Intractable head injury

[Luzern61]

I had a domestic head injury in 1979 when I fell against a garage door. I was not rendered unconscious. I went to see my GP 2 days later who also sent me to a hospital for an x-ray. Nothing abnormal was reported and I returned to work a week later. After about a month my sleeping pattern became disturbed. The GP gave me sedatives to take for 3 weeks but sleep remained a problem. He then revised his prognosis and declined to indicate any time it would take to clear up.

Since then - and it's 45 years ago - the symptoms have ranged from a mild inconvenience to what I would describe as a 'paralytic nightmare'. I have suffered excruciating headaches which give the impression of a magnetic pull as though the brain is in a vice. I often experience intense irritability, lack of motivation, impaired concentration and intellectual capacity, along with persistent insomnia. It has had an enormous impact on my quality of life. At times it has felt utterly debilitating and I wonder if there's any point in carrying on.

The other worrying thing I have experienced is the almost total lack of empathy or understanding from the medics I have seen. I no longer go out of my way to see them any more, as all that happens is that I finish up receiving denial, ignorance and intimidation. Comments I have received include that' I am going through a mid-life crisis' to being neurotic. I have been labelled as a hypochondriac. I really wish that they could feel what it's like in my skin.

I totally agree with the statement I have heard expressed: that the biggest disability is a lack of disability. Head injury is often just that: the hidden disability.

I do not feel that I am unique in experiencing these symptoms, bearing in mind that regrettably hundreds of people suffer head injuries through falls, road accidents and the like. And yet I cannot say that I have identified any other TBI patient who has related these kind of symptoms after all this time. Please would those people step forward and relate your experiences for the benefit of us all.

[WonderingWanda]

I am sorry that you have received such little support so far. Your symptoms sound similar to many on this forum and I do believe that persistent concussive syndrome is lifelong in a significant number of people.

A personal friend of mine had a TBI a decade ago and was advised to take antidepressants when she became unable to function for months afterwards. So when you had your head injury there was even less information than there is now.

It may be a good idea to contact the Headway support team to see if there is a solution for finding you the help you need in your area. It’s so dependent on where you live as to what services are available.

You have found your way onto here and that’s a start. Hopefully we will be able to make you feel that you are not alone.

[Luzern61 in reply to WonderingWanda]

Thank you so much for responding.

As you say it is quite hit and miss as to the treatments and attitudes the survivor experiences. Ironically, looking back I think the best prognosis was given to me by the GP I first saw in the first 2-3 months, namely that the recovery phase depends upon the severity of the blow or 'shake up' of the brain. What the GP did not, or could not, tell me me at that time is the magnitude of the symptoms that would lie further down the line or the time that recovery would take (but he must have appreciated these as I remember him writhing in his chair). Since then NO ONE medic has supported his prognosis - and I've even discovered that my medical notes from that period have been mislaid (shock-horror), so that's a trail that has gone cold too.

I was told, however, that 99.99% of cases do eventually recover, and that's the thread of hope I have been hanging on to for the past 4 decades. But it tests the patience and fortitude of the survivor to the utmost limit and patients need all the reassurance and understanding that they can get. To do otherwise is to do them a great disservice.

I hope this may resonate with all who are reading this.

[Leaf100]

Hi Luzern61Unfortunately what you have experienced is all too common.

General medicine does not recognize anything it can't see.

With head injury there may be a period of inflammation, which melts the tails off the neurons that have part in the white matter and part in the grey matter. This cannot be seen on an xray, catscan, or mri.

Diagnosis then needs to be done clinically , usually a neuropsychaitrist does it because they can rule out all the 'it's all in your head stuff'. Which it is...just not in the way they think...

They can be tough to get in to see. It does help as the diagnosis becomes accepted and that may have some perks. Sometimes medicationsmcan help and they also can help with that.

But, generally speaking, even the treatment you get from them, though helpful in its lane, is not that on point where rehab is concerned.

And everyone's symptoms are somewhat different as it depends on exactly where the damage is.

If you look up Pink Vision here, you will find links to info and research by someone who successfully got themselves through this. You may find it helpful.

It's all pretty much figure it out yourself, unfortunately.

Having said that, it is definitely worth calling Headway and seeing what they've got.

They may know of some other specialty that may be helpful.

Leaf