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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hi, I'm new to the forum - [long]
        
(Message started by: Backsida on Sep 7^th, 2005, 3:05am)

Title: Hi, I'm new to the forum - [long]
Post by Backsida on Sep 7^th, 2005, 3:05am

Hi @ all,

my (nick-)name is Back and first of all I like to say a big thanks for
this forum and all the information and all the posts.It's a great help
to see that we are not alone.
And sorry, the post got longer as I thought when I started :) and for
my simple english, it's not my native language.

I'm a German and suffer from CH about 16 years now periodic (now I'm
40) and like the most of you I run from doc to doc before, after four
years and two sinus operations, one told me what I have and that I have
to live/suffer with it (and I still do as you can see/read) and that
there is nothing he can do about it.

At this time there was no Internet and (I don't/didn't know) no
medication, so I never took one of that drugs I read now in the
Internet and here. Only Aspirin and normal headache-pills, more for
the mind and for the little after-headache. I know what you think now,
it can't be so bad than (see below) but for me it is bad enough :(
actually I suffer a lot on this. That I never was on medication is
also because I don't live in Germany anymore, I live in Thailand and
work as freelancer around the world (mostly in South-East Asia, in the
moment in Hong Kong) and so it was/is difficult to find always a doc
who now CH and also because I have chronic sinus and any doc tell me
that the headache coming from this and don't belief me and/or never
hear about CH.

About 1 1/2 years ago I worked in Panama, I went to a doctor (a German
too from the Company) and told him the symptoms and I couldn't belief
it, he told me immediately that I have CH. I told him how surprised I
was that he know this and he told me that he suffer on this by
himself. To my question what he do he answered 'nothing'. He told me
that if it not become chronic and I don't feel to do suicide I better
stick with the aspirin, headache--pills and try to live with it
because the drugs for this have to much side-effects and it will not
go away anyway. (That's one of my questions, is this so, what kind of
experience you guys have made with this drugs? When I now finished in
HK and go back to Thailand (150km from Bangkok) I will try this with
the O2 but I don't think that I can find a doc who is fit in CH but
who nows.)

What I do when I have a attack is to let me fall in the pain,
concentrate on the pain and tell myself it could be worst (get
tortured or so) and that it will be over soon [or later :( ]. But this
took a few years. Before I tough I get crazy or will die or jump out of
the window. I looked at this kip-scale and the attacks I get are most
6-7 and 8 sometimes a 9 but that's not happened often and a 10 I never
had (and I don't wont one).

OK, if it is an 8 or 9 I also cray and all this things but I learned
or better what I forced to find out is,that as more as I try to make
it go away and more I get upset as longer the attack hold on. I don't
know how to describe this, I try to find a quit place where I'm alone,
try to get in a special position, head in the neck hands over the eyes
and squeeze so that I can see such red and blue points, rocking with
the legs/knees and concentrate on this colorful what the squeezing
brings - and on the pain. The best is a place were I get fresh air
(difficult to find in the tropics) or a little bit of wind. Normally
after 1-2 hour it is gone.

I mean it is relay not so that I like this. Actually it is so, that in
a attack I think sometimes 'so, that's it, this pain is to much now'
and one time I got unconscious, but after an attack is over I
actually can't belief that I had so much pain and I think/though there
is anyway nothing who or what can help. And ... what is better as the
feeling when the pain go away? :)

Just now (one week now) after nearly 12 month CH free I get a new
period ,so I think I'm one of the lucky ones who have this not so
often. The time in between is most about 9-15 month sometimes less and
a period is about 1-2 month sometimes longer but this happened not so
often. I read a lot here in this forum and also on other websites and
how worst the CH is with other people and what kind of horror they go
trough so maybe I have to say again that I may one of the lucky once
(if it is possible to be lucky with CH) who don't suffer so much
or...hmm, I don't know.

I get mostly only one attack the day/night - most when I come home
from work and sitting relaxed on the sofa or when I sleep. In the
moment I work in the night and the attacks starts mostly between 7 and
9 am and always 1 to 2 hours but and this is new, I get now terrible
after-headache. In the past it was always like this that I got an
attack and as quick as it come as quick it was gone - completely. But
now I suffer the next 10 hours or longer on this after-headache and
this is even worst, because the only what let me get trough an attack
is that I know it will be over soon [or later :( ].
Someone here have the same experience? Because I'm worry now that I
maybe become a chronic or that I have to start with this drugs what
may not help and make me in the worst case impotent (and I just
married and for her it is bad enough).

So, thanks a lot for being here and listen to the sh** I have to
say. I think the most people do not understand when I tell them that I
have 'headache', so it is good to know to speak to people who
understand.

Regards Back.

Title: Re: Hi, I'm new to the forum - [long]
Post by Bob_Johnson on Sep 7^th, 2005, 6:43am

You are in a difficult position, traveling around the world where the quality of medical care is not good. I'd suggest that you print out the document so that you can show it to any doctor when asking for treatment. The author is one of the better headache doctors in the U.S.

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf
--------
I would also suggest that you buy either of these books. The first one is written for doctors; the second one is written for non-medical people. Both quite good. All of this material will give you some medical authority when seeking help. (Have you taken the cluster test? [on the left of this page])

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: Hi, I'm new to the forum - [long]
Post by E-Double on Sep 7^th, 2005, 6:47am

Hello Back,

You've been dealing a long time with this.
Like many you have "suffered" alone for so long.
Know that you are no longer alone and that we are here for you any time day or night!!!

Many people have pain in between attacks.
We tend to call them "shadows", lower level CH that linger. Caffiene can possibly help. It does help many.

You might also have an additional headache type that is underlying and that like some of us have ignored because the CH is drastically and worse to us.

If you can get Oxygen!! This will become your friend.

If you do think you want to go the medicinal route or really just want to know what all of your options are through doctors then this is a great resource to know like the back of your hand...print it out and give it to the doc.

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

Good luck!!!!

Eric

Title: Re: Hi, I'm new to the forum - [long]
Post by paul_pero on Sep 7^th, 2005, 8:04am

Hi Back

Welcome to the site. It has helped me alot. Hope it helps you. If you can get oxygen, then get it. It has worked wonders for me last cluster. It may be hard for you with travelling, but I've seen various threads re travelling with O2.

Paul

Title: Re: Hi, I'm new to the forum - [long]
Post by Backsida on Sep 8^th, 2005, 6:23pm

2Hi Bob,

thanks for the reply and for the link. Next time I go to see a doc I
will take it with me. The books I will also order but not now because
in Nov. I will go back to Thailand anyway. And yes, I did the cluster
quiz. And I now know for long time that I'm a clusterhead. All 'no'
are no and all 'yes' are yes.

If I'm not in a cluster-period I *never* have headache, and I try
everything on (Chinese) alternative medicine. acupuncture, meditation,
massage inhalation of different substances and even go to a monk in a
Temple in Thailand. Smoking and no smoking, drinking and no drinking,
sex and no sex, smoking Grass and not it's all and everything the
same. I have now 3 Sinus operations and one to make the wall in the
nose straight because one doc tough that the wall was deformed and
push on a nerve.

Hi E-Double,

this with the 'shadows' is new for me. I don't think that
I have additional headache because (see up) I never have headache if
I'm not in a cluster. The Oxygen I will try. Here on the work I have a
lot of Oxygen, but this is for welding and I don't know if this is the
same, so I think I have to go to see a doctor but I'm not sure if I'm
covered for this by the insurance this company here provide. So I
think if it come not more worst, I will wait until I'm back in
Thailand, there is everything cheaper.

And thanks a lot for the nice welcome.

Hi Paul_Pero,

also thanks to you for the welcome. Yes you are right,
this site is a great help. Al the information and the most importuned
thing all this nice guys here. I'm glad that I found this page.

You guys hang on and read you soon,
Back.

Title: Re: Hi, I'm new to the forum - [long]
Post by E-Double on Sep 8^th, 2005, 6:41pm

Over here in the states...Welders oxygen is the same as medical grade so many that can not get it through insurance or have no insurance get welders tanks and convert the regulators.

Good luck!!!