Medication can mess up your sense of Smell. This post links to the Magna Farta post on david healy, which tells the story of Zicam and Matrixx Pharmaceuticals. For anyone interested in adverse events, this is one of the most important stories in medicine. It also links to the SHIT Happens and SHIT happens 2 posts.
There are three Tables. The first shows drugs that cause Anosmia and the second the treatments that cause Parosmia. Sandwiched in between is an account of the horrors of Parosmia by Louise Woollam that first ran in the Observer Magazine in February. Louise’s Parosmia Diaries which track this problem are a compelling read.
Below Louise’s account is a Table with reports of Parosmia and after that there are some comments on Varenicline as the new Snuff. Louise does not link her problem to the xylometazoline she was on – this is the metazoline sold in the UK where oxymetazoline is the version in the US. The RxISK data in these tables comes from the US.
Parosmia is important to anyone suffering from PSSD or Antidepressant Withdrawal as we may have here in pure form the basic problem underpinning PSSD and Withdrawal – a drug induced peripheral neuropathy. Treatments that solve parosmia might be of benefit in withdrawal and PSSD.
Parosmia and smell is critical for lovers.
Everything smelt like sewage to me
The cold was unremarkable, although bad enough for me to need a few days in bed. It was spring last year, and a week after going back to work I went to a perfume event. That was when the first alarm bells rang. My alter ego is Get Lippie, a fragrance writer and beauty blogger, so it’s my job to smell perfume. But that day I couldn’t smell anything. See the Parosmia Diaries.
My GP told me I was anosmic – that I’d lost my sense of smell, and taste alongside it, probably due to damage to the olfactory nerve during my cold. He couldn’t say how long it would last. I was devastated, but I’d give anything to still be anosmic now. After about three months, the anosmia became intermittent phases of phantosmia (smelling unpleasant smells where no smells actually exist), along with constant parosmia (when real smells and tastes are distorted into unpleasant ones), and occasional cacosmia (when everything smells, and tastes, exactly like faeces).
The first clue I had to my problem becoming more serious was one evening when I could smell burning meat and sent my husband on a wild goose chase checking everything was switched off. I hadn’t smelt anything at all in three months, so I was excited that my sense of smell had returned – until I woke the next morning with the scent still in my nostrils. That day, we went to visit family and had some bacon sandwiches. I couldn’t eat mine – the bacon tasted disgusting, kind of chemical. That was just the start of it. With parosmia, there are few things that I can eat that don’t taste of sewage or mud, and most things smell disgusting, too. The irony isn’t lost on me – I’m a fragrance writer who lost her sense of smell – but this is no joke. I have had days when everything smells like faeces, making me retch. I thought I was losing my mind.
I could see no end in sight. I was hungry and nauseated all the time, and very upset. I remember standing in the supermarket, nearly in tears, trying to work out what I could eat, only to buy something and, two mouthfuls into it, gagging. To me, chocolate tastes like biting into raw sewage, chicken is muddy and rubbery, peanut butter and Marmite are like trying to eat diarrhoea. There are a couple of exceptions: raspberries, carrots and parsnips don’t taste vile. Nor does gin, which really helps.
I went to see an ENT specialist who told me the damaged nerves might regenerate, or they might not. It might clear up tomorrow, or it could take years. “One day,” he told me, “you will look back at this and laugh.” It was one of the worst days of my life.
I found a charity that helps people with rare olfactory disorders like mine, called Fifth Sense. In November last year, I went to their annual conference and learned that 98% of the people there had anosmia – with just 2% suffering from parosmia, phantosmia and cacosmia like me. I was so relieved that I was finally with people who understood. We shared stories about our experiences and swapped tips, such as making meals more visually appealing, and asking people to share what food tastes like.
The following week, I went to the Osmothèque perfume museum in Versailles. Like the conference, it was a turning point that has given me hope: I found that I could smell a couple of the perfumes properly. It seems to be violets and lilies that my brain can “process” normally, so a perfumer friend of mine is designing me my own fragrance. It smells good to me, and has given me great joy. I’m hoping other parosmics will be able to smell it, too.
This condition has had a huge impact on my life. I rarely eat out, as I can’t be sure someone around me won’t drink coffee, which is one of the worst smells imaginable. I carry a parosmia first aid kit: cinnamon drops to make drinks palatable; hot sauce to mask the taste of food. At home I’ve changed soaps and toothpaste. My husband and I are learning to adapt. I have lost a sense, and I feel it is a disability that’s similar to being blind or deaf – it’s just harder for others to notice, or understand.
Varenicline: the new snuff?
These tables are intriguing. The data don’t necessarily show drugs causing problems. After all the nasal problem is often there before someone sniffs oxymetazoline or a steroid nasal spray. And even in the case of Varenicline (Chantix – Champix), smoking or nicotine withdrawal might be linked to problems. People do strange things with drugs. Nicotine provides an even stronger hit snorted as Snuff. And it seems that the human body comes designed with a Snuff box in the wrist – so it could be that some enterprising dude has found that there is a hit from Varenicline snorted as Snuff.
The plot thickens if you look at the Table below on Drugs that Make you Smell – where some Varenicline also shows up.
In the near future with a relaunched RxISK – we will be giving everyone a new tool to explore with – a facility to interrogate the FDA data to find the top 10 drugs that cause X or cause Y and the hope is that people using this will be able to make links between issues and ultimately perhaps find answers to Parosmia, PSSD and Antidepressant Withdrawal.
It would also be great if anyone reading any newspaper or magazine and finding health stories like this Parosmia story, where drugs might be involved, put together a story and submitted it to RxISK. And the other way around we are looking for Health and Beauty Consultants and Hair Consultants or Lifestyle Coaches who might be interested to specialize in the effects of medications on Hair, Skin, Smell, and other areas which are neglected by traditional medicine but are often of huge importance to our sense of self.