Wait, we’re not the same?

Different ways to lose the sense of smell and why it’s important

When I was first starting out with my initial Facebook group, I quickly became aware that people were arriving with different origins to their smell loss and how much of a difference this made in conversations that were taking place there. 

If I had started a Facebook group for, let’s say, “People who did not arrive at work on time”, I might expect there to be people who had a flat tyre, people whose train was cancelled, others who were delayed by a plumbing emergency or a lost dog or any number of other reasons. The result, however, was the same: they all got to work late.

And this was also true in the group. People in the initial AbScent Facebook group were there because they had a problem with their sense of smell. That might be because of viruses, head injuries, allergies, polyps or maybe they were born that way. Some had no idea at all why their sense of smell had left them. It is the same today in the Network. 

This is such an important concept – why you lost your smell – that I’d like to dip into this further and look at how this affects our communication in the Network.  How do you go about getting the right information for you? Our community is there to help you manage your condition and put you in the best place for any recovery that could be possible, depending on your case. 

Let’s start at the beginning: where did things go wrong for you? If you had a traumatic head injury, there will have been damage to the nerves that run from the inside of the brain into the nose. And there will also have been damage to the brain. Being inside the brain, this is described as the central nervous system  – all the nerves inside the brain. But if you had Covid, the damage will be inside the nose (to start with) and the nose, as well as everything outside the brain down to your toes, is the peripheral nervous system – all the nerves in the rest of your body. So damage can be central or peripheral. 

People that have had post viral loss? You’ve probably had damage to your olfactory epithelium, a small patch of tissue high inside your nose. That tissue will have undergone changes. If you are unlucky and had a bad case of Covid, the virus might have gained access into your olfactory bulbs.

Obstruction to the airway, as in the case of polyps, prevents smells from getting to the right place. This has the same effect as you pinching your nostrils together. This is called conductive loss. The nerves are in there and working fine, which you might know if you were ever treated with a course of steroid tablets. Most mysterious of all is idiopathic smell loss, which just means that there is no obvious reason for the sense of smell to stop working. 

So now let’s consider the different kinds of treatments, and how to know what kind of information is helpful for you. 

I’ll start with the discussion about umPEA LUT that we have been having recently. This is a new treatment that has come out of Italy and is showing promising results. It was developed initially for people with multiple sclerosis and Parkinsons, and the action of the product, which passes through the mouth into the bloodstream in the form of a powder that dissolves under the tongue, is to reduce inflammation. In this latest research, it has been put to work on people with Covid (a post-viral condition). 

Does this mean that umPEA LUT is useful for people with traumatic brain injury? No one can say because it hasn’t been trialled. Do people with recent TBI have inflammation in the brain? Yes, but any potential action of umPEA LUT on this is speculative–no one knows. According to Professor di Stadio, umPEA LUT is a well tolerated supplement that can be bought over the counter, and has no known side effects at this time. But it is not inexpensive. So when weighing up whether you’d like to try this, you will want to consider the possible benefit and the cost. Could it be helpful for people who have no known origin to their loss? Truly, nobody knows. 

Another example of this is PRP (Platelet rich plasma) injections in the nose. This was a hot topic some while back, and recent trials–again on Covid patients–have had mixed results. It is not available in the UK, though some clinics in the US do offer it. Good for TBI maybe? Since head injuries cause problems at the level of the olfactory bulbs and nerves, it doesn’t seem too likely that injections to the tissues of the olfactory cleft will help, but again, this hasn’t been trialled so no one is sure. 

So I encourage you to know all you can about your condition, and if you can, keep a diary. Sometimes a diary can reveal surprising things–it’s practically impossible to remember your experiences every day, week to week, month to month. Know yourself. And it always helps when you are chatting with people in the Network to describe your case briefly to alert others. And if you are unsure about anything, whether causes or treatments? Ask in the Network! We may not always have the answers, but let’s discuss and raise awareness within our group, too.