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Cluster Headache Help and Support >> Getting to Know Ya >> Thank You !! Newcomer - My Intro
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Message started by Stevie_1965 on Jul 15th, 2010 at 3:17pm

Title: Thank You !! Newcomer - My Intro
Post by Stevie_1965 on Jul 15th, 2010 at 3:17pm
First, and most importantly, THANK YOU!! for developing and organizing this site.  It's everything I suspect you'd hoped it would be when it was first conceived.

I am 45 years old and am in my 3rd "cycle."  Got my first series in 2006, then again in 2008, and now.  I consider myself "fortunate" in that my cycles (although I'm not out of this one yet) haven't lasted more than 3-4 weeks.

I have not had the opportunity to try O2 yet, but Imitrex (and generic Sumatriptan) have typically worked for me.  Usually, I try to take the medicine right away, but there are always those times when I hope the headache is not really coming (despite the shadow) and I try to save a tablet.  That never works out, I don't know why (well I do know, I want the medicine to last) I do that.  By the time I realize I've goofed, it's too late and the medicine won't "take."

Like everyone else, I am frustrated by the inability of those who don't suffer these dang things (insurance companies, etc. not referring to supportive spouses/partners) to understand their impact.  It seems ridiculous to me that there is known relief (Sumatriptan, O2, etc.) but it can be so hard to obtain.

Finally, although I doubt he'll ever see this, I'd like to publicly thank Dr. Steven Reed who practices in Brooklyn Park, MN for accurately and quickly diagnosing me in the first place.

Thanks again to all who contribute.  You ARE making a difference!

Steve

Title: Re: Thank You !! Newcomer - My Intro
Post by vietvet2tours on Jul 15th, 2010 at 3:57pm
You are going to like oxygen.

           Potter

Title: Re: Thank You !! Newcomer - My Intro
Post by Ginger S. on Jul 15th, 2010 at 8:38pm
Welcome Stevie glad you found us and so sorry you had too.

Read all the info. you can, ask all the questions you have.  You'll be better prepared for it.

Many PF wishes to you!

Title: Re: Thank You !! Newcomer - My Intro
Post by Bob_Johnson on Jul 16th, 2010 at 9:22am
Steve, right off the bat, consider changing from the Imitrex pill to the injection form. The pill is too slow acting for most folks, here, and your delay in taking it further restricts its benefit.

Let me suggest some quick learning. Start with the buttons (left) and the OUCH site, first. Couple of articles as a basic grounding.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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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)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Mgt_of_Cluster_Headache___Amer_Family_Physician.pdf (144 KB | 27 )

Title: Re: Thank You !! Newcomer - My Intro
Post by wimsey1 on Jul 17th, 2010 at 8:53am
Supporters (not insurance companies!) are often at a loss as to how they can help us. Those new to CHs, or newly diagnosed, may want to offer their supporters some advice. I've come up with a list of things I do want from those closest to me:

1.  Take a little time and read this website; I am neither crazy nor suffering from a hangnail.
2.  Assist me with abortives when the pain is too great for me to be able to think straight.
3.  Shield me from "unwanted" outside contacts who may not like my "dance with the beast."
4.  Remind and encourage me to continuously evaluate the preventatives I am taking, and to seek out other, better ways to deal with this.
5.  Talk to me; don't let me sink into a black hole pity party which so easily comes.

Hope some of this helps. Welcome and God bless! lance

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