Adam’s Story: The Physical Challenges That Helped Samters Triad Smell Loss
In January 2017 Adam Hawkins’ life changed dramatically. Having taken nothing more than a normal dose of Ibuprofen he suffered severe respiratory reactions. Then, in the weeks and months that followed, his health unravelled. Eventually, he discovered that he was suffering from Samter’s Triad. Here’s Adam’s story in his own words.
Adam turned to running. While fit, the forty-three-year old father of three had never run before, certainly not with the intensity he now brought to distance running. He found that preparing for and running half marathons helped him cope mentally. Sometimes the heavy physical exertion even returned fleeting moments of smell and taste.
Encouraged by all this – and some very good running times – Adam is testing his boundaries with a serious programme of marathons and extreme sporting challenges. He wants to show others that they shouldn’t let their disorders hold them back. Adam is running to raise awareness of his condition and to fundraise for Fifth Sense.
1st symptom: reaction to NSAIDS
At the end of January 2017, I had to take some Ibuprofen after a sports injury to help with inflammation in the affected area. I took it at breakfast and within 20 minutes of being at work, my eyes were watery and my nose was sniffly – common if I was stroking a cat but not just after a honey nut and Ibuprofen breakfast… So I took an antihistamine and went back to work. Within another 20 minutes my chest had tightened to the point my eyes became bloodshot but I soldiered on for another two hours until it subsided. (NB: my GP told me off for this behaviour – lesson learned…)
The following week when I saw my GP and told him about this reaction to Ibuprofen, I also mentioned I was getting a tight chest after playing football and randomly throughout the day.
Nothing major but enough to notice. He sent me for a x-ray which came back clear, stated“it’s not asthma” and then asked me to keep a diary, writing down when the events happened and noting food and environment etc, which I did for a few months. The only thing that set me off during this time was alcohol. I promptly stopped drinking – it gave me sleepless nights anyway.
2nd symptom: loss of smell and taste
One night I burnt the tea. I never smelt it burning but what was worse, I couldn’t taste anything. It seemed ok to serve so I asked one of my daughters to try it: “urrgggh, that tastes burnt, Daddy.” Then a few days later while cooking one night, l noticed I didn’t cry while cutting onions and couldn’t smell the garlic when frying it. Also, my housemates said “thatsmells nice” but I couldn’t smell anything. At this point I brought out the spices and herbs but not one of them could I smell.
My next appointment with the GP was a week later in June 2017 and after my revelations, he suspected nasal polyps and prescribed a nasal spray to use twice daily for 8 weeks.
3rd symptom – nasal congestion
The next 8 weeks was hard as the “asthma” progressively got worse (daily episodes varied from 3 to 12 times daily) and I noticed pressure around all my sinuses. Luckily it wasn’tpainful. Friends also asked if I had a cold as I sound nasally. What was coming out of my nose looked alien, is the best way to describe it…
After no improvement with the nasal spray my GP referred me to the ENT department.
My first ENT appointment was in November 2017, in Nottingham. The Consultant performed a nasal endoscopy to look up the nose and sinus passages. He diagnosed nasal polyps then prescribed a course of Prednisone (oral steroids) and to return in a few months. After 4 days on Prednisone I could smell and went days with no breathing trouble. I was elated. However, within a week of finishing the course, the old signs were back and, if anything, my asthma seemed to be worse.
In January 2018 I noticed more asthma flare ups, averaging 6-12 episodes a day, so my GP gave me another course of Prednisone and a rescue asthma inhaler. The Prednisone did exactly as before, so after finishing the course I just got on with living without a sense of smell and experiencing constant asthma episodes. The rescue inhaler relieved the tightening of my chest but I regularly had an episode each day where it would be so tight I would wheeze.
My 2nd ENT appointment was in Melton Mowbray. I sat with my ENT Consultant and told him the whole story. He told me I had Samter’s Triad, otherwise known as aspirin exacerbated respiratory disease (AERD), and said “you will be medicated for the rest of your life.” He then prescribed a course of (guess what!) Prednisone, plus antibiotics and a steroid soak to do morning and night. If anything I was in shock; at this point in my life my health was at an all-time low. I knew nasal polyp surgery was an option, so l requested to be put down for it, and in the end my Consultant agreed. He also sent me for a scan to assess the severity.
May 2018. The last course of antibiotics and Prednisone had worked in the same way as before, but luckily (or unluckily) for me I had to undergo toe surgery, so while I was off work I decided to research this disease. The NHS website was my first search but nothing came up. So I googled Samter’s Triad, and the only thing that came up in the UK was a Fifth Sense website interview with patient Alahree McDonnell on the disease. I still needed to know more – at the top of the search page was a US based Samter Society which has a resources page with everything you need to know, even a Facebook group.
So while I was off for a few months I spent a week or so looking and learning about the disease, but the asthma in June 2018 became too much to manage so I paid my GP another visit. I went through what I’d learned about the disease and how it affects the body, but he could only suggest another course of Prednisone, and we mutually agreed this would be last course of this drug as the ongoing use has some long-term risks.
After the brief break while Prednisone gave its short-term relief, the hot weather seemed to be keeping my asthma at a low key – no wheezing, just a few daily occurrences of the tightening of the chest. After having a scan in June, the follow up appointment with ENT was in August. My Consultant said that the scan revealed my sinuses etc were badly blocked so I agreed with him to refer me for surgery.
But in August the wet weather returned along with my asthma, and I had increased asthma episodes over the next week, waking up most nights and wheezing for hours, with my inhaler doing nothing to relieve it. One night, at my wits’ end, I turned to the Facebook group knowing they were based in USA so they would also be awake. I posted my dilemma and explained what I was taking, and within 30 minutes around half a dozen people said I was missing the Singulair drug which controls asthma. I visited my GP the next day, explained the severity of the asthma attacks and the sleep deprivation it was causing, and what I had found out on Facebook. He said it made sense and prescribed the drug. Within 5 days my
asthma was virtually unnoticeable with hardly any inhalers needed over the next 9 months. I used it maybe 10 times in total, compared to up to 12 times in a day before.
So by September 2018 I had control of my asthma but still couldn’t smell or taste, which to me was important as I loved trying new foods; the loss was really overshadowed by the severity of the asthma. The hope at this point was that surgery would help, but of course there were no guarantees.
The other thing that has helped since September 2018 is reducing my intake of all processed foods and I try to eat only freshly cooked food. I’m personally following a paleo/primal lifestyle (although it is recommended to try a low omega 6 & high omega 3 diet, according to my sources).
Physical exercise has also helped, especially running, which I started in December 2018. I feel it helps the condition at a localised level within the nose, as around two months after starting, I would occasionally get a little of my smell back when running and sometimes when eating I got a bit more flavour – but with no consistency.
I was booked in for surgery on 28th June 2019. I think it’s been a success – after around 3-4 weeks I got my sense of smell and taste back so I’m overjoyed. I will be documenting events over the coming months as this disease is known to have recurring nasal polyps so will see how the nasal rinses and sprays reduce the regrowth.