Where were you 6 months post BI and where are you now regarding recovery?

[Sarbear123]

My husband is 6 months post anoxic BI. He’s come a long way but in other ways it seems he has so far to go. I know recovery is still ongoing but I’d love to hear some stories from you lovely people on the progress you have made.

[cat3]

Mine wasn't an anoxic injury ; it was a Subarachnoid haemorrhage in Dec 2011. But, despite each brain injury being unique, we all share so many similarities in the after-effects so, for what it's worth, I'll give you a rundown of my progress.

I've no recollection of the first two months after the bleed but I'm told I was very agitated and disruptive.

After discharge I had very poor mobility and balance, confusion, loss of dexterity and short term memory, severe headaches and emotional instability.

With perseverance and daily practice I increased my walking distance, and my concentration/memory issues were helped by online puzzles, card games and daily crosswords. Engaging on Headway with others dealing with similar symptoms helped alleviate the isolation and was a massive confidence booster.

I remember how looking back after 12 months was quite promising in terms of how far I'd progressed, and my progress reached an equilibrium at around the 3 year point.

But even now, 8 years on, I feel my speech & memory are improving. However I do still struggle with balance issues so walking's still not great, but I can walk to the shops & back and my driving's fine.

And my family have been SO supportive throughout by allowing me my precious independence but being there 24/7 if need be.

Your man still has a way to go Sar...... therefore plenty of scope for improvement in all areas. Best wishes to you both, Cat x

[Pairofboots]

Hi, as Cat3 says every brain injury is different. My story is less positive. My recovery arrested at three months. No rhyme or reason. Have never had an explanation as to why.

My hicup was January 2011. I was very positive, I was treated within an hour of onset, and thought a couple of weeks I'd be picking up where I left off. I revised this to a couple of months. As time passed improvement stopped, and I was diagnosed as having an incomplete recovery.

Things have deteriorated. I can still drive, but my mobility has steadily reduced. I wake up every day thinking either my brother or father is in the house, even if I dose it's the same. I don't know where that comes from it's been year's since I lived with them.

Don't relate this to your husband. I think if you put a hundred people in a room that have experienced a brain injury, you will have a hundred different stories, everyone will have some positive parts, probably the minority will have negative.

[cat3 in reply to Pairofboots]

How very odd. My mum always stayed on Christmas eve but never lived with me, yet even 8 years after my Bi, I still creep past the spare room if going to the loo in the night so as no to disturb her ; she's been dead for over 20 years.....

I'm otherwise perfectly sane ? ….but find it so intriguing ; even more so now I see I'm not alone with such thoughts. 🤔 x

[Pairofboots in reply to cat3]

I can't explain it my dad in effect left my brother and me get on with life from when I was about 12, it sounds worse than it really was. My mum had passed a year earlier, and I don't think any of us really dealt with the loss very well, so arm's length was probably best. But that is by the by.

My dad died after a major stroke about 30 year's ago, unfortunately it wasn't the stroke that got him in the end. My brother and me hadn't really kept good contact over the year's when we went our separate ways.

It is a very weird feeling, and it takes some time for me to realise that it's just me in the house. If I dose off, it's exactly the same. I have woken up and said " ok, ok, I'm moving" ( getting up, as a kid I could have got a gold medal for sleep).

It's nice to find someone else who experiences similar, I wonder if others experience similar?

[cat3 in reply to Pairofboots]

Yes I wonder. But it sounds as if you're still in the house where you lived with your parents ? …….which makes (a bit) more sense. My mum stayed at my childhood home 'til she died ; I live a couple of miles away.

I've never had these sensations in relation to my son or daughter who've both moved on, and the mum one only started after my Bi.

Strange how the subconscious can catch us unawares. Maybe brain injury makes us more susceptible to regression... 🥴 x

[Pairofboots in reply to cat3]

No cat3, I live far away from where I was brought up. My dad never saw where I live now, and my brother his only visited once in the six year's I have lived here.

It is only since I have lived here that my mental state has calmed. I don't, recall having these feelings previous to living here, and the feeling only started when I was in the house alone, even when I was married.

[cat3 in reply to Pairofboots]

Weirder and weirder...…

I see you've put feelers out on the forum ; it'll be interesting to see whether others have similar sensations. x

[Pairofboots in reply to cat3]

Yes, it has got me thinking, I was worried about citing you, but it added some weight to the post. X

[cat3 in reply to Pairofboots]

No problem…. x

PS.. think I might call you Poots if that's ok ? 🥴

[Pairofboots in reply to cat3]

You can call me anything as long as it ain't late for lunch 😂. It wouldn't let me use my actual nickname, you can use Poots, Boots, or just Ian. I've been called most name's in my time, many unmentionable, but that went with the territory 😉 x

[cat3 in reply to Pairofboots]

Ha ha ; think I might stick to Ian in that case ?

No response from others...….not surprising really. I was already pretty taken aback learning that one other person experiences similar cognitive blips ; it's made me feel slightly less weird ! 😏 x

[Pairofboots in reply to cat3]

I'm sure you aren't weird, at least no more than me. I'm sure others do have similar experiences, just a matter of time. Sleep well, night night x

[cat3 in reply to Pairofboots]

😐 x

[Pairofboots in reply to cat3]

😘x

[sospan]

As you would expect, mine is very different.

I had mine 12 days after my 50th birthday. At some point most of us discover medical professionals especially GP's don't understand Head Injuries.

I had one of these whom didn't know how to treat me. His advice for the first year was to essentially sit at home in a darkened room. Which, naturally set me on a downward path.

It was something like 6 months until I had a CT scan.

I can't remember what the trigger was but there was something that said, get off your butt and do things. It could have been the realisation that we weren't going to get any support, rehab etc. Anything to get me to improve we would have to find ourselves.

Because of the HI, one of the problems I had was poor balance and dizziness. Annoyingly, this the cause of me falling down the stairs, hitting my head, many times on the way down. So back to the start again

[leila65]

Hi its my son who has had a TBI and double craniotomy due to bleed on brain 6 months ago in Crete. First few weeks he was in induced coma and when he came out he was very confused.. Very adgitated.. Couldn't speak.. And weakness on one side which improved when we flew back to Salford and had physio. He got some speach back but was very difficult to understand and couldn't remember names at all though he knew some of us had no memory of what happened and still doesn't. His memory has improved a lot but he still gets confused with words and meaning. His speach and cognition are affected however he has made good progress and we are hopeful he will continue. He has only just been discharged so I'm still learning how much he can understand. He does 'pretend' to understand a lot (he is clever and is able to convince even some doctors at times.... He knows when to nod in the right places and contribute the odd contribution and often afterwards it's only when I ask him how much he understood he admits a lot of it he didn't! That said.... The improvement within 6 months has been remarkable and I thank my lucky stars each day that he is here and here is improving! He does suffer with regular headaches which can be awful when they strike however seem to be related to his mobility so he is learning what hurts and how not to move his head in certain ways. I pray this improves after they replace his missing skull with titanium plates. All in all he is young 26 and has a great chance to recover further. I have witnessed many who havent so I know we have much to be grateful for. It helps to share and hear how others cope and recover too.... In a community that really gets how challenging it can be. I hope your husband continues to recover like everyone says everyone's journey is so different! best of luck x

[sca2013]

I am now a little over 6 years post anoxic brain injury. My first 6 months seemed quite impossible as I so badly wanted to return to my life as I once knew it. When that didn't happen I got impatient, angry, upset and many other negative things. I finally started to accept that my old self and life was gone and was not coming back somewhere in the 3-4 year range. However I always looked to make each day better in some way than the day before. There were plenty of days I didn't succeed and many that I did. I've learned and created many compensating strategies to deal with many of the things I wanted to do. I also have come to accept there are certain things I just can no longer do, no matter what I try. It was about this same time 3-4 years post that I was able to change my thinking about wanting to die if I had to live this way. In creating the new me and my new life and accepting it as this is my life now, it really has helped me improve the quality of my life. I've done so many different therapies, most of which I could not tolerate do to sensory overload. However the ones I have had success with, long term, have been acupuncture, chiropractic, Safe and Sound Protocol, to name a few. Life is definitely different than anything I ever imagined and it is working for me. I think less about the things I can't do and focus more on what I can do and figuring our other ways to do things.

My latest occupational therapy, "Safe and Sound Protocol", has been one of the best. I have more vitality, am able to engage activity more and am more alert as to what is going on. If you're interested here are a couple of short youtube videos that explain the therapy. Looks like the links won't work. So you'll need to do a search on youtube for

Safe and Sound Protocol - What is It, and How Does it Work? 8 minutes

Scientific Explanation of the Safe and Sound Protocol (18 min)

I am very sorry you're both having to go through this. Wishing you both more better days ahead. If you have other questions, please feel free to ask me. As others have stated here, this is how its been for me, your husband's journey will probably be different. In some ways he may not do as well in other things he may make much better progress than I. I think the main thing is accepting what is and moving forward from there to create that new life.

[Sarbear123]

Thanks for the comprehensive reply! Can I ask what the SSP is helping you with specifically? My husband is lucky to not have too much sensory issues, mainly memory (short and long term) information processing and fatigue.

[AlmaMatters]

Hi 👋🏼 I’m nearly ten years post BI. AVM & SAH. I was in rehab hospital after it for six months where I learned to walk again etc. I was then discharged. I think I have made a slight improvement since that 6 mth period, looking back but nothing major. My affected area was mostly mobility in my left side. I can walk but it’s not great and I still have extremely limited use of my left arm/hand. I don’t think that’ll ever change but I knew that 6 months post injury too. We’re all different of course but I know only too well how it is to compare to others. It’s hard. Wishing you both all the very best x

[moo196]

I'm 5 and a bit years on from my brain illness (cvst Oct 2014).

Around 6 months in I was still quite angry and volatile with my moods. Remember screaming and crying at my adult son and sitting on the street in Central London. Was also fatigued so was sleeping 7pm to 7am. But persevered with a set routine which included working just 9 hours per week at that time and lots of repetitive yoga/walks/following recipes etc. Still didn't ever have any positive emotions at that stage. Nothing.... Took about a year to "find" happy. I had to go looking for it everywhere. It was really tough.

Didn't help that my partner of 18 years left me.

Now I've carved a new lifestyle for myself and a love for travelling. I've moved house, do things that I'd never thought of (ziplining, glacier walking etc) and joined lots of clubs etc. Love meeting new people and very involved in community work. I no longer care what others think about me. Particularly if I need to be in bed by 8pm or need a day's rest. Brain damage will not disappear. I just make the most of what I can do for myself and others.

All the best.

[sealiphone]

At the 6 month mark I was very much still in a daze, I could sit for hours "Day dreaming".

It was around the 12 month mark before I'd emerged and then the issue I began to identify was the feeling I wasn't the person I'd known for so many years, although people who didn't know me very well couldn't see it. In fact one Neurologist commented after a long meeting the he couldn't tell who had the brain injury, my wife or I, much to my amusement.

In fact he was wrong and it probably took around 3 years before I could make any sense of what was going on and another 6 years before it was validated by a Neuropsychologist.

I probably plateaued around the 3-4 year mark and now I still have difficulty in processing visual information and can experience acute fatigue, it's something you take in to account when planning what you do.

As for a different the me that took a long time but now it's who I am and the old me seems like a different person in a different alternative universe, a bit like Invasion Of The Body Snatchers. It really is a new skin you learn to accept, although you may need counselling.

[SaveSamStrider]

Hi! I am so happy to come across this feed!! My husband is just a bit over 6 months from an anoxic brain injury as well (7/30/19: bee sting, anaphylactic shock, blood pressure dropped just low enough for long enough to cause injury). As of now, he’s not oriented to place or time though it is very slowly getting better. While he’s having to relearn pretty much everything, the memory is the one part we haven’t seen a lot of improvement in. This past Saturday morning, he remembered going to an event Friday night but, after a couple hours, it was gone. Still I was so happy because he actually remembered it at all!! It’s also hard to tell exactly because he has aphasia and is still relearning how to talk.

Physically, he doing really well. We rarely use his wheelchair, he can feed himself as long as I help ‘load’ the utensil up, he’s almost on a regular level diet and about to love up from honey thick to nectar thick on liquids and he’s motivated and committed to working on his recovery. The original doctors told me the best we could hope for was minimally conscious/severely disabled so we are well passed that for which I am grateful. I just wish there was some way to get that memory going!! But, because of this thread, at least I know we’re not alone. Someone even responded that it was 12 months before they emerged! I know every brain injury is different but, man, I just really needed a little boost of hope today. THANK YOU!! And let’s stay in touch! I mean, anoxic and almost the same timeline?!?