Eating Issues After TBI

Ask the Expert: Eating Issues After TBI
Janet Brown, MA, CCC-SLP
Question: 

What advice can you offer someone who is having problems with eating as a result of a TBI?

Answer: 

After a significant brain injury, problems with eating, drinking, and swallowing are not uncommon. Even mild difficulties can be embarrassing in social situations. More severe problems can pose serious health risks. Ask your doctor to refer you to a speech-language pathologist if you have not had a thorough evaluation for this problem. Meanwhile, here are some risks and issues to be aware of:

  • You may dribble food or have trouble chewing if the muscles in your mouth are weak.
  • You may cough or choke due to weakness or poor timing when you swallow.
  • Liquids may be harder to swallow than solids because they run down your throat too fast.
  • If food or liquid go into your airway instead of your stomach, you can get pneumonia.

 

Posted on BrainLine August 5, 2009.

Comments (51)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

Zaphira Ey replied on

I have healed phenomenally in the 2.5 years from my severe TBI. I struggle with over eating, I am always so hungry. I have lost 10 lbs and been closley controlling my callorie intake/ outtake but I am so hungry. would this be due to a part of my brain thats out of whack that monitors the hunger feeling ?

Anonymous replied on

Hi,

I read a lot of the posts here, I feel like a lot of you are facing more than I am... so before I tell you about me, I just want to say I'm sorry for everyone going through these things.

Last December I had a moderate TBI from a fall on concrete flooring during a non-epileptic seizure. I took it easy for the first couple days, but was unaware of the TBI cause my family hadn't told me. They said being a single mom, I had responsibilities to get back to.

So, I struggled for a while and then I talked to my doctor a couple weeks ago (I admit I was in denial and oblivious to what extent- I figured I was just too busy trying to play catch up with everything)... so it didn't occur to me to tell the doctor I am forcing myself to eat 2 x's a day or that I never feel full or that I am having insomnia and that I still feel foggy or light headed at times, that I find time gets away from me and that I can't even finish one chore in a day.
I get frustrated and feel like I am lacking cause I can't keep up with what I used to... when I tried talking to my family they don't want to hear it and think I am making excuses.
My doctor said she totally/permanently disable me if this happens again.

I am scared, I feel alone and inadequate, but most of all I feel like I have no answers and no moral support.

I came looking for answer's, and thankfully I found this site... because of all of you posting, I don't feel alone anymore and I feel hope that there are people who understand what I too am going through.

So, I am actually posting to say thank you to all of you for sharing your stories!

Anonymous replied on

My husband had a tbi jan,2021.. and now i notice he cannot stop eating
Hes always hungry.

Anonymous replied on

I had multiple tbi’s 15 years ago and I’m starting to have some real issues now. One of them is that I often just don’t eat. Either I forget, or have no desire to get up and cook. I used to cook all the time and now I can’t even cook a frozen pizza.

Rachel replied on

Same here. I try to just set Meal times now. Smoothies at breakfast with extra coconut oil added in case I forget later in the day. It’s so frustrating. Also because low nutrition makes my brain fog even worse.

Anonymous replied on

My son has suffered TBI and craves for food all day long.

Mary replied on

I had a TBI in 2018. Strangely, ever since then my body never sends or receives an “I’m full” signal, maybe once in the past 18 months. This makes me find myself snacking non-stop between meals unlike I used to and I do not understand why. One doctor said it’s possible the neurons aren’t communicating it with my gut. Any recommendations for how I can have this addressed?

phyllis replied on

I am the same way. I can't find a way to stop. I ate healthy prior and now eat junk food. Depressing! Good luck!

Janice perisreris replied on

I too had a TBI in 2015 ,and have gained so much weight because of constant eating

Debbie replied on

Immediately after a TBI automobile accident 38 year ago, I cannot control my appetite.
I NEVER feel "full", even after just eating.

Muffie replied on

I have had similar difficulty, but not the same. I have TBI and a year prior Anoxic brain injury. I no longer register hunger OR fullness. I LOVE cooking, but food is super gross to me now. I have fluxuated in weight bc of it, but err on the side of thin, too thin.

I am happy to hear that I am not the only one. Thank you! I have family to force feed me. unpleasant and aweful, but I am still alive, so how mad can I be??

Alysse replied on

Heyyyy, this happened to me as well. I have had 7 concussions due to an underlying heart problem and I had two most recently two weeks apart from eachother due to syncope. I had no appetite whatsoever however for six months...and lost a lot of weight and lhad a hard time swallowing without my nervous system telling me to vomit. I found a couple things that helped. I was becoming very worried about how little I weighed and had very little energy and I wanted to eat but I had no appetite and I would almost throw up or did halfway through a meal and dreaded eating. Partially I had stress and had to change my living situation- very important step. Not easy. I also had to have a conversation with my doctor about an orexigenic which is an appetite stimulant. I take a supplement over the counter calledl Eat More and it works well and somehow masked the signal my nervous system was telling me to puke and instead made my stomach feel hollow and need food. My hypothesis would be if an orexigenic or anexigenic can help with appetite signals to the brain it may help the brain pathway to heal after injury. I was on some nasty nerve pain killers for awhile to recover and sleep enough and I do think it messed with my appetite and brain habit and pattern significantly. I would talk to a physiotherapist who specializes in concussions or a doctor about taking an appetite stimulant or vice versa. Also, I saw a Sacral Cranial massage ltherapist and a Matrix repatterning therapist. This also helped with pain and took away the revulsion of eating and problems swallowing as well as reduced stress. Perhaps, for the opposite problem it may help, but for certain it helps with natural pain relief.

ELIZE replied on

I've got the same problem. I was in a bike accident Dec 2018. Had cognitive brain injury. Feel like I eating like a man and still not full. Would love recommendation

Madeline replied on

I dont know if I had a traumatic brain injury but I fractured my pelvis heel spine and femur socket and I had a pelvis femur and back surgery and I have had no appetite for two years.

Beth replied on

Is it " normal" for a TBI survivor to skip meals.... aka forgetting to eat?

Anonymous replied on

my brother was hit by a hit-and-run driver. He's had 3 brain surgeries and refuses to eat. What can i do ?

Anonymous replied on

Drink Ensure, I could not eat after I woke from a 3 month coma, I had a stomach tube and after that was taken out I drank 3 cans of high caloree Ensures a day for my daily food. It is drinking not eating. One for breakfast, One for lunch, and one for dinner.

Haroon Rasheed replied on

my father was seriously injured in a road accident and still he is unconscious...he affected from brain tauma...and he totally refuse to eat any thing else....any body tell me this why he can't eat???....

Michele replied on

My dad fell and is in rehab w head trauma issues. One of his changes is that he eats VERY fast. Is this a symptom and will his eating habit change?

Winnie replied on

I had a brain infection 3 years ago called Herpes Simplex Encephalitis which causes brain damage. The most dominant problem is totally no appetite., though it is not the most serious of the problems (lack of memory for names, events, etc, are more serious). I lost about a stone of weight in the early days but when fully realised problem started making myself eat. From practical point of view managing ok, but psychologically it is awful. Waiting for help in the area.

Susan replied on

My husband sustained a TBI in August of 2017.
Over the last couple weeks he’s lost his appetite.
This week he was pocketing meds and now he isn’t swallowing

Any suggestions?

Rebecca replied on

I had a TBI iN feb 2018 and have no appetite :( I’m hoping and praying it comes back !! And the dietitian wants me to eat 1800 cals so I’m trying to eat so I stay in that range but I could prob go days! I’m not supposed to lose weight yet either :/

Jesse replied on

Me too 2017 and still no hunger or thirst I don't know what to do it's been 3 years

Confused replied on

I've had the same. I fell down last Saturday and split my chin bc I hadn't remembered to eat since Tuesday. Never Hungry anymore. Why?

DJ Stewart replied on

I see everyone is saying that they have a loss of appetite my daughter is 38 and suffered a severe brain injury 7 months ago she cannot swallow correctly and she aspirates she is on a feeding tube and they do a bolus feeding but she cannot drink water or anything liquid and they just recently tried applesauce but she still coughs a lot she has gotten pneumonia a couple times.
Her entire left side has been damaged and her brain and her brain stem have been damaged.
she is constantly saying she is hungry and thirsty it is Non-Stop!
even though they are feeding her through a feeding tube every 4 hours I don't know what to do she is absolutely miserable!
she says she is starving!
she did initially lose about 20 pounds but has since gained about 4 lb in the last 2 months has anyone else had to deal with this and if so how was it resolved?
because she's so miserable and we feel so bad for her.

Anonymous replied on

Back In 1985 I was hit by a car going 40mph, flew over the car with a snapped in half tibia and fibia compound fracture, in a coma 3 months. I had a severe TBI, I was on a stomach tube to, was starving could not stand seeing mc donald commercials on a tv in my room, my mouth would water, I could not talk but wrote on paper scribbley because of Ataxia 'FOOD' always but they would hook up a bag of brown liquade to my stomach tube. They retrained my swallowing with Lollipops they would hold but 3 months later after I got to drink 3 3000 calorie cans of ensure a day- having taste, it was great, vanilla was the best like a malt. Good luck to you I hope this helps.

P Smith replied on

Is she receiving speech therapy? They will help with swallowing, swallow testing and eventually, maybe the feeding tube can come out. It took over a year for my husband to get his out and to learn to swallow, eat solid foods again. He is 100% disabled from his TBI. Praying for her and you!!

Michele replied on

Thank you. Everyone acted like i was nuts. Trouble swallowing, chewing, taking pills, talking. I only wanted soft foods and things tasted different. Sometimes I just wish doctors would listen!

Mary Fox replied on

14 years post for my daughter and every day I have to ask "did you eat? What did you eat and how long a go did you eat"? She just doesn't have the need to eat anymore.

Rebecca Horton replied on

I have a TBI and have no appetite. I have problems with what seems to be feeling of gagging when I eat. My stomach also doesnt growl much. I have gone down from 151 to 114 at one point. Dr. Put me on some kind of cancer medicine to make me eat. It helps some but then it locks everything else up. This is very frustrating. I am back up to 126 but if I dont stay on top of it, I loose weight real easy.

Anonymous replied on

I had a severe TBI from a slip and fall on an icy road. Strangely I didn't loose consciousness, but I don't remember anything from that day or the month I spent in the hospital afterwards.

Ever since I haven't felt hungry at all, but out of normal habit I have consumed a small amount of food at my regular times. It has been 7 months since my TBI and I'm left wondering if my lack of appetite will be permanent. I have lost 80 pounds, so if there is any good that came out of this it is that...

Anonymous replied on

I also lost my taste for food. I have lost 16 lbs in less than a year. I am very concerned as I am way too skinny. Now freezing cold everywhere except my own house. Its very depressing.

Anonymous replied on

In August 2016 had a car accident. Was told it caused a severe concussion. Had to go thru speech and physical therapy. Since the accident I have had problems with my taste. Only really spicey or sweet register. The neurologist is telling me this can't be a side effect of the concussion. I also have problems with semi numbness. She doesn't understand this either. And my temps are all over the place. Headaches are horrible. And muscles in shoulders and neck are tight (dry needling didn't fix it) musclerelaxer isn't fixing either. Now she's saying it's in my head but not my brain. Doing an MRI of the brain stem to see if it's damaged. I'm wondering if I'm crazy or are there other's who have dealt with this.

Serena replied on

I have epilepsy, several tbi's and tia's. Have similar issues struggling with appetite and weight loss. Heres one thing I know for sure.... if your neuro is telling you its all in your head, get another neuro immediately. Second opinions save lives.

SARAH KNIGHT replied on

I had a TBI 22 years ago and I lost control of my temperature..... I don't feel the heat so I have found that if I keep myself at a low temperature, it's a lot easier to keep in control of it..... If that makes sense. I also lost control of my appetite...... I could eat all day if given half the chance..... So losing weight is the hardest task!

Lisa replied on

Me too. I've had several brain injuries. I prefer being cold...problem is that I allow myself to get way too cold. My arms and hands are often room temperature it's really weird.

I have developed swallowing problems - I never eat without plenty of water around...it is frightening not being able to clear my throat enough to breath even with small bites of non-dry foods.

And, after a contra-coup, I doubled my weight... I am about 1/2 way back to healthy and have to be careful. It seems like I have a total disconnect between me and my stomach.

No doc has ever associated these problems with brain injuries... I wonder if there is any help??

Barbara replied on

my daughter had a server head injury 30 years ago, her speech is impired she cant walk very good,, she wants to eat all the time, we have to hide food from her can I get some help from someone is there anything we can do?

Angel replied on

Barbara, I'm in the same position with my sister. Have you received any advice?

Spencer replied on

I just had a TBI on september 19th 2017. I dont remember the accident or 6 days in the icu, i also can only taste spicy and sweet. I have no smell. Muscles in my neck and shoulders are also tight. I damaged my ear, and lost hearing as well.

Ranger replied on

I fell fractured my skull, damaged ear and lost some hearing as well and damaged elbow,(tore ligament) 7 months ago, lost 36 lbs, taste is spicy and sweet as well, I will try to eat some things and my body rejects it and I spit it out and not intentionally, i have scar ache in back of head some sort of headache but damaged my nerves up there!! I don’t recall how I fell and even had a post-traumatic seizure and I am not epileptic either, Hospital, I was there almost three weeks! Only 3 days in ICU though, So tired of it all because I fell from a ladder and I don’t remember most my stay at the hospital, every day is a challenge on its own, even my mood, my moods can be temperamental for sure

Linda replied on

I fell off the ladder sept.16.2018. Grade 3 concussion . Broken clavicle with surgery and still get weird swelling between neck and clavicle.
I have the exact same thing. I taste extremes but no appetite. I'm never really hungry anymore.

Anonymous replied on

It has been 8 yrs since my tbi incident and still don't have a "shut off" when it comes to food.  I can't taste food so well and I just keep eating and eating and eating.  I lost my taste, senses for salt and spices, and sugary things taste so sugary? My appetite is is like I don't have one, but I eat anyway just to.  so I eat and eat and eat.  Crazy!

Elizabeth...

Michelle replied on

I am 28 years post TBI and I am just like you. Only I find myself sneaking food and hiding to eat it so that no one sees me! I can't control this. It's a constant battle with myself.

Angel replied on

Michelle,

My sister is 10 years in and she is obsessed with food. She sees it and gets so extremely excited it effects her breathing. She gets all tensed up which is very bad for her. She is in a wheelchair and does not walk. She is gaining weight and I am so concerned with this issue. Have you gotten any advice to curb your appetite or how to mentally address this issue? It's made eating or being around food almost unbearable. She consumes it so fast and puts so much in her mouth, we have to feed her or she'd most likely choke herself. Any help would be greatly appreciated.

Barbara replied on

My daughter is post 30 years, and she hides to eat she cant be hungry Have u found anything to help you, Its a battle to stop her,,, I need help thanks Barabra

Anonymous replied on

Getting to grips with the issues that arise after my injury is weird. I don't know how else to describe it. Right now I hate eating at school because some people mock me for my issues. Aside from that, my appetite is still there, and my sense of taste and stuff, but I suppose the big issue is the dribbling, if only because it's embarrassing. I even feel awkward in front of my house mates even though they don't comment or stare. I've been a lot more self-conscious since I got hurt because of things like this but eh...

Anonymous replied on

Just last week was the 2 year mark of my 'accident' from which I received TBI. I have no taste, no smell and impaired eyesight. Something I can't explain is the phantom smell of burning I get. I have no memory of anything except for a truck coming toward me which came back to me some months after leaving hospital. Interestingly there were no witnesses and I was left not breathing til I was found.

Anonymous replied on

I lost my taste buds and have no appetite. Lost 7 pounds since my accident which was 6/21/15.

Anonymous replied on

I have lost my sense of taste in a lot of food. All citrus is bitter & I can't eat a lot of things I use to because it tastes terrible.

Anonymous replied on

My brother has a tbi and he has lost his appetite to for the last 14 years, he's also lost his sense of smell, and he doesn't eat bread anymore.

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