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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Just been diagnosed
        
(Message started by: Luchie on Mar 14^th, 2006, 3:04pm)

Title: Just been diagnosed
Post by Luchie on Mar 14^th, 2006, 3:04pm

I was diagnosed yesterday with cluster headaches!
Ive had these headaches for probably the last 20 years, months of headaches and then nothing.
Ive been to the Doctors many times and they've dismissed it or put it down to stress, and tell me to come back if they continued, of course then they'd suddenly stop.
Over the last 4 months ive been in a cluster(im so tired and worn out), so I planned to see the doctor this week, Ive not been terribly motivated because of the previous responses I've got.
Actually I was pushed into making the appointment because i dislocated my arm on sunday night(whilst i was sleeping!:o ) Its happened many times before, i was awake then though.
I couldnt get an appointment with my own Doctor, so I ended up seeing a fill in Doctor who seemed to be doing his practice, he was very entheusiastic and seemed very knowlegable.
He diagnosed my shoulder which i was describing as a muscle strain as a partial dislocation! Well I could see this guy was really on the ball, so i thought i would memtion the headaches, I thought it might be eye strain, and that I might need new glasses.
I think I made his day(two unsual conditions in one day) he certainly made mine fixed my arm and gave the condition a name, and also put a name to my headache problem.
I can't tell you how relieved I felt knowing, the the years of unexplained headaches and feeling confused and like i was crazy, everything was explained.

I am studing communication design, obvously sometimes I get an attack in school, I have told a few of my class buddys, but how can i explain it to the school so that i dont look like an idiot?
I have been off school today, and when i called in i told them i had a migrane, seeing as they seem to understand that, should I stick with the migrane story?

sitting with a level 3
:) :) :)

Title: Re: Just been diagnosed
Post by Bob_Johnson on Mar 14^th, 2006, 4:17pm

First thing would be to find a good doc who can confirm your diagnosis, a doc with experience in treating headache. Then, assuming you have an accurate diagnosis, the key is to learn more than your doctor!

Two good sources:

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

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. 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: Just been diagnosed
Post by Luchie on Mar 14^th, 2006, 5:52pm

Thanks for the link.
I have been prescribed sumatriptan, i have to get it tomorrow the pharmacy had to order it in.

:)

I would still like to know how others explain this rare/unusual condition to places of work etc?

Title: Re: Just been diagnosed
Post by Charlotte on Mar 14^th, 2006, 6:51pm

There is a letter to employees and friends.

It explains very well.

http://www.ouch-us.org/chgeneral/colleagueletter.htm

Charlotte

Title: Re: Just been diagnosed
Post by Jasmyn on Mar 15^th, 2006, 3:05am

Welcome and like Bob said, learn as much as you can about this condition and its treatments, always a good idea to go armed with knowledge when you go see a doc.

Title: Re: Just been diagnosed
Post by sandie99 on Mar 15^th, 2006, 3:29am

Hi Luchie!

Warm welcome! :)

I'm glad you finally got your diagnosis. Lots of folks in here had been suffering for years without the right diagnosis. And I've met many neuros during my ch time and many of them questioned my ch at first.

What comes to your Q about how to tell about ch. The thing is that I'm working on my second university degree. On my first one, BA, I had to tell to my professor about it, because I was hit hard, depressed and could hardly function because of ch. He was the best! He was very supportive and arranged so that I had more time to finish my tasks, which was exactly what I needed. Now when I'm working on my MA, I haven't told anyone. I was hit badly on my first year, but I've been PF now during the second one.

How you tell about ch, is, in the end, up to you. But I had a statement from my neuro, in which she told about ch, how much it had impact on my life and I had printed out lots of info about ch from this site to my professors to read. Personally I would not use the M - word, but if you want to avoid the word "headache" use horton's neuralgia. That's another name for ch.

I wish you lots of PF days. Feel free to email/PM me if you want to. :)

Best wishes,
Sanna

Title: Re: Just been diagnosed
Post by IpityU on Mar 15^th, 2006, 11:34am

Sanna,
i am reading this thread, as I am addicted to this site in hopes of educating myself, children,extended family, regarding the Ch of my dear husband. I like your last entry as I was about to just use the M word with relatives as they just do not seem to want to "get it" I was unaware of the name," Horton's Neuralgia". Some people need a complex name to be convinced!
Bob, thanks for the book info. This will be a great source for my "addiction" when I can not be at the computer..ei..sitting and watching the kiddies at a swim lesson....
Hope it is ok for me to "butt in" as a supporter, here, while not an actual sufferer. You folks are truly helping more than the originator of a thread!!!
Lizah

Title: Re: Just been diagnosed
Post by Luchie on Mar 15^th, 2006, 8:17pm

thank you all.

i think the worst thing with this thing is not being taken seriously, and trying to hide it.
I feel lucky that mine although very bad and long running are not at the level of banging my head against the wall, when its really bad i just need to hide and take the batterys out of my clocks and crawl into bed in the dark, clutching my swolen "chamelion"eye, and wait for it to pass.
More frequently i have the stabbing through the top of my head through to the back of my eye, it doesnt last too long, but i have to stop what im doing till it passes.

I didnt realise that the two things were part of the same thing, and i have been told many times that the stabbing headache is stress!

Almost painfree day today, only 3 episodes, better than yesterday anyway:)

Ive read all the links n info you gave me, i think it will help quite a bit, esp explaining to family etc.

ok off to bed, its late here, hugs

[smiley=snore.gif] [smiley=snore.gif] [smiley=snore.gif] [smiley=curtain.gif]

Title: Welcome Luchie!
Post by Richr8 on Mar 15^th, 2006, 8:21pm

keep reading my freind, and whatever is not covered, just ask.

pf wishes,

rich