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New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Just found this site and I'm already in love w/ it
(Message started by: UpTheDownwardSpiral on Oct 12th, 2007, 2:57am)

Title: Just found this site and I'm already in love w/ it
Post by UpTheDownwardSpiral on Oct 12th, 2007, 2:57am
Hi everyone!  My name's David.  I'm a 22 year old male and I believe that I most likely suffer from cluster headaches.  I just discovered this site searching for information about cluster headaches.  I've been treated for migraines with some medication called Migratol (sp?), which worked sometimes.  I just learned about cluster headaches a couple weeks ago.  My headaches are usually on one side, I get a ganglion lump on the back of my neck sometimes (which I didn't know was a symptom until tonight, I hope the ones I get are related to CH, most doctors just tell me everyone has lumps on their head and neck), pain behind the eye, sweating and feeling overheated on the side of the headache.  I've been so desperate I've used ice packs on my overheated red ear before.  My headaches are so bad sometimes it hurts to walk.  Each steps sends vibrations up to my head, which doctors have told me is very strange, and as I can see now it's not.  I feel alot more encouraged to go to a doctor with the information I know and find out if it's definitely what I have after reading more in-depth information about CH.

Peace!

Title: Re: Just found this site and I'm already in love w
Post by Bob_Johnson on Oct 12th, 2007, 11:18am
Please take the time to explore the buttons (left) and the OUCH site (which has much material). Consider:

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.

AND see,

http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
=========================================================================
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.plainboard.com/ch/chtherapy.pdf


Title: Re: Just found this site and I'm already in love w
Post by Guiseppi on Oct 12th, 2007, 11:47am
Welcome to the board! It is a great feeling to realize you're not alone and there is hope for managing/aleviating a lot of your pain.

Bob has pointed you to your first step in dealing with these things and that's education. The more intelligently you can speak to a doctor about your condition, the more likely he/she is to listen to you. Start reading like a mad man and try to get a solid diagnosis which excludes anything else that might be happening in your noggin.

If it is CH, get oxygen prescribed, read the link on the left about how to use it and how to get a doctor to prescribe it. Then hang around the asylum with all of us! Here's hoping you find some relief soon.

Guiseppi

Title: Re: Just found this site and I'm already in love w
Post by barnythebear on Oct 12th, 2007, 1:03pm
Welcome to the place where they know how you feel. I was at last diagnosed a few weeks ago after many year of thinking what the hell is this. Had a call from my doctor tonight just to see how things were doing and told him I'm on the my way to the pub!! All you sufferers will know why that means so much!!!! He said that he was not adveresed to look on the web for information and I whole heartedly support that with this site. Melatonin/ red bull have helped me get through the nights and if i'm lucky who knows they may go away.. well at least until this time next year for me. Read the info it is really worth it and try things because it seem that it's what ever rocks your boat.
Good pain free luck!

Title: Re: Just found this site and I'm already in love w
Post by MR_FLOOR on Oct 13th, 2007, 3:58am
After you get diagnosed,and if you indeed have CH which I hope for your sake you don't . Your doctor
will talk to you about preventives,hopefully it wont take to many trial and error attempts to find what works for you. Then from there he will probably talk about abortives o2,Imitrex ect.... What he probably wont talk about is energy
drinks,believe me they work Red Bull,Monster,any thing with  the combination of Taurine and Caffeine in it.

        Well good luck,and I hope you don't have CHs,but if you do take all you have learned from this site to your doctor cause believe me alot of doctors are not very well educated
on CHs I hope yours is.





Dave    

Title: Re: Just found this site and I'm already in love w
Post by DennisM1045 on Oct 13th, 2007, 10:03am
Welcome to your new home David.  

You've already been given some great advise. Read everything, question everything.  There is relief to be had but, unfortunately, what works for one doesn't work for others.

Oxygen and Imtrex injections seem to be the best combination for aborting a cluster headache.  I know they have been a savior for me.  That magic combination of preventatve meds to keep the beast awayseems to be more elusive.  There are lots of options out there.

Good luck.  Let us know how you fare.

-Dennis-

Title: Re: Just found this site and I'm already in love w
Post by CostaRicaKris on Oct 13th, 2007, 6:46pm
Welcome to the board Dave. I understand how you're feeling. It was amazing for me to find the great people on this site and be able to talk to others who understand what I've been going through. But it was equally amazing to finally get hooked up with the right Dr and diagnosis (I just happened to find both at about the same time) Do you're research, and bring it with you to the Dr.

Good luck,
Kris



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