Hi, I was just wondering if anyone has actually managed to combat or cure the dreaded brain fog and horrible fatigue. I’m 5 years post a brain haemorrhage and although it so so much better, less frequent and less intense, it’s still so debilitating. Trying to get on with things for as best I can but it’s still so difficult sometimes.
It’s just the most awful nauseous haze, which I’m sure you all can relate to. But is there any way to get rid of it or even know what it is??? Iv asked doctors and neurologists...
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ErinSAH
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Hi Erin. I've hesitated in replying as, from me, it isn't good news. But then I thought perhaps there'll be some comfort for you in knowing that, at least, you're not having an unusual issue. I'm 6 years on and still have the 'dreaded fog' (perfect analogy). Some days are worse than others but it's a constant 'companion', just like the lack of balance and the tinnitus !
And it isn't only me ; others complain of this, with descriptions like 'fuzzy head' and 'Head full of cotton wool' etc. So it's not an unusual symptom that you need to worry about, but I understand how soul destroying these issues can be day in/day out.........
Just one question ; what medication, if any, are you taking ?
Hi Cat, thank you for replying, it does help that I have other people who can relate to me. Just had a particularly bad week or so with it. I know it’s gotten much better over time but it’s definitely the part I struggle with the most. And everyone just thinks I look fine when I’m really struggling. I try stay so positive, and I know when it’s over I come out stronger, but my god it’s awful when you’re in it. I seem to just loose weeks to a blurry haze. Does this happen too?? All my symptoms become worse and everything is so much more difficult to handle, just stay away from everyone as much as I can.
Yes Erin, I've found myself withdrawing more & more and avoiding social situations. I spend each Tuesday at my sister-in-law's since my brother died and we've become close, so it's become a firm routine. I love seeing her but it's becoming exhausting and, after driving home, I just fall into bed. But I need that commitment, otherwise I'd become a recluse !
I make myself walk out to the shops most days, and when I bump into neighbours I'm all smiles & chat. And yes it hurts that we have these little secrets, when we really want a massive cuddle and a 'There..There'.................... But I know I do everything to look ok so others really aren't to blame if I contradict myself.
And missing days/weeks is all part of the syndrome for sure ! But I do have a whole heap of medications each day, so I assume that might play a part in the issue...........?
I was taking verapamil for my headaches but after an appointment with a neurologist he decided to try propranolol. I couldn’t get an appointment with my doctor to take it under supervision with any ease, so I kinda gave up on medication. I don’t take any now except for painkillers. And I really try not to take too much.
I did manage to go back to work but 3 years ago I decided to give up my job to study further, something iv always wanted to do. I think I’m doing well, then the fog hits and I’m gone for over a week. But like you said, we pick ourselves up, dust ourselves off, look like nothings happened and try carry on. It’s an exhausting roundabout sometimes, but lovely to offload to people who understand, thank you 😊
I use frankincense essential oil quite often because I have read a number of times from various websites about how good frankincense is for the brain as it sends oxygen to the brain. Oxygen is what the brain needs in order to heal. Those with hypoxic brain injuries have had a lack of oxygen to the brain.
I am an artist and years ago I used to do an hour to 3 hours of drawing and afterwards my head would feel really thick (like someone had poured concrete into my skull), I would feel tired and my right hand would hurt (I have a slight right sided paralysis).
After reading about frankincense essential oil I got some right away and all I did at first was inhale it right from the bottle.
It has helped me out and I will never stop using it.
I am also connected to a charity called Brain Tumour Support and a lady there once agreed with me that frankincense is marvellous stuff,
I had a cognitive course through my Headway a few years ago and our current manager told a couple of stories of how one man with a brain injury helped treat his injury via some sort of oxygen therapy. Another man with a brain injury used to watch a lot of comedies which made him laugh a lot and this helped treat his injury too. Like they say "Laughter is the best medicine" and that guy proved it.
I'm high functioning but fatigue which is my biggest issue anyway is still very much present, I have found that if I manage what I have better, ie not too much in a day and make sure i do get sleep etc. then it does improve! does make life less spontaneous but more functional.
Hi ErinSAH. Yes I get it too, almost 4yrs post TBI midline shift. The professionals around me tell me that 'it's anxiety'... erm, no. What did your medics say? You are doing amazingly well getting back into education. Maybe you are pushing your new self too hard though. For me I think it comes on when I have to think quickly/deeply/pretty much at all really. No noise, no people, no rushing, and realising when Im flagging, pacing, these are my 'best tips' for the cotton wool heads. Good luck and I've so much admiration for the effort you're putting in. Take care of You xx
Hi Trish, the neurologist said I was medically recovered but suffered migraines, I kinda felt the headaches were a bit more than migraines and told me to try beta blocker. I had been on verapamil, a calcium channel blocker for about 2 years, I think it helped but I’m not even sure really. But was on a high dose.
I’m coming to the end of my studies and I know stress and thinking too much like you said is a factor too.
I know I’m pushing myself but I would hate to give up.
Thanks for your tips, you might be right, I probably just need to slow down a while so my brain can catch up a bit.
Hiya Erin, I assume that is your name, although not too sure cos U haven't let us know anything about yourself ;o( sorry, bit of a bug bare wi me cos so many people don't let anybody know anything about themselves, so a brief intro would be great if U are able t do so ;o)
Anyway as I was saying & keep trying to convince Cat, what makes a massive difference to me, I have a 20minute every afternoon which nearly always does the trick, but if I do start t go foggy a bit later, I have another 20minutes.
It really does make the world of difference. But make sure U set an alarm for 20minutes, cos after about 26 mins apparently, U go into a second deeper stage of sleep.
Certainly worked for me & many others who have tried it on here !!!
After 20 minutes if U don't feel fully refreshed & want another 20 minutes set your alarm & have 20 more. Thing is if U do get up, you will feel refreshed, but I know it can be difficult ;o)
Anyway, hope U give it a go & let everyone know your experience & how brilliant it is (especially Cat ;o)
I had a subarachnoid brain haemorrhage 5 years ago in my late 20s and iv been trying to piece myself together ever since. I spent a month in hospital, they found no aneurism. I did manage after about a year to get back to work full time but was very difficult. Before my BI I was working full time and studying part time but couldn’t do that now... so I decided just over 3 years ago to give up my job, move and study full time. Looking back now I was probably crazy but it was something I always wanted to do, so I just did it.
Iv been in and out of fog, fatigue and headaches ever since. Iv just had a bad one, just on the way out of it. It’s awful when I’m in it, just makes me question everything.
I really like the idea of a nap though, and I didn’t know about the 20 minuets, I’ll give it a try and let you know.
Forgot t say Erin, don't worry if U don't fall asleep, as long as U have your eyes closed & U relax fully. I even continue a conversation for the first few minutes if I don't actually ' go ' for a nap & am having my 20minutes in the car or in the front room or something ;o)
Ex.....CUSE me Stace but I've been quite diligent in the 20min regime since we last talked (might've missed the odd day) and I can honestly say it helps with energy level but the fog is here to stay I think. If only we understood the physiology behind it.......?? xx
Yeh the fog is unlike anything I’ve experienced before my brain haemorrhage. Nothing can get rid of it except just waiting. Iv no idea what it is, and no doctor or neurologist could tell me.
One thing I have noticed with it is, I find I might be struggling with something before it happens, then the fog hits. But when it’s over I always come out better and a bit stronger, like something has clicked and makes sense again. Or maybe I’m just so happy to be out of it and not so I’ll, haha
I thought I replied to this Cat. I was only saying it in a light hearted way as I hope is the way U took it & your response is also light.
By the fog, I'm told my eyes glaze over & am unable to fully concentrate on things, which is what I assumed U meant.
Obviously BI is caused by different things, so although there are distinct similarities, we are all going to experience things slightly different I'm sure, but by having my 20minutes seems t clear this for me completely & I'm able t function normally again.
So I assume U are finding 20 minutes beneficial then Cat ???
Oh good grief ; of course it was lighthearted Stace ...........but checking back I can see my reply might look a bit haughty ; it's just my warped humour !
I do the 20 min thing once or twice a day (might be 15min or an hour depending on need) and it really does provide a re-boot and a brief escape from symptoms. But my brain 'fog' could be partly due to antidepressants which can create similar effects, though the benefits certainly outweigh the negatives.
Yeah I'm well thanx - funnily enough just had my 20 minutes, actually 3 x 20 minutes as it goes & I feeeeeeeel good do, d, do, d, do, d, do, like I knew that I would now........ ;o)
Yeah, when I say something tongue in cheek I always put a smiley face so assumed you'd realise I was only messin yourself.
Yours, no indication what-so-ever, so I thought I'd best check ;o)
Dr Brownstein protocol which includes oral pill of Iodoral helped me, involves 5 or so daily supplements. It has been 'til now (since 2015) the only thing to give me sweet crisp cool clarity of thought - every time. Results from saliva hormone test came back and it seems I have the testosterone level of an 80 year old, I'm in my 40's. Its the second day of taking small dose of DHEA which was also at the bottom of the average level, and testosterone. Already I feel clarity, brightness, and positivity.
I would recommend you ask your doctor for a saliva hormone test. I think brain injury can completely turn your chemical system upside down. I'm on the right road now it feels.
I would also recommend you take a 3 times daily magnesium supplement.
1. - Search on "David Perimutter MD and magnesium threonate".
2. - Search on "superfoodly magnesium L threonate" - summaries of human research since 2010.
It's a more recent version of magnesium and research has shown it to penetrate the brain barrier getting magnesium where it needs to grow synapses.
No - sorry, eating bananas and chocolate will not give you the magnesium you need to heal after a brain injury. Magnesium needs to be taken 3 times per day to stay in the body, load up your system. I used magnesium Oxide. Check with doc but magnesium is usually well tolerated by most as excess is flushed out with urine.
To understand the different types of magnesium and what they do - search "Dr Nibber understanding the different types of magnesium"
If anyone reading has regular muscle twitching, you DEFINITELY need magnesium!!! I used it in the early days to get rid of flicking, jerking muscles.
As Matt says, Frankincense sniffing - the oil of letting go - is wonderfully helpful too.
For nausea - ensure every day one meal has at least a thumb size amount of ginger, I usually throw it in half way through cooking so it is partially cooked.
Great for circulation, inflammation, calming, and nausea. Put it in with beans, or stews, or even with rice.
Asking doctors and neurologists - you get different answers, its a new area of research, brain injury is a specialist subject and even then, different types of brain injury require different approaches. Mine was from a viral infection over a period of time, not just a one off incident of a blow to the head, or a blood burst. Seek out a functional medicine practitioner for someone who understands the power of supplementation.
DO - research, act, try a new approach. DONT read this and think, its too hard, it will be better tomorrow, it will go away by itself. Brain injury means body depletion, it doesn't heal on its own if you are mid life or older, we simply don't have the growth factor to heal. If you are in your 20s and 30s there is a better chance to heal but why wait, act now, catch it early. Don't be afraid to educate the doctors you meet! I have seen a neurologist and she was a few years out of medical school. Said I didn't fit the norm. What kind of statement is that?! All my reflexes were working (appointment 5 years after main infection) so as far as she was concerned, there was nothing she could do. NHS is strap for cash. Research your condition, talk to Headway, write down your most pressing symptoms, and take your list to appointments. It is so easy to get pushed out of the door. Be firm. You need help, you need action, you need more tests.
Apologies for long reply. Not been on site recently. Hope this post helps others. If you have enjoyed reading, please like my post so I know it has benefit others.
Very interesting! This will help me be pro active, you hear a lot of “it just takes time” from the docs, I haven’t taken any supliments except daily vitamins but the magnesium and frankincense sound positive. Thank you
Hi Erin, I’m also an Erin who’s had an SAH (as a result of an AVM) so quite strange to see your username! I get brain fog too - a LOT. There’s some good suggestions in this thread so hopefully you’ll find something that helps. For me, the only thing that helps is probably the most obvious - to sit in silence and just rest and decompress! I can’t sleep or take naps as my mind is too ‘busy’ so I find it hard to switch off but just having some solitude but on a frequent basis does help. Mindfulness is good for that too, if you can get into it. Hope you can find an answer that helps 🙂
Hi Erin, that is very strange, it’s also about the same time on from mine... although you’ve been through a lot. Thanks for your reply and I definitely agree, sometimes just giving in, resting and being on my own is the only thing I can do.
I use the Headspace app on my phone, I find it useful but I should use it more. I’ll try a few suggestions from here and see what happens.
I have actually been taking magnesium every day since RecoveringH’s post, I’m not sure if helping but I haven’t had the head fog as bad since. I will keep taking it to see and report back here. I wanted to try one thing at a time, so will try the frankincense next.
I also take a multivitamin, that definitely helps with tiredness for me.
I stopped having headaches after 2 years in 2018. Fatigue and all that I just go with it. I don't really bother to plan my activities and usually forget about NF. I stopped working a while before the SAH but do voluntary work. Thankfully I got my licence after a year post craniotomy so I can still do the voluntary work. Since my mood improved I have volunteered at a local charity in the town where I live and do a shopping assistance trip once a week. I do get completely shagged but hey ho I get to sleep like a log. I can't ignore/forget what has happened to me because one is just reminded of it most of the time, like dents in my head where craniotomy occurred. I am of the mind that shit happens, so just get on with it. For me death would have been preferable but that was not meant to be. This year, in August on the third anniversary of the operation I had in Edinburgh, I have planned to visit that hospital which I have no memory of. I don't even know the name of the surgeon who 'saved' me. I am drawing a full circle on that date and that is that.
I get to play scrabble each week with a lady who had a massive brain attack in August of the same year. She is in a home, has lost use of her left arm, can just about walk. Next to her I almost feel a fraud. We know exactly how the each feels and have the most anarchistic games of Scrabble where BI rules prevail.
I even met a lassie in a local Tescos who had a SAH ten years ago in Sutherland. Now her experience would have been worse than mine. It was good to meet a fellow SAH person. I nearly said how well she looked but I stopped myself because as we know looks are deceptive the hell that is a BI.
Bless you on your journey and don't let the you know what grind you down.
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...........but checking back I can see my reply might look a bit haughty ; it's just my warped humour ! 
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