Hi all,

Im new here and since reading PCS Mcgee and all your other posts its good to know im not alone in the way i feel, i have learnt alot from your posts. I can relate to many of these symptoms. I had a steel frame fall onto my head 11 months ago, i was really drunk at the time (was not knocked unconcious) and thats when it all began. I suffer mainly from fatigue now which has changed my life drastically, i cannot do any overtime at work without regreting it, im very sensitive to alcohol, i have a constant fuzzy head which worsens as i get tired and basically ive just changed. Ive found alot of my life now revolves around resting and sleeping which ive been told is one of the best cures but after 10 months my positivity is wearing thin. Im 23 years old and its hard having to cut down your social life so extremely. Anyways its good to have somewhere to read about this syndrome that not to many doctors seem to know about, im going to research some of the therapies you have brought up but living in little old new zealand i dont know what ill find.

Cheers

Hi Mattioncar, I am also in New Zealand. My main problem is the fatigue. When I am over tired everything basically turns to custard. I work 3 hour days now and am in my 6th year of this. And yes, life certainly changes! I ended up going to Australia for a QEEG - which was the only test that actually showed the physical evidence of head injury. I can give you contact details if you like. Are you living in Auckland? Lucy

Hi lucy, Yep i am in auckland, yeah any more info would be great, was there anything they could do for you?

Mattioncar, are you still working full time and what specialists have you seen so far? Have you been dealing with ACC? As far as social life goes = that is about the first thing that goes down the drain!! The noise is very difficult to cope with and the recovery time after wards is not worth it = took me a while to come to grips with this. I have also given up on alcohol loved red wine and rum previously - now one glass of wine and instant headache. One thing that I haven't mentioned before is that you certainly find out who your real friends are!!! The best thing that you can do for yourself is rest before you get too tired and all the symptons get out of control. Lucy

Yes i have been working full time ever since accident, 40 hour weeks aren't to bad, any more and i get very fatigued. I was dealing with acc i had an occupational therapist visit me and saw a neurophsycologist, neurologist and a neurophysiotherapist all didnt find much if anything and there conclusions were you're doing really well i think it'll fix itself eventually. That was about 5 months ago and i feel much the same. Have you been down the road of therapy as others talk about on here? Or are you looking into anything else?

HI mattloncar - I am in Auckland as well and had similar treatment. What about going back to your GP - that is if he understood head injury and start there by telling him that you don't feel any better and asking for a referral. You must not get yourself too tired. I am now of the opinion that if you do too much initially it slows recovery. If you like give me your phone no and I can give your a ring or you can email me - my address at work is Lynlee@powrie.co.nz

Things HAVE improved a lot for me.
There that's the positive bit.
I don't want to forget that part of the original question.

I have had Post-concussion syndrome for just over 18 months now. And I still have symptoms on a daily basis. So that doesn't sound too hopeful. However, if I caste my mind back to a year ago and what I was doing and feeling like a year ago, I am tons better.

I have kept an accident diary. Mostly I got bored with it because each day is pretty much the same as the last in the catalogue of symptoms. However, it is good to note when you do something for the first time and you see that you must be recovering.

I felt really dizzy for 3 -4 months, but that gradually improved to the point where I started driving again. For the first 6 months, it felt strange to walk as if I couldn't naturally direct myself in a straight line. At 18 months walking seems pretty much back to normal. At 6 months, I tried to go on a run. It felt really strange. This morning I went on a run and it felt pretty normal. I am really unfit now after 18 months of not taking much excercise but I was tired out in a normal way not a concussed way. After 6 months I felt that I could go swimming again. It felt strange at first but soon improved.

The biggest improvement that I remember was that after about 7 months I actually something. Before that I was constantly in some degree of pain or discomfort. I remember being asked if I had enjoyed going on a walk, but walking along the beach in the sun is hard to really enjoy if you have a headache and feel ill. But after about 7 months my discomfort was low enough that I could enjoy things.

So, I guess that's the good news: it is possible to improve. Things can get better.

However, if you were ask me if I feel completely better, then the answer is no. If an uninjured person woke up feeling like I do, I'm sure they would feel quite justified in calling in sick from work. But just because the symptoms haven't completely gone doesn't mean that you aren't getting better, slowly....more slowly than anyone would want, but there it is.
If I compare today with yesterday or even last week or a month ago, I don't see an improvement. However, if I go back a year, then sure I can see that I am actually getting better.

I am starting a new part-time job next week, so if that works out that will be another step in the right direction. The last neurologist that I saw said that my condition would settle down in 1 to 3 years. I could be on track for that. But I don't think that doctors, even neurologists, know beans about the condition. You could be better off getting the responses of people who have gone through the same thing, even though I'm sure that all injuries are different and everyone responds differently.

So, I hope that that might help someone to look on the bright side, even though, let's face it, the condition is really pretty bad; it can still improve.

I'm going to try variious treatments, one at a time, and see if they help.
They are acupuncture, craniosacral therapy, neurotherapy and amitripyline.
So, I would be particularly interested to know if anyone has tried any of these and how they got on.

Wishing you all the best or at least better health.

Thanks Concussed Scientist for your response.

Things have improved for me too so there is hope for every one else. Progress has been much slower than expected (it has been nearly two years since I first posted here). Things don't change much from day to day for me either but if I look back in 3 months or 6 month steps then I can see that my condition has improved and there are activities I can take part in and enjoy.

I'm still very vulnerable and intense activity can trigger my symptoms again and I continuously try to find what my limit is.

Keeping a diary of my symptoms is useful and it helps me see objectively if my condition is changing. Apart from that I am not having any treatment, I am just waiting for the day my life will return to "normal" again avoiding anything such as very active sports which may trigger my symptoms again.The good news is that over the last two years, it has become more "normal".

Wishing you all good health too.

hi peeps

good to see old and new posters I think I actually got worse for a time, that maybe due to scaring , because neurons heal at such a slow rate, if I get overloaded thats when the mix ups/ white outs happen' I adapt to try to limit this with limited success , so living in slow mo, like if I open up the throttle, the brain stalls, so finding it hard to apply the use it or lose it analogy, I hate ! not a word I like to use when mid sentence / action or thought my mind go,s blank like the inside of a table tennis ball ( or a stunned mullet as us kiwis would say ) the confused look on peoples faces , when they cannot understand why, I have taken to saying excuse me, I have a head injury an some times this happens, but this would mean nothing in the world of employment ? please remember we all have this in varying degrees, people can and do recover but unfortunately not to order

vini and others,

That "mind going blank like the inside of a table tennis ball" sounds so familiar. My wife can see these instances by the look on my face. Sometimes, I will get stuck in a stare, usually with a stern facial appearance.

Regarding the fatigue, make sure to eat a good morning meal and lunch. Maintaining good blood sugar is very important. Here in the US we have TV ads for drinks that support mental awareness. Most have DHA and other good stuff. Be sure to feed your brain even if you short change your body. Get to understand the Glycemic index. It relates to how long a food will take to be digested and absorbed. Refined sugars cause spikes, complex carbs and proteins take much longer. The alcohol is a known problem, but also MSG, aspartame, sucralose and other excitotoxins.

Let those friends who show concern know how to help you. If they understand why you need to leave an environment (noise, lights, chaos etc), they can be more supportive.

Download and rpint out Dr Glen Johnsons TBI Guide at www.tbiguide.com It is about as good as it gets for PCS support and knowledge.

Good luck as you consider these life changes. They are worth it in helping you have a more stable life.