Does anyone else have Anosmia (total loss of smell and taste) following brain injury? I understand it’s not uncommon and I’d like to hear if anyone has been able to regain these senses. I’ve been signposted to Fifth sense website and tried smell therapy but losing heart as nothing happening. I know it’s early days but struggle with motivation - another symptom of brain injury - which isn’t helping.
Anosmia : Does anyone else have Anosmia (total loss... - Headway
Anosmia
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Justafall
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Hi there. My taste and smell were corrupted a few weeks prior to a spontaneous bleed on the brain. In rehab, l found myself on a 4 bed ward with three other women, all of whom had loss of, or disrupted, taste/smell.
Mine varies ; e.g. avocados were one of my favourite foods both prior to and since my Bi, but one I tried last night tasted horrible. My pal assured me it tasted fine but to me it tasted of some vile chemical. Today's was the same. 😝
Other lifelong favourites such as tomatoes, all red meat (& so much more) also taste disgusting, whereas chicken, fish and salads are tasty and enjoyable.
I mourned these foods, plus the garden flowers, my favourite perfume, bath soaps etc. But we're more resilient than we realize, and within 12 months or so I'd (99%) accepted the changes --despite occasional new ones cropping up.
Anosmia or Parosmia varies greatly from one person to the next. Some fully regain these senses - others to differing degrees. I believe permanent loss is rarer.
The whole legacy of brain injury can take 2-3 years of acceptance. Meanwhile anger, frustration and sadness are the obvious responses to the disappointing cards we're dealt. With time it gets easier.
Wishing you better & better days ahead m'dear as you adapt and hopefully progress... Cat x
Thank you for sharing your story Cat.It’s really interesting isn’t it how we vary one to the other. I too miss the fragrance of flowers and although I have absolutely no sense of smell I still sniff things out of habit!
Experiencing “bad” or “wrong” smells must be really challenging. What on earth is going on in our bodies/brains?
I think my patience and acceptance levels need to increase and maybe that will happen as my anger/frustration levels decrease. Otherwise I could become the town’s crazy old woman!
Good luck on your journey too!
Justafall
My friend who has had TBI three years ago thinks she has this, although she can sense very strong smells (some flowers in the garden). She is nil by mouth, so taste doesn't get tested out. I will take a look at the website, so thank you for that. Sorry my reply is of no practical use for you though
Hi Justafall,
My sense of taste and smell were and are disrupted, though I haven't lost it.
In the early days I would think a piece of fish must have fallen somewhere and be rotten - there was just this terrible smell everywhere, but when I looked I couldn't find anything that had gone off.
Sometimes when I walked into a grocery (rare enough in those days) I could have stood there with my eyes closed and pointed to every fruit and veg, identified them, and told you exactly where there was a mouldy one, or a wet bit of burlap.
Yet, I couldn't smell it when I scorched food on top of the stove.
So, in my case, it varied quite a bit. I still get periods where scents are perceived more or less.
My taste buds have definitely changed, but I really can't tell if I just got used to the taste of bad food because I couldn't cook very well in the beginning, or things really have changed. I eat quite a bit with my Mom and I do know our taste sense is very different. She tastes things as being a lot stronger than I do.
I also know I don't enjoy food the way I used to.
My experience with all brain injury related things is that they do tend to heal over time, can be changeable as your brain and systems sort themselves out, and there will always be some residual something.
Then, there is the philosophical question, if things have changed am I broken or do I just not like this or that any more? Peace comes with accepting the change, but somehow still trying to heal. It's frustrating, there are no answers really. You just have to take one day at a time, and be kind to yourself. I found developing a curiosity about things helped - what will it be this time?
Yes, it is very frustrating. Loss of a sense is a real loss, there is a grieving process. For those of us with brain injury the grieving goes on as we become more aware. Somehow moments of joy seem to be less often - I think because when we do recover things it happens slowly, not all of a sudden (like at the speed with lost or mislaid whatever).
The good thing about smell is they are all around us. So your brain will get lots of chances to relearn.
The other thing I found is your brain decides really what it wants to work on next. I have let mine be the guide and I find it a lot less frustrating.
best to you,
Leaf
Dear Leaf, I’ve read and re-read your reply a few times. Partly because I now have difficulty remembering what I’ve just read but mostly because I believe there’s some little nuggets of wisdom in there.The acceptance, or acknowledgment at least, that with brain injury recovery is a process like a moveable feast. It isn’t static and it’s not consistent.
Only in the past week have I thought to myself that I’m broken so to read you refer to just strikes a chord with me.
I keep being told to be patient but on the other hand I’ve also been told that it’s a couple of months since the accident so I must be feeling better! It just makes me feel very isolated on my journey, hence why hearing from others who are also on a journey makes me feel a little less alone.
I hope I can reach the point of acceptance, like you, that my brain is deciding what comes next as I imagine a sense of peace will come with that acceptance which sounds like a far better place than this one of anger, frustration and sorrow.
Thank you so much for sharing and for your words of wisdom.
Thanks for your kind words, Justafall.
Acceptance, frustration, sorrow are all waves to be surfed. I don't think I expect it to change anymore. (I'm well past the 10 year mark, I keep forgetting to add it up so I don't know for sure how long and don' t think I want to really be aware of it.)
"Expect" is the best one liner a comedian can use with brain injured people...
and those who expect you will be all better after two months are super funny - they just don't know it. (I also have given on up on the expectation that people will understand - they can't really - it is a totally bonkers thing - and you can't get it unless you've lived it, and those of us with it are all different though sort of the same. It's crazy making to try to sort it out.)
Oh, I also went from barely having words to having too many...
Leaf, the now having too many words is so funny! If there are so many of us with the crazy symptoms our tbi’s result in why isn’t it given more attention from the medical field? I had no awareness of all this before my own injury but I’m now really curious (when I can be bothered)(another symptom) to see what happens next. At the same time dreading that nothing is going to improve and “this is it”. It’s just weird - actually living through this. You’re probably right though re why people can’t understand this.
Anyway - I talked too much even before the injury so looks as though I’ve retained that!!!
All best
Justafall
Hello Justafall I read your post with interest - so many resonating characteristics of my injury which was also after a fall and at a similar age to you. Mine was in June 2021 so I am 1 year on. The loss of taste and smell I blamed on covid - but actually was probably also to do with my TBI - it returned quite suddenly around Christmas time last year so a good 6-7 months after my injury. It was subtle at first and took a further 3-4 months before I could really taste and smell - some tastes have remained less vivid but my sense of smell is id say back to normal. The frustration is a bit of another matter and I cant offer any advice - only to say that it really does improve over time and rest and sleep is incredibly important - I have found Pilates very helpful - not just the gentle exercise but being able to meet up with people without having to explain and feeling an incredible sense of achievement when i get it right ! (Which isn’t very often )You have all ready come a long way - pat yourself on the back for all your achievements. All the best x
Thank you for taking precious time out to reply. I’m begging to believe that surviving this injury is quite something and the journey we take afterwards can be quite different to the path we’ve been on all our life until that point.It’s really useful and heartening to hear that there’s someone else out there whose experienced the same thing. It’s easy to feel isolated isn’t it? I’m exploring what activities I might try as I believe you’re right that activity and also contact with others is important to our recovery.
Thank you again and all the very best.
Hi, my husband had a TBI 3 and a half years ago. He lost his senses of smell and taste, but nobody ever said it definitely wouldn't come back. Then about a year later he went to be checked at ENT, where he was told quite casually that the very fine nerve controlling them, at the front of the brain, had snapped and so it would never come back. It was a bit of a shock I can tell you. I do hope this isn't the case for you, but thought you should be prepared in case. Xx
Hi FlowerPower62When I saw ENT the week after discharge (I had some hearing loss and tinnitus after the fall) I was told to Google brain injury and loss of smell/taste. Anosmia really doesn’t seem to get much attention does it although the loss has such a huge impact.
I found a website called Fifth Sense which was set up by a man who lost his smell and taste (I think) after a head injury.
It really does seem that we are left to accept the disappearance of two of our senses. I’d be really interested to hear if your husband has any breakthroughs.
All best to him and to you - I can’t imagine that being the partner of someone whose had the trauma is easy.
Justafall
Hi there!
I am so sorry to hear what you are going through. I felt compelled to reply as I’m on the same journey.
I fell 6 months ago and fractured my skull. I lost my taste and smell immediately. I have been told by endless doctors it was covid, knowing it wasn’t but I couldn’t seem to get any decent advice until I found headway.
This forum has been such a support to me and please know you aren’t alone. We all have unique stories and journeys and the support and love here has really helped me on the way.
I have struggled and battled with myself during the last 6 months. Waking every morning wondering if that would be the day I could taste again. Seems crazy now but I had no advice to know what to expect.
I also do smell training. Please be patient. It has really helped me and I hope with time it can help you. I can now smell all four scents and lemon has been my first taste to come back. I also wondered why I was doing it at first but I have made small progress.
I now get subtle odd tastes every know and then. And sometimes the odd smell. I can’t tell what the smell is and often isn’t accurate but they are signs it is trying to repair I hope. I rely on others to tell me what I can smell when I detect it to help me understand what’s going on around me.
It’s been hard to let go of the food and drinks I loved which I now can’t stand the thought of. I loved red meat and haven’t touched it since. Try experiment with other foods even ones you didn’t like before! It’s quite a journey and will surprise you what you might find is satisfying now! I now eat more veggie or vegan dishes as I get subtle flavourings from them. Small steps but it’s something from where I started.
I’m not sure if this is helpful but I have also found that I might have a good day where I taste a sandwich or a drink….. I get so hopeful I’m better but the next day it’s followed by nothing. This happens regularly and there doesn’t seem to be consistency but slowly over time I am seeing some improvement.
I wish I could tell you a quick fix but it seems time and patience is the best advice! I struggled mentally with acceptance at the start of this journey but you slowly do learn to adjust to new ways. I get waves of mourning and sadness but also hope that I might one day get my taste back and how great that feeling might be!
I hope this is been some what helpful knowing you aren’t alone. I felt so isolated and find no one understands what I’m going through. People often try and make you feel better saying there lost it for a week during covid….. it’s hard to not get angry at the long term life changing journey you are going through especially when this is just one small part of it.
Please feel free to reach out or message me if you want to talk about it or have any questions. Our journeys will be different but it’s nice to have some support
X
Hi!It’s a great help knowing I’m not the only one going through this - although it’s very levelling too realising that so many others have experienced similar injuries.
This certainly wasn’t in my life plan and you’re right about waking up each day and hoping something will change.
At first, when my face was so swollen and bruised it felt like a cruel reminder that I wasn’t the same anymore. I even said to my husband that I would never be the same person but I saw that as an opportunity, a positive, to think about what I actually wanted to do or be in the life I’d been allowed to keep living. Does that sound strange?
Now that the physical signs of the accident have almost totally gone I think the invisible stuff we’re left to cope with is harder. There really is a lack of understanding.
I avoid most meat and, like you mention, tend to go for vegetarian or vegan options. Especially spicy or food with texture. It’s difficult to get enthusiastic about food when you can’t smell or taste it isn’t it?
My adult son came over with his partner recently and for the first time in my life all I did was take lids off pre-prepared shop bought food. I shocked myself! I’d read prior to their visit that Ben, from Ben and Jerry’s has no taste which is why their Icecream is so textural. Three assorted tubs for pudding that day!
I’ve recently seen a complimentary therapist whose background is 30+ years as a critical care nurse. I reasoned that at least she should have some understanding of the injuries. We talked and then she did reiki. It was the first time I’d felt positive since the accident. Have you tried anything like that?
Did you get medical/psychological support after discharge?
Things seem so disjointed and hit and miss, I’m really interested to hear if you’re experience was any different.
Thank you SO much for responding - I really appreciate it.
Hope you wake up tomorrow and find a huge improvement or you have an amazing sandwich for lunch. If not then I hope something else wonderful makes you smile.
All best
Justafall
I have often battled with the same thoughts. Definitely not in my life plan and feels so out of your control. I get jealous of others and what I lost when it’s no ones faults. These thoughts ease over time but at 35 years old I feel quite sad at potentially all the tasteless years ahead.
My husband pointed out just this week the chicken in the fridge had clearly gone off. Relying on others to help and instruct you is hard to adapt to but I’m slowly learning it’s ok to seek help where needed. We didn’t choose this path!
That’s not strange at all. I feel complete loss but also your right just so grateful to be slowly giving the chance to heal and repair. I also have no physical signs of an accident now and struggle with the lack of understanding by others. I am struggling very bad fatigue and trying to work. I find it exhausting having to remind people that I am healing even though I physically look fine! It takes quite a toll on you mentally.
I also struggle to get enthusiastic about food…. Cooking is a chore but I need nutrients so try battle through those thoughts. I sometimes get excited and food then remember I can’t taste it. I often forget!! It definately is getting easier to accept though and I hope you will find the same.
Please let me know if reiki helps you. I haven’t tried any therapies. I am awaiting an appointment from the neurologist to get me into a rehab to help me with my senses and balance. I had no support after my discharge at all and had to go back to the doctor to ask for help where there agreed that I shouldn’t of been left to just deal with this alone. The mental toll has been hard. I have come very far but often feel I need help. After the accident I was scared to leave the house alone but
Now commute to work alone so good steps but I often get triggered by small things. I recently watched a Netflix favourite of mine, virgin river. One of the characters suffers a tbi and it strangely really triggered me after weeks of feeling positive. It comes in waves!! I hope you are getting help?? I have found I need to chase the nhs a lot to move it along as they were very fast to discharge me!
I think it’s quite normal to go up and down during this journey and so glad the response here helps you know you aren’t alone.
X
Hi LucialuciaReally feel for you. You’re so young to be experiencing this.
You’re right that we need to accept help when we’ve lost our sense of smell. The consequences of not doing so could be quite nasty! I wonder how people get on who live alone.? Food is such a minefield.
When I’m eating the same food as someone I’m with I’ll ask them to describe it but it’s still difficult to get enthusiastic about food.
Not to mention all the other “smells” that we don’t get.
I’ve had 2 reiki sessions so far and I feel that it’s been really beneficial. Third booked already. We’ve spent a fair amount of time talking at the beginning of the session and then I’ve had the therapy. The person that I go to is so gifted and her clinical background is really beneficial. I can’t imagine that the outcome would have been the same if she hadn’t had that experience, having left nursing after many years as she felt that there was so much of the person left untreated and seeking to approach that holistically through complimentary therapy.
We’re such complex beings that I definitely think it’s worth trying whichever complimentary therapy your drawn to alongside whatever medical treatments you’re getting.
We seem to have had similar experiences of leaving hospital to a big nothingness of support. Fortunately my GP has taken an interest in trying to help me which has helped. She couldn’t believe that there was no follow up scheduled with a neurologist. If it hadn’t been for her pushing I’d still be wearing a neck brace 😳 and I wouldn’t have been seen for a review of the sight problem I’ve had since the accident.
I have this week had a first appointment with the physio of the local neuro team which was very positive so I’m hopeful that her colleagues in neuro occ health and neuro psych will be able to help. Who knows? It’s good to feel that maybe things are moving but the dessert land I’ve been in for the past 7 weeks hasn’t been so good. Although I’m having to learn that weeks and months are nothing in terms of the time a recovery can take after an injury to the brain.
Re Virgin River … I’ve recently started watching again but I’ve gone back to beginning of series 3 - now on episode 6 I think - so I’ve got the trauma that you mention to come.
Anyway - sorry to have waffled on.
All very best to you and remember always to look after yourself.
Justafall
Taste and smell not the same .. most very weak … 20 months after accident … I recently had covid and taste went completely so I do j ow I have some taste 😁… salty and sweet stuff are the best for taste and I know can drink a stronger coffee as it did taste awful .. and I loved coffee .. also alcohol I can know drink without being sick .. but seems quite normal from what’s been said on this group … I’ve got more details on here than I have any where else .. hope yours comes back soon sue x
Thanks Teazymaid,Good to hear that things have improved for you over the 20 months since the accident. It’s a slow old road isn’t it? Because I’ve got no taste or smell I haven’t had to cope with things I’d previously enjoyed tasting bad so I’ve continued to drink coffee even though it tastes of nothing! Just keeping up the habit.
I think this group is going to be positive for me too. Just talking with people who understand what you’re talking about is worth a lot.
Take care and I hope you continue to improve!
All best
Justafall
I’ve just read your details and it sounds a double of mine .. I also woke up in someone else’s body and the mental strange was beyond belief … I have tried so hard to fight it all and think I’m finally winning .. the site has made me feel not alone even though I had no idea who I was or what I could do … good luck with your unknown journey . Your not alone there’s a few of us in this unique place 😊sue
My partner had no taste or smell - 4 years on from accident. He gets some sensation on his lips from spicy food. His enjoyment from food comes from textures and hot /cold. It is something which gets him down but he manages it
Thanks Paddington 18I’ve worked out that I’m drawn to spicy food for just the same reason! Not that I can identify the spice but just because there’s a sensation of something when eating spicy food.
Failing that I try and go for texture - like chunky coleslaw or something crispy. Again, no taste just texture.
Really difficult to be motivated about food and particularly off meat. Texturally awful! Maybe I’ve always had an inner vegetarian trying to break out and this was the chance!
Hope things improve for him and all of us.
Thank you for sharing.
All best
Justafall
I lost my sense of smell after a bang to the head. I suppose eating things my taste was more on the bland side. My sense of smell has come back : ) although its not as strong as it used to be, but some days it is funnily very strong. The brain is a strange thing with huge possibilities. I wish you good luck, many things I have lost slowly come back to me.
Hi TunasEvery person’s story of their own journey is helping me feel less alone in this and also makes me realise that every journey is different. The only common thread seems to be that we have little or no control over what happens when and even whether a sense stays or changes.
Thank you for sharing and good luck to you too!
Just a fall
I can identify with your post a lot - I didn't completely lose my sense of taste from my TBI, but lots of things are different and my sense of smell is 95% gone. What I have left of it is 'different', it's really the only way to put it! It's heartbreaking sometimes, but other times I can rationalize it and remember I still have a life - despite so much of it being changed. Motivation, confusion, frustration and worry sometimes guide my life, but it's still quite early days for me I think. I keep holding on to time being the key. I'm not sure I could keep up with smell therapy either because of motivation, but the habit of smelling things occasionally is good, and sometimes I've been caught off guard and sensed something with my nose (my perception might come across "different", but it's something - very rare but maybe it'll get more often and better with time). Just remember you're not alone, everyone's journey is different, but we're here on it with you.
Tiel- I was surprised to see how recent your injury was. Very early days yet you’re out there sharing your journey and trying to motivate others. You’re something of a star!Thank you so much for taking the precious time out to share with me and good luck on your own journey!
All best justafall
Hello, I’ve never posted on here before, although I read posts daily.I had an SAH in August 2019 and since then have been back to the amazing John Radcliffe Hospital a further 4 times for the same aneurysm. Jan 2020, Sept 2020, Jan 2021 and June 2021 which resulted with further coils and stents fitted.
I completely lost my sense of taste and spell since the Sept 2020 one. So far it hasn’t come back at all. I absolutely hate it. Do not enjoy going food shopping as I think what’s the point? No longer enjoy cooking, in fact it sometimes makes me feel ‘sick’. I also notice that I appear to produce saliva when eating. Not nice. Everything I eat I
I only do because I know I have to.
Sorry to be so negative but that’s the way it is for me. Wish so much there was something that could be done for this however I do realise that I am a very lucky lady to still be here.
Good luck with your journey and keep hoping (as I do)
It really sounds as though you’ve been through it having so many surgeries. Really sorry that you’ve been through that but good to hear that your experience of JR was so positive. I agree about having lost all enjoyment in food, be it shopping for it or preparing it. Horrible isn’t it? You’re right though, we’re lucky to be alive and we have to find how to make it our best life. Who knows, maybe our brains will decide to recognise tastes and smell again one day. Not the be all and end all but how much more enjoyable things would be!
All very best to you on your journey. Good luck and stay well.
Justafall
Hi I am now 3.5 years since a fall, and from day one no smell or taste. In the beginning the loss didn't affect me so much as I was dealing with a lot of other problems, but now some days I find it very hard to deal with. I miss the smell of coffee, bread baking, garlic, grass cutting, flowers, perfume, aftershave etc etc etc. I miss the taste of just about everything. I was once asked which I miss the most, and quite surprised the person asking me because I said smell. She asked why, to me it was not a hard choice, you don't taste everything, but you do smell everything. You don't taste freshly mown grass or perfume or aftershave or flowers. I have lost count of the number of times the gas is on but not lit, I am always burning food, so I now have a gas alarm, timers and notepads and pens everywhere.
I was told that I had damaged the nerves, so they could not give a date the smell and taste would return, or even if it would ever return.
I hope things improve for you, or if not, that you manage to adjust your life so that it does not affect you too much. I live in hope as I am sure you do.
Hi! You’re absolutely right - not being able to smell flowers or newly mown grass is a real loss isn’t it? As for freshly baked bread and coffee - yum!Without mentioning the dangerous side of things - which you’ve discovered. Only last week my husband had thrown in date milk away saying it smelt funny whereas I’d have happily used it. Yuk!
I’m only now beginning to realise that we have to learn to accommodate some of the deficits we’re left with but I’m really surprised that there’s no treatment. On the other hand I suppose if a nerve is actually severed then it’s gone. Like you, I’m told my nerves will have been damaged but I’m not entirely sure anyone is that interested.
I suppose the impact of losing any of the senses can only truly be known by those it affects.
3.5 years is a long time but people are responding to me who have had a return of some smell or taste after even longer so with that in mind I’m hoping you’ll recover some of your sense of smell too.
We can live in hope can’t we?
Thank you for getting in touch. It really helps to know I’m not the only person affected by this.
All best
Justafall
I found the people on here very informative, and it really helps when you realise you are not alone with your problems. The doctors do not seem very helpful, but everyone on here has some sort of brain injury or involvement with someone who has one. I have picked up a lot of info from here, who to contact, books to read, videos to watch. I hope you can find the same help.
I didn’t lose my sense of taste. After my coma, I was awoken with a new one as if I had been given a baby’s tastebuds. All flavours were boosted almost to the point of pain. The first discovery was the salt added to the white bread served at breakfast in hospital. Yuck! When I got home, I tried some piccalilli - wow! That nearly blew my head off! It has been suggested that this newly rediscovered sense was due to smoking cessation. The nurses put nicotine patches on my back when I was unconscious to prevent withdrawal and they weaned me off the habit. The only good thing to result. Smell has been more puzzling. I suspect I have been infected by Covid twice as I could not get the odour of diesel fumes out of my nostrils (and I live in the countryside). I haven’t spoken to the doctor as that would be a waste of time (hers and mine).
That sounds amazing! What a weird experience. Don’t you wonder what games our brains are playing? I know it’s not but shouldn’t food served in hospitals be good/healthy??? Looks like you found them out?
Sounds as though there’s a job in there somewhere!
Hi justafall I'm three years into haemoraage and fratures and no taste or smell zero ,but will say over time I occasionally catch a scent then it's gone so occasionally I smell cigertte smoke just a waft ( even though no one around is smoking ) and noticed a damask rose which is used for perfume allow me to fully engage the scent be it for a split second so what I do if it helps you I know it's start of your journey is if you smell a certain flower put it in a glass jar and keep going back to it to sniff it once you remove lid it make you feel human again in a small way also fifth sense like others have mentioned here smell training buy some pure essential oils and keep them handy apparently repition is key ,so I have occasional smells but my taste remains zero so eat food for texture and memories ( like chocolate for example ) we have to be our own best advocates as TBI issues seems to be as your name suggests oh it's justafall , but comes with life changing experiences do try the rose In a sealed jar though ⭐
I’m new here, but looking for support, and to share, as the partner of a Woman with a TBI that happened 37 years ago. I’m going to try to interact with as many threads here that are relevant.She certainly still has a diminished sense of taste and smell, but she can’t quantify it as she’s 50, and doesn’t remember what it was like before.
There are certainly pros and cons to that…
I decided to add to this thread with my story. I don’t suffer from Anosmia instead I have Phantosmia or nasal hallucinations. I smell things that are not there. At first I thought I was going mad. I kept asking my partner if he could smell something weird but he never could. I googled and discovered the condition. I was a truly relieved it wasn’t madness. Surprise, surprise I’ve had no support or treatment. The Phantosmia didn’t stRt immediately after the ABI, it seemed to come on as I started to feel a bit better. I clearly wasn’t suffering enough.
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