has anyone here suffered from loss of appetite?
Not loss of taste but no interest at all in eating anything. I look after someone who is recovering. He was diagnosed 3 years ago. He’s off all meds now but has no interest in eating and he has lost loads of weight. We are getting tests done for a medical cause. Nothing yet.
I didn’t eat and lost a lot of weight in the acute phase of E. But it’s three years out for your friend—could depression (secondary to E) be contributing? Does he do his normal activities or things he enjoys?
Another guess is loss of taste and smell (common after E for at least some time) making eating less interesting ?? But oops, you said he didn’t lose taste hmmm
Thanks for replying. I’d be depressed if I’d gone through what he has but he says he’s not. He is weak and fatigued and doesn’t have any interest in anything. So I wonder..We’ve seen a dietitian who told him to eat more…. (I’ve been telling him the same for months. Maybe he’ll listen to someone with letters after their name). He just says he’s not hungry. He keeps a diary of what he says he’s eating but it’s a bit of a fantasy. We’ve been referred for tests in case there are any underlying causes. Watch this space.
I always laugh when doctors or anyone ask if I am depressed because of course I am—nearly all E patients feel that way. In my opinion, clinical depression on its own must occur without cause. E patients (and their caregivers) have plenty of cause to feel down. So much grief and loss and pain.
Does your friend feel sick after eating certain things? Like gluten, dairy, sugar, alcohol, and other inflammatory things.
Have his thyroid levels been tested?
he’s been tested for thyroid, coeliac, gluten etc. all negative/normal. The social worker used to ask him regularly if he was depressed, he always said no.. so she said there was nothing she could do and signed him off. I wanted him to see someone to talk to but because he said he wasn’t depressed she wouldn’t refer him. It reminds me of when he was sectioned, locked up. He was completely bonkers, on another planet. Psychotic doesn’t go far enough to describe what was going on. He saw a neurologist (before he was diagnosed). He was chained to a minder. He barely knew who he was. She asked him if he was having seizures (he was) he said no. She discharged him. You couldn’t make it up.
Ah man I get that. It’s crazy that medical professionals take everyone’s word at face value. E patients can sound lucid in one moment and then talk about “taking my piglets to Buckingham Palace” or “corralling the muffins” (I did that 🙈 and so much more). It’s unbelievable if you saw me in person, but my driver’s license was never officially revoked. If a patient is emphatic enough and sounds lucid enough, the docs will accept nearly anything. I always said I wasn’t depressed, then I answered honestly for the first time in an appointment the other day, and it resulted in the specialist treating me very differently and thinking that I have to see to the mental issues before addressing the physical. I’m thinking I should start lying again about that.
Difficult to know what to do. I hope everything works out for you. Best wishes.
Hi SE, Sorry to hear of your situation, enc is very unkind at times.
I haven't been able to taste anything since enc three or four years ago and have no appetite. I have to stick to snack portions, soups, sandwiches, salads and desserts. Sometimes I have wine and have been known to drink a whole bottle if allowed, silly on my meds, but hey who cares? Well I do when I'm sensible.
A normal meal is impossible, nutrient drinks are available on prescription, vitamin and mineral supplements are essential. Exercise will help to create an appetite, good home made food is tasty.
My wife helps by preparing nice food. I used to do all the cooking and got quite good. Now I can't cook because I don't know how it tastes. If we eat out I order soup and a dessert.
We try to walk every day but it's not been possible for a while since my last operation. - too tired. It takes a long time for anaesthetic to wear off when you are old- can be months. Keep busy on something.
You can exercise without leaving a bed. Just lift a leg up several times - it starts to get heavy. Same with arms and sit ups. 'Keep going' is the motto. Brain exercise is good, Scrabble, patience, dominos, crosswords - always taking care that it is fun.
Enc takes time to heal and some parts will never come back it seems. It could be worse, I could be in a N. Korean prison on false charges - haha.
Take care my dear and God Bless. G2
Hi G2, nice to hear from you. My friend lives alone, he has carers twice a day. They only have half an hour so good home cooked food is not possible. I buy good quality ready meals for him from an online supplier. They are ok, not great. I try to buy him things he likes but he’s not really interested. He’s so fatigued he can barely walk so not much exercise is possible to build up an appetite. Hey ho. We soldier on. Hope you are ok. Take care and best wishes.
Hi SE, thank you for your reply. Your friend said he is not depressed but from your description it sounds like he is. The effects of Enc include many things, depression, fatigue, anxiety, sleepiness, sleepfulness and others. All these are on the web with MIND and the NHS etc. This info can help you to know what to expect.
I had forgotten how to walk when I came around and learnt pretty quickly walking round the ward. Life at home without the 24hr support can be pretty daunting. He has to exercise but what will motivate him is the problem. We have a litter picker stick from EBay and this gives us an excuse to go out.
When I was discharged I was exhausted and didn't recognise my house, didn't know I was married and looked at a stranger in the mirror. I walked to the end of the street and then spent two days in bed recovering. We went a little further and then further still. Now I can walk five or so miles in the countryside but walking in town is scary. But we keep going and things improve.
Whether he will cope and progress I don't know. Anti-depressants will help as long as he still feels in control and not at the mercy of the Fates. Reading helps me and researching history and other things on the web. He still has a lot to offer the World, a pet dog or cat may help him rediscover some things ..... I'm a bit tired now, it's 10:30pm here in Leeds, I'll have to bail out. Best of Luck and Best Wishes, G2
Yes, after surviving E, I totally lost my appetite. My family had to prompt me when it was time to eat. With my poor memory too, I used to write a diary throughout the day of what I had eaten to try to ensure a balanced diet. I'm now 17 years down the line and luckily my appetite has improved a heck of a lot. But even then I'm still not sure if I'm eating enough. I'm much skinnier now than I was pre-e (hmmm...🤔 is that a blessing in disguise?!? )
Hi,
English isn’t my first language so sorry in advance for any grammar or spelling mistakes.
I can relate to your friend as I would just “forget” to eat. It lasted up to 4 years after the acute phase.
It’s hard to describe really.
I don’t think that I really lost appetite. I lived with my family so at dinner time, I would eat with everyone. Smaller portions than I used to but still.
If it makes sense to anyone, it was just part of the overall the loss of touch with my “self”.
At my worst, I wouldn’t feel the need to eat unless I felt really weak at which point I would realize that I had not been eating for maybe one day or two ( happened when family were working and/or eating outside). Then I would regain energy and the brain fog would lessen ( mind you, I would have stomachaches from eating on a empty stomach…) .
But I didn’t feel hunger.
I was depressed but by it’s very nature, encephalitis had altered my cognition in such a manner that I wasn’t conscious of my own existence as I used to, let alone my mental state.
My GP had prescribed some medicine for my anxiety (didn’t want to take antidepressants) and when the symptoms alleviated a bit, what helped me was setting up habits.
I would have an alarm set for every single meal and most importantly, I would proudly report to my sister about what I had eaten, as part of my daily or weekly accomplishments.
We tend to minimize the amount of work we have to put in to relearn basic skills. Maybe because it’s mentally emotionally and physically draining. I mean, I felt like an adult trapped in a toddler body for such a long time….
I’ve been having at least two meals a day for the last two years and even manage to have three meals and a snack these days.
I’m so proud of myself.
Your English is perfect. This is all very interesting. My friend lives alone. He has carers twice a day. If he didn’t have them he wouldn’t eat anything. He just says he’s not hungry. Not even for sweet things and he used to love those. I hope, like you, that this resolves gradually. If not then I don’t know.. we have seen a doctor about it and they are doing tests etc. we’ll see. Thank you for replying. You’ve been very helpful.
Hey SandalE – I don’t think there’s an easy answer to this. I hope the person you’re looking after is able to explain how he’s really feeling deep down otherwise we can only guess what’s best. Personally, I watched at hospital as people around me ate their meals but I wasn’t allowed to eat as I couldn’t swallow properly – eventually I was given a PEG to put liquid versions of nutrition directly into my stomach! I don’t have any sense of smell now so my sense of taste is minimal but I was such a food fan before having encephalitis, and spent so long just watching people eat around me, I couldn’t wait to get back to eating anything! (This year I’ve been getting back into cooking, although the taste-tester has to be every_cloud as I never was, and am definitely not now, a fussy eater!)
I know some people post-encephalitis gain weight while others loose weight – I’m in the latter camp. All sorts of theories on this – I guess it really depends on how much energy you have post-encephalitis as well as the diet, drugs you’re on and general interest in food.
Not sure I’m helping at all here but wishing you the best! Hope there’s a solution somewhere.
Hi there, thanks for replying. It’s tricky. We’ve seen doctors, dieticians, he’s had tests to check for underlying conditions, nothing yet. He just won’t eat. Says he’s not hungry, end of. It’s like he’s got a death wish. Maybe he has, but he says not. The social worker dismissed him because he just kept telling her he wasn’t’t depressed. She said there was nothing she could do. I think he is depressed. We’ll plod on.
All I can add is that – and I think I’m speaking for many post-encephalitis people here – it’s hard to explain exactly how you feel ‘after’ encephalitis. I don’t think anyone has perfect words for the feelings!
Personally, I did find that just mild anti-depressants worked (and still do, although looking to reduce) and just admitting that I had a problem, that I didn’t feel right. Just admitting to it is more than half the battle I think.
