If you’re reading this then you, or someone close to you, is going through the devastating effects that parosmia has on a person’s life but, don’t give up there are steps you can take to avoid certain triggers and little changes will encourage you on the road to recovery, even if progress is slow.

For me it all started with a very bad head cold in April 2015.  I thought I had recovered after being prescribed antibiotics but a couple of months later I started to notice these hideous smells that wouldn’t go away. Over time I had tried lots of different nasal sprays and medication from my GP but nothing worked.  That’s not to say they wouldn’t work for someone else though.  I was desperate to try anything so my ENT consultant offered me the trial drug theophylline but again there was no guarantee it would work.  Two weeks in I was so relieved when I noticed a huge improvement – maybe it kick-started something.  Although smells and certain foods were still pretty nasty this medication suppressed the constant bad smell enough to be able to cope better.  At the time I remember feeling elated.  When you’re smelling and tasting sewage every waking moment it’s a living nightmare which you feel will never end.

I started trawling the internet for information and found an article of a 70 year old man in America who was prescribed gabapentin for his parosmia and it seemed to work.  My ENT consultant wasn’t able to prescribe it and suggested I ask my GP. On my next visit I went armed with all the information and he agreed for me to try it.  It took quite some months to slowly increase the dosage but I started to notice a difference in my taste. I continued with theophylline and gabapentin for around 3 years.  It does sound an awful long time but the improvements were miniscule.  Unfortunately it wasn’t like flicking a switch and all is good.  But, believe me those little subtle improvements had a huge positive impact. I know many people who have seen improvements, with or without medication, after 6 months, 1.5 years and sometimes even longer.

Obviously reducing the constant bad smell was great but the turning point for me was looking at what types of food I was eating.  When I noticed bitter foods were the main offenders I was able to eliminate them from my diet best I could. Ready made meals were now off the menu and cooking from scratch was the way forward so I could be in control of what was being added to meals.  I was also able to identify what foods I did like.  For instance, I couldn’t stomach chocolate but I did like white chocolate.  I then saw a bar of Cadbury’s Dairy Milk chocolate and noticed the picture of the milk being poured on the packaging.  I knew dairy foods seemed nice and thought I would give it a go.  I couldn’t believe it tasted quite normal yet other makes of milk chocolate still tasted revolting.  I put this down to the high milk content in Cadbury’s.  This is when I knew I had to experiment with food and keeping a diary was vital.

It didn’t stop there as I couldn’t stand the taste of toothpaste or smell of shampoo, soap, washing power, conditioner, deodorant etc.  I knew I could find unscented products but I was really overjoyed when I found favourless toothpaste.  Walking through Boots with the overpowering smell of perfumes and aftershaves made me gag.  But, on a visit to Ikea I walked past lots of scented candles and I detected the smell of vanilla and strawberry which were “normal” – it was like a lightbulb moment.  I filled my house full of them.  It also turned out that I actually liked the taste of vanilla and strawberry.  You literally have to find those “safe” smells and tastes but don’t get disheartened if that changes and the next time isn’t the same. Find the positives in small changes.  It was keeping a diary that kept me going, it really did give me something to focus on.

I would also say to give smell training a go. It’s not for everyone and it was quite tedious but I persevered using rose, lemon, eucalyptus and clove oils twice a day. I must admit I didn’t notice much of a difference for at least a year.  Then I spotted a faint smell of eucalyptus.  I wondered why I couldn’t really smell the other nice scents when I was able to identify the strawberry and vanilla candles.   I knew I just had to keep going.  You really can’t make sense of it and worse still you can’t put a timeline on it either.  I clung onto the fact that if some smells were normal I believed that other scents might follow in time. I imagined it was like the wiring in my nose was faulty and I just needed to connect them all to the right points again.  After 6-8 months of smell training I began to use other things in the house rather than just the oils to mix things up  little. I was mindful just to use a few at a time, such as orange rind, mint and basil leaves over a couple of months.  I knew mint would be horrible and nothing like what it should smell like but I had to take the good with the bad.  For me the improvement was pretty much tiny and I didn’t necessary notice it.  However just every now and then things didn’t seem as vile as they used to be and one day I was able to say I was 50% better and then I was 60% better and so on and so on.  Nasal rinses also helped as I suffered from a dry nose and a nasal cream, prescribed by my GP, worked when things were particularly bad.  Strangely, once I no longer had a dry nose I noticed small improvements.  Was this a sign that my olfactory nerve was regenerating?  Nobody knew.

I was recently asked what would I say to someone who is now going through the same experience and firstly I would say never give up.  Identify what types of foods you can’t tolerate i.e. bitter, sweet, sour, salty and umami, experiment with different smells and different foods and keep a diary or even create your own recipe book and involve those around you with your experiments.  You may just find new things that you’ve never tried that you enjoy.  Be brave and keep trying those offending foods too because one day they might not be as bad as they used to.  It took 5 years before I could eat bananas – I simply kept tasting them and it seemed like I had trained myself to like them again.  There is still the odd perfume I used to wear that just doesn’t smell the way it used to but it’s not unbearable.  The challenge is finding what works for you. Unfortunately there’s no quick fix – it can take months or years like me and, of course, there’s always that chance it won’t return.  Unfortunately, I can’t say that it was solely down to theophylline, gabapentin, nasal rinses or the smell training that made me better.  But, I am sure that they all played a part in my road to recovery and I can now say I’m 95% better.

At the beginning of my journey I was told by a medical professional there was no guarantee that my smell and taste would ever return to normal but he also couldn’t say that it wouldn’t. For months I thought there was no hope and that I would never get better but…I DID!!

It all started with a very bad head cold in April 2015. After taking antibiotics I appeared to make a full recovery. However, come July I noticed some bad, putrid smells. These horrible smells intensified twentyfold when I was around coffee, smoke, or cooked food.

Following numerous visits to my GP I was initially diagnosed with sinusitis and told to stand on my head to clear them. Needless to say this didn’t work. I was then prescribed nasal sprays and antibiotics which didn’t work either.

I was visiting my GP on a fortnightly basis and each time I was given a different type of medication to try. Each time I became more and more desperate for the next set of treatment to work. I then started to notice that my taste was distorted and certain foods became intolerable.

Over the following 4 months I became extremely depressed and increasingly desperate. A delicious meal tasted like rotten food, while perfume, soap, shampoo and cooked food smelled like sewage and faeces. After several months of numerous medications I begged my GP to refer me to a specialist. When the appointment eventually came through it wasn’t for another 5 months. Having no- one to go to I was absolutely distraught, suffering this disgusting smell from the moment I woke until I went to sleep. I became very frustrated and angry with colleagues, friends and family who just couldn’t understand what I was going through. I didn’t want to go out and just wanted to sleep, to escape the world I was now living in.

It affected my relationship with my partner and also my job. I worked in an office which was close to the canteen and I constantly felt sick from the smell of food, while the strong perfume and aftershave worn by colleagues only made the smell worse. This resulted in me being off work for 3-4 months. Even in an area where there were no smells I still had this pungent smell. I stopped walking my dog because I couldn’t stand the smell of smoke from people having a cigarette or from coal fires. Even the smell of cut grass was repulsive. I also became increasingly worried about my body odour and not knowing if food was still safe to eat. I even had to ask my GP for toothpaste that had no flavour as the taste of mint made me retch. Knowing that my GP had no idea what the problem was – I was constantly hitting a brick wall – I couldn’t wait until January to be seen by a specialist.

So I started to Google ENT specialists in the area and found an emergency ENT department at Sunderland General Hospital. I went along and the consultant looked through a camera for polyps etc. I was told everything was fine, that normal smell function was likely to come back as quick as it went and I was sent home with yet another type of nasal spray. Thankfully though, they also suggested to my GP that I should be referred to Mr Sean Carrie at the Freeman Hospital, Newcastle, who actually sees patients with smell disorders. I began to do a lot of research into my symptoms and came across the term anosmia and parosmia. At no point had these conditions been highlighted to me by anyone in the medical profession.

However, I did come across the charity Fifth Sense. I immediately got in touch and felt so relieved to communicate with someone who understood my feelings of anxiousness and desperation to seek support. The website also offered a lot of useful information and equipped me for my next appointment. As I learned more about the condition I became more frantic that there was no medical research on parosmia, no smell and taste clinic and basically very little known treatment if any. I decided that I couldn’t go on anymore and found that Mr Carrie also worked at a private hospital. I was able to get an appointment within three days.

Despite everything I had read about this disabling condition I still hoped Mr Carrie would have the answer and a treatment to make this nightmare disappear. My world fell apart when he only confirmed what I feared: an upper respiratory infection had attacked my olfactory nerve resulting in parosmia. Mr Carrie went on to say he couldn’t confirm whether or not I would regain a normal sense of smell or taste as it is dependent upon the olfactory nerve regenerating. I totally broke down and couldn’t see the point of living anymore knowing there was no escape from being constantly surrounded by a sickening, unbearable aroma that no-one else could detect – it was soul-destroying. He suggested that I should speak to my GP and consider anti-depressants. I left his office that evening thinking my life was over. It was a total surprise and godsend when I received a call from Mr Carrie, two days later, who explained he’d contacted a colleague, based in Great Yarmouth, who’d suggested a trial drug. Although he couldn’t guarantee a successful outcome he knew how much this condition was affecting me and that I would try anything. He also advised me to keep a diary of different foods and how they tasted in order to determine whether it was bitter, sweet, salty, sour or umami foods that I couldn’t tolerate.

I’m pleased to say that within a few weeks of taking this trial drug I saw an improvement and nearly four years down the line I am 60-70% better. I am still fighting to make a full recovery and regularly test my sense of smell and taste by doing smell training. I also constantly try different foods and record the outcomes. It’s become a near obsession but I’m determined not to give up in the hope I can help others in the future. If it wasn’t for Fifth Sense I really don’t know what I would have done as there was no-where else to go and no- one who understood. The Fifth Sense community supported me and helped me to cope and adapt. It still does. Being around other sufferers led me to volunteer for Fifth Sense. By organising regular ‘meet ups’ I am able to talk to others, exchange tips and share experiences. I’ve also made many new friends. The mutual support from members is invaluable and gave me a lifeline when I was at my lowest.

Being part of organising Public and Patient Information and Engagement days with local ENT specialists and university researchers has given me the drive to learn more, so I can pass on vital information to patients and signpost them to the right people. I feel very fortunate to have played a part in these main local events where I have been able to use and share my experience with other volunteers. I’ve built a good rapport with other volunteers and know I can call upon them for their advice and to share best practice.

Networking with professionals,specialists and people from very different backgrounds has at times been challenging but extremely rewarding. This hideous life changing condition once had a dreadful impact on my quality of life, safety and mental health which nobody recognised. Now I’m passionate about helping others who are struggling, and dedicated to supporting Fifth Sense and local hospitals which, as a fellow sufferer, gives me a great deal of personal satisfaction. I feel privileged to be part of a charity that supports people with a disability that can’t be seen, unlike speech, hearing or visual impairments, where support mechanisms are already in place.