Hi 5 weeks ago my 39 year old boyfriend suffered a massive intracerebral haemorrhage on the front right side of his brain. He was given a craniotomy to remove the bleed. He was in icu for 3 weeks and in an induced coma for 2 of those. He was given a less than 50% chance of survival. The doctors believe that it was caused by severely high blood pressure that we wasn’t aware he had. Before this he was extremely fit and healthy. He was given a tracheostomy but that was removed 2 weeks ago. Since having that removed he has become more responsive to us & is trying to talk. He still hasn’t moved the left side of his body. Most of the time we can’t make out what he’s trying to say but the odd word does come through. Everyday he does seem to be getting stronger & improving.
He has good days and then bad days. Recently he has become extremely agitated. Due to the fact his swallow isn’t 100% safe yet he still requires an NG tube to feed him and he keeps pulling it out. He also keeps pulling his IV tubes out of his foot. The doctors suggested we try him on puddings such as custard as they feel his agitation and low mood could be because he’s hungry and he’s not satisfied and as he won’t let them get near him again to put the NG tube back in they are trying to meet him at a happy medium. But now he is not allowing any of his obs to be taken and is refusing his meds and puddings.
Last week he was all smiles, signing I love you to me and really engaging with us but now these last few days he’s pushing the ipad away and doesn’t want to speak to us and gets extremely aggressive with the nurses when they try. He even spat at the iPad and tried kicking it with his right foot yesterday 😔 This is really out of character for him.
I was just wondering if anyone has experienced this behaviour with one of their loved ones going through something similar before? I understand that it is still really early days and it isn’t to be taken personally as he has been through such a traumatic experience but it’s just so hard to see him like this and to see him so frustrated. I feel so sorry for him and just want to do everything I can to help him. If anyone has any advice for me and can help me to help him then I will be extremely great full. Thank you.
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GABMX
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I only had the coma, cognitive element and a 1% chance of survival, what followed over a number of weeks included hallucinations and incredibly frighting experiences but even my wife hadn't been told I was on a very high dose of Morphine.
The not knowing apparently caused the psychotic episodes but others have told me knowledge led to a very pleasurable experience, just a possibility.
Thank you for the reply. I will ask the doctor if he is on morphine. As far as I’m aware he is just on paracetamol for the pain but this could have changed. X
As I say I wasn't aware and I'd be surprised if it was only paracetamol, I was discharged with a 2 months supply of Morphine tablets and a few other people have told me about their Morphine experience.
I forgot to say one episode involved me trying to escape, being held down by five nurses and being sedated and they still didn't mention Morphine, derrr.
Well I was informed last night he had to have hospital security to come and watch him as he kept trying to stand and falling and wouldn’t listen so he was a risk to himself. Will deffo be asking the doc about morphine at our next meeting. Thank you x
I totally understand your feeling, totally out the blue with my husband. My husband had to have restraints and boxing glove cushions on hands when he came round. I was told to take our 14yr old to say good bye but wasnt allowed to take 2yr old which i understand. On life support he contracted chest infection and when physio intervened they had to use defibilator which stayed in his room further 2 days. But coming round is a scarey process with pulling tubes/wires out and trying to fight, bite at everyone including at me. I passed out 3x when he come round and physical behaviour was horrific.
Were be 12wks tomorrow i talk about his journey, every time i think he got it, but everytime its actually first hes heard of it. They dont know, the brain is figuring out what the hell is going on. He also doesnt remember when he was on ward put on DOLS but remembers his activities constantly escaping and police involved.
He came home not even meeting cognitive baseline assessment, but I feel him obsconding worked in my favour getting him home. Its been tough, your husband might have Post Traumatic Amnesia Brain Injury, my husband still shows traites and 12wks home tomorrow. He presents stroke symptoms with fatigue, weaken face, slurred speech, left side of body weak, has memory difficulties and word finding difficulties, and behaviour difficulties.
We are receiving our 3rd home visit thus thursday. I was left to dry due to virus he was meant to receive 3x visits per week we didnt receive nothing.
Just keep speaking to your partner, i sang our songs. Just hold his hand, ges in there somewhere, fighting what ever is happening. Stay positive infront of him,.
This is all new to me aswell, only from Headway nurse i knew about this site.
It’s so comforting reading that someone understands. I think I would be exactly the same & pass out with the worry if I was allowed to be there with him.
I will have a look into the post traumatic amnesia - thank you.
I can not believe your husband hasn’t received the home visits that he’s entitled to - I’m so sorry to hear that. I’m glad he is home with you now though, I can not wait until we are at that stage - I miss him so much.
The fact that my boyfriend refuses to FaceTime me at the minute makes it so hard as we are still not allowed in the hospital to see him because of the current situation in the world right now- it just makes all of this so much harder to deal with.
Did your husband have movement in his left side when he first woke up? I’m so worried that mine won’t regain the use in his - fingers crossed for him x
He wouldnt stop moving thrn after 3 days thats when aggression kicked in, and couldnt give eye contact, his eyes were like rolling in his head . On ITU i was allowed to visit for one hour, then again on ward, until proper lockdown with nhs guidelines.
I cried /howled every day when he was in hospital its bizzare emotion, and now on complete autopilot meeting his 24/7care and 2kids solo.
Its horrible, living nightmare, no emotions can really explain it. I just stayed positive, grin and bare every day then cry away from him
Bless you. You sound like your doing an amazing job 💗
I feel exactly the same like I can’t explain how I’m feeling it’s a Mixture of scared and anxious with so much sorrow for him. I just feel so sorry for him and that this is happening to him and I can’t help him.
My bf does that with his eyes too and very rarely keeps eye contact with me for longer than a few seconds. He did today blow me a kiss and didn’t push the iPad away as quick which was nice as I’ve been such an emotional wreck these last few days ❤️
I learned a few months after a haemorrhage (also high BP) how disturbing my behaviour had been in the early weeks. My family feared I'd had a permanent personality change as I swore and talked gobbledegook constantly. I pulled out my tubes in agitation forcing staff to bind my hands like footballs, and I thought my daughter was a neighbour.
It was really upsetting knowing what an ordeal it had been for my family seeing me so out of control and out of character. But 6 months later I took cards & chocolates for the specialist nurses as a thankyou and apology, and was assured that my behaviour had been mild compared to some and that some of my comments had been 'hilarious' !
Hang in there ; your boyfriend's brain is struggling day-to-day to make sense of an unfamiliar world since the impairment of the bleed, not to mention the constant pain.
He'll need many more weeks before orientation can kick in. Meantime your presence will be a massive reassurance. My son massaged my hands to calm my agitation ; physical contact can be SO comforting. Stay strong by looking after yourself too !
Look forward to updates of further progress m'dear. All best wishes m'dear, Cat x 🌷
Thank you so much for your reply. It’s so reassuring to read your post and to see that you have come through this. I also have been so worried that his personality will change and that he won’t love me anymore😔 I know that sounds so pathetic and it isn’t about me at all it’s all about him and what he’s going through but it is just so worrying. He’s such an amazing person and I don’t want him to change. My anxiety has literally been through the roof! I just wish the restrictions would be lifted at the hospital so that I can go and be there with him. I keep reading so much that familiar faces and like you said physical contact can help him through this. Thank you so much for your reply, lots of love to you xx
It actually is about you GABMX. We're nothing if we're not important to others......
I've no recollection of anything after passing out in my bedroom, until weeks later in hospital when someone was asking did I know my name and where I was etc., So whilst my family were frantic with worry it seems I had the easy part !
I witnessed my mother going through similar emotional episodes while her brain was adjusting after a stroke. She was on meds to try and calm her, but they did not always work. One moment she was great, then she'd get really, really angry - and nasty too. She was like two different people.
When she was discharged having recovered well enough to leave hospital, she could not remember any of it. Not one single thing - and there wasn't a trace of nastiness remaining.
I think that when catastrophic brain events happen and we wind up in hospital, it's always bad for those who can only stand and watch. Watchers see everything, hear everything, remember everything and try to process it all and make sense of what they're seeing. It's frightening. The patient, on the other hand, is either doing stuff, being done unto or out of it so completely that they might as well be in orbit. The brain cannot process what is going on, so instinct kicks in. Instinctive behaviour can seem irrational at best and violent at worst.
You may well find that your boyfriend won't remember anything about the events that upset you. Even if he's not on strong drugs, his injured brain will most likely send his mind to all sorts of interesting places while it's busily sorting itself out and finding new pathways to get some bodily communications up and running again. Doctors have probably already told you that they don't really understand exactly how the re-wiring process works, but it does. Somehow.
Your best bet, I think, is to go with the flow. One hour at a time. Don't get het up and worried. Your boyfriend is on the biggest trip imaginable. The medics won't let him come to harm; they'll get fluids and food into him somehow. He's as safe as he can be given the circumstances.
As for behaviour, expect the unexpected. Just hang on in there. You're doing fine.
Thank you so much for your reply. This really is the most frightening experience I have ever been through. The psychiatrist has mentioned his meds and said that maybe changing them could improve his mood so they are now looking into this.
It is a comfort to read that your mother couldn’t remember all of what had happened or her behaviour when she was well again as I’m sure that my bf would be really embarrassed and upset about his as it’s all so out of character for him and I’d hate for him to feel like that after everything he has already gone through. We have a meeting arranged to discuss the next steps for him regarding nutrition as he has lost so much weight these last few days so fingers crossed they get him sorted soon. Today he has calmed down a lot and has had a good day ❤️ thank you for your kind words of support xx
Hi - after my husband suffered 6 cardiac arrests 4 yrats ago within an hour of a heart attack, was in ICU for a couple of weeks and was given a low chance of survival beyond vegetative state he slowly came to. For a week or two he was very agitated and aggressive, swearing etc but the neurologist said this was normal for brain injury patients. I am happy to say that 4 years on and after rehab he is doing sufficiently well for us to travel*obviously not right now!). He cant read properly or write and unfortunately he had a stroke during lockdown but things are improving.
I am telling you all this because the brain takes time to heal and I suspect a younger person would have a good chance to get quite well again. It is tough going and requires a lot of patience-but believe me there is often light at the ed of an awfully long tunnel
Thank you so much x I hope your husband is recovering well from his recent stroke.
Lots of people have told me it’s going to be a long road to recovery and at first I didn’t really understand what they had meant but now as the days and weeks are going by and we are having good days and then having set backs with bad days I really can see this now and your right a lot of patience is required. Sending u lots of love x
And one more thing to add -at the beginning it felt as if his brain was like a filing cabinet that had tipped over with everything jumbled up. He still has trouble naming objects and so on but I can have an intelligent conversation about politics with him -sounds weird but true. Hang in there and best of luck!
I am glad you are finding the comments helpful. When this stuff first happens you always feel you are the only one going through this and the doctors often paint a grim scenario. I took a lot of comfort from the stories of others at the beginning.
All I can say is each brain is different but it was an amazing ability to find new pathways for many years.
But importantly -look after yourself as well. This stuff can be awfully draining...
I was reading everyone’s replies I forgot what you said at the start.
I was hit by a car going 60mph that hit me on the pavement and carried me for 1/2 a mile before a passenger tapped the driver on the shoulder and pointed to me, where he slammed on the brakes sending me flying.
With severe brain damage attention span of a 7 year, short term memory, confusion very easily, temper, no concept of time etc. With damage to the front right side and back of brain. And shattered all limbs excerpt one, punctured lung, eye disconnecting from brain that happened a few years ago now.
I pulled tubes out and tried with tracki where they my brother in law saying it’s for your own good, where I thought there was a conspiracy going on. I thought I was Russia, then a Miami Hospital. You do hear everything in a coma.
Tramadol still makes me bad tempered. But fades painful bad migraines.(He May be). Morpheme chilled me out more than temper and helps bone pain that Makes memory worse but that’s not permanent. It did this with my dad as well. Slurred speech is a pain in the ass to get rid of, but cones back when I think to much. I started doing eh ee eye ohh you flexing face. That helped.
After coma I got very bad tempered because you can’t do anything. I had casts, metal work and bandages holding alsorts in place and not remembering makes all worse.
I called a friend 36 times they had missed calls in one day because I’d call, forget, call, forget, oh I hadn’t spoken to, called again. I thought I was still going out with my ex who’d I split up with 2 years earlier. That was confusing. I’d only speak to friends I’d known as a teenager or younger because I couldn’t remember anyone after then. I’m now stuck in 1998. That’s a year I clearly remember that helps me associate with daily living.
May sound cruel but he needs to be in hospital as long as he can be, because if he is out early and has my memory. You will wish he stayed in there to get as well as possible. Only take him out when the neuro Surgeon is happy, and not the nurses. My sister said she’d look after me, I didn’t see her for dust. Try and treat him like a teenager. That’s where his memory recall maybe best for him. So will get a huff on easily.
Find out when they pump which medication into him and call at different times. Mood maybe better and memory. Don’t start eating custard. I lost 3 stone in hospital after 3 months on a drip. Then tramadol everything tastes horrible. Try on any diet drinks, the shop in the hospital maybe nice and drop of a few for him to sample.
I loved water but hated hospital water.
I put weight on quick leaving hospital because the medication gives you the munchies like crazy after.
Tramadol my appetite goes.
Someone mentioned a memory that sounded a little similar.. My memory is like central library in Manchester that’s a big circular library with reception in the middle. All book names and reference has been removed so changing a subject I have to walk back to reception ask, they look up and I have to walk to the section, so takes me a minute or two to find the place in my brain then I can chat on the subject. But when the subject changes, it takes me another two minutes to find the places in my brain to chat again.
Find key dates in his memory from a teen and see how recent he can come to. If you know where it stops, you know the problem. This made my temper bad when people change subjects or talk together. I think he will be wound up he can’t use one side of his body, that I was worried about.
Here’s what I’ve taken to help me. It makes sense to me.
Garlic thins out the blood in the body.cinnarizine is an anti dizziness medication but it’s key job is to let more blood into the brain stopping calcium, that I think has helped me a lot over the years where I can do this reply to you. See if this can be added to his diet or meds that do similar.
He may forget there’s a virus and think people can’t be bothered, but then forgets.
If I come across as an arse, I apologize, I’m trying to help a little. If it does help mention back. He might hate computers now like I do.
Best of luck.
Don’t let him see you sad or upset, be upbeat & happy reminding him how madly in love with you he is. Everyone told me I owed them money having a laugh.
Still very early days.
Brain needs to rewire and make new connection to the old memory that’s there.
Hi all just wanted to give you all an update as I appreciated you all so much in helping me through some worrying days last week. I hope you and your loved ones are all doing well ❤️
My boyfriend has come on so good this past week 😊 he still has good days and bad days which is to be expected but his agitation has improved no end. He is engaging more with us all and he is listening to the doctors and taking his meds and eating his yogurts regularly. At one point he hadn’t eaten for nearly 7 days with no nutrition or anything. He kept pulling his NG tubes out and his IV’s all in frustration. His swallow wasn’t 100% safe so he lost so much weight and we were so worried he wasn’t getting his meds into him and another bleed or seizure would happen. We arranged a meeting with the doctors to make the decision whether to insert a PEG tube into his stomach. We all agreed that this along with still trying him on the yoghurts would be the best for him as this will give him his nutrition as well as satisfy his cravings & improve his low mood. We knew this would be a risk because his swallow still wasn’t safe and could cause aspiration but because he loves his food so much we thought it would be best for him. Well, this has now been put on the back burner as he’s communicating with us more and is now we think understanding the importance of why he needs the meds and food so is taking them regularly and last night he FaceTimed me to show me he was eating chocolate cake! He was loving life 🙊 I was so shocked at how quickly this had all suddenly changed and he was now allowed soft solid food but I was so proud of him none the less. I must admit my anxiety was through the roof whilst watching him chew and swallow it all but he did good. It’s crazy how such small things can make you so happy when your watching someone you love on their recovery. ❤️
We are now 7 weeks into our journey tomorrow and this last week I have seen such an improvement in him. Don’t get me wrong he still has a long way to go but all of these little things he is doing just amaze me. It feels like everyday I can see a little difference in him even if it’s just a little bit more colour in his face or him reaching to get the remote to ask to have the tv turned over or the words being a little bit more clearer when he’s trying to speak to me. The strength and determination in him and all of you guys that have gone through something similar is just astounding. ❤️
I think I mentioned last time that he hadn’t moved his left side but he has now moved his left leg which made me so so happy for him. He even showed off and stood up on his own for me on FaceTime a few days ago! 😊 we still haven’t seen him move his left arm just yet and he keeps indicating to us that it’s causing him pain but The doctors informed me He is on paracetamol for this.
As I said earlier he does have good days and bad days. Some days he gets really confused and doesn’t understand why he’s in the hospital and he gets so frustrated but his agitation has improved so much. He just ignores me now rather than lashing out or swearing. He will turn his head away from the iPad or just put it down on me or occasionally given me the two fingers 🙈 This is so much easier to deal with though than seeing him so angry and distressed like he was before.
I think all in all he’s doing well. Understandably he’s getting really fed up and bored as He’s usually such an active person and he’s getting so frustrated not being able to do what he wants by himself but I think he’s doing well considering what’s happened to him and what he’s going through ❤️
I know what you’re going through, my husband had an hypoxic brain injury a year ago and he was completely out it it for months after. But now he’s back at work and we still see improvements every month!
Feel free to message me, it can be lonely supporting someone through a brain injury because so few people know what your going through.
Hi so sorry for the late reply. I hope you and all of your loved ones are doing well ❤️ My boyfriend has come on so much since the last time I posted an update. It will be 13 weeks tomorrow since his Brain haemorrhage happened. He is now on a neuro rehab ward and we have been advised that he will stay there for approximately another 4-6 months. He is now eating everything and anything 🙊 so his swallow is now 100% safe. His agitation has passed and he takes all of his medication for himself and listens to the dr and nurses advice and is able to communicate with them and make his own decisions.
His speech is impaired and does require speech and language therapy but when he talks slowly you can understand what he is trying to say. He has managed to take a few steps and can now move his left leg and foot😊 for the next 4 weeks the physio are working on him putting weight on his left leg and working on the tone of his muscles and teaching him to not rely on his right ‘good’ leg before they get him to take any more steps. He has shown movement in his left shoulder but not in the left elbow or wrist or hand. he has had Botox in his left arm and leg to help relax the muscles. His biggest problem at the minute is his constant urge to go for a wee and the pain it causes him when he does. He says it’s all day and all night. He doesn’t have any infections and all scans and tests they have done have come back ok. The drs are now trying him on a drug which helps to stop the urge to wee so frequently so fingers crossed this works for him. the constant Need to go to the toilet and the constant dribbling of wee and being wet frustrates him so much and he can’t concentrate on anything else which the professionals are telling me is restricting his improvement and recovery in all the therapies he is receiving. Has anyone else been through anything similar? I just wish there was something I could do to help him and that this would get better for him so he isn’t in so much pain and then he can focus on the therapy. Overall I think he is doing really well. He still has a long road ahead of him and he does have good and bad days which is understandable but he’s getting there ❤️❤️ xx
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Progress meeting for my brother 19 month after tbi
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Will he be the same?
