help me!

Diane Pritchatt diane at bnclib.demon.co.uk
Fri Jan 17 04:48:36 EST 1997


Dear Gianluk
I am not a doctor, but a medical librarian in the Neurosciences
department of a very large hospital in England.

Our neurologists and neurosurgeons have a lot of experience with
headache problems, and dealing with people who suffer long term pain.

I have in the library a book which you could try to get from your local
library- if you ask, they can probably order it for you, but you may
need to pay for this:-

Sjaastad, Ottar.  Cluster headache syndrome.  London: WB Saunders, 1992.
ISBN: 0-7020-1554-7.  Series: Major problems in neurology, 23.

The book tells you a great deal about all different types of 'Cluster
headache', and the current treatments available, and how doctors
diagnose them, although it is written for doctors, really, so you would
need to go back to your own doctor and ask him/her if you don't
understand anything described in the book.

I really sympathise with your problem.  Since 11 years ago I have had
really awful attacks of neck and head pain, following a car crash.   I
sometimes can't stand up or move my head at all for up to 3 days at a
time.  At one time it seemed I may never be able to work again.  But I
have been lucky enough to come and work here at the neuro. hospital, and
to change my doctor, to someone who is a lot more sympathetic and
helpful.

Do keep looking into things.  But don't get angry and argue with the
doctors.  Play it cool, and just be assertive.  Even if you feel they
are being insulting, don't react.  (I learned this the hard way!)  Just
keep on telling them that the pain is real, that you are having your
life messed up by it, and you need their help.  Ask nicely whether you
could see a pain specialist, but make sure they know you are respecting
their decision over your treatment.  Make sure they know you are
treating them as a member of a team, and that you are also on the SAME
team, trying to aim at the goal of getting your treatment sorted out.

One thing I have learned myself about it all, is that there is not
necessarily a 'cure' as such for some of these problems, but if you can
get to see a pain specialist, they might also help you.  I was very much
helped by such a person, and the biggest thing they did for me was to
listen and take it seriously, and explain things.  They also gave me
drugs to use for the pain which the 'normal' doctors were scared to
prescribe, as they are addictive.  But the pain specialist realised that
I was only going to use them to control the pain, not to get hooked as
an addict, and it is quite surprising how little I need them, as long as
I have the 'security' of knowing I can control the pain if it gets
unbearable.

Another tough thing that took me an awful long time, was having to
accept that I have got this pain for ever.  At 25 (or in your case 22)
you don't want to think that this is your life from now on.  You need to
talk it over, and keep saying the same things sometimes, until one day,
with the right treatment on your side, you can say: 'Well, I would never
have CHOSEN this pain, but at least now I know I can live with it, and
if it gets unbearable, there is x-y and z I can do about it'.

Up until seeing the pain specialist, it seemed all that the doctors were
interested in, was whether it was something fatal, or something obvious,
that they could get rid of quickly!  When it was not, they soon lost
interest, and I got very angry and frustrated, as the pain became
intolerable - which made me fight with them, then I was accused of being
off my rocker! - a vicious circle, basically.

I now have some anti depressants which I use every day.  It sounds a bit
strange, but the pain response in the brain seems to be governed partly
by our emotions.  Since I was in pain, I got very depressed and even
felt suicidal at times.  I have to say I got very close to killing
myself especially when the doctors would not do anything about it, and
actually accused me of being mad.  

The antidepressants are good, because although they do not take the pain
away, I can cope a lot better with it.  This is a treatment used quite a
lot these days in chronic pain.

I hope that you will be able to see someone like a pain specialist,
and/or a neurologist, as they would be able to explain all these things
to you, and to give you the right treatments for your particular
problem.

Take care and be kind to yourself.
Diane

In article <32dc1ac7.1935788 at news.interbusiness.it>, "Gianluk from
G.m.S." <gianluk at thepentagon.com> writes
>I am an italian boy of 22 years.
>From 2 years I suffer of headache. Also taking medicinal I am not able
>to resolve 
>my problems.
>I have contacted many doctors in Italy and they have told me that
>doesn't exist any care.
>The problem is a cluster cephalea , that is the blowing up of the
>brain that beats 
>on the cranial box and it causes me pains.
>If you are a doctor and you are reading this message, I hope you can
>send me an e-mail
>telling me if exist a care or any specialist that could help me.
>My address is: nato at alfa.it
>

-- 
Diane Pritchatt



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