TBI with Anosmia.: Hi everyone... - Headway

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TBI with Anosmia.

ian1964 profile image
10 Replies

Hi everyone,

Just under 6 months ago I was hit by a burglar leaving his attempt to burgle our garage by his car, it put me into a traumatic brain injury and a coma for 13 days, I was in hospital for 12 weeks in total, the broken bits repaired, my head still doing it's best to allow the skull to settle and I've been doing my utmost to lose the mood swings (which are much improved I feel) my memory is much better from the first weeks once I came round, but it does lose big chunks, but I am trying to improve , fatigue has taken it's toll though. The biggest thing I feel aside from desperately trying to get my fitness back to a place near to it's previous is my Anosmia. I can't smell and the taste I tend to get is often metallic, I've had a flu bug through xmas and now when I do get a taste i.e., like a chemical it brings on a nauseous feeling with an almost fearful desire to eat.

My family have been wonderful, my wife has suffered a huge amount trying to keep calm throughout everything and I don't wish to make even putting food in front of me something that she would not wish to do. I realise that my trauma has affected the section of my brain working on smell and taste , It's just that not wanting to have food in front of me is getting me down. I've had acupuncture mentioned, but in most cases I end up in the group who have a very , very small chance of getting better in this area.

If there are any other Anosmia sufferers out there who have found a cure or even just a tiny improvement I would love to know, I will keep reading, in particular about a German Doctor in Dresden who had a group of sufferers using 6 scented oils to help retrain their smell and that came out with 30% of the group recovering.

Many thanks.

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ian1964
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cat3 profile image
cat3

Hi Ian. I actually started with my olfactory distortion a few weeks before the brain haemorrhage (SAH) and was surprised to discover that the 3 other woman in my 4 bed ward had all had SAHs and all had the Parosmia.

There are many types of 'osmia'. There is one where the taste/smell is totally lost, another where phantom smells occur, amongst others.

My problem is that favourite foods and fragrances began to taste & smell foul (often chemical tainted) and yet actual foul smells don't register at all.

Doctors generally don't have a clue. I'd read about olfactory disturbances being a pre-curser to brain issues and mentioned it to my GP ; she laughed. Two months later I had the bleed and the consultant assured me how common it is, and how the two were almost certainly linked.

4 years on I've adapted to the problem. I began by avoiding many favourite dishes such as salad and fruit and gradually weaned myself back onto a healthy diet, although there hasn't been a full recovery.

It might sound odd but I used mind over matter. For example, I knew I loved tomatoes and, although they tasted vile, I sort-of overcame it gradually by pushing my memory of the taste to the fore like a re-education exercise..................then applied the same willpower to other foods.

Some people's senses do return to normal with time apparently, I hope yours will Ian ; it's a horrid condition.

I don't know of any official treatment. I was given nasal drops which were useless. I can't say that it impacts much on my life these days though ; we're pretty adaptable creatures !

Hope it improves for you, or at least becomes tolerable. Cat x

ian1964 profile image
ian1964 in reply to cat3

Thank you, I too am trying to keep my hopes up...the biggest area of optimism and hope is due to the brilliant surgeon and air ambulance team who got me into hospital and kept me alive, so my smell issue is tiny in comparison. But I think we all just want to be the best we can and I will go along with you with pushing our brain into the way we want it to work...I've had one choice of a Sacral massage and the one of acupuncture and I will push the results out there to see if they help others, we've all suffered in some way and now and then need to know what else we can try.

Many thanks Cat3 x

cat3 profile image
cat3 in reply to ian1964

Yes, do please come back with the results whatever happens. I'd be particularly interested in the acupuncture ; always fancied trying that myself.

All the best for 2016 Ian. xx

Happy new year

cat3 profile image
cat3 in reply to cat3

....................forgot to say how well I think you've coped with all those injuries, not to mention the trauma of it all !

xx

Nutkin33 profile image
Nutkin33

Hi there Ian

I had my TBI almost 3 years ago!

It has left me with Anosmia (thanks, cos now I know what it's called). My sense of taste is not too good either! I need strongly flavored food to appreciate it!

Anyhow, I regard my Anosmia as the least of my problems! In a way, it's nice,cos I can look after my dogs without a problem!

All the best in 2016!

Debs

😉

ian1964 profile image
ian1964 in reply to Nutkin33

LOL....thanks for your reply Debs, I have just the same feeling about my dog, he can be as flatulent as he wishes and I haven't a clue what's going on. I do miss the smell of aftershave and perfume, of flowers and the one part that hit me this xmas was not being able to cook which was something I always enjoyed, so I've got changes to make, one of the big ones is anything that means people around me think I'm upset about something when I'm not, just trying to work my way round stuff that no longer has the same effect on me.

3 years is a long time, I hope you've had a good spread of progress, I keep getting people saying that anosmia can start to cure itself after 5 years, personally by then I think we will all just have given up wishing for an accidental change. Have you tried the oil scent trials ?

Have a wonderful 2016, x

Ian

Nutkin33 profile image
Nutkin33 in reply to ian1964

Thanks Ian.

The brain never stops healing, although most of the time, we don't notice. I guess when I look back, I can see improvement, and the main thing, is acceptance of our condition.

I have only finally really accepted mine in the last few months!

About time!

Anyway, let's hope for all the best in 2016!

😊😉

MXman profile image
MXman

Hi Ian,

Well done it what you have achieved so far. I had my Bi in May this year and its early days but iv managed to kick on and pretty well get back to where I was, well I think I have my wife and kids may have a different view though. I have learnt a hell of a lot from this forum and that I have to accept some of the stuff thats happened and going to happen. Personality changes, brain fatigue, fear of heights, Never had a fear of heights and other stuff but we will get there. Over christmas I have discovered I no longer like onions, always liked them raw, fried and cooked but now I don't. I can taste stuff and smell stuff but all of a sudden I don't like onions. Its amazing how the brain re wires itself.

Have a great New years Eve matey. Nick

ian1964 profile image
ian1964 in reply to MXman

Thank you Nick, I'm really happy you have made such great progress, I know all too well that I want to move forward, it's nice to read the things others also have issues with, I have momentary light headed moments, brain fatigue also, many memories are hit and miss, one thing I do struggle with is conversational memory right now....still trying to work on that one as it's hit and miss, but and it's a big but....my life has always had a desire to make the best of things and that will not change. I will I guess end up selling my motorbike as perhaps that is now a step too far and in a massive way any income from that will go to my wife and kids without whom I would have a tiny team to help move things on and I am all too aware of the stress my coma caused them...

I had some onion tonight and I didn't taste it, nor was it the horrible chemical tang that many things emit.....oh one day there will be a nice taste appearing....if I have a reason for it I will let everyone know as trying anything may be a good thing.

Have a great new years eve too. I am not touching alcohol. So I will be raising a glass of water and toasting all those who I know and also those whom I don't know but who could do with the thoughts of us all to have a kinder 2016.

MXman profile image
MXman in reply to ian1964

Its a slow process mate but a progressive one thats how iv found it. Im pretty fit and always have been and wanted the old Nick back from day one and Iv now learnt from people here thats not going to happen. Road bikes were sold but the MX bike is still here (riding Saturday) but it all takes time and i wasn't used to giving in to time but now I am. My family have been so supportive wife and 2 kids as they were all there when I had my accident horrible horrible day that was for them.

No alcohol for me either fizzy water and lemon. Yep looking forward to 2016. Take care, Nick

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