I had a severe tbi end June 2022. Been on Levetiracetam 500mg twice daily. I’m now about 25lbs heavier than when I was discharged and about 18lbs heavier than my norm.
I HATE carrying this much weight around and have had to buy some clothes two sizes bigger and I’m worried this isn’t going to stop.
I lost my taste and smell with the tbi and that, along with a lack of motivation and difficulty in completing things and remembering things, oh and “can’t be bothered” attitude… have meant that I struggle to turn things around.
Does anyone have a similar experience with weight gain or suggestions re diet plans that require minimal input?
My gp said not to worry about dieting as there’s enough to contend with but I’m so uncomfortable that this can’t carry on.
thank you
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Justafall
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no I’m literally growing by the day it’s completely out of control yes I’m glad to be here also but with the surgery scar and shaved head I can’t recognise myself I’m feeling deflated and losing my enthusiasm for trying to get back to myself.
Do you think that after surgery it can alter your hormones and make your thyroid out of control
You’d like to think that someone “clinical” could answer that question and advise you how to get on top of what’s happening to you.
I didn’t need surgery after my fall so I’m thinking my weight gain is either down to meds or something having changed in my brain - as well as not exercising as I could previously and not eating “well” as all I can taste is “spicy” and I seek out crunchy/textured food.
I believe if we were seen as “whole people” and treated holistically then unwanted weight gain would be seen as having an impact on our well-being. Unfortunately that’s not going to happen so I’m hoping that someone on the forum will have some suggestions or be able to signpost us.
For now though hang in there and keep asking the questions at any and every review you get.
I too have suffered weight gain gone from a 16 to a 20 in size. No specific reason other than my mobility has been impacted , consultant and docs didn't seem to care . I have shifted my main meal time to middle of the day as I also have developed heartburn for the first time on my life. I also cut down on carbs dramatically. This all seemed to help, lost 6lbs. I too feel uncomfortable so I feel your pain
Thanks for responding and for the empathy. Having read the replies I’ve had already I’m worried that even a strict diet won’t shift the excess weight. I was thinking I’d go back on a Keto diet in August, particularly since you’ve said reducing carbs has had a positive impact for you. if that doesn’t work I hope my social filters don’t go wonky again or I’ll be shouting at anyone I think is looking at me because of my size! Hey ho 🤕
My daughter had a tbi 5 yrs ago after being involved in a car accident . She lost smell and mostof her taste too . Her mobility is fine more than fine . We try and encourage healthy eating but she is obsessed with sweet things and if left unattended will secretly binge (but deny it when asked ) . We don't thinkthat even with the searching out sugary things she should be the weight she is . As I said she is incredibly active ; walks miles , swims, has fitness yoga and pilates , dance sessions but still can't shift the weight which by the way does not bother her at all she doesn't seem aware of her size . It worries us her family because of what being overweight causes health wise . She has more than enough to deal with already . She's 28 . As others on the the drs aren't interested...
What a dilemma. It’s great that your daughter is so active and that at least some of the physical activities provide social interaction to stimulate the brain.
I simply can’t understand either why the medical profession have no interest in our weight gain - as you say it can lead to so many other health problems.
It sounds as though you’ve become the “diet police” in your daughter’s life which is a difficult role to take on and puts pressure on you both and your relationship.
I just dont understand why brain injury is such an unknown quantity in this country ! The consultants don't even seem to know much. I basically got a letter writing me off and when i challenged this and said I wanted to be seen again (I have never been given a face to face appt, all done over the phone) they refused to see me. So here I am, overweight, dribbling thing with temperature control issues with no help whatsoever.....it's not a wonder that you can add anxiety and depression to my list too 😢
I too couldn’t believe there was to be no consultant follow up after discharge. Since I wasn’t laying down memories whilst in the neuro ward (1 week) I really didn’t have a clue who I’d seen or what had been said. However, I eventually got to see the neuro consultant who’d dealt with my case a year later after I’d repeated to all and anyone clinical that I needed to understand what had happened in order to move forward.
It seems there’s such a shortage of every specialism in the neuro field that the focus is on keeping us alive at the point of injury but thereafter it’s pot luck.
I’m really sorry to read that you’re feeling so low and the difficulties that you’re struggling with. Have headway been able to help?
Thank you for your kind words. I have spoken to Headway, but they also can only help so much. The problem with me is that everything points to hypothalamus or pituitary damage but tests show nothing ! Therefore the consultant wrote to me saying it was just brain damage basically and nothing else can be done....I was stuck on a ward with people who had suffered strokes and treated dreadfully. The ambulance people had reported that I was drunk and fell off a ladder when iin fact I had trippped in my garden when watering some baskets and fell on a wall. I was treated accordingly with comments made by both nurses and doctors....such as, oh so you were drunk and fell off a ladder.....at the time I could barely speak but I heard every comment. I complained about the hospital and the ambulance service but it didn't really help much. Interestingly the ambulance service in question was on the news the other day as their methods have come into question, made me feel slightly better....ps I am 62 and dont own a ladder hahahaha
Hey there Justafall, I can relate to you completely. I had my TBI in 2008 and am now 9 stone heavier than I was then. For me it's been a lack of discipline - not being able to control myself when it comes to the sugary and fatty foods that I love. I've been desperately trying to lose the weight with a variety of commercial diets and I've failed for a variety of reasons. The one that worked best (though I then put the weight back on) is Slimming World. To be honest I'm now going down the surgery rote - a gastric sleeve that has around 80% success with people.
I hope you're able to find a way of stopping the weight gain - I wouldn't wish my situation on anybody. Thinking positive thoughts for you X
Yes I can sympathise. I left rehab about a stone heavier than before my encephalitis and although it is now 11 years on, I am now 3 stone heavier.
Covid didn’t help because it made me more sedentary, no swimming.I also blame some of the medication In now take but I’m battling on and hopefully this year may see some inroads.
I’ve bought new clothes for this summer and now feel better about myself cos I’m not squeezing into ones that highlight my weight.
I’m going out on Monday, after sorting through clothes today, to buy items in bigger sizes to make up a capsule wardrobe. You’re absolutely right, having nothing in your wardrobe that fits comfortably just makes us feel worse about ourselves. Since there doesn’t seem to be a quick answer then dressing the us that we are now seems sensible.
I’ve had difficulty making decisions since my tbi so I got myself a few clothes that mixed and matched when I got home so that I could grab anything and look and feel ok. Two stones heavier and I know that doing that again will at least remove the need for choice every day!
The prospect of being comfortable again is great. It’s not much to ask is it?
Good luck to you and thank you for taking time out to reply.
welcome to our world!! After my TBI went from 13 stone down to 5 whilst in hospital, coma. Left hospital back to 13. Adjustment,divorce & all y have said went up to 18 stone!! A bottle of wine a night didn’t help, cost me my gall bladder!! 20 years on lowest weight was 13.8, now 14. & on verge of diabetes!! No medication, other than inhalers. Hope this helped
sounds like you’ve had a roller coaster ride yet make time to reply to others. Thank you.
It makes me quite angry that I have to accept or battle weight gain after a year of working hard to work out who this new me is. I know I need to stop moaning and crack on.
time o your hands? Use it to redefine the new you, plan simple tasks. I hate to suggest what rattles me, make a list of todays jobs, tick them off as u do then?! Yeah, my reaction to being told this was u think I’m an idiot?!! Too!!! As resentful as u feel, it works!! Took me many years to accept it though!! I comfort ate, divorce & other reasons. Drank a bottle of wine a night to stop the brain from thinking on things!! This sound similar? Good news is once y done the above suggestions it will be easier to live with!! Never thought I would be glad to be emotionally numb?!!! Adapt to the new challenges, we are all here to support you, mainly because we’ve been there!! Use us to vent y frustrations? Oh and a very useful thing? SMILE to spite the tough bits!! Helps me daily, coffee, smoke etc, a way to cope with tough times, but remember. We are here for you?!!!! Good luck….& wipe that semi- smirk away!!!
Hi, I had my TBI in Nov 2022. I lost weight while in hospital after being in a coma, about 6kg lost. I eventually put some back on again and my weight kept going up and I had gone from 61kg before accident, 55kg after coma, 65kg after 3 months. I have also lost smell and taste in my food and drinks, althoughi know if something is sweet, salty, bitter or spicy it's horrible are times. I have changed my diet to having more fruit and veg, vegetable juice, vitamin B drinks, electrolyte drinks and limiting my fluid intake to 1.5 litres or 2 litres at max a day. I have managed to go to physio and she helped with balancing exercises to help my brain cope and some exercises to get my body back into being able to cope physically. It's 8 months and 3 weeks since the fall I had and I have managed to get back on track a little bit with weight. I'm currently at 61.8kg. Yes still a little bit more than I was before accident but not as heavy as I had gotten. I have tried to help myself cope with stress, anxiety build up, people's behaviour or what they think of me the way I am now. It is difficult to cope at times. It is difficult with the weight gain as it upset me a lot, but I think it was me being not as physically active, although I maybe wrong. I am on Thiamine tabs for rest of my life as it TBI that has caused my vitamin B1 deficiency. We are all different because of TBI in various ways, but we understand each other and will always offer help if we can. You are right we are amazing we are here so we should try our best and try and stay positive every day for at least a reason, I do anyway. Sending hugs to you, as I know I sometimes need them more. Be yourself, you can do this x
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