My name is chris and I had my strok 8 month ago which left me with not being able to eat because food has such a bad taste.....I seem to have a permanent bad taste in my mouth hich effects hat if anything i can eat or drink. I have been advised to add spicy addictives to help but this does not work. As a result i have lost a lot of weight and feel so very tiredall the time.
The doctors tell me what i have is very unusual nd there is nothing thy can do....my last hop is to find someone else who has or had the same problem and sek their advice.
Please if you can help find some time to reply
My PC closd so i didnt finish my post sorry
I also have a very enhansed sence of smell, its become better than a dog which leads to me being able to taste all the naty things i smell.....please help if you can
Hi Chris - I think a lot of sensory issues get stirred up by stroke. My husband also lost a lot of weight, which he could ill-afford to do, because of smell/taste/texture issues. He described certain foods as slimey & slippery, whilst he simply could not tolerate certain food smells, it took me ages to source a loaf which didn't "smell wierd". It took a while, but some normality has returned, although he is still very sensitive to smells which I can't even begin to detect. You definitely aren't alone with this, you can only hold onto hope that it will lessen over time. xx
My taste buds went very odd. Food that I knew was good would taste foul. I could ignore the foul taste and think about what the item really tastes of. Why the Docs said it was that unusual I cant fathom. A number of us get this. Strange, but my appetite improved from day one post stroke. I liked the hospital food. Pre stroke I was a right faddy eater.
Serious weight loss needs attention and food supplements should be used if the weight loss is severe. I have been trying, successfully, to edge my weight down to the right level for my age and build. Very chuffed I have done it. Very gradual, but I have knocked off the extra stone that I didnt need. And saved myself a fortune as my clothes now fit me again.
The tiredness is perhaps "post stroke tiredness", or as I term it, Stroke fatigue. Is that a part of your diagnosis ?
Assuming it is SF then you need to rest a lot. You cant fight it. Try to establish your normal nights sleep then have naps to cover the SF. Some of us believe its our brains turning us off whilst it is working around the damage.
My taste buds have returned to a good level. I think that was in year two ish. I am now 39 months and enjoy foods and dont get the foul tastes. Actually, you have light a little spark for me. Will I now be able to face eating foods that pre stroke I hated. I will try that out when the time is convenient. Brusells sprouts and liver. Will they still be yuk.
Stroke results in all sorts of issues. Its not just our limbs but also any of our internal organs. Some loose theri sight, some their hearing (I had big problems getting my hearing right) and you are unusual with the sense of smell. I believe your brain will moderate things. Its all a very slow process. But things do get better. So hang on in there.
You are not alone
I am 2 years post stroke and have issues regarding eating and smells. I have lost my sense of smell and have no appetite and never get hungry. I have to force myself to eat most days. Just another issue to deal with in this nightmare ?
That's a tricky one, My smell is more acute than it was before and my appetite is undeminished and I have to take great care with the amount of food I eat or face the inevitable weight increase.
I'd suggest that your loss of smelling ability is the main cause of the problem, without this there would be no incentive to eat.
Good luck with your ability to find a solution!
Hang on in there Susan.
Recovery continues even after two years. Let your poorly brain recover at its own pace.
Remember its only the messaging system that the stroke wrecked. Use this temporary state to get your diet right (right for you).
Things do improve.
Keep being positive
We are here for you, you are not alone.
Thank you so much for taking the time to reply, while im sorry you are both going through this it gave some comfort to know im not the only one and things will improve
Thankyou for taking the time to reply it has helped in believing im not alone, Its good to hear that things did get better for you and i look forward to being able to eat properly again
Thankyou for taking the time to reply to me......I do agree what a nightmare all this is. I have had a few replies which has given me hope that this will come to an end or at least improve one day
Hi Chris I had two strokes in October my smell is ok but it has left me with bad taste especially sweet things . So I eat high end taste things like marmite , onion etc I was told there is nothing to be done but wait as it usually comes back . Hope yours does
Hi Chris - you will read quite a few stories of these sensory issues faced by stroke survivors. My husband lost weight after his stroke, because he couldn't find food appetising. I tried so many things to tempt him to eat, but taste, smell, textures were a real issue. In our experience things do improve, but it takes time. I'm surprised the doctors told you this was unusal; if they knew anything about stroke, or took the time to do some research, they would have found that this is very common. So bide your time, and you will gradually notice improvements. Best of luck, and good wishes to you, xx
7 years post stroke and I still have issues with taste and smells. They told me that my tastes would change and my 1st thought was - please let me still like tea and gin!! I do the latter in strict moderation as is all alcohol - I'm a cheap date, lol! It took me 2 years to like coffee again, walking past Costa coffee or Starbucks was a nightmare I would cross the road to avoid them. I also lost my taste buds for a while, initially the hospital food post stroke was disgusting and vile; like those jars of baby food adorning the chemists shelf, bright orange no matter what it was supposed to be with this blob of fluorescent green in the middle. I came out of hospital 3 stone lighter as I had no appetite at all, the dietician and nutritionist put me on those milkshakes they give to cancer patients to improve my appetite. I too still have days when I struggle to eat, personally I think it's all the meds I take and the majority of those make you want to sleep. All I can say is you learn to adjust, adapt and find your own balance. Small and often and if it means you eat cornflakes or cheese on toast 3 times a day then that's fine but talk to your health care advisors, or try getting your meals delivered from companies like Wiltshire foods.
hi I’m Pauline, I find evsince my stroke my taste buds changed dramatically. Nothing tastes nice even cup of tea, most drinks, yoghurts, I find savoury is slightly better than sweet. Would b good to enjoy cup of tea again. Here’s hoping!!!
Hi Chris very similar here, nothing tastes nice, mouth feels horrible. I also lost 2st in weight, eating little better now but such an effort ) my stroke was last July) all u hear from people, it will take time, I was told 6mths, come and gone now I’m thinking 12mths things might improve. I have learnt that u can’t rush this so try and stay positive, most of us seem to b in the same boat, good luck. Pauline
Hi Chris, I m Rachel, I had my stroke november 2016, and like you it has affected my taste, big time. I think you probably have the same as me, dysguesia, there is nothing medically that can help, according to my experience and reseach. I will share with you things that have helped me. First of all, as I am one of Jehovah's Witnesses, I find the lovely promise from God that there will soon be a time when "no one will say "I am sick" Isaiah 33:24. When Jesus was on the earth he "cured many people of sicknesses and serious diseases" Luke 7:21. That shows us what he can do AND will do in near future when the kingdom we pray for,comes. Until then we need practical help to cope with rthis everyday 'trial' of eating! Hard isn't it? The 1st thing I discovered was to eat only 1 food at a time. (Reason being , if you have dysgueia like me then it means that your taste buds and brain are not 'talking' to one another. The brain cannot work out the tastes) For this reason it is best not o have mixed up food eg. no pureed soups or even stews as the taste 'mingle' and poor brain cannot work out what you are eating! Funnily enough the only exception is curry, strange, but true. Like you, mealtimes are a nightmare, I think one of the first rthings I had to do was adjust my thinking on the matter- I HAD to eat it as no good sitting at meal table crying, what good did that do? What I did was try really hard to find things I could stomach, so in my experience I have found is to have meat/fish and veg on plate and not mix them up too much, chose what you have on your fork and experiment what you can manage and what is a no-no. My experience is that ginger biscuits are very tolerable, even the choc covered ones sometimes!I do hope that my observations are of some help. I still make mistakes with meals and find I cannot eat some things, sweet potatoes, tomato sauces are too bitter so I sweeten them, I use dates. It helps that I have a husband that is my 'dustbin' and anything that I cannot eat I put on his plate. Nothing is worse than forcing down objectionable food . You have to eat Chris, try baked spud with just salt, try other stuff with it if you can but take it gently. Hope it helps that you are not on your own, it is a RARE side effect , so not many of us. All the best. Regards Rachel. Let me know how get on, if I can work out how to get back to this page!!!!!