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Topic: Hello Clusterheads! (Read 474 times) |
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KJ
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Hello Clusterheads!
« on: May 15th, 2006, 6:37pm » |
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I'm new to the board, but have been a ch for over twenty years. Thought I had them beaten for the past few years, but the beast is back and he means business! Took an OTC antihistamine the other day...thought maybe allergies were a factor...got the worst rebound headache ever! Although I've never seriously considered suicide, I did want it to end by almost any means possible. Does that make sense?
Anyway, after reading some stuff here, I consider myself lucky...for now. I had a chronic period in my thirties, and now I am episodic and the spells are less frequent and less severe. My heart goes out to all of you, and I want you to know you have another brother here who "gets it". Knowing I'm not alone helps me at two am when I'm pacing, rocking and head banging. Keep the faith!
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BobG
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Re: Hello Clusterheads!
« Reply #1 on: May 15th, 2006, 8:10pm » |
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Welcome to the board Jim. Can I call you Jim?
Sorry to hear your bouts have returned. Sure hope it's a short one.
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Stay stressed. Never relax. Never sleep. Ever.
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Gator
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Re: Hello Clusterheads!
« Reply #2 on: May 15th, 2006, 8:16pm » |
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Welcome to the website. Sucks that you had a reason to come looking for us, but damned glad you found us.
As you have no doubt discovered, the links to the left have tons of good info in them. There is more info on the OUCH website. Read everything you can, take the Cluster Quiz and print stuff out that seems applicable. Unfortunately, because of the rarity of the disorder, you may end up teaching whatever doctor about CH.
Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH.
http://www.brightok.net/~mnjday/chtherapy.pdf
Here is a link to some non-prescription alternatives different people have used to help with the pain:
http://www.ouch-us.org/chgeneral/nonmed.htm
If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:
http://www.drugdigest.org/DD/Home/AllAboutDrugs
Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.
If you need assistance is getting your meds, the Partnership for Prescription Assistance website has links to hundreds of programs to help people get the meds they need. Check them out here:
https://www.pparx.org/Intro.php
Oxygen is an excellent abortive. Works for most people when used properly. Defintely try this. As well as it works, I have a hard time understanding why more doctors do not prescribe it. It must be used correctly to work, though. Get it prescribed for up to 15 lpm through a non-rebreathing mask for no more than 20 minutes. If your doc won't prescribe it for you, you might try welder's O2. It's the same pure oxygen used by medical suppliers. Many people here use it and would be more than happy to help you set it up. Here are some links that tell about using O2:
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
http://www.headaches.org/consumer/topicsheets/oxygen.html
http://www.chhelp.org/mhni.html
Here is a link to a letter that may help explain things to your friends, family and co-workers.
http://www.ouch-us.org/chgeneral/colleagueletter.htm
Again, welcome to CH.com. There's no better place in the world for info and support of cluster headaches.
Gator
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pattik
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Re: Hello Clusterheads!
« Reply #3 on: May 15th, 2006, 8:22pm » |
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Welcome to Clusterville. I can vouch for the effectiveness of oxygen as an abortive. If you have never tried it, I would recommend that you look into getting some. Sorry you had the need to find this site, but the wealth of info and support should really help.
Pat
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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GuitarBill
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Re: Hello Clusterheads!
« Reply #4 on: May 16th, 2006, 2:45am » |
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on May 15th, 2006, 6:37pm, Kingjames1 wrote: Although I've never seriously considered suicide, I did want it to end by almost any means possible. Does that make sense?
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More than I'd like to admit...until I found this message board! Hang in there bro and let us know what's goin' on as much as possible....
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Pffst! Yeah....define "headache"...
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ShaRonDiPity
New Board Newbie
There's always hope!
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Re: Hello Clusterheads!
« Reply #5 on: May 20th, 2006, 7:31pm » |
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Hello KingJames (Jim?) I'm new to the family too, as well as this is my first post.
History: 60yr. woman, suffered first CH over 20 yrs. ago after minor whiplash injury. Took aspirin by the handful, didn't help. Got minor relief by pounding head on wall. Never diagnosed as CH. Hospitalization and tests by Neugologist - pffft! He prescribed Darvon - sure!!! Episodes subsided after initial 4 month 1 or 2 bout DAILY cycle (THANK GOD and who knows why) until 10 yrs. ago. Short cycle of 2 wks with 1 or 2 nocturnal bouts ... then gone again until 2 yrs. ago. I'm fortunate, not to be chronic, I only cycle in the spring .... so far! Here's interesting tidbit. Didn't know until 5 yrs. ago, my 2 brother's, one yr. younger, the other 13 yrs. younger BOTH suffer CHRONIC CH. Both use O2 and Imitrex injections. My sister is chronic migraine sufferer.
This year's cycle (still going) started 4 wks ago, nocturnal ... thankful since I work during the day. Had only 1 daytime bout this time... so far. Home remedies that have given me relief; Use a FAST acting nasal decongestant spray (Oxymetazoline hydrochloride 0.05%) OTC, like 4-Way.... IMMEDIATELY when first symptom appears. If I'm sleeping and wake to PAIN, the spray MAY reduce the pain, but not stop it. Hand held massager applied to pain "points", bridge of nose, eye-brow & forehead area, and temple. Sometimes over entire (right) quadrant of skull and down to shoulder area. I've also used a Q-tip with Vicks salve, applied to inside of (right) nostril, right on the sensitive nerve area (when you find it YOU'LL KNOW IT). Makes me sneeze like crazy, but offer's a little relief.
One trip to emergency during this cycle (not before, but wanted to go). Doc seemed not to know what CH was, but 2 injections of Benydryl and a strong pain med (I should have gotten name of it) within 45 mins., reduced pain to tolerable.
I smoke, am a social drinker, but not while clustering.... well, there's been a few times I've said the "heck" with it, gonna get the "headache" anyway. A couple of days ago I used predinsone (20 mg) because of bronchial inflamation, and suffered only 1 CH and it wasn't as painful as others. I got Imitrex 50mg tablets from my primary doc cuz I TOLD HIM I have CH. I've taken it twice, but not any more effective than my "home remedies. I'm hesitant to take it because of side effects.
I don't profess my remedies will help you or anyone. Just sharing what's sort of worked for me so far.
I found Gator's reply to your post to be helpful with support and links.
I pray your plague with CH goes away, as well as other's who suffer from this excruciating painful condition.
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BobG
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Re: Hello Clusterheads!
« Reply #6 on: May 21st, 2006, 11:50am » |
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Hey ShaRonDiPity,
Question....interesting name. What the heck does come from?
About the prednizone, many folks have used a "pred burst", a week or so of the med to knock down the CH.
It usually is used when first starting verapamil because the verapamil takes a while to get into your system and begin to work.
About the Imitrex, most people say the pills are to slow to work. By the time the pills desolve and get into your system the CH is on it's way out anyway. The injections will work in 10 minutes. Under the 'imitrex tip' button on the left side of your screen is information on how to use less with each shot.
And if the imitrex is to hard on you, many have reported the zomig is better.
But, please don't take my word for it. Ask your doctor.
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rgoldy1121
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Re: Hello Clusterheads!
« Reply #7 on: May 22nd, 2006, 10:07pm » |
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Gator,
Thanks for all the info!!!
James,
Sorry about the beast finding you
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Have a PERKY day!
Bekah
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ShaRonDiPity
New Board Newbie
There's always hope!
Posts: 3
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Re: Hello Clusterheads!
« Reply #8 on: May 23rd, 2006, 9:25pm » |
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BobG .....
Hey ShaRonDiPity,
Question....interesting name. What the heck does come from?
Name essentially derived from a play on my given name and "serendipity" .... I've used that "net name" for almost 15yrs. now. I "tweaked" it a bit for my member name on this site.
I'll try the "pred burst" (saw the taper dose somewhere on this site) starting tonight. I've not used Verapamil .. both brother's and a son-in-law have had no relief from it.
I'm not sure the intensity of my headaches are consistantly as horrific as some CH sufferer's ... although I'd compare the worst of my bouts to natural childbirth of triplets ALL trying to meet the world at the same moment!
One strange thing I forgot to mention. Using the hand held massager on the most tender areas, being the central line of the skull from the crown to the top of the forhead, I've often noticed what can only be described as almost an "audible" pop - much like the release of a stretched rubberband. Simultaneously immediate pain relief begins, which is a God send if I'm only into the crescendo of the CH. This doesn't always happen, as the "pop relief" area seems to be transient, sometimes on the side of skull just above the ear, or even at the back of the skull, midline, about 2" below crown. I'm not sure if other CH sufferer's have the same type of symptoms. Why is it that the two sides of my skull seem so disattached in sensitivity to pain .... I mean by a hair's width?
I read the Imitrex tip, and know both my brother's have used it. Here's a thought. I know that Glaxco Wellcome (now there's a name for you) mfg's only 6mg injector's ... you'd think they'd come out with 2 or 3 mg injector's that would offer CH'rs a broader range of doses, and ya know, they could charge whatever their little heart desires, and make more $$$, cuz I'm sure CH'rs around the world would pay (maybe not like it) what ever it would take for relief. Why isn't the medical profession more of a lobby behind this effort if they can or will only prescribe 12mg daily???? :  !!!!
Well, I'm off to relax before the usual events of the evening begin. Had only 3 CH's last night, but scary, the last one hit at 6:00 am .... while I'm trying to put on make-up and ready for work. 
I will discuss medication possibilities with my doc, although I believe a neurologist, or pain managment specialist would be better enlightened on the subject.
Thanks, Sharon
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BobG
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Re: Hello Clusterheads!
« Reply #9 on: May 24th, 2006, 2:32pm » |
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Quote:| I know that Glaxco Wellcome (now there's a name for you) mfg's only 6mg injector's ... you'd think they'd come out with 2 or 3 mg injector's that would offer CH'rs a broader range of doses, |
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Clusterheads are much smarter that Glaxcoheads. We know a way to get 2mg doses from a 6mg injectors. Click the ‘imitrex tip’ button on the left side of your screen.
Quote:"audible" pop - much like the release of a stretched rubberband.
"pop relief" |
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You’re weird. You’re going to feel right at home here.
Weird is not a bad thing. Lots of people here are weird. And some of them are very good at it. 
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LeLimey
CH.com Alumnus
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OUCH-US - Less "ME" and more "WE"
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Re: Hello Clusterheads!
« Reply #10 on: May 24th, 2006, 2:38pm » |
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Sharon Bob will tell you weird was invented in Las Vegas.. but I beat him to it!
Welcome, I hope we can give you some answers and you enjoy being part of our family!
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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ShaRonDiPity
New Board Newbie
There's always hope!
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Re: Hello Clusterheads!
« Reply #11 on: May 26th, 2006, 2:23am » |
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on May 24th, 2006, 2:38pm, LeLimey wrote:Sharon Bob will tell you weird was invented in Las Vegas.. but I beat him to it!
Welcome, I hope we can give you some answers and you enjoy being part of our family!
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Hiya LeLimey!
So ok I'm Bob thinks I'm wierd, and no doubt I am, but I'd rather coin the description as "unique" ... after all not EVERYONE on this planet experiences CH ... and from what I can gather by the "polls" on this site, I suspect by comparison to world population, CH'rs comprise a small percentage.
I haven't cross-posted to any other message on this site, so this may not be a global question at this point ... has anyone ever found relief, to any degree, using a hand held massager? (don't get cute here - I use an industrial strength MASSAGER - NOT the cylidrical type customarily used for other pleasures!!!!)
I'm counting the days left in my "cycle", hoping and praying "IT" ends when it should.... cuz 3 months of this torture is about all I can withstand.
Thanks for the kind support 
Sharon
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