Feeling different all of a sudden: I gained my TBI... - Headway

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Feeling different all of a sudden

Janluxton profile image
26 Replies

I gained my TBI (makes it sound like an achievement) in December 2013 and other than the behaviour/personality changes, I've been doing ok.

In the past couple of weeks, I've become increasingly more tired, more frequent headaches (muzzy headaches, not banging ones), slight vertigo/dizzy feelings at random times.

I am going to book an appointment at the doctors but just wondered if anyone else has experienced things like this such a long time after the bang on the head?

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Janluxton profile image
Janluxton
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26 Replies
Kirk5w7 profile image
Kirk5w7

I acquired mine in Feb 2012 and I regularly see saw through periods of feeling / coping well and not. It's evidently the way of chronic conditions.

It's not been easy knowing this is for the rest of my life, but now I know, in my case, my condition is not progressive, it's easier to cope with those low times knowing they will pass.

I find I can work through those times pushing myself harder and then resting afterwards. This way I am getting more out of the days, even when I wake and don't feel so good, I make myself at least go out for a short walk, it helps my mood and feels like I've done something.

A trip to the GP will help settle your mind, they should be happy to see you.

Janet x

Janluxton profile image
Janluxton in reply toKirk5w7

Hi Janet, I chatted to a lady at the community brain injury team today and she said I should keep a diary of what I do in a day and whether I have a nap, then look back and figure out if there are days where I'm busier which make me tired and try to cut down on what I do and see if that helps, she also said that tiredness can bring back earlier symptoms like the dizziness but I will also book a doc appointment to put my mind at ease. Thanks for your comment, the tiredness is difficult to deal with as I used to only sleep at night and couldn't nap in the day, so frustrates me that I now have to x

Sem2011 profile image
Sem2011

I sustained my TBI in 2011. I have developed new symptoms after my accident. I did not have spascitity for five months. new symptoms have developed and others have disappeared. When fatigued I suffer with headaches, dizziness etc etc. Are you doing more activities now? This could be the reason. I would check and make an appointment to see your GP.

I have just developed dizziness, but not sure if this is due to new medication.

Good luck and take care xx

Janluxton profile image
Janluxton in reply toSem2011

Hi thanks for your comment. I also find that symptoms disappear and reappear!

I have been doing more things, I wrote my story/blog which took a lot of time on the computer plus I've done more activities. I've been advised to keep a diary of what I do so I can figure out what makes me the most tired and cut down on that or do it less often. I will also be going to see my doctor, I also heard that tiredness can bring back earlier symptoms (I used to get really dizzy), so advised to start my vestibular excercises again for a little while and see if they help.

Have you suffered with the dizziness previously? If so have you had vestibular physio at a balance clinic?

RogerCMerriman profile image
RogerCMerriman

December 13 for me as well should start a club!

I have/had. Tiredness/vertigo/balance/temper, they have got better over time, vertigo in partial is rare now.

what I have noticed is as time has gone on, I've noticed other things which I guess I didn't notice or want to? and as you do more etc.

Janluxton profile image
Janluxton in reply toRogerCMerriman

Hi! Yes the Dec '13 club sounds good! What date were you in Dec?

My problems have got a bit better too and again some things I'm still discovering, but as you say, may not have noticed them whilst other problems were going on.

I need to keep a diary now to keep track of what I'm doing and what makes me more tired, and start up my vestibular excercises again to see if that helps, plus go to the doctor for peace of mind.

Thanks for your comment.

Jennaberri profile image
Jennaberri

I have similar feelingsituation to you, I acquired my TBI in October 2013. I seemed to make a miraculous recovery but over the last few months I have become more fatigued, my speech goes through stages of being ok and slowed/stuttering, I have been getting more frequent brain "fuzzes", vertigo, nausea, confusion. It's been troubling me but haven't mentioned it to doc as just see it as BI. Let us know what your doc thinks it is,

Janluxton profile image
Janluxton in reply toJennaberri

Hi,

I've just been told today that tiredness can bring back earlier symptoms like the dizziness, also to keep a diary of what I do to see what makes me more tired so I can balance my days a bit more. Also to start my vestibular excercises again to see if they help a bit, have you had any vestibular physio for the dizziness?

I will be going to see my doctor also just to check that this is normal and it might just be that I've done more activities. Fingers crossed that's all it is then I can just balance my days better and control the things that make me more tired.

Thanks for your comment x

sospan profile image
sospan

Jan 2012.

It must be something seasonal (or some master plot) that over the last 2 months i also have been really struggling with fatigue.

I can't pin it down to anything in particular, but yesterday it took me 5 hours to clean one room. I have no idea where the time went

Jennaberri profile image
Jennaberri in reply tosospan

Oh my gosh, it took me 4 hours to clean my carpets in my small flat a few days ago. I kept having dizzy spells and electric shock feelings in my head. It could well be the seasonal shift

sospan profile image
sospan in reply toJennaberri

On thing on this site - you are not alone.

If you tried to explain this to the non injured (won't use normal!) they would not be able to comprehend the issues

Janluxton profile image
Janluxton in reply toJennaberri

Hi,

Yes took me hours to clean one room yesterday, so frustrating! Felt I needed to explain to my husband why I hadn't done many jobs in the day, he wasn't bothered, he understood. Just really not like me. I got some tips today that I will try and see what the doctor says.

Janluxton profile image
Janluxton in reply tosospan

I thought I was just being stupid, this happened to me yesterday! Took me hours to clean one room, had to keep sitting down for a rest and I felt frustrated that I wasn't getting anywhere. This is really not like me.

I got some good advice and ideas today and I will also book a doc appointment to double check. x

1949liz profile image
1949liz

Hi I had my TBI just befor Christmas and I suffer from dizziness and tinnitus also my tremor is much worse not just in my right side but also my left hand. But it could have been worse we are alive and after two MRI I am delighted to tell my family and friends that I have a brain take care and give your self time to heal Liz 🌹

Janluxton profile image
Janluxton in reply to1949liz

Hi Liz,

Yes things could be worse!

I was just concerned that things were starting to go wrong so long after. I've been advised to start vestibular excercises again (horrible things) to see if they help and try and figure out what makes me most tired by keeping a diary.

Thanks for your comment, I hope you continue to do well x

1949liz profile image
1949liz in reply toJanluxton

Hi Jan,

The problem with a brain injury is that once the injury heals nobody can see the damage. If you break an arm you have a plaster on and people feel sorry for you, then it is physiotherapist and so on. A brain injury is sort of the same as you need to do anything and everything to improve your condition. I have been downloading brain training games and trying to learn how to keep my mind from wondering.

It is hard work but it is slowly working. Keep going and the diary sounds a great idear I will try doing that so thank you for that.

Take care Liz 🌹

randomphantoms profile image
randomphantoms

Hi Jan

Welcome to the wonderfully? random world that is life post bi.

From your post it sounds like you have a good level of awareness and that can be both a blessing and a curse.

With awareness you tackle the major problem first and as you make progress with it you notice that something else isn't right.

It sounds like you are at that point when you can do most things but haven't quite learned that you need to pace things yet.

Are you keeping a diary? It's really useful to help you to work out if you've done too much generally or of one specific thing and brought on the headaches/dizziness/wobbles or whatever you're personal random phantoms are.

Still worth getting it checked out.

Let us know how you get on.

Lovenhugs

Xoxo

Kirk5w7 profile image
Kirk5w7 in reply torandomphantoms

Trouble is Random, nothing brings it on , I'm like this from the moment I wake in the morning to the moment I go to bed at night. Some days are worse than others, I've just learnt to deal with it.

I go out on my own but it's a real chore, I do it because I have to, I'm not prepared to give in.

But it's fine, one day it may be better.

Janet x

Janluxton profile image
Janluxton in reply toKirk5w7

Have you mentioned this to anyone? There may be things or tips that can help. Maybe not stop it completely but give you a break from feeling like it all the time.

Being tired makes everything else seem worse and things are heightened, other problems may start surfacing. It's not something that you should just have to deal with. I really hopes that improves for you x

Kirk5w7 profile image
Kirk5w7 in reply toJanluxton

Hi Jan, I've been telling professionals since day one, but the scans and MRIs don't show anything, just the damage done by the encephalitis.

I wasn't expected to survive at all because I was so deep in the coma, the fact that I am here, walking with no adverse effects on my intellect astounds anyone I see in the medical profession. The latest neurologist I saw for my balance, did the usual double take when I walked in to his room, and even commented in the letter to my GP that I had attended the appointment alone, I no longer need to be accompanied as I can remember and discuss the necessary with whomever.

High functioning, I've been told. I still have to work on some fine motor skills, the high functioning can be a curse because my body lets me down.

I too have to do the Brandt- Daroff exercises to try to improve my balance. I did these 18 months to 2 years ago, and they did help then, just hate having to go through it all again.

I was told by the rehab unit that it was just a question of managing my condition now. No treatment necessary, my plastic brain has done a good job by itself, but not perfect yet !

Best wishes on your journey.

Janet xx

Janluxton profile image
Janluxton in reply toKirk5w7

Hi, I really hope that your tiredness and dizziness gets better! I had the Brandt-Daroff excercises too and I'm not looking forward to starting them again either!

Just because you can attend an appointment on your own, doesn't mean you are fine and 'well', that's the most annoying thing about brain injury- you look ok so everyone assumes you must be ok.

I really hope things improve for you. Thanks for your comments. Take care. Jan x

randomphantoms profile image
randomphantoms in reply toJanluxton

When you mentioned vestibular exercises I had to look it up. I found mine, including ones we tried and I was told not to attempt.

Cawthorne Cooksey (hope I got that right) and I try to do them every day just to be able to keep the progress I've made.

Can't wait until the dogs go back to their own home and I can at last be safe doing them.

Lovenhugs

Xoxo

Janluxton profile image
Janluxton in reply torandomphantoms

Hi, I was given this exact advice today also, keep track of what makes me most tired and try and balance out my days better. People tell me that I probably do too much but I go with the 'I'm fine' response but maybe it's taking its toll, trying to just keep going. Feeling guilty that I don't work so compensate by doing more at home and helping people out- on Friday I babysat a 2 year old for 9 hours!! Maybe too much.

I am still going to the doctor to check that it could be these things, I'll start my vestibular excercises again and keep the diary and see how things go.

Thanks for the advice x

Kirk5w7 profile image
Kirk5w7 in reply toJanluxton

You did well with the baby sitting, I couldn't do that.xxx

randomphantoms profile image
randomphantoms in reply toJanluxton

Hi Jan

Babysitting 2 year old for 9 hours!!!!!! Yep I think that might just have had something to do with it.

Rest well and remember that rest is just as important as activity for keeping us as well as we can be.

Lovenhugs

Xoxo

dawny profile image
dawny

I was making a good recovery and crap things came back which have knocked me for six mainly bad smell and taste which has left me quite I'll, I'm here to support x

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