Taste and smell CAN come back

[Futurecut]

Every medical professional I have seen in my journey told me taste and smell would not come back. It's nearly 3 years now since severe traumatic injury, i'm lucky to be alive. But I can report to you that it has returned not 100% more like 80 but its come back. Hopefully this will give some of you hope. I doubt I'm a one-off. Best of luck.

[cat3]

I'm pleased for you Futurecut ; I know what a big deal that is ! I think the medics tend to err on the negative side as permanent loss is so common and so that folk will prepare themselves for adjustment rather than maintain false expectations.

I've heard of many people whose olfactory loss has resolved at varying stages of recovery and others whose haven't. It's a bit of a lottery. I regained my taste partially after a few years but still have minimal sense of smell and now rely on a timer for baking as I'd burned a few cakes over the years ! Cat x

[Guppygould]

That's great Fututurecut! Speaking from my experiences, I think that healthcare professionals tend to be fairly conservative when they set expectations, as obviously, it will be psychologically preferable for the patient and their family to 'under-promise and overdeliver' than the other way around.

Aside from that, any predictions that they will make will be based upon empirical data from those who have suffered a similar injury to yourself (already a small population,) in the past. rehabilition care is always advancing from previous experiences.

Also, bear in mind that healthcare professionals will never have come across someone with a similar injury, the exact genetic makeup, that has experienced the same environmental conditions as yourself to epigenetically affect the expression of those genes like you have. Yes, that was an overly technical way of saying that we're all individuals.

My friends and family were told that I had a 5% chance of living and that if I did live, I would probably be in a bed for the rest of my life (when I was in the coma.) I was told that I wouldn't be able to finish the degree that I had already started (which I did a few years later.) I was also told that almost all significant improvement would take place within the first five years after my TBI. Here we are nearly 9 years down the line and I'm still improving. I think that I have found a few cheats which might work for people with similar injuries that I may write down somewhere in the future.

[S21NTE]

Hi Futurecut,

Thank you for sharing this. My husband is 12 months post severe TBI and is remarkable. He wasn’t expected to survive but is doing great. We have still have along way to go but his loss of smell and taste seems to bother him the most.

I will share you experience with him and we can continue to hope it does come back, one day. x

[Shreds in reply to S21NTE]

Can certainly empathise and relate to your comments. I was in a similar situation and concluded that if being tasteless with a loss of smell was the worst outcome of making it back from a TBI then it was something I could cope with.

Rationalising it, I still work on relearning taste and minor successes are to be celebrated even if I am the only one who can do so.

I have found it takes time and patience and I have an acceptance of the situation, so I just want to pass on hope and understanding from another survivor.

It can be frustrating but it could be far worse. Take comfort from that.

[FlowerPower62]

Thanks so much for that. My husband had his TBI 2 years ago, and was told at an ent clinic quite categorically that his taste and smell would not come back at the nerve controlling them, a very fine one, had been severed. Thanks for giving us hope, and yes, it does bother him a lot. X

[Futurecut in reply to FlowerPower62]

Same exactly. Fingers crossed.

[tennijul]

Gosh. It is only during these recent months of Covid-19 that I remembered that I had even lost my sense of smell but indeed I did for a number of years. It's 34 year's since my accident in which my head was cracked from scalp through to brain as I crashed through a car windscreen from the outside - in following a car hitting into me and throwing me and my bicycle into the air and me coming down head first without a helmet on- well actually landing on the glass gave more than the Road service would and most likely was why I survived. I had a thick jacket on and I was told by onlookers later that I crossed my arms in front of my eyes , also saving most of the rest of my face from cuts . The top of my head was very badly cut and my skull was fractured at the front damaging precious lobes underneath. Although I was not fully conscious for over a week there was no brain scan to be had in those days in a none central hospital, so I was sent home for Christmas with all the symptoms they told me if I experienced any off I should return immediately to hospital. But in all of that you brought back a memory. My sense of smell disappeared for years actually, finally returning a long while later. I hid the symptoms as best I could fearing the unknown. I think sometimes I still have difficulty smelling certain smells but not others. Which might sound strange. I can smell people's natural smells and the perfume they wear even, over it but sometimes people will say can you smell that terrible smell? and I will agree while registering nothing at all. I can smell garlic and ginger and alcohol stronger than most people actually, but not cat urine or the dog poo that I have accidentally treaden in which has caused me embarrassment in the past. Have other people experienced gaining back some smells but not others at all? Just wondering. Never really discussed it before

[Victoria_wilson in reply to tennijul]

Hi, I lost my sense of smell and taste after a a TBI 3 years ago. I have recovered a very small range of smells - it tends to be a synthetic smells rather than natural ones and also find in some cases I can smell things that others can’t detect. Equally some taste can be overwhelming e.g banana. I also find that some days my sense of smell is better than others but with no insight into why. I feel that it has got worse since the pandemic and I wonder whether it’s because my sense of smell isn’t been stimulated by a wide range of smells due to not going anywhere. It’s taken some time to adjust and I still get emotional now from time time time but am grateful the lasting effects aren’t far worse. I have found abscent.org a useful resource and am in two minds about trying acupuncture

[tennijul in reply to Victoria_wilson]

I hope your sense of smell continues to improve as mine did. Yes,it is strange that you shared like me for certain smells you are actually more sensitive than most people's

[Futurecut]

Some really similar points to me, very interesting. only recently have garlic and onion become pleasant again. I was devastated id developed hate for them. Banana was missing but is now powerful but I always liked super ripe. I still can't always pickup outside smells like forests etc. Because of the timescales i wonder if its rewiring thats behind it rather than nerve loss or damage to the olfactory bulb. even regrowth of a bit of both.

[charlie5540]

I never thought there was a link between tbi and taste and smell what changes in medication futurecut did u have when your taste and smell came back? I started her skin and got reactions to gluten and dairy ages ago and began thinking it was cutting out dairy that meant I lost taste and smell but I have had nose problems for ages.aswell then my girlfriend said the calcium drugs I was taking may have been causing an itchy skin. Perhaps my other drugs have been affecting my taste and smell which I don't have

[Futurecut in reply to charlie5540]

Hiya, no drug changes. With trauma as in my case its thought to be damage to the nerves that connect the smell organ above the nose to the brain. Maybe they've grown back or a few re.ained and plasticity has mapped the stragglers to work better.

[Hidden]

It's something that I needed to hear as 16 months after my TBI I still have no sense of smell or taste. It's very frustrating and although I can tell if it's sweet, salty, sour or spicy I still miss the taste of the food I love. The texture means more to me than taste at present but I'm hoping that it might come back. Even if it's recognising somethings, it don't have to be everything that I eat. I miss the taste of peanut butter on my toast! Thank you for some positive news that I was hoping for. 😊