Has anyone else lost smell and taste following a brain injury and how do you compensate/ cope?
For me it’s been 2years 5 months... I’ve got used to tasting nothing after at first not even feeling hungry or wanting to eat. But now focus on texture or spice like hot.
Smell is the area I struggle. I’m happy I can smile as the tractor with a trailer of muck drives by but now I have a daughter. Now I have a daughter 13 months old and I feel bad that I can’t tell she has a dirty nappy unless she makes me aware. Yeah it’s a plus when changing her, but it makes me feel bad if she’s sat in it, no matter how much I check.
Plus cooking I constantly burn toast amongst other things. It’s just yet another thing I miss about the person I was before.
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Tim_I_am
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I lost about 50% of my smell but the rest was corrupted causing, for example, my favourite perfume to suddenly smell rancid, whereas nasty smells (such as you describe) didn't register at all.
My Troposmia (as labelled by my neuro-consultant) started a couple of months before my brain haemorrhage and my GP laughed when I said I'd read up on it and learned it could be a pre-curser to a stroke/tumour/bleed ; she wasn't laughing after the event.
I found it really upsetting for the first year but, after hearing it would probably be permanent, I knew I had to just deal with it. I stopped grimacing when eating once favourite foods, such as tomatoes, and started experimenting with a homespun version of brain re-training.
I memorised intently, the appearance, texture, taste and smell of foods every time I started eating them and, gradually after weeks/months of perseverance, they became less & less foul to the point where some eventually became tolerable and others pretty authentic and delicious.
I'm nearing 8 years post Bi and really do enjoy most foods now apart from any type of red meat. I still savour the thought of lamb with gravy & mint sauce or fillet steak with French mustard, but every time I've tried any red meat I gag & no amount of 'visualising' has worked !
So it's an exercise in compromise/patience/trial & error/acceptance...….quite disturbing and disruptive for the first year or two, but I hardly ever think about it now. It's amazing how adaptable we are to change.
The cooking will improve once you start finding ways around the main issues. I used to toast bread under the grill but started to use a toaster set exactly right...….and a cheap timer for stove top cooking ; you'll get to grips before too long I'm sure Tim. Good luck.... Cat x
Timothy I suffered a TBI 14 months ago and I too have lost my sense of taste and smell, I have to say it is the most depressing part of the whole episode, I've been told that it should come back within a few months of the incident so like me it sounds like yours has gone for good. Enjoying being a new Dad should keep your mind off things.
Mine went 4 years ago and returns with smelling poo and other things horrid. Brain tricks. I get things like so sour, etc. Not taste but a glimpse of what I remember.
Like yourself I do not miss strong manure, etc and often chuckle when my wife will say 'cor blimey that stinks'...lol.
It is dangerous though and I have things on notice boards telling me to remember and other things reminding me.
I would dread living on my own with food and it going off.
Remembering smells and tastes is good for the brain i find as well. Helps me enjoy food.
Hi Tim, It can be very frustrating as you know, l have been totally anosmic for over 10 years now. Apparently due to an impact on the brain during an accident you can break the nerve connections.
As others say textural varience helps, over time the hot spicy route becomes normalised and loses effect apart from the chemical reaction.
It's important that you set up saftey fall backs and routines.
For instance when using bleach (if your soaking babies clothes/ dish cloths) my wife ties a ribbon to the tap so that I know. The amount of shirts jumpers I have ruined is crazy.
Extra smoke alarms, the fire brigade will fit these for free .In your circumstances. Cooking, gas, and solvents etc' are always going to be a problem.
Overtime it just becomes part and parcel of what makes the new you unique, embrace it, smile, your blessed with a new family, be thankful things could have been much worse.
I tend to try use hot sauces since I realised I lost it and found different textures of food helped me to get back to eating. Then every now and then I seem to pick up on strong smells like certain paints. But it’s not like a smell but more of a sense of something.
I can taste dirt, and coffee is rank to me. Threw away perfumes as it smelt off. Use the milder body sprays only now. Saw my doc he said it was in my head, I told him it should be from nose. He wasn't amused ..I thought it was something like "Oralfactory" going haywire read this if needed An olfactory hallucination (phantosmia) makes you detect smells that aren't really present in your environment. The odors detected in phantosmia vary from person to person and may be foul or pleasant. They can occur in one or both nostrils. The phantom smell may seem to always be present or it may come and go.
Phantosmia: What causes olfactory hallucinations? <~~ Copied this ... My hubs says I have an ism so I go along me and my ism smelling of dust petrol you name it I smell of it xxxx Good luck All
My husband lost his sense of taste and smell in January after his TBI. The doctors said it may come back, 50-50, but last month he had an appointment at an ent clinic about his dizziness, and I asked, by the way, about his taste etc. The doctor said without hesitation, No, it won't come back, as the nerve had been severed. My husband was really upset over this, as he was still hoping it would come back. Don't know why the other doctors said it might. I stopped putting sugar in his tea one day as it seemed pointless, but he noticed! And he also complains I make food too salty. So it seems he can detect sweet and salt, but no flavour. It's rotten. But it could be worse, you always have to tell yourself that. All the best. Xx
I get the sensations from food like hot, sweet, salty. Just not the tastes. It took me a while to come to terms with it but I did accept I won’t properly taste again.
It’s tough especially as I’m the one that cooks, I always loved cooking but now it’s so much harder as I can’t taste anything.
The loss of smell results in not knowing if something is burning or smoking either so it’s still a learning curve even 2 1/2 years on.
I like Costa coffee only now as I cannot take home made !!! Hubby goes I used bottled water lol ...Really frustrates us both so he calls it my ism and I call it my Lenor smells and it makes me itch also lol arghhhh xxxx
Threw all perfume away when I came round as Perfume smelled off. Washing is horrid and bed stinks even if it has only been on a day !!..I told Doctor and he said it is in your mind ..Wanted to say and up nose lol ..Horrible things they leave us with...Coffee only tastes nice when from shop and I am sitting here Eating for England but poor Daughter and hubby go through it ..first it was Almonds I could smell then went to petrol, shampoo stinks ...using a dear washing liquid for clothes as normal makes me stink. So it is in my mind but cannot help it. Can smell every chemical in the stuff !! Arghhh ...Good luck Tim and all xxxxx
Hi Tim. My husband also had a traumatic brain injury and he lost his taste and smell as well. Moreover, some smells are now so accentuated that he has to remove himself immediately from places, particularly shops where there may be incense or oils burning. It is very hard and I'm not sure it gets better either.
Hello. I had a TBI when I was 6 years old and since then my sense of smell and taste has been very weak so I understand it is not easy. I am trying to educate myself on the issue of scents, smells and perfumes to try and work out how to deal with this.
Throughout this time, my wife has been very helpful as she often reminds me to put on perfume, after how long to replace my clothes, etc. Perhaps it is useful then to open up to your spouse about your concerns and if that is difficult, then perhaps with a very close friend. If nothing else, perhaps they can provide emotional support. Certainly sharing this with my wife was useful to me and she is an amazing support.
I’ve recently found this group and am struggling to deal with the revelation that I’m not (totally) careless/clumbsy/ Lazy/stupid. Other people have the same things as me. I have lost my sense of smell which is quite sad to me, but my taste is mostly ok, though some days everything tastes sour. Frequently I put something on to cook, then forget I’ve put it on. With no sense of smell often the first I’ll be aware of it is that my eyes are watering and I realise the room is full of smoke. I try to set an alarm for 5 minutes but sometimes I’ll put water on for pasta, or oil in the pan for frying, but forget even before I’ve put something to cook therefore I haven’t yet set an alarm. Is there a good solution for this?
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