Life after TBI

[jentwistle]

Hi, my names Jen and I'm new to this. I suffered a TBI on the 18th December. I realise I am very lucky compared to what others have been through but am still finding things hard now and again. I still often suffer from bad headaches, fatigue, sickness and dizziness. I wonder if anyone else can tell me how long their symptoms lasted after their brain injury? I am also unable to return to work as a nurse at the moment. Has anyone returned to work and struggled? This is a big worry for me, especially as it is a stressful job. My hair is also falling out at the back of my head where I fractured my skull, has anyone else experienced this, and have you got any tips for helping the hair to grow back?

[razyheath43]

No tips on hair loss,iam guessing the symtoms you describe will last as long as they last! Take each day at a time. Welcome to us lot!

[jentwistle in reply to razyheath43]

Ah thank you!

[razyheath43 in reply to jentwistle]

Pleasure. Great advice "mummy" Cat!

[cat3 in reply to razyheath43]

xx

[cat3]

Hello Jen and welcome. We're usually stuck with the after effects of our brain injuries I'm afraid, so it's mostly a matter of management. I hope you'll find the headaches, which can be so intrusive for the first couple of months, will gradually become less frequent as more time passes. And the dizziness is a 'wait & see' issue ; it might settle, but if not there are procedures or meds which can help to minimise it.

We all tend to rail against the fatigue and swear we'll beat it, but the reality is that it's something most of us have had to learn to respect as our brain's way of protecting itself from overload. For the first year it can be difficult accepting our limitations, but until we've recognised our new boundaries, it's difficult not to overstep them to excess, resulting in 'melt-down' !

The short term memory issue is another challenge to be managed with various reminder & prompting aids, but improvements are achievable by keeping our 'minds' as active as possible, whether with word games, crosswords or cognitive exercises/training.

Of course the degree of damage of your TBI will help determine the magnitude of your longer term issues but, although things can seem bleak at the outset, some people do resume their former careers, usually by arranging for a phased return to see how well they cope initially.

Try not to think too far ahead ; difficult when you need to work I know, but you're still in the recovery stages right now and need to concentrate on finding a whole new balance for daily living and for the regular periods of respite your brain so badly needs.

We have this mantra on Headway Jen .............'Early Days'. That's what it is for you right now, and for some (unknown) time to come. Take your time m'dear ; there are countless people here who are living proof of life after brain injury. Best wishes, Cat x

[jentwistle in reply to cat3]

Hi cat thank you for all your advice, it's greatly appreciated! I think it is just a case of taking each day as it comes and learning how to manage symptoms xx

[cat3]

Oh forgot ; the hair ! as Razy says, it can't be rushed . There are many so called restorers online but all scientifically unproven. If nerve damage is responsible, your hair should regrow in conjunction with the cell & nerve recovery in the damaged area. x

[B_S_A]

Hi there Jen!

If I were you I'd take a little while to regroup. When I had a brain haemorrhage, all I could think about was going straight back to university, which was a big mistake on my part. Symptoms last for different periods of time for everyone I've found.

So what's the situation with work; are you on paid sick leave? Have you got a neurologist now?

[jentwistle in reply to B_S_A]

I'm the same! I want to get back to normal but in the back of my mind I don't want to push myself and have a set back. I am on sick leave at the moment. I've just been given an appointment in the neorology clinic for Saturday, so hopefully they can tell me more then and I might have a better idea about when I can go back to work! How long ago was your haemorrhage?

[jentwistle in reply to jentwistle]

And thank you for your reply

[B_S_A in reply to jentwistle]

That's great! Use all that sick leave but yes hopefully they'll have some answers for you. My stroke was back in 2012 (I was 20)

[RogerCMerriman]

Like your self I fractured my skull in an December, though for myself 2013.

Like your self fatigue/dissyness it was much better by 6-8 months though it remains as do other symptoms.

I work though I have reduced my hours and they have made adjustments.

It is very difficult to work though the changes the brain is not good at spotting these. Keep a open a mind and remember it's very early days for your self!

[jentwistle in reply to RogerCMerriman]

Are you still working reduced hours now? And do you manage okay at work day to day? Thank you for your reply

[RogerCMerriman in reply to jentwistle]

I went back to work far to early luckily my boss was wise to this and told me to get phased return I think I started on 2hrs a week, or something silly like that. Which much to my surprise exhausted me.

I slowly with input from work/GP increased my hours, I went back to full time but I wasn't coping so I reduced it so I do 4 days a week.

These things are really unpredictable in many ways it's wait and see.

[Hidden]

Hi Jen, it does take time for your tbi symptoms to settle. And no two tbi survivors are the same. It is natural to want to return to work as soon you feel you are ready.

Do you have an appointment with a Neurologist whom can offer you the advice you need? Also having supportive family/friends and an understanding GP will certainly help you on your journey post tbi.

All I can advise is that you refrain from rushing back to work as your injury is and will always be invisible. Your work colleagues may place unrealistic expectations upon you, believing that you are 'back to normal' which may be a recipe for disaster for you. Take care.

[jentwistle in reply to Hidden]

Thank you for your advice Clara I have just been given a neurology appointment for Saturday, so I'm feeling quite relieved as I should be able to get more answers.

[Reeve77]

Hi, don't stress too much it will get better! I think my symptoms where for about 4 months, I returned after to work about after the same amount of time but on a phased return, your employer should do the same and not try to rush you straight back in to full time, it is hard and it's even harder to think of life without the headaches etc, don't worry you will get there x

[jentwistle in reply to Reeve77]

Thank you I'll just have to be patient and listen to my body!

[StrawberryCream]

The others have given you good advice and it does all take time. If you are a nurse then you would need to be assessed by Occupational Health before you return to work. They are there to help you and will be able to agree a phased/part time return when you are considered able to resume your job and will review how its going. My advice is to be honest with OH and don't try to convince them you are totally well with no ongoing problems.

[jentwistle in reply to StrawberryCream]

Thank you for your advice

[Silmarillion]

One solution to the hair loss around the site where you fractured your skull is to get a few hair extensions in the area where the hair is sparse.

I'm a nurse too btw

I get all the symptoms you've got. I'm going back on a phased return which reintroduces me back to work very slowly. I start next week. I don't feel ready to go back as my job is extremely stressful.however....the sick pay has run out so I have no choice.

The secret to managing your issues is to anticipate them. If I go shopping...it wipes me out for the day...therefor I plan nothing in the evening. I don't cook elaborate meals, or heavy amounts of gardening and I do walk the dog ....just not for hours like I used to. You'll have days where you feel like rubbish because your heads sore and you can't do anything. You'll have days where you feel all bright eyes and bushes tailed, just don't overdo it on those days. Learn to say no to people!

Your injury happened in December.....so it's still pretty new. Don't rush things and try not to go back before you're ready. I've had 6 months off, and I could have taken longer.

[jentwistle in reply to Silmarillion]

Like you, I'm worried about going back as it's extremely stresssdul and I sometimes struggled to cope before the brain injury! But I'll be going back on phased return, so hopefully I'll manage. I'm going to talk to my consultant on Saturday and see what she thinks as well! Thanks for the advice

[Silmarillion in reply to jentwistle]

I'm pretty worried too Jentwhistle....though I'm working in an office as a nurse. It's a bit like a stressful shark pit with loads of unpaid overtime! I find it hugely stressful. I'll give it 6 months and see how I go.....and I'll either go part time or find a new job that suits the new me.

Your consultant may say you're ready to go back , but what do they really know about you and how you're coping? You have to make the call to go back as they might take a dim view of you going back and then going off again. I've met a few nurses who have been seriously ill and have transferred to an easier job. A gal I used to work with in ICU moved to the diabetic centre and became a trainee diabetic nurse...Might be worth having a look at any internal vacancies just to see what's available at your hospital?

[jentwistle in reply to Silmarillion]

Yeah it's a very stressful job! I'll keep that in mind and just see how I'm coping in terms of symptoms etc before I go back. Looking at other vacancies is a good idea, I will have to have a look

[Silmarillion in reply to Silmarillion]

Let me know how you go.....perhaps all of this could change your life in a positive way and get you a job somewhere you love

[jentwistle in reply to Silmarillion]

I will do thank you!

[jayne_h]

Hi Jen,

Why not try diet to improve your symptoms? I'm using this book for my mum:

Tina M Sullivan 'Nourish your Noggin' and it's based on the diet developed by Dr Diane (drdiane.com) As a nurse, I'm sure you will find the scientific side of both publications interesting. You can have 2 squares of very dark chocolate per day as well....

Hope you feel better soon.

[jentwistle in reply to jayne_h]

Thank you for this! I will try it

[Ro_76]

Hi Jen for myself I found the early part of recovery the toughest. Adapting and accepting what happened. My TBI was 18 months ago so I'm very far on now. I'd say fatigue is still there and memory issues. I am far more aware of it the longer time it's gone on. Early on I didn't understand that anything had happened as my memory of the 10 days I was in Kings is very limited. Coming onto here and reading other's experiences, ways of coping etc help immensely I find, as everyone understands. I also attend a Headway drop in meet where others going through TBIs go. If you are fortunate to have one near you it's great. I am fortunate to have returned to work full time now. I was off for 4 months after hospital but did a phased return. It can be a struggle though, stress, fatigue and I make mistakes in my job. But I have worked here a long time and my managers have been very supportive. All the best to you and take care xx

[jentwistle in reply to Ro_76]

Yeah talking with everyone on here really helps! Thank you for your advice xx

[Elkay_1954]

My son' s hair went extremely thin and wispy after his brain injury but over the months gradually grew stronger and longer. It might take 6 months or more - but I'm sure it will just eventually normalise. X

[barny1]

After my head injury, a small part of my scalp was cut and scabbed over. The hairs that were trapped by the scab came out with it and never grew back as it scarred over. I also lost quite a lot of hair in the surrounding area, but it eventually grew back after many months.

[MagicMartha]

Hi Jen, welcome to this wonderful support group.

I too am a nurse. My subdural hematoma occurred Nov 2 2016 after a fall. I was out of work for three weeks with a concussion. I went back to work but was still very symptomatic. On Dec 12th I had a focal seizure, sensation changes only, not loss of consciousness. The head CT showed a subdural that was old enough to be from the November fall, but a new tiny bleed they found is what led to the seizure that day. I am on Seizure medication now.

I have been off work 8 weeks so far and am not allowed to drive due to the seizure diagnosis.

I am finally feeling my old self, do not have headaches, can tolerate a day or two here and there without a nap and don't find bright lights and loud noises as irritating as before. I also find that any dizziness that I have resolves much more quickly than it did before rather than lasting all day.

So there is hope. It's the unknown as so many here have spoken of that is the greatest frustration. How long will it take???? Will some symptoms be forever????? Each one of us is different. I am 72, soon to be 73. I love my work as a Palliative Care NP three days a week. My next big decision to make with my specialists will be at the end of March. Do I return to the three day work week, do I return as per-diem, do I retire with much less income, do I find other part time work that may be less stressful but not as rewarding???????? So many questions and as yet no clear answers.

To add to this, my workplace is of course dynamic and things are changing rapidly and are different now. Will I enjoy my job as much now that there are different staff, different ways of doing what I had been doing before?

Ah me, I'm afraid that our 'work' is to not get too bogged down, be kind to yourself, educate your family and friends that this is a journey, accept that there is no magic, and get all the support you can [ in-between long naps! ]. Wishing you well, MagicMartha

[jentwistle]

Thank you for your advice

[CuriousConnie]

Hi jentwistle , My accident was 10 years ago & I still have debilitating symptoms everyday; fatigue, headaches / headpains, intense nausea, dizzy spells, etc etc. Don't push yourself too hard & certainly don't rush to try proving medics (or yourself wrong), the resulting crash & burn is never pretty & can be soul destroying.

As for your hair issue, I would suggest simple & light head massage (if you can cope with it), stimulating blood flow to the scalp is said to promote hair growth.

Best wishes

CCxx

[jentwistle in reply to CuriousConnie]

Thank you for your advice xx