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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> The Great Unknown
        
(Message started by: waryrpoet on Apr 17^th, 2007, 10:43am)

Title: The Great Unknown
Post by waryrpoet on Apr 17^th, 2007, 10:43am

So I am a newbie to this site. I dont even know for sure if I have CH but from what everyone is descibing its sounds exactly like what I am going through. I started to get these head pains in the left side of my head face and neck about 2 weeks ago. They come and go in cycles like you all say and the beast is unbearable. Ive been to the ER, to the regular doc and am now waiting on my referral to a neurologist. Waiting.....for the unknown, while dealing with the unknown. They gave me Imatrex in pill form and I have taken my alloted doses for 24 hours and am in the throughs of my 3rd raging headpain(about an 8 Kip) that has lasted since 5:30 this morning. Its now 7:45 am thanks to your guys I am drinking water and a red bull simultaniously LOL. Like I said I dont know if this is what I have but it sure feels better to have some folks with similar experiences to reach out to in this time of helplessness. Thanks for listening.~~ Dave

Title: Re: The Great Unknown
Post by Guiseppi on Apr 17^th, 2007, 10:48am

Not much scarier then the "unknown!" Take the cluster quiz on the left, share the results with your neuro. If you're not already doing so, start a head ache journal. The biggest problem with head stuff is getting an accurate diagnosis. In your journal keep track of what time your headaches start, how fast they build in intensity, the approximate number on the Kip scale, how fast they go away. Differentiate between the holy sh%$ in the throes pain, and what many call the "hangover" after effect pain.

Personally I hope you don't have CH! But if it turns out you do, you have found your new second home. Good luck at the neuro!

Guiseppi

Title: Re: The Great Unknown
Post by Bob_Johnson on Apr 17^th, 2007, 11:25am

Start to learn!

http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

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

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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 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: The Great Unknown
Post by waryrpoet on Apr 17^th, 2007, 11:34am

Thank you both for the info and support. I know this website and community in itself has provided me with a ton of great info already and I will definately check out the other references you suggested. I am on my 2nd redbull and the damned beast is finally circling his dish to lay down for a bit I think. Im gonn atry to get a few minutes of sleep so I can try and go to work tonight (first time in a week). Wish me luck!!

Title: Re: The Great Unknown
Post by Rosybabe on Apr 17^th, 2007, 4:44pm

Hope you do not have CH's but if you do..

Welcome aboard!!! [smiley=wave.gif]

Title: Re: The Great Unknown
Post by waryrpoet on Apr 17^th, 2007, 6:18pm

Thanks for the welcome all. You know the depressing thing is I just found out that my referral to the neurologist that I have been fighting for came through but the doc they referred me to is booked out to June 15th. WTF! I have to suffer with this crap for almost 2 months with no solid diagnosis and no relief except Imatrex in pill form. I know its nothing compared to those who were misdiagnosed for years and I should count myself lucky to have loved ones to support me and now you amazing people. I work in a prison and that is mentally stressful enough but now Im afraid. Not of work, but I am afraid to sleep, afraid not to, afraid to go out somewhere just in case the beast decides to make an appearance and just afraid of what the hell is happening to me and how it effects my family. The pain in my head hurts but having to see the look of fear and concern on my fiances face and knowing the helplessness she feels hurts almost as much. Gosh 2 rants in one day. I guess the pressure valve needed to release. Thanks for listening. You all are amazing.

~~ Dave

Title: Re: The Great Unknown
Post by ClusterChuck on Apr 17^th, 2007, 6:27pm

Dave, I am sorry you have to be here. But welcome!!!

That sucks about having to wait that long! Call them up, and ask to be put on the cancelation list.

In the mean time, go back to your GP and ask him if he will prescribe Oxygen for you, as a carry over to the neuro. It is safe, virtually no side effects, cheap, and works VERY well, as an abortive, for most of us! Print out the information <------- over there, on the left margin, titled "oxygen info" and bring it to your GP, so he will see what is required. Just remember, 8 to 15 LPM (litre per minute) with a non-rebreathing mask. Any other amount or mask, most likely, will not work.

Start sucking that oxygen as soon as you feel a hit coming on. The sooner, the better.

Good luck, and keep us informed!

Chuck

Title: Re: The Great Unknown
Post by waryrpoet on Apr 17^th, 2007, 6:42pm

Thanks Chuck, I'll do that.

Title: Re: The Great Unknown
Post by Trooper on Apr 17^th, 2007, 10:16pm

Try calling the doc. back while in the throws of a ha and cry on the phone. You would be suprised at how far that can get you sometimes. If they realise how much pain you are in, they may be able to get you in sooner.

Title: Re: The Great Unknown
Post by waryrpoet on Apr 17^th, 2007, 10:26pm

Thats a grand idea! Ohh if my old Drill Instructor could hear me now!!! LOL Actually I may try that. Thanx Trooper.

~~Dave