Got really caught out yesterday and wondered if this has happened to anyone else. Had a great week and really thought I was getting back to normal (before BI) sorry the word normal isn't a good one but it will have to do. Arranged yesterday to go to the cinema with my wife and kids and all well. Wasn't feeling to great on Friday afternoon but often thats the case after a busy week so ignored it. Anyway so had a nap yesterday before leaving for the cinema about 12:30 and did go into deep sleep for only about 5 minutes but when I woke I felt like id been hit on the head with a bat. Felt really strange, like some one was pushing on my forehead and a dull pain in my head. Had a quick snack because that can help but it didn't and I had to sit quietly in a dark room for 10 minutes then started to feel ok.
Had a shower got changed then made a decision that I would go to the cinema as arranged but didn't feel 100%. In the cinema I didn't feel right the noise and the picture was bothering me as if my senses were all magnified especially my ears and eyes. I have had this before with noise like I can here a spider breathing so I persevered but in the end I had to leave and go sit in my truck. I felt so much better when I got out of there.
Wife and kids joined me when the film finished about an hour later but I felt awful, really heady and awful. The drive back was tough too only about half hour but tough for me as my senses were working overtime (no squeeze jokes please). Got back and sat on the sofa but again felt like some one was sat on my head. I fell asleep or drifted off for a few minutes then took myself to bed for half hour and went out like a light. I felt a lot better when I woke up but it must of been pure brain fatigue and I didn't notice the signs, no thats untrue I did notice them but tried to drive through them.
I suppose the leaning curve here is to see the signs and accept them. I shouldn't have gone but really wanted to go but its funny as when I was sitting in my office, the dark room I said to myself lets not go and stay here and sleep, It was my brain telling me to stop and rest.
I really thought I was ok as this week was so positive and good not tired at all and getting back to being the Duracell bunny again, I guess some one had put old batteries in me or worse still Tescos own brand. Feel a lot better this morning as good nights sleep but still learning about myself and the BI that iv got and things can change in an instant...XX
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MXman
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Hi MXman, migraine I think.the neurologist has just informed me that thes feelings of pressure I get in my head, and I've been suffering them ever since my BI are pressure headaches,
I feel like my head is going to explode, my vision blurs, paracetamol only lifts it a little, I need to sleep and it wipes me energy wise for a couple of days, but I don't get any pain or nausea or flashing lights or anything.not seen my GP yet for medication cos I've only known for a couple of weeks, and strangely, not had any attacks in that time, maybe the worry of what was causing them made them worse. But see your GP, I think it was a migraine.
Love Janet x
hi there. It is a case of getting used to your body and listening to what your brain says. I am really lucky and have never had headaches and migraine since my ABI but I do get seriously stressed out by noise, lots of people and different conversations etc which overload the brain and actually make me feel aggressive (fight or flight, maybe) It means that I need to plan events, make sure I am ready and that my family understand that I may just suddenly get tired. Its boring but a new reality and it can be worked round but sometimes makes you yearn for the old you and the loud things you used to do. I never watch tv and hate cinema, far too many noises (how loud is a seat squeaking or someone eating popcorn 5 rows away?) I think we are hypersensitive to noise now (hyperacusis, thats the posh name for it) I can handle noise only if its noise I like and I am in the mood for it. Have been to one loud live stadium gig since my BI and loved it because I love the band but other peoples` music and noise....yuk. Hope you have a great (quiet!) Monday x
Could be never had them before, well before BI, come to think of it never had them at all. I didn't want to take any neurofen but thinking now I should have done as they always help me if and when I have a headache. Ill have a chat with my GP too. Have a great day...N
Ill have look into hyperacusis abi, the noise was awful but ok now.
Don't bet yourself up about not taking notice of the signs, I'm almost 2 years since TBI and I am still fighting/not noticing the signs and push myself to far when I should stop and rest. I am, however, getting a bit better at it. I don't know about anyone else but my hypersensitivity to noise and visuals is so much worse when fatigued so you're not alone there either.
It sounds so familiar! Tiredness and overdoing doing it.....noise annoyance, sound, vision etc all exaggerated! It's a horrible feeling...you know it will pass but you feel the need to remove yourself from the situation as it all gets too much. I discussed this with my oncologist but they said I couldn't possibly have it! I now just try to work out if it is actually worth going to places that I may feel like this in. So frustrating! I'm the same, I need a good nights sleep to come back to myself again. Also too many people speaking at one time can stress me, even although I am following the conversation, (I'm not stupid)it can become very irritating and yes things can change in a second! x
I've named that particular one 'overload', everything's just too much.
You've nailed it yourself, you need to trust your spidey-senses, and, when you get 'that' feeling, remove yourself, as far as is practically possible, from excessive stimulus.
I can say that with some degree of authority, as I'm on a similar timeline to you, and have spent most of today hiding, felt 'vague' and not myself this morning, knew it wasn't a full-blown fatigue shutdown, just one of my 'off' days. Warned the husband and son that I was over-sensitive, and just stepped out of real life for most of the day.
Currently sitting with my earphones in, to drown out the noise, the husband has some industrial deafness/tinnitus, and HAS TO have background noise. He's had the TV on volume nine million since he got in from Asda (I didn't go, I'd have murdered someone.), and now he's set up a chuffing keyboard in the living room, as well as the TV, and his bloody netbook playing Youtube videos.
I'll go back upstairs very soon, away from the noise!
We all begin to re-learn energy management after our BI. I learned the slow hard way that I need to reserve 50% of my energy and never let it dip below that because if I do then it's a similar experience to yours.
Yes I like that, learning management ash, its just like I have to manage my time carefully and what I do with it. It will come.
Its it strange how I didn't have this noise problem before Gaia, Im not sure why must be the brain learning new pathways and I suppose complete fatigue and the senses just go into overtime. N
I've over reached lots of times, equally sometimes I've been very pleased by what i can do at times.
my last glorious failure was attempting to go to the lido for a fundraising Bowie night, it was loud, very loud, the ground was unsteady and was dark. I felt terrible within a very short space of time, and after a while admitted defeat and went home, to sit in the light in the quiet for a few hours, until my brain stopped popping and fizzing.
And so the reality of living with a bi kicks in. The cumulative effect of doing just a tiny bit more than the new fuel tank allows for a few days and then.....the wheels fall off the wagon in style.
Ret welll and take it a bit easier for the next couple of days and you will come bouncing back.
Its sure true what you say random and Roger. I know I'm in really early recovery but the noise issue hit me hard, it was like all my senses were magnified and I felt terrible. As you said random just a little too much action and not enough battery power. So funny as I'm used to being the Duracel bunny then all of a sudden I'm frozen. Need to learn and adapt and accept... O and see the signs. XX N
3 years after b I i might or probably would not be able to go the cinema. If I did go it wouldn't be very good at all.
But something where I have made a lot of progress is at about nine or ten months post b i, I tried to involve myself with a GCSEs project and afterwards felt like I had done 10 twelve hour shifts on sleep deprivation and my head needed de fragmenting. But now I know I could handle a lot more mental taxation than a GCSEs project.
At your stage I wanted to re learn certain things immediately and just go for things in a must do it now way . I think I am now a lot more paced, but no doubt someone would disagree.
Again my advice is maybe say to yourself I'm going to build in a break here or break there or a fair amount of down time.
I don't have problems with cinemas, though first time after, discovered that if it's dark my balance is massively effected. but beyond that.
oddly discos are normally okay, I take a young lad to a disco few times a month, it is tiring but manageable. which is why I though the Lido would be fine, was quite a shock how badly I'd got that wrong!
I find clutter generally harder than single sources.
my balance affected by tiredness , fell into wardrobe yesterday , was very funny to be fair. Just from my point of view I found improvements in balance up to 3 year post injury.
as i tire my gait starts to differ, and I have to concentrate much more on walking etc, but since I rely on my sight to compensate even if i'm not tired dark makes life more difficult.
My balance is quite peculiar in many ways, pre the accident I had fantastic balance and poise and growing up on the side of a steep mountain, I'd spent a large part of my life pushing it.
so I can ride a bike, I can even iceskate! but if I can't see the ground properly like if it's dark or even at times just a busy street.
or walking on a gravel drive way etc. i'm not much good with esculators either, nearly fell off one the other week.
So my in short my balance tends to be like the Nursery rhyme.
when it's good it's very good, but when it's bad it's very bad.
ah right, i see. my vision wobbles (nystagmus) i think nystgmus affects my balance if i have my headon one side,
yes i can certainly see how balance and vision would be connected but mine arent that much,( i dont think.)
yeah someone was lookin at me very funny the other day because of my gait, 1st time thats happened, but i have no hang ups.
i dont know why i can start out walking ok for a few paces then the balance just goes and i always need a crutch. it doesnt go very bad anymore, but i cant walk round a city without 2 crutches, i think because theres an interplay with the amount of people walking past and i havent got much depth perception vision so i use the crutches to get the lay of the land if i have no sense of it.
thanks for telling me what youve told me what things are like for you, because i think it 'll be useful for me to know what to say to benefits assessors etc. sometimes you think oh maybe i shouldnt say to much here am i makin too much of this but we are not.
yeah i reckon 50 miles west in lan dhere and youre in mountainous country.
oh what makes my balance really bad actually is glasses, glasses=i will be very dizzy feeling indeed. so no climbing mountains in glasses with high heels on for me. actually i tried this once, well actually it was just a ramp up to a council building walked in shoes that werent completely flat. anyhow im sure we'll cope . mountains is no great loss, and i am gonna attempt snowden on the railway see how i get on might have to come straight back at halfway station but well see. phew! sorry for going on... goodness me!!...
oh yeah, watch the escalators now! a lady in marks and spencer said shes seen too many people come a cropper on them.
oddly i can manage escalators depending on what my brain wants to do with them at the time, or i am sure they flippin speed them up on purpose just for fun sometimes, so they are a no go the.n
Its back to the coordination problem again. For me it was a frontal lobe BI which controls cordination but not senses? Funny how I had a problem with senses especially hearing and sight. Cinema was a major problem.
Never had a problem with my balance but then that could be waiting round the corner. Seems to be ok. Not really ridden again properly as yet but looking forward to riding Saturday, that will be the test. Rode about 6 weeks ago and it was painful, not as I thought it was going to be although I should be lucky I can ride at all. All these new things are part of my journey...
Why are some of us not really able to tolerate noise? I know about hyperacusia but, i havent really looked into it more than that. Sorry co ordination problems must be challenging, i dont know much about this but a lot of my cordi ation challenges got better quicker than othr things did. Really sorry my brain is gonna need a reboot again tonight (just insomnia leading to not being able to think properly) where youcan feed back to neurology, (dont like to say it but i need proper assessme t which i will organise) so i want to offer a message of support, but im not super knowledgable and am only offereing replies based on what i tbink and my own experience. Take care.
Experience is the one thing we can share Eleanor because its based on our own happenings and its honest. But this noise thing has got me at the moment...
I know mate , it possibly could've drove me up the wall yesterday, it's worse when unusually extremely tired, the noise thing, so yesterday was a one off. You might find that your brain will over time and in a good way get better at dealing with noise issues.
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