Undiagnosed 13 Years Post - TBI

Hi All, my 1st post and i'm desperatly looking for answers. I was in a coma for 2 days after falling from a gate. About a week after laying in a hospital bed I decided to discharge myself after feeling uncomfortable

in hospital. It wasn't until I got home I realised I had double vision, although I had other memory issues and insomnia I just wanted to fix my eyes and get back to work.

After having an operation to sort the double vision I was visitng the doctor again with fatigue due to insomnia. Although I indicated the sleep problems became chronic post injury I was sent on my way with Anti depressants (amitriptyline). As my bloods where fine and the MRI after the accident was fine my TBI wasn't related to the Insomnia. I had no aftercare which was maybe partly my own fault for discharging myself originally, but should you be allowed to discharge yourself from hospital after TBI?? (Could say mind may have not been in the right place).

As the Amitriptyline just made me feel weird and confussed I went back to the Doc as I needed something stronger to sleep. For the last 10+ years I've been struggling by in life with Zolpiclone only taking them every now and again when no sleep was sabotaging my work/social efforts completely. I made a box of 28 last 3 months but on holiday my sleep was so bad even two pills (3.75each) wouldnt put me to sleep.

Due to Zopiclone not being that affective i've tried other therapies inc hypnotherapy, acupuncture, reflexology you name it i've probably tried it with no joy...

I also struggle with chronic fatigue which has been getting worse over the years, I always put this down to not being able to sleep which i've been trying to live with all these years. With the fatigue sometimes I will have to hold my partners hand for all the wrong reasons. This is simply because I feel off balance as if I may clapse, I quite often have to lean on friends or surfaces in queues which is embarrassing and frustrating.

To look at me i'm fine but inside my head i'm struggling to cope, in the evenings I struggle; to sit without neck support, have a conversation and even watch TV too late. Hangovers from nights out are like death and holidays are no longer as enjoyable. Every morning I feel like I wake up with 50% battery life and depending on my physical and mental activity during that day depends on how fast I feel mentally ill.

Advice please, I've now referred myself to Headway as my doctor gives me the impression he's not interested and counts me down when I visit him. Headway are still yet to call me for a consultation.

Do my symptoms suggest that i've been suffering with my TBI all these years?

If so any tips on medication/techniques to get some sleep?

Thanks in advance


5 Replies

  • I would say it's likely, but the biggest mistake you made was signing yourself out. It can take weeks to get all the specialists to rally round and diagnose, you removed yourself from that process.

    It's going to take you some time to get back into the loop I'm afraid, I'm on the outskirts of that loop now, if I feel the need I can get back in but the referral process is a long one.

    I have been self medicating, with my GPs blessing, my inability to sleep, I take a quarter of a piriton nightly and have been doing for over 3 years, needless to say I don't need them when on holiday because I am more active then.

    The fatigue is the worst, along with balance issues, but neither problem is addressed by the NHS, I'm expected to cope with it. It's my inner ear that's causing the balance issues and ive just been shown exercises to do. You can find these online, Brandt- Daroff I think.

    Persevere, hopefully your GP will listen, ask for a referral to a Neuro- psychologist you may then get some answers.

    Best wishes Janet xx

  • you have all the symptoms of a tbi......now heres your problem.......your gp.

    you need him to refer you back to the hospital so you can discuss your symptoms with a specialist.

    in the mean time phone headways to find out where your nearest support group is and when they meet. youll meet others with tbi and abi s sharing experiences

  • Hi Gavin

    What area of the country do you live? And I will try and find your nearest Headway number.

    Best wishes


  • Hi Gavin,

    It's my first time also in this section of the Headway site, as I have been recently posting on the TBI section. I had a TBI in March 2014 (induced coma for a couple of days) and am still very much organising my own care as the GP whilst very supportive, does not know a lot about care for TBI.

    I am still not back at work as I also have extremely poor sleep/chronic fatigue and chronic headaches and migraines (which I am still trying to sort out). I have also tried many drugs and alternative therapies, but nothing seems to sort the issues out and generally makes the headaches/migraines worse. I have also been told that I am suffering from PTSD which is something I am now addressing, as I feel it is important to limit the impact of the emotional side of things on the physical.

    What I mainly want to say (in a long winded way!) is that all of what you mention is part and parcel of you suffering a TBI. I have learnt from Headway that acceptance of this is perhaps the biggest thing we all struggle with.

    I found fatigue management sessions really helpful- simple strategies but spot on, you could request them from Occupational Health and vestibular physiotherapist for any balance/dizziness issues.

    I think you have done extremely well to have coped with all your symptoms and return to work. Just because you discharged yourself does not mean you are not suffering from all the symptoms of an acquired brain injury. One final comment- you are not alone!

    Best wishes

  • Yes. Absolutely! I think TBI is now looked for much earlier now, so I am quite lucky! Fatigue, double Vision, bad coordination and slurry speech are present in me, but I believe I am slowly improving.

    Headway will be perfect for you. Being with people who understand you, makes a huge difference, both to your confidence, and well being.

    Good luck, and all the best!


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