows, I’ll describe my history with anosmia. Secondly, I’ll step through a series of events that recently took place, and the thought processes that led me down a particular path. Finally, I’ll conclude with a detailed table that gives precise timings and dosages, etc. Ask your doctor for advice about these dosages, and whether it should be overlaid upon an existing anosmia management regimen.

A brief history
(This section is provided for the purposes of comparison – so that a person can determine whether this experimental approach is applicable to their particular anosmia scenario.)

I have a form of inflammatory anosmia which developed in my late 30s. Moreover, I can identify the exact time frame when my sense of taste and smell started to come off the rails. It was during the 1997 Indonesian Forest Fires.  At the time, I was living and working in Singapore, and that small island city-state was immersed in dense smoke and haze for weeks on end.

Previously, throughout my life, I’d been prone to ongoing rhinitis, and had often tended to have a very blocked nose – but with all the smoke and haze from the Indonesian fires, I started to notice a distinct deterioration in my sense of smell. Fortunately, at times it would be quite OK – but at other times, especially late in the day, it would start to fade or even disappear. Long story short – two or three years later I ended up in an ENT specialist’s surgery, and he put me on a varied course of treatments.

Over time, these treatments included liquid medications taken up the nose with sprays and eyedroppers; occasional short courses of Prednisone; and a lengthy attempt at allergy control via multiple blood tests, which were followed by sublingual application of antidotes to certain allergens (cat fur, dust, pollens, etc.). I also spent quite some time on a special diet that precluded wheat and various other ingredients and foods.

I underwent one polypectomy – and then a couple of years later (after becoming a bit lax about my corticosteroid regimen) – a second one. Since the second polypectomy (and in an attempt to avoid any more in future) I have since been more rigorous in the application of nasal corticosteroids.

The use of a Pulmicort Turbuhaler has been pretty much my daily regimen[1] for a number of years, inhaled by mouth and exhaled slowly through the nose. However, the Budesonide powder has only worked up to a point. It certainly fixes the perennial runny nose problem. And it appears to keep the nasal polyps at bay. But it has never fully addressed the anosmia issue.

On occasion, I have experimented with upping the dosage for a few days – even to two or three times the usual amount – but this has only ever seemed to improve the anosmia very slightly (if at all). It has also led to a certain roughness in the nasal and breathing passages, and sometimes even a bit of added inflammation – so, on balance, has appeared to be counterproductive.

I gave up long ago on the ENT specialist’s allergy-immunisation approach, since that seemed to have no discernible effect.

A typical day
Since the start of my anosmia issues, I have considered myself quite fortunate – in that my sense of taste/smell generally seems to return to normal overnight. 

On a typical day, I will wake up in the morning with a very blocked nose, which, after the steam of a shower, and a good deal of blowing, ends up quite clear. Once cleared, I can then breathe freely, and on a good day my sense of taste/smell will hover around 80-90% in the morning and throughout most of the day – and then, mysteriously, fade rapidly in the late afternoon. At which point it will drop immediately to perhaps 50–60%. That’s on a good day.

On the other hand, there are also bad days where it hovers around 60-70% during the day, rapidly fading to 10% or zero in the evening. The process will then repeat itself the next day.

It has always puzzled me that the process of fading is quite rapid, and without warning. I’m also usually not aware of it disappearing until I try to smell something. On anosmia-related websites, I have seen mentioned certain ‘reference’ smells, such as peanut butter. I too have such reference smells – and these include liquid hand soap, the smell remaining in the cup after finishing a cup of tea, tap water, and other common ‘ambient’ household environmental odours.

In my case, peanut butter would be one of the first types of smell to disappear. And it seems to be the ‘low’ notes that disappear before ‘sharper’ smells: in the example of liquid hand soap, the fragrance may remain discernible – while the underlying ‘soapiness’ itself might not be. 

The varieties of smell that disappear first seems to vary according to the individual – for example, on the Yahoo Anosmia Forum, others have noted that peanut butter is one of the last smells to disappear, with vanilla being one of the first.

Recent events – a 7-day experiment
Since late 2010, I had sworn off Prednisone, after having read numerous horror stories on the internet. But in late 2013, I was chatting to my doctor about its use, and he suggested that the occasional 1-week course[2] probably wouldn’t do any harm – and gave me some general guidelines to follow. Essentially, this meant leaving a sufficient gap after any Prednisone course, before starting another one.

After my discussion with my doctor, and since my anosmia had been somewhat troublesome recently, I decided to embark upon a 1-week course of Prednisone, just to see if I could get things under control again. For the time being, I also decided to discontinue my Budesonide inhaler regimen for a few days.

Day 1 (12 October 2013) – the Prednisone
I took one Prednisone tablet in the morning, and sure enough, within a few hours, my sense of taste and smell was absolutely perfect. I started to marvel at all the subtle aromas that had become accessible. Indeed, I looked forward to a whole week of being able to smell fully and completely. (I also made a mental note to start using Prednisone judiciously in future – particularly in preparation for events that involved fine dining, artisan beer appreciation, wine tasting and so on.)

Day 2 – The alcohol
The next day, I was visiting some friends for a barbeque by the sea. And, with my newfound sense of taste/smell, I didn’t hold back tucking into numerous delicacies, washed down with copious quantities of beer and white wine. (In my enthusiasm, I didn’t stop to think that there might be some kind of unpleasant interaction between Prednisone and alcohol – and thankfully, nothing adverse was experienced.)

Late in the afternoon, my host and I embarked upon a short walk through some very prickly undergrowth, to look at the view out to sea. We returned after about 10 minutes with quite a number of scratches on our legs and arms, from brushing aside the sharply spiked Lantana bushes. This was the start of the bushfire season, and there was a noticeable smoky haze in the air, from fires to the west. More drinking ensued. I returned home, slightly worse for wear, to recover overnight.

Day 3 – the experiment starts to take shape
The next day, aching slightly from the alcohol, and from the scratches on the body – some vague thoughts started to take shape. I was aware of how much benefit the Prednisone was providing, and how vastly superior it was to my usual inhaled Budesonide.

I also pondered how a tiny white tablet dissolved in the bloodstream could be so much more effective than the white powder I had been inhaling daily, which – after all – was being applied directly to the problem area: i.e. the upper nooks and crannies of the nasal cavity itself, in the region of the olfactory bulb and the cribriform plate.

But not possessing any kind of medical expertise (aside from self-diagnosing via Wikipedia and Google) I started to think of the Prednisone in ‘home handyman’ terms. It seemed to me as if – much in the same way that a piece of timber veneer could peel off an item of furniture and require re-bonding – the Prednisone was reducing inflammation, thus enabling membranes to become ‘re-bonded’ to their fleshy or bony substrate high up in the nasal cavity.

It then struck me that this might be an ideal time – the middle of a Prednisone course –  to start introducing ‘alternative’ remedies, which could then take over from the potent, but danger-fraught corticosteroid. My (admittedly simplistic) theory being that once the nasal membranes had become less inflamed, and had re-bonded thanks to the Prednisone, the alternative remedies – most likely being relatively weak and ineffective – would then have the best possible chance of keeping things under control thereafter.

Another one of my pet theories is that the underlying inflammation, by placing pressure on the nasal membranes, leads to further inflammation – in a kind of 'snowball' effect.

(Medical professionals may well scoff at simplistic theories such as these – however, I would remind them that so far, medical science has yet to develop effective remedies for inflammatory anosmia and rhinitis. Either for want of trying, or because the problem is too difficult.)

So I started Googling search terms along the lines of ‘natural alternative to Prednisone’, many results came up on the page. Indeed, it seemed to be quite common for natural remedies to make the claim of being ‘anti-inflammatory’. (Perhaps the claim is vague and general enough that manufacturers can get away with it without providing any supporting evidence.)

I will certainly admit to being a little sceptical when it comes to natural remedies – but two that appeared to hold at least some promise were: a) certain categories of marine lipids; and b) curcumin, a derivative of the spice, tumeric.

Wading through all the claims and counter-claims, it appeared that Curcumin – anecdotally at least – did deliver some tangible anti-inflammatory properties. On various discussion boards, I noted that arthritis sufferers, historically, had been major users of Prednisone. And there were indications that good results had been achieved by at least some who had tried Curcumin as an alternative to Prednisone. A few scientific studies had also been attempted – though the results seemed inconclusive. With not much to lose, I decided to purchase some Curcumin tablets, and to phase them in at the middle/end of my Prednisone course.

At the same time – assuming the Curcumin in the bloodstream would have a fairly weak effect (if any) – I thought it would be worthwhile to simultaneously use some form of topical treatment as well. So this was to be a ‘push-pull’ approach: to attack the problem from both sides, as it were, with some kind of inhaled non-pharmaceutical preparation.

Naturally, my thoughts turned to some experiments I did about 10 years ago with inhaling a home-made preparation containing capsaicin – the results of which are featured on Dr Karl Wuensch’s Anosmia Pages.

Those Capsaicin experiments initially showed promise, but I never pursued them. With the benefit of hindsight, it now seems that I’d had quite a few nasal polyps developing, and was already on track for my second polypectomy. So it was not surprising that the long-term effects didn’t work out.

However, over the years, in the back of my mind, I’d always felt that there was potential with Capsaicin – and perhaps my current polyp-free environment was a good place to start. So, searching for Capsaicin-based products available over the counter in Australia, I purchased a metered-pump bottle of Rinar[3], by Inova Pharmaceuticals.

Finally, playing it safe, I also decided I would resume my long-term daily regimen of inhaled Budesonide, as a backup, for the time being.

Day 4 – the Paralysis Tick
Since my short walk in the bush on the previous weekend, the numerous scratches had rapidly healed. However, I had started becoming aware of a particularly persistent swollen lump in the small of my back. It was in an odd position, where it was difficult to see – even in the mirror. I’d assumed it would go away, but it seemed to be becoming more swollen, even though I had now been taking Prednisone for four days.

Initially undergoing a touch of hypochondria (considering the possibility that it might be a malignant tumour or fatal growth of some sort) I finally asked my wife to examine it.

She was somewhat alarmed to find a Bush Tick embedded in my back, apparently alive and thriving. These large ticks are not uncommon in some areas, and are also known as the Australian Paralysis Tick. But it didn’t seem as if the tenacious beast would be wandering anywhere, and being late in the evening, I decided to go and see the doctor the next morning.

Day 5 – Antibiotics and Chili
At the doctor’s, after several minutes of struggling, he managed to extract the still-living creature, and he gave it to me in a small specimen jar. These ticks carry toxins, along with certain diseases, so he prescribed me a 1-week, 20-capsule course of the antibiotic, Keflex. He also said that if the lump remained after the course was finished, that I should immediately start a second course.

Day five was also when I had planned to start using the Capsaicin nasal spray, and I proceeded to do so, that afternoon. On the first spray, there was certainly a sense of deja vu, as the burning liquid shot up into my nasal cavities. Make no mistake – this is a very uncomfortable experience. Inhaling chili extract is counter-intuitive, and gives the subjective feeling of doing damage to the nasal passages.

The instructions for Rinar suggested a couple of metered-pump sprays into each nostril, and to repeat this twice, spaced about half an hour apart (for a total of three sprayings daily). I proceeded, as per instructions. This thrice-daily program continues for two more days.

Day 6 – The Mecca position
The next day, I repeated the Rinar spraying, and was relieved to note that there was far less discomfort this time around, as the nasal linings were already becoming acclimatised to the hot chili solution. At this point, I made what I believe to be a crucial and significant decision: after spraying the Rinar in a normal upright position – I then moved to the ‘Mecca’ position, which is to kneel on the floor with my head as close as possible to upside down. 

This caused the hot chili solution to then run towards the upper regions of the nasal cavity – presumably close to the Olfactory Bulb. Additional discomfort ensued. I did not remain there for very long – perhaps 10 seconds. When I resumed the upright position, I could feel the chili heat running down the back of my throat. From this point onwards, I decided to repeat this procedure once every three or four days or so.

This was second last day of Prednisone, so I decided to start taking its ‘natural equivalent’, Curcumin, daily from this point forward. The bottle suggested two tablets daily, but figuring the effects would be weak, I decided to take four. At this point, I also resumed my pre-existing regimen of the Budesonide inhaler.

Day 7 – the cocktail
This was the final day of the Prednisone. Looking back now, I can see that by this point there would have been quite a cocktail in play: including Prednisone, Budesonide, antibiotics, Capsaicin, Curcumin; not to mention tick toxins and possible accompanying diseases. There had been no apparent adverse effects from this mixture, however.

Day 14 – a surprising development: nothing at all
I had been off the Prednisone for a week, when it began to dawn on me that there were no signs at all of any anosmia or rhinitis symptoms returning. This was certainly quite unusual, as I had used Prednisone many times over the years, and such symptoms had usually returned within two or three days, guaranteed.

I hadn’t been keeping any kind of diary up until this point. So I went back over what had happened in the previous couple of weeks – while it was still reasonably fresh in my mind – and made notes of what had transpired, including what I’d taken and when.

Day 15 – the lump remains
There was still a large hard lump on my back, from the tick bite, so I commenced the second course of Keflex.

Day 24 – cutting back the Budesonide
There were still no sign of any symptoms returning – so I decided, from this point, to cut back the Pulmicort Turbuhaler a little, either by using a lower daily dosage, or skipping a day here and there.

Day 33 – ceasing the Budesonide
With still no sign of any symptoms, I decided to cease using Pulmicort altogether. Of course it would remain on standby, in case of any symptoms.

Day 50 – writing these notes
That’s about it. I haven’t used any Budesonide since Day 33, with no sign at all of any symptoms. Bearing in mind that the Budesonide has only ever controlled things up to a point – I would have expected symptoms to start returning at approximately Day 10, a few days after cessation of the Prednisone. Which makes about 40 clear days in total, so far.

Based on my experience of the last decade or so, 40 days is extraordinary. Will symptoms eventually return? Who knows? If they do, I will attempt to replicate this process as closely as possible, as an ‘Olfactory Reboot’.

I’m continuing to use Rinar, the capsaicin nasal spray, every few days. I’m pleased to report that there is now virtually no discomfort at all – the experience is somewhat similar to inhaling ordinary black pepper, and merely tends to bring on a fit of sneezing. Presumably this is because the nasal passages have become acclimatised to the hot chili.

I’m also continuing to take curcumin tablets daily, but am still fine-tuning my intake to determine the optimal dosage, as it’s not particularly cheap.

Finally, there’s been another aspect of this that I find quite encouraging. For as long as I can remember, waking up in the morning has meant a seriously blocked nose, and a lot of heavy blowing, and a steamy shower to clear things. (Even with long-term daily use of the Budesonide inhaler.)

However, this whole time, I have been waking up with either both nostrils completely clear; or with merely some slight blockage in one or the other nostril, and only requiring a little light blowing.

Unknowns (and probably unknown-unknowns)
It would be fascinating – not to mention greatly beneficial to people’s lives – if this experiment could be replicated by others. However, there unknowns, and possibly some ‘unknown-unknowns’. For example, I haven’t discounted the idea of a beneficial interaction between Prednisone and alcohol on Day 2. Or was it a beneficial interaction between Prednisone and tick venom?

I also mentioned there was bushfire smoke present in 1997 – when the problem began – and in late 2013, when I commenced the experiment. Was it some kind of immune response to the smoke? I will note that the Indonesian smoke in 1997 was a heavy blanket; whereas the recent smoke in Sydney has usually only been a faint haze – so I’m not sure whether there’s any link there.

Conclusion
Obviously, while certain environmental aspects of the experiment cannot be replicated – the medications and schedule could easily be. If other people would like to try this, I would be interested in hearing whether it works for them. I have outlined the schedule in a downloadable document.

Matt Stone.

To download the document that provides details of which pharmaceuticals/natural remedies, and the sequence, go to this page

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[1] Budesonide 400mcg (Pulmicort Turbuhaler) one or two puffs, once or twice daily, inhaled either by mouth or into the nostrils, and then exhaled slowly through the nostrils.

[2] My doctor prescribed a dose of 25 mg, once per day, for up to 7 days. This could be doubled to 50 mg if symptoms were not being controlled. No tapering was called for, after a short course such as this one.

[3] Rinar is an Australian brand, manufactured in Italy, which has possibly been discontinued. There appear to be similar Capsaicin-based nasal sprays available, such as SinusBusters (http://www.busterbrands.com) in the USA, or Capsinol (http://capsinol.com/EN/) in Europe. At the time of writing, both SinusBusters and Capsinol are listed on eBay.