This is a very random question but I just wondered if anybody on here had become addicted to anything since having encephalitis and being unable to control it ?
I ask this because my mum who has encephalitis in April last year and was very poorly with it has developed an addiction to vaping excessively and also eating chocolate and sweet things all the time .
It doesn’t matter how much advice I give her , she won’t listen and it’s really affecting our relationship .. she can’t breath very well and recently had a blood test which indicated that her blood sugars were too high .. but still she continues .. I think it’s her way of dealing with everything but I am so worried about her health and feel very protective of her after what happened .
it’s as if she can’t listen to reasoning any more and doesn’t think of the consequences. She gets through about 2 disposable vapes a day ( each containing 600 puffs ) I mean surely that can’t be good for anybody.
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lw1990
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Hey there. I am sorry to hear about your mom's ongoing regulation issues. Unfortunately, this does happen after E, and I think food is a common one. In my case, I was dependent on fentanyl in and out of hospital (definitely didn't ask for any). I experienced severe withdrawal symptoms for weeks out of hospital. A few months later, I got a little addicted to sleeping pills (trazodone). Since then, I refuse nearly all medication options. I am on the cusp of addiction at any time. I am in constant pain, and I have severe movement and regulation problems, so painkillers (opiates) and sedatives (benzodiazepines) are always top of mind for me. With my family's help, I've been able to stay strong in the refusal. The thing is -- your mom might not be able to do that for herself right now.
You said, "it’s as if she can’t listen to reasoning any more and doesn’t think of the consequences"... that's exactly what's happening. It is unclear how much control she does or does not have over these decisions. Have you spoken with her neurologist about this? Maybe neuropsychologist with an addictions speciality?
Again, I'm so sorry you and your family are going through this. I hope my note helps a bit.
Hi kitnkaboodle thank you for getting back to me .
Since leaving rehabilitation, I don’t think my mum has a neurologist any more . Are they supposed to be in regular contact once you are discharged ? It is something I will definitely look into though . It seems if you need help you do have to go out and find it because nobody has contacted us .
Yes, she absolutely should be receiving follow-up care for the next several to many years from at least neurologist or neuro-immunologist with E or AE speciality, PT, OT, ST, PCP, and any other specialist or therapist she needs such as urologist, manual or massage therapist, optometrist/ophthalmologist, etc. Oftentimes, they do what they can for us, then drop us from the caseload. Fight like hell to get your mom the care she needs for as long as possible. Be the squeaky wheel, and don't expect doctors to follow up with you; contact them.
I’m sorry that you have to see your mum going through this. Really must be hard. But you say she isn’t listening. To be honest she may be but her brain is refusing to take it in. Our post E brains are interesting things and each one of us reacts differently. I know I put on 2 stone after E because I just wanted to eat all the time. Especially sweet things. Things I always avoided because I’ve never been good with dairy or too much fat. So what did I eat? Cream cakes. Ice cream. Chocolate. Biscuits and cheese. In my case I then gave myself a major stomach infection, ended up in hospital on a drip and now can’t eat any dairy. I lost the 2 stone mind and more!! My point is, I didn’t have anyone saying stop because my family were so pleased I was happy. Your mum has you so as Kitnkaboodle says, can you talk to someone like a GP or even an addiction specialist for help? I hope you get some help. Let us know.
Thank you Wygella . I am so happy that my mum is a lot better than she was . I guess I am also incredibly protective over her because I worry about her health more now than ever before . I will try and speak with somebody who hopefully can help her .. addictions are incredibly hard and if I’m honest I don’t think my mum wants to quit so that makes it every harder .
Good morning... As a caregiver I totally understand what you are going through. I agree with the others. It's not that my husband does not listening to reasoning... it's that he cannot remember and reason. We go through this all the time with his Dr. Pepper drink. I make up the Dr. Pepper gives him comfort. However when he drinks it in the evening he is up all night going to the bathroom and not getting the rest he needs. I explain how the Dr. Pepper keeps him up because of the sugar..... but then forgets. Yesterday he mentioned about putting up signs to help him to remember.
Most of all, please try to realize this issue is not personal. I need to remind myself everyday that my husband has a brain injury and there are certain areas in his life that are difficult for him to manage. Others he can manage just fine. The more I accept his limitations, the more patient I am with him.
My husband desire for sweets has increased since his illness. Fortunately it has not effected his blood sugar even when he was on prednisone.
Which is a good question... is your mother on prednisone? This does make the blood sugar count go up.
My husband was addicted to snuff and was able to get off during his stay in the hospital. Even though his body is not addicted to the snuff anymore his mind still tells him that he would like a dip everyday. I understand that any tobacco addiction is the hardest to stop.
It is so hard because with enc , you really don’t know how much a person is suffering and especially if they don’t like to talk about it .
I do think my mum uses vaping and eating as a comfort blanket .. something she feels unable to give up . I just keep having battles in my head between letting her do what she feels she needs to and trying to prevent her from getting very poorly again 😞 I feel like I nag her all the time and we used to always be so close .
I believe my mum has just recently come off the prednisone she was taking . She takes other medications still.
Hi lw, I'm saddened to hear of your situation. I've met many with addiction problems, usually alcohol and opiates. They never wanted to stop as their habit was a great comforter. With a situation involving Enc. and brain damage it should be seen as a trauma with resulting PTSD. Sufferers can't cope with the aftermath on their own. I like alcohol and have told my wife not to buy any - it's too easy to neck it down, and on my meds it could krill me.
My other like is biscuits and desserts - sugar is one of the few things that I can taste, along with bitter tastes. All foods taste the same to me and so do coffee and tea.
Your mum needs a distraction that she enjoys and that is healthy. I don't know what she likes to do, singing in a choir, swimming or dancing are great mood changers. When in hospital I used to walk up and down an empty corridor for an hour or two - exercise and a mood lifter.
Willpower and motivation are key. Reasoning doesn't really have much effect. I started to rely on morphine due to a severe back injury. Withdrawal wasn't too hard, a couple of sleepless nights with the jitters. But stopping anything is tough.
A good recovery from Enc is possible given a few years, I've improved a lot. The NHS have been a big help via my GP and several support nurses and doctors.
You are so right .. when my mum is busy doing something she enjoys , she is much more relaxed . The problem seems to be that when she is sitting down she doesn’t know what to do with herself anymore . She often asks my dad ‘ what are we doing now ‘ and is very agitated which of course does not help with her addictions . I’ve noticed that when we are out on a walk , she still has her vape in her hand the whole time . I have tried to take it off her at times but that never really works because it seems her brain is constantly reminding her that she ‘ needs ‘ it . It is very difficult but hopefully in time it will improve.
I just hope her health doesn’t deteriorate too much as a result . She has another blood test tomorrow testing for diabetes . I do feel as though more support should be out there . It’s as though once you are home and somebody is there to care for you , you are just expected to get in with it . I think PTSD is a huge part of it too.
I will try and find out what support is out there .
I had encephalitis the day after my first birthday. so I started learning
everything from the beginning.
I had traits of OCD when I was 5, it became more noticeable when I was 13, but it went undiagnosed
until I first became an adult. Then I was diagnosed with profound Obsessive Compulsive Disorder - OCD and it's extremely disabling. I know it's different, but it's 'similar' to addiction.
So, your mum has got a sweet tooth.
Hmm? Well I think I must have always had a sweet tooth when I was little. I have never liked anything sour. To be honest I was an extremely fussy eater when I was little in comparison to how I am now.
As people will know that children years and years ago used to get rewarded with sweets and chocolate for being good. I don't suppose it was healthy, but I do remember having a blood test and it showed my glucose levels were slightly high, so my mum at the time said I needed to cut down on sugar in my tea, so I agreed.
Although doing so, I didn't like the taste of my tea it wasn't sweet enough, but putting up with it for about a couple of months worked. I used to take two and a half sugars in my tea and I cut down to one and a half, so that worked. I felt OK, apart from not having much energy, but I could get on with life. In the last twenty years or so I have been using sweetener as a substitute and it tastes pretty much similar to sugar but it's more healthy plus better for my teeth. I have also substituted sweet things for fruit, being a pescatarian and it's more healthy than chocolate, sweets cakes or biscuits. If it's a special occasion then I do treat myself and stick to a certain number and then stop, because I think I might have been becoming a chocoholic at one time.
I wasn't anywhere near as severely affected as your mum.
My Mum was far too overprotective of me. I did used to listen to reasoning, once it was explained to me, but I never used to think of the consequences and/or even give them a thought like I do now. I'm much better with that now.
Is there a local CBT therapist in your area that might be able to help your mum? It sounds as though she might benefit from CBT.
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