Loss of smell and taste after head injury

Welcome, @gwenrn74. I moved your discussion to the Traumatic Brain Injury (TBI) Support Group here https://connect.mayoclinic.org/group/traumatic-brain-injury-tbi/

I did this so you can connect with others with brain injury experience like @westd @kayabbott @gregd1956 @dawnpereda @hevykevy @robertpierre89 and many others who understand.

Gwen, you are dealing with a lot of symptoms. Losing you sense of taste and smell has robed you of something you love: baking and cooking.

Did you take part in a brain injury rehab program after the accident to help with recovery?

My goodness, that sounds like a very serious incident. Please reach out for help. There is help and others who care.

Are you currently under the care of a neurologist and ENT doctor? Did they provide any options on what caused the losses you describe? I frequent some threads around here where those who had Covid lost their sense of taste and smell. It’s quite common with Long Covid. I was diagnosed right after Covid, but not certain if it was the actual cause. I also had significant Vitamin B 12 deficiency. Upon treatment, my severe loss of smell has improved greatly to a normal level! My doctors are ecstatic. According to them, it’s not common to improve that way. I can’t say what to attribute it to, but I have faith that the other part of my taste disorder (bitter taste) will also resolve over time. No one gives me much to rely upon, but I choose to have faith. All things are possible, imo.

I did do scent retraining with essential oils for months, plus any aromatic food I encountered. I can’t say it was the key. I never lost all my sense of smell or taste, but it was severely affected.

I hope you get some relief too! I found talk therapy to be very helpful. Please reach out for help. There is hope and help for you. Please take care. 🧸

After my stroke, my sense of taste and smell was affected. As I recovered (and continue to recover, more than five years later), I went through a series of changes.

At different times, my senses were very acute, then absent, then in-between, with periods when favorite flavors seemed disgusting, and then back again.

To be honest, it was maddening. Now, it has moderated pretty well, back to about where I started (except that peanut butter smells really, really good to me).

In short, please be patient. Brain injuries are mysterious, unpredictable, and can't be hurried. I'm no expert, but it wouldn't surprise me if you woke up tomorrow with your taste and smell back.

Brain injuries are horrid; you feel like you have lost yourself, abilities are dented or missing, and people treat you differently. Recovery is a very slow process but it does happen; the brain rewires. Have your doctor/neurologist sign you up for cognitive physical therapy (PT) and consider talking with a therapist specializing in brain injuries. I did a few group therapies which were a bit like "One Flew Over the Cuckoo's Nest." My moderate TBI was when I was 37, 33 years ago, rollerblading with full protection except for a helmet. My skull was fractured in two places, I had cerebral spinal fluid leaking out my left ear, permanent damage to my basal frontal (emotional, smell and taste) and left temporal (word finding) areas, tinnitus (my brain blocks this out unless I'm stressed), and balance problems (PT). Most of the recovery was a stair-step process with improvement followed by plateaus. My olfactory bulbs were damaged enough that after a few months I could taste butter and chocolate, other flavors took months or years. I would eat things and tell my brain what it should taste like. My dreams were about food. Texture becomes important in food. The emotional recovery is extremely hard; treat yourself well and give yourself time to heal. Try to find something to look forward to each day. I have celiac so am on a gluten free (GF) diet, and mostly FODMAP. Probiotics such as yogurt, kimchi, etc have good texture and help with SIBO. Consider keeping a diary of what you are experiencing, including any steps in recovery, and any foods or stresses that impact your health. Recovery felt like two steps forward, one step back so expect to be emotionally slapped around by what may feel like going back, but the brain is just resting. Once you are there, games help with rewiring. My smell and taste recovered after some years, and cooking is one of my big interests. I hope that you have supportive friends and family, but they tend to be a bit lost, not understanding where a TBI is and what you are going through. If you would like some GF recipes, I have a lot of them that are healthy with good texture. Findmeglutenfree is an app that has safe places to eat.

Thank you very much. This has been life altering.

Thank you. And thanks for mentioning the vile taste. I've named it the dead rotten stench of dead rat. It's in the medicine cabinet (Mint). Coffee is gross, the smell of it. Pepsi / Coca cola is chemical in nature. Bacon ? Vile. Pulled pork- vile. Wheat, onion, garlic are triggers for grossness. Apparently, I was on antibiotics, and not placed on probiotics, so now i have this FODMAP issue. From January to May, the Occ Med MD didn't want me on sedation, so there was this vile odor, stench taste, emanating from my throat- I honestly thought I had stomach cancer. The EGD and colonoscopy was 100 % clear.

I did vestibular therapy for 6 months. I'm passing cognitive testing as average, with one area above average. This is all Workman's Compensation driven.

I was a RN for 40 years and have taken care of worse head injured patients than me, so I'm quite confused as to how this was so severe I lost my taste and smell. I'm still doing neuro vision therapy for my right eye. My mother is 103 yo, soon to be 104 yo and I'm sicker than she is and take so many more Rx meds. We live to be very old in my family, so this is devastating- and the ability to not work is concerning in the face of inflation.

Thank you for your kind words. I will try the Vitamin B 12. I am deficient in Vitamin D currently, and MD is looking at hormone levels to aid in insomnia. I am on the list for talk therapy bc I really need it.
Workman's Comp is so isolating. One can't talk to colleagues and I miss my friends.
I am doing Transcendental Meditation twice a day. I miss my "cast iron " stomach and the ability to eat food without thinking about it. The GF flour is hard to bake with- perhaps NASA is interested in a rubbery saltine cracker that I invented ??

I also have traumatic brain injury. I lost my sense of smell and taste.
I’m new to this. So I do not know how to navigate through here. I have difficulty finding the correct words to express what I try to say. I forget to say my point in a sentence. It’s not easy to communicate. Gets somewhat frustrating. Beside pain and COPD
Breathing and heart. Anyone have any ideas on how to deal with this when trying to answer questions? Etc.

I can’t have sugar or flour of any kind. I would be grateful for receipts. Thank you Kay.
I have trouble with smell and taste. When I smell something it usually is not the real smell. To me it’s a bad smell but to other person it’s nice smell.
It’s late. I better try and sleep. Lol.