Joanne’s Story: Parosmia, successful treatment and volunteering for Fifth Sense
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.