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raiderlb
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My first posting!
« on: Sep 30th, 2005, 6:25am »
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Hi, this is my first posting, it’s so nice to find a site like this, I have been suffering with CH’s for 30 years now. I was 16 when I had my first episode, it was so bad that my mother took me to the hospital. Since that time I would have CH’s every 3 or 4 years. The latest started about 2 weeks ago and it has been 6 years since my last series of headaches and they last about 2 months when I do have them. I didn’t know how typical my headaches were until I found this site yesterday. I’m writing this after having my second episode for the night one at 1am and the second at 4 am I’m still coming down from that one, its going on 3 hours now the pain has peaked twice during that time. My headaches are on my left side, it starts out behind my left eye and the eventually radiates down the left side of my neck. I can’t believe when I started reading some of the letters I thought I was reading about myself. The holding of my hand over my eye, my eye watering, my left nostril becoming congested and the pacing.  I have seen 3 GP’s over the years for my headaches so far no drug has helped. Now that I think about it only one has suggested I might have CH’s. The latest GP I saw about a week and half ago he prescribed Maxalt (rizatriptan benzoate). I’m supposed take one when I feel a headache coming on, a little hard to do when you’re sleeping. Needless to say it doesn’t work and for $90 for 9 pills it was an expensive experiment, don’t get me wrong if it worked I would pay twice as much. Question does anyone have pain in their neck where it feels like pinch or stabbing or cramping when your having CH’s? Well I’m going to stop writing now I’m still having a headache and it starting to peak again my eye is watering.
 
Good luck to everyone,  
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unsolved1
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Re: My first posting!
« Reply #1 on: Sep 30th, 2005, 6:58am »
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Hello and welcome to the message board. I'm sorry you had to come looking for us but glad you found us.  
 
Sorry to hear that the Maxalt didn't help. Many swear by O2 or Imitrex injections to abort headaches.  
 
Stick around and read up. There's lots of info here.
 
http://www.brightok.net/~mnjday/chtherapy.pdf
 
Pain Free Wishes
 
UNsolved
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niteowl
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Re: My first posting!
« Reply #2 on: Oct 1st, 2005, 2:39am »
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Hello, my name is Scott and this is my first time on this site also.  So forgive me if thsi doesn't post correctly. Anyway in answer to your question, my neck does get the cramps in it also. I lie down and have my wife roll a towel up and place it under my neck, she then lifts and pulls back.  It stretches it out some and helps with the neck pain, but will not do anything for the cluster itself.
I've been using Relpax, with some success, but as with the drug you tried, it will take a lot of cash and an insurance company that is willing to allow more than 6 pills per month.  Unfortunately these clusters are not understood by the insurance companies, so until they do, I guess we'll keep paying out the you know what for the drugs.  anyway welcome aboard and look forward to chaatting later.
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AussieBrian
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Re: My first posting!
« Reply #3 on: Oct 1st, 2005, 5:06am »
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G'day fellas.  Sorry the beast has found you but you're in the right place now.  Our only real defence is knowlege and information and this is where you'll find lots of both.
 
Regarding neck discomfort, it's not terribly common but it's far from unknown.  For many years I thought the knot in the back of my neck was actually the cause of the headaches.  Seems there's a ganglion of nerves there and I presumed one of them to be trapped somehow and the headaches were the result.
 
A neuro I saw once actually injected some substance or other into the knot in an attempt to break it up.  Very, very uncomfortable - and completely useless.
 
Either way, best of luck.  Keep digging aroud the place and ask as many questions as you like.  Of course there's as many opinions as there is CHeads but where else would you be?
 
Cheers and beers,
 
Brian Down Under.
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Bob_Johnson
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Re: My first posting!
« Reply #4 on: Oct 1st, 2005, 9:08am »
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Yes, had sharp pain in the base of my skull for the first couple of years of CH, then shifted to temple, then eyes.
 
Suggest one of these books as good overview.
 
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...."Wink
 
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.
 
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Re: My first posting!
« Reply #5 on: Oct 1st, 2005, 9:17am »
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Welcome Raider  Grin Lots of helpful information and knowledgable people here, don't be afraid to ask a question if you need an answer  Grin
 
Sean.......................................
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raiderlb
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Re: My first posting!
« Reply #6 on: Oct 1st, 2005, 3:03pm »
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Thanks for the welcome everyone,
 
 One thing I have been trying that I read about on this site is applying an ice to the back of my neck. It did seem to help the first time not so much the second time.  
 
 When I do go back to the doctor I will discuss some of the medications that have been mentioned to me and I have read about.
 
Thanks again
Cheesy
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Ronny
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Re: My first posting!
« Reply #7 on: Oct 1st, 2005, 4:41pm »
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Well hello, Raider.
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Re: My first posting!
« Reply #8 on: Oct 2nd, 2005, 2:48pm »
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Be sure and read about Oxygen.  
 
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
 
it is certainly worth a try and you usually need a script for it.
 
Be well and PF!
-lionsound
 
P.S. Bag of frozen peas works as nicely as ice.
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niteowl
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Re: My first posting!
« Reply #9 on: Oct 3rd, 2005, 12:28am »
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  I frequently try the hot shower, and let the water hit on my forehead and eyes.  Then put the front of my head against the shower wall and rotate it against it.  This works sometimes only for that one particular headache but I know the nest one will be back with 2 hours after I go back to bed.  Worth a shot, I do this sometimes as much as 6 times a day.  So I am very clean, but I'm not doing much for water conservation.  Water bills can get high too, but one does what one has to do.
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raiderlb
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Re: My first posting!
« Reply #10 on: Oct 3rd, 2005, 8:18pm »
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 Hi again everyone,
 
  Thanks for the advice once again, lionsound that’s a good idea about the frozen peas. The headaches have become so erratic. I’m going on my 3rd or 4th week, who’s counting. I thought maybe I was starting the beginning the end of this round because I was virtually PF the last couple of day’s just minor attacks, until today. My first day back to work after a week of vacation, about 9am I got hit with a CH lasted about 30 min., same sharp pain starting behind the eye, eye waters and the pain radiates down my neck. Just had my second attack today lasted about 45 min. I going in wrong direction was hoping they would get sorter in duration. God I really don’t want to go to sleep tonight.
 
 Thanks again
 Undecided
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Kate in Oz
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Re: My first posting!
« Reply #11 on: Oct 3rd, 2005, 10:33pm »
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Hey Raider,
 
Sorry to hear your still getting hit.  I was thinking...uho  Tongue  if heat works for you (?) and you're getting hit during the day how 'bout keeping a hot water bottle at work.   Just a suggestion - really hot works for me - well the pain of face burning distracts from the other pain.  
 
Hope this cycle ends for you soon!
 
Kate
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sassy_lady
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Re: My first posting!
« Reply #12 on: Oct 4th, 2005, 2:52pm »
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Welcome Raider,
 
Sorry you are here, yet nice to meet you, sounds like you are in the right place..
 
PFDAN JOLENE
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