Can't taste food after a stroke

[Terry5757]

Had a stroke on 12 july 2023.since then I haven't been able to taste my food I also gave up smoking on that date I thought it was giving up smoking but I'm fairly sure it's not.in the beginning the food tasted vile.it tasted like raw sewage and a metallic taste I couldn't eat for about 3 weeks.i was on yoghurt and ice cream .even up to this day food doesn't taste normal it just taste bland.no flavour whatsoever.im on bisoprolol.atvorstatin.and apixaban.the back of my throat feels really dry and sore .and I get a really dry mouth and lips .is this normal after a stroke because it's really getting me down.im trying the foods I ate before the stroke but just doesn't taste the same.cdn anyone help please

[Hidden]

Hello Terry, so sorry to hear about your stroke, I cannot help regarding your question but does it help to know that there has been some improvement over time. Assuming you are receiving some therapy, are they in a position to provide you with some information which might help. It’s purely academic but were you taking Apixaban before you had the stroke.

Are you aware that there is a forum called Different Strokes on HealthUnlocked who offer support for working age stroke survivors. If you click on “My Hub” at the top of the page and type “stroke” in the search box, this group plus 5 others are displayed. They maybe able to answer your question, hope things improve soon.

[Terry5757 in reply to Hidden]

Have only been taking apixaban for about 2 weeks

[Hidden in reply to Terry5757]

Thank you for sharing, Hope you find some helpful answers soon……

[Singwell]

Talk to your GP about the dry mouth and lips. Sometimes happens after surgical interventions so I'm guessing it's a nerve thing. You've had a stroke so maybe saliva glands affected in some way? Something to do with olfactory system? I'd think that would affect sense of taste too. There are definitely products you can have for the dry lips syndrome - I've seen then promoted at voice conferences.

[john-boy-92]

Hi Terry, I'm John and I had a stroke in July 2016. Two of my permanent side effects are loss of part of my peripheral vision and, loss of my sense of smell (it might come back for a few seconds one or twice a month). Try going to hospital during COVID and saying that you don't have a sense of smell!

You may improve over time through brain plasticity, when a different part of your brain takes over a function. Until 18 months to 2 years ago, there was little support for stroke survivors and carers, but that has changed. You may find that universities will value your input as a stroke survivor and also, that you can talk to second and third year medical students about your stroke. The Stroke Association has a My Stroke Guide that may help. Ring the Stroke Association for advice as this horrible side affect will not help your mental state. Ask your GP Practice to refer you to support through your hospital.

There isn't an properly active stroke forum on HealthUnlocked, but I may be able to answer some questions.

[Jackiesmith7777 in reply to john-boy-92]

Hi,

My husband hs also lost his sight in the right side of both eyes due to his stroke 7 weeks ago, hs yours improved with time and were you able to drive eventually . Thank you

[john-boy-92 in reply to Jackiesmith7777]

Hi Jackie. First off, make sure that both of you find out about support; you both need it. The Stroke Association have a My Stroke Guide that can help and, there are also Zoom sessions where it's good to talk and, to work on some projects when you're both ready (Jenny Stephenson at the Stroke Association is a good contact). You both need time to adapt to the stroke and the reduced eyesight (hemianopia). When you're ready, you will find that universities have studies where they appreciate participation by people who have had a stroke and carers. My wife hates the term carer when referring to her, but she is my support.

Eyesight may return in the first six weeks but it's not that common and, less likely the longer since the stroke. Your husband will need to adapt by turning his head or eyes to the right. There is a clinical measuring device called an Esterman chart that produces dots on paper where you can't see. That will give some guidance, and necessary if your feet are in the area that can't be seen.

The DVLA revoked my driving licence and although I was allowed a assessment after 18 months of not driving, it was in an unfamilar car or an unfamiliar route without any practice. I failed. In theory it's not a driving test but I would describe mine as close to Advanced Driving requirement. To have a further assessment I would need normal vision, despite having the backing of my GPs and, an academic Opthalmologist who advises the DVLA Medical Group on stroke related vision issues. Since February 2020, the DVLA allow a limited time for refresher driving lessons before the assessment. As an indication, I looked at a sample of 12,860 car drivers whose licence had been revoked due to visual field non-compliance. Of those, 117 had their licence returned and some of those would have been through the Courts. The Public Accounts Committee report into the DVLA backlog (published this year), stated the possibility that DVLA's treatment of disabled people (such as having hemianopia) may be disability discrimination. I was privileged that the Committee included a link in the published report to my written evidence to the Committee. The DVLA have issued a current Call for Evidence into legistaion that affects licensing of people with medical conditions: I will be submitting written evidence and, I've pased the link to various clinicians.

I don't lurk on Health Unlocked every day, but if you reply to one of my posts, I'll get an email and log in. It's an emotional and strange time for both of you. You both need care , love, and to talk. Start by ringing the Stroke Association and find out the contact for the local group. Speak to your GP Practice and the local hospital and find out about rehabilitation and support. You may think that you're on your own in this newly strange world, but there are many of us here - I may see both of you on a Zoom session one day. Keep as well as you can, and remember that you are not alone.

[Jackiesmith7777 in reply to john-boy-92]

Thank you for your kind words and advice . He s going to find it hard not driving as he did nearly all the driving before so I’m going to have to try and be brave and take to the steering wheel more, we will be receiving our blue badge soon hopefully as he bumps into things as he only has 50% vision in both eyes. We are in the process of joining a local stroke group of all ages, my husband is 64, so hooefully we will get alot of advice and support from them also . We have our first session Sep 7th. They are still trying to sort out his AF which caused the stroke in the first place even after an ablation in 2017 . So I’ll let you know how it goes and hope to meet up on the zoom chat in the future .

Thank you again

Regards Jackie

[Gumbie_Cat]

Consulting your doctor about it sounds the best way forward. I lost my sense of smell and taste when I had Covid last year - luckily short lasting. At the time I found some things online about smell training, just in case any of the information at this site might help - abscent.org

[Countrydweller2]

I lost my hearing after a stroke end June 2022, it is improving gradually. I hope your taste improves.

[john-boy-92 in reply to Countrydweller2]

Six weeks ago I was fitted with NHS hearing aids, then I went mad and ordered some paid-for hearing aids that link to the television and phone. I no longer spend my waking hours saying; "sorry love, what was that?" My wife says I'm no longer a grump and it's taken ten years off of me. Wish I'd had them earlier.

[JOY2THEWORLD49]

Hi

I had a stroke in Sept 2019. With AF and discovered shadow on Thyroid - later biopsy showed 1.9cm carcinoma in right lobe, bit in left. Thyroidectomy included 12 right lymph nodes removed with 2 infected.

I still have trouble swallowing but not taste problems.

I would ask ask what drugs were you given .. sometimes due to a clot/s.

COVID test positive gives one no taste.

In hospital they gave me liquidised food which had little taste.

Here's hoping your food taste will returm.

cheriJOY. 74. (NZ)

[nuked1066 in reply to JOY2THEWORLD49]

Very interesting because I have Graves and I still think my thyroid is giving me issues. I have never had the thyroid scanned, merely tests but my last referral showed antibodies present. My gut and symptoms tells me that the thyroid is still not right, but they keep referring to 'normal' TSH levels.

[JOY2THEWORLD49 in reply to nuked1066]

Hi

I had normal TSH levels! I had no lump either. The carcinoma 1.9mm was on the very edge of my right lobe.

A carotid scan will enable the scanner to check your thyroid as well.

You have AF. So that's a good one.

cheri JOY

[plopper]

I had a stroke in 2017. Food had a nasty taste for about three months.

[nuked1066]

Quite normal, Terry, I was lucky and regained the taste after around 6months but to be honest, not tasting the food made me not want to eat much, so I lost quite a bit of weight. Eating a more healthier diet, removing wheat has helped me immensely. Best of luck with your journey, I never miss my meds meds and if there's a cardiovascular trial you might be able to join, I would recommend taking it. I know Oxford UK has one but depends on where you live.

I wasn't taking Apixaban but then I was considered low risk and back in Normal sinus rhythm, I perhaps should of been in thinners but everything is considered against cost nowadays.

[Chinkoflight]

Your hospital discharge notes might/should refer to the scans you would have had. They would indicate where the clot had located and any brain damage associated with the clot. This might help you understand any residual symptoms. It is easy and very natural to focus on the personal consequences of the stroke, and loss of smell and taste is such an important sense. Others have talked about plasticity in the brain and this is certainly a key to recovery. I am sure as knowledge improves post stroke recovery programmes will develop. I had a severe stroke, complete loss of right side movement, some peripheral vision loss, hearing loss and speech. But quick thrombolysing treatment meant as far as the hospital was concerned near 100% recovery and discharge in 3days. But I was left with an odd sensation in my right leg that left walking feeling like I was on a rocking boat and I was worried about falling and fitness. With no help on offer post stroke apart from meds, I decided on doing my own physiotherapy to train my legs to work better. I engaged with Couch to 5k and 18 months on I'm running most days, do Parkruns etc. My legs are as strong now as they have ever been and the floating feeling has gone too.Here's a thought, if I were you I'd have a go at retraining my sense of smell and taste, probably smell first as it's important in taste. Try strong smells, favourite smells etc. Give your brain a chance to re learn this stuff.

Good luck. A loss is a loss but in the scheme of post stroke recovery I think you and I are probably the luckier ones.

[WildIris]

I lost my sense of taste and smell about a decade ago. One leg was paralyzed. Cheese tasted like plastic. I could somewhat taste jalapeño peppers and began to put them on everything. Gradually I regained use my leg and partially regained my sense of taste and smell, though I cannot cook dishes that anybody else likes anymore-still too fond of strong spices. My foot is still partially numb, but I walk normally. Best to you.

[Jackiesmith7777]

Hi Terry

My husband had a stroke 7 weeks ago and he can’t seem to get rid of his hoarse voice . Maybe it effects the vocal chords and taste buds , although he hasn’t noticed any difference in taste . He can’t read or write and finds it difficult to get his words out and he calls things by the wrong name . Hopefully this will improve given time . His stroke was caused by AF although he had an ablation in 2017.