18 month report
 

Well, it's just over 18 months since the deed was done and my head went full tilt into the door, so I thought it's time I'd posted an update. For the first week I just felt tired and had a dull ache at the back of my neck if I walked any distance... a storm brewing. A week later I woke up with PCS - nausea and tinnitus first.

Here's a brief recap of my symptoms:

1-3 Months: Hell
Unable to sleep without sleeping pills
Only just able walk walk around the block falling exhausted into the armchair afterwards like an 90 year old.
Panic attacks - anxiety off the scale
Completely wiped out by late afternoon
Nausea attacks but not actually sick
Neck ache
Wobbly legs
Loud tinnitus like an old TV set whining
Head pressure on two occasions - another visit to A&E
Various other symptoms like loss of concentration and slurring speech or stuttering.

4-10 Months: Purgatory
Anxiety
Broken sleep - night sweats/raised resting pulse
Constant fatigue
Tinnitus
Neck crunchy
Depression

Gradually build up walking to 5Km and more on good days - fatigue improves. Manage to go out occasional evenings but hard work.

11-15 Months: Back to earth
Broken sleep - early waking
Tinnitus

Start to get into a daily routine which helps

16-18 Months: I'm back
Broken sleep - early waking
Tinnitus - starting to fade

OK, at at the point now where I'm feeling 'normal' again, it's weird how it comes back gradually, first for just a moment then an hour until it's most of the time. Getting interested in life again and thinking less about my condition. Still hopeful my sleep will settle into a pattern again, that's the only thing holding me up now. It's been one hell of a trip, I feel like I've just been a passenger and had to trust in my body to repair itself. For my part I've just tried to give it the vitamins and any sleep I can. I think recovery has slow because of my age, 50 at the time, and the sleep issue. I would say proper recovery didn't really start until after 1 year and has accelerated this last month. I suppose you reach a tipping point.

Things that have helped me along the way:

• Low mental demand work like house painting and gardening and rebuilding an old beetle engine. I really believe this has given my brain the rest it needs
  
• Walking in the park - good for the soul, lowering anxiety and blood circulation around the brain which I believe is essential for recovery.
  
• Regular habits, meals and bedtimes
  
• Cutting out alcohol and caffeine (back on caffeine in the mornings)
  
• Laughter - watching lots of comedy's to get away from it
  
• Talking on this group and to people about my condition - don't be isolated

In hindsight:

I'm sure my PCS was a result of the combination of two previous head injuries as a teen skateboarder and the depressed state of mind I was in at the time of my accident. I think the tinnitus and anxiety was a result of bruising of the brain leading to swelling/pressure. Further I think maybe my hormone levels have been messed up by bruising(?) of the hypothalamus. I always thought I'd got away with my skateboard injury's but looking back I now realise I displayed some symptoms back then without knowing it. The brain takes much, much longer to properly heal than they say, think months not weeks. If I'd rested up the week after my injury would I have suffered as much? Who knows.

Thank you to everyone on this forum, with the absence of knowledge from the health professional it's really helped me and no doubt others. I hope I can give what help I can to others. :grouphug:

This is a heartening report. Were you able to continue working at all? This is probably what I'm struggling with the most these days.

Super E,

Congrats on the progress! Terriffiic news.

Bud

Great to hear SE. It's amazing how difficult that first year is for so many of us.

Thanks for taking the time to report your progress. It is so important for people to see that the vast majority of patients go make good recoveries.
As you well know, during the initial "hell phase," it's hard to believe that.

Hockey,

I like the term hell phase, very accurate.

Met a head injury guy today for the first time, his accident was 10 years ago. I had never seen him before and there were others around when we met but I could tell right away he was the one I was supposed to meet. There was just something about him that was familiar, the uncertainty in his face was like seeing mine in the mirror. Not sure if that makes sense to anyone but it was a bit eerie to me.

Bud

Thanks guys, I wanted to emphasize that recovery does continue after the first year and that you do adapt. It's a case of lots of small victories adding up and steadily making you stronger.

Luckily I'm self employed and single, my income took a dive but I've managed to stay afloat by pacing myself and working in short stints. If I'd been an employee I have no doubt I would have lost my job - my fatigue was overwhelming. Also, I don't think a relationship would have stayed the course, my emotional state was too fragile plus I wouldn't have wanted to put someone through my ordeal. People who have small children and have to cope with full blown PCS have my sympathy - maybe it drives them to keep going?

Hoping to rebuild a social life and get my confidence back to where it was.

Yes, I know exactly what you mean. I was watching my kid play soccer, I looked at one of the new parents and knew, instantly, that she was "one of us." She felt the same thing about me.

I think TBI folks pick up on a number of signs others would miss: a slightly flat affect, a sort of sense of apartness from the group, the way quiet struggle to deal with stimuli plays out in the eyes, etc...
Anyway, we're really close friends, now. It's so nice to spend time with someone who just "gets it." :)

Super E,

I think self employed helped save my bacon too, nobody could have kept me around the last year.

I work with family and have some Terriffic employees who treat me like family, made a big difference.

You will find your confidence, you have come this far successfully.

Hockey,

I find that most fascinating, thanks for posting that.

Bud

Sounds very very close to my own PCS experience which started 18 months back. The first 6 months were absolute HELL. Like a feeling for not wanting to live. I didn't see real progress until 12 months in either.

I think the first progress was a bit more energy and a bit better sleep cycle. The insomnia was bad, how bad? Extremely BAD.

Did you think that your concussion resulted in VESTIBULAR injury?

I'm sure my injury was probably both cerebral and vestibular. My struggles that are outstanding remain floating like feeling in dark settings and Tinnitus.

The Tinnitus is better however the inner ear recovery seems VERY slow. I don't know what causes Tinnitus however I have my thoughts.

1. Either the shockwave that blows out our hair cells in the higher frequencies.

2. Inflammation around the hearing/vestibular/auditory cells/nerves.

Would be great to have permanent resolution of all symptoms. Perhaps at 24 months? Fingers crossed.