sense of taste affected by SAH

[Anne Fleming]

Hello everyone

This is the first time I've written on behindthegray. I had a SAH back in Nov 07, which I had coiled. The worst thing I have been left with is a distorted sense of taste and smell. I didn't notice this when I was in hospital and in fact I am sure I didn't have it then since I enjoyed the food in hospital. I first noticed it about a week after I came out of hospital and basically it seems to have got worse and remained very bad. Hot food like soups, stews, stirfrys etc, any food with any flavour tastes like sewage and foods like cereals and bread taste fusty. Due to the severe nasty taste if I try to eat them, they make me gag. The only things I can eat are porridge, eggs, mashed potato, bananas, vanilla flavour yoghurt and ice cream, I can drink milk and peppermint tea and I have been given special vanilla flavour food supplemenent drinks by my GP. It's almost as if I have gone back to being a baby/toddler with very unsophisticated taste. Food which is sweet like chocolate is bearable though tastes too sweet, but I can manage it. I do have some sense of smell though a lot of things smell unpleasant too.

When I had the three month check up with the neurologist last week he told me that some people's taste inproves and others don't but it wasn't life threatening and there was nothing could be done about it. I think the name for it is something like dysgustia.

This has got me down so much. I have lost over a stone in weight. I have other problems since the haemorrhage mainly tinnitus and hearing difficulties and also short term memory but I feel this taste problem interfers so much with my daily life that I am weakened and don't have much strength to get on with my recovery. The thought of always being like this is too much to contemplate as I think one day very soon I will have had enough of my daily mashed potato and porridge.

I would be grateful if anyone else has had a similar experience or any advice they could pass on. I have tried eating cold food rather than hot food but that has not helped. I understand this is quite an unusual effect following a SAH. MY SAH was just above my right ear as far as I am aware and quite a large one.

I look forward to hearing from anyone who can cast any light on this.

With best wishes

Anne

[Janet]

Hi Anne

Welcome to site I'm sorry but I can't help with taste/smell issue as mine for the most part is not too bad but having said that I find I don't like anything overly sweet anymore.

My biggest difficulty after SAH was eating at all to begin with as with having a crainiotomy they cut through the jaw muscle and I couldn't open my mouth properly. Unfortunately it got better, now my only problem is trying to shift the increase in weight

I know Scott (Rince) has a similar problem so he wil probably give you some more advice.

Look forward to hearing more from you.

Janet x

[Louise]

Hi Anne

Warm welcome to the site

I had a problem with food when I first came home from hospital, all I'd have was salad's.

This did get better in time though, I had to re-educate my taste buds.

Now its mostly smell, sometimes when I go to cook chicken, meat I'm convinced its off & to save getting an upset I'll chuck it in the bin, I'm sure I've wasted loads doing that.....

Have a chat with your GP see if he can suggest something, you need your strength for recovery....

Hope to hear from you again soon.

Hugs

Louise.xx

[tennissmithy]

Hi Anne,

Welcome to the site. It's a fab place to be!

After my SAH, I was fine was eating most foods. I more went through fads on eating certain foods all the time, a bit like a craving.

I also agree with Louise I'm quite funny with meat and its smell and then even if I'm told it smells ok, I then start looking at the colour of it to check it looks ok.

Laura

xx

[Louise]

Laura, I have a right thing about this, I'll even not eat because it niggles so much at me.

Then other times its ok, weird....

Louise.xx

[rince]

Hi Anne,

I too have no sense of smell or taste, but I have to say that it's not been a big issue for me. There are so many things to adapt to that it's been a case of no one single issue being a major problem, more the overall set of circumstances getting me down. If I ever did sit down and isolate every single "deficit" that I have then I probably wouldn't even both getting out of bed!!

It has taken a long time for me to begin to accept the person I am now and look to what I can do rather than focus on what I can't. Easy platitudes I know but I was an angry and over emotional bloke in the first couple of years post SAH (I still am now occasionally ). Slowly I began to accept and be "happy" with both myself and those around me, there may be some pillocks out there but there was no reason for me to act like one as well!

Scott

[Karen]

Hi Anne,

I used to love my puds or sweets, but literally find them too sweet now ... so, I very rarely have one. I've also gone off anything "milky"... I can't tolerate caffeine either ....

How are you with vegetables?

Perhaps you can gradually introduce some into your mashed potato ... maybe mash up a carrot and incorporate it with the mash? ..... as it's not too over bearing... at least you would be able to get some vitamins ..... if you're not eating particularly well, then perhaps you should think about taking a multi-vitamin supplement?

If you can't eat the right balance of food, then you need to see your GP and get him to advise the correct supplements or maybe get you referred to a dietician?

I've suffered from a lack of calcium + vit D + iron post SAH and I think that it's probably caused me extra problems and stuff that I didn't need to contend with ..... your GP should be able to carry out a blood test and rule out anything that your body is deficient in.

Good luck....xx

[Guest yasmin]

Hi Annie

welcome to the site, I can't help you with the food issue as my appetite has'nt changed at all, I wish I have lost the desire for the sweet things Karen!!

Hope it improves it must be awful

Yasmin

[Vivien]

Hello Annie, I hope your sense of taste improves.

I only have a small issue with smells since my SAH, I now use loads of scented candles, air freshener perfume

[stephen]

Hi Annie

I find most food very bland since my sah. Spicey food or fish is better. My sense of smell has got worse.

The big change for me is temperature of water, i need to get the shower set for me.

[Skippy]

Happy Birthday Stephen - hope you have a good one - just had a homemade chocolate muffin in your honour

Sami xxx

[Guest cdl]

My husband had a fall from height in Nov 06 broke his skull and had a SAH. He has completly lost his sense of taste and smell. He lost two and a half stone and has to have suppliments, even through his appetite is good. He enjoys textures now, I buy the best quality food I can afford and will give him lots of variaty this has given him a sense of enjoyment.I have taken to baking and making everything from scratch rather than ready made foods which aren't as textured.

One thing that came up was when we met with his epilesy nurse (he has post injury seizures) is that Terry has periods of an overwelming horrible taste or smell and these have now been classed as mini seizures.So this might be something to raise and consider, do these periods come and go? You need to note these times in a diary and discuss with your doctor. Hope this helps?

[Karen]

Hi Carol,

How's Terry generally doing now? Hope that things have improved....

You raised a very good point re: seizures and some people can experience an unusual smell or taste ..... I've included a link if anybody wants to read further information on seizures. http://www.epilepsynse.org.uk/pages/inf ... izures.cfm

[Anne Fleming]

Hi

Thanks everyone who replied to my last posting on distorted taste and smell after SAH. I saw a dietician though she didn't have much scope to help me, she did enlighten me in that she said what I was tasting and smelling in veg and other cooked food was the sulphur and the reason bread smelt and tasted bluemouldy was the yeast which is apparently a type of mould. With my scrambled taste I was noticing all the horrid bits people don't generally notice. She did say it was rare after SAH and no one knew if it would improve.

Just posting to say that after a few months of food supps, porridge, mashed potato and little else, my taste and smell seem to be slowly returning to normalish over past week. It seemed to happen at the same time as the propeller sound in my right ear changed to loud bells ringing so something must have changed, healed at the site of my haemorrhage.

I tend to be both impatient and pessimistic so if there is anyone else out there like me, even I have to say some symptoms will settle down in time so don't give up hope if you're struggling with something.

best wishes

Anne

[Karen]

Hi Anne,

Well it's good to hear that things are improving for you....

I also have the "bell ringing" in my ear or tinnitus ..... sometimes it changes frequency and at first I found it quite scary, as I had similar when the SAH happened. I've kind of got used to it now and don't panic as much, as nothing awful has happened since, but still haven't found out the reason, as to why it happens.

Good luck and I hope that things continue to improve for you...

[Guest Cyberhorse Mel]

I had a freaky experience today - i bit into a dimsim (an Australian/Chinese meat & vegetable fast food treat) and it tasted really bad and I gagged and spat it out. I gave it to my mother and she said it was fine and ate it. This is quite funny becausemy OH cant stand the smell of them (laughs). Then tonight mum cooked a lovely dinner with lamb mid loin chops and I tasted a mouthful and the same thing - the meat was too strong and I couldnt eat it and had to spit out the meat. This is quite funny as I have always had a very good appetite (read eat anything except offal).

I will be quite curious to see what else my body decides it doesnt like now. The funny thing is that I find food doesnt have as much flavour any more, and so I lose interest in it more quickly.

[Anne Fleming]

Hi Cyberhorse Mel

yes it sounds as if you're having similar problems to me. I'm vegetarian so don't know if meat tastes different but lots of other things taste horrible or don't have much of a taste. I think food with onions, garlic, leeks are particularly bad and of course they're a staple to flavour a lot of veggie food. Do things smell different as well? I had to get rid of my washing up liquid as the smell was so pungent and unpleasant and I am also smell quite a few bad smells walking down the street which I think are there but other people don't notice.

Welcome to the web site and look forward to hearing from you again.

Love

Anne x

[Guest Cyberhorse Mel]

Hi

The wierd taste sensations continue! It is quite bizarre as some things seem to have less taste whilst other things seem to have more taste.

I have only just started cooking again (6 weeks post SAH) and I am getting my OH to do the final taste test of foods to adjust seasoning becuase I really dont trust my taste buds. - Lucky I do not cook for a living or I would find it difficult.

I have developed an aversion t anything that is not freshly cooked and dont trust anything that has been stored in the fridge.

I also cant eat the seaweed around rice crackers - which I used to love - but it smeels strange now and too strong.

So yes smells also affect me. I find the stale cigarette smell that some people have is quite sickening. I went through this when I gave up smoking years ago but it seems to have been heightened.

I find amusement in the little changes that my body is going through and I mention them to my husband and family and friends and we laugh at them.

That is the best way to keep ahead of the situation.

I think it is very interesting finding out new things about myself after 39 years.

Mel

[Anne Fleming]

Hi Mel

yes it's odd never knowing how things are going to taste. I have a bad taste in my mouth all the time and I had been attacking it with tongue scrapers and mouth washes but nothing helps for very long. Do you get this taste? The hospital think a lot of the blood from my SAH must have landed on my taste and smell centre in brain. I've been very upset over it as most food tastes like sewage. Have you mentioned it to your doctor? It's the one thing out of all my symptoms that I would love to see improve a lot more. I miss smelling things like fresh linen, newly washed clothes, shower gels etc as they smell off.

Love

Anne x