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Anouther newbie (Read 1110 times)
toch33
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Anouther newbie
Apr 10th, 2009 at 2:50pm
 
Hi, i just found this site and am looking forward to exploring all that is on it.  I have had CH since i was 18 and am 33 now with a lovely 4 year remission  Grin but unfortunately Monday i got another one right out of the blue (what a treat  Cry) i am just learning all the treatments available, the only treatment i use is Advil (i chew them like tic taks)   and just suffering through the pain, i live in a rural area so the doctors are not very informed so it is going to be a struggle to get them to realize the pain i am in and to try some different medications to help with the pain.

well that's me in a nut shell TTL
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Jimi
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Re: Anouther newbie
Reply #1 - Apr 10th, 2009 at 3:02pm
 
Welcome to the board Toch.

Gotta say chewing Advils like tic tacs will eventually cause you some problems with the stomach and really do very little for ch's.

Try energy drinks with Taurine and caffeine in it. They help for the small ones but what you REALLY need to read up on and try is breathing from a tank of 02 with a regulator that goes up to at least 15LPM with a non-rebreathing mask. For many, it knocks the ha in 5-10 minutes.

Read up on everything here on the left and good luck to you.
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Guiseppi
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Re: Anouther newbie
Reply #2 - Apr 10th, 2009 at 3:22pm
 
Jimi's right! Careful with that Advil, it'll do a number on the tummy long term. Many are having great success chugging down the energy drinks, might be suprised how much quicker and more effective then the advil they are.

But oxygen....that'll AMAZE you! I can knock the beast dead in as little as 6-8 minutes with 02. I hear you, living in a rural area you will have to educate yourself here and "help" your doc plan your treatment. Glad you found us, welcome home! Wink

Joe
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ClusterChuck
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Re: Anouther newbie
Reply #3 - Apr 10th, 2009 at 3:31pm
 
Welcome here!!!  I am SO glad you found us!  There is a wealth of information gathered here from THOUSANDS of sufferers and supporters.  You have hit the "mother lode" of cluster headache information!

I can't believe I am doing this, but I am going to agree with Jimi AND Guiseppi!  (all in ONE thread, too!   Grin )  Drop the Advil!  It is great for some things, but sucks for clusters!

Read the information over in the tab, on the left side of your screen: oxygen info

Glad to have you as part of our family (but sorry you HAVE to be here)!

Chuck
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CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
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Bob Johnson
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Re: Anouther newbie
Reply #4 - Apr 10th, 2009 at 3:49pm
 
Learning begins!

 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article 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]
============
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Re: Anouther newbie
Reply #5 - Apr 10th, 2009 at 5:01pm
 
Hi and welcome!

Sorry you had to find us, but I'm glad you did.  You have been given good advice.  Start reading and I hope you find relief soon.

pf wishes to you,
Beth
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toch33
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Re: Anouther newbie
Reply #6 - Apr 10th, 2009 at 9:44pm
 
Wow there is lots of info here i really have learned so much like O2 i would have never thought of it, i never had a computer the last time i had ch's  4 years ago so i could not look anything up.
And another big surprise is energy drinks  Shocked is there any particular brand that works, i have never drank on because i am a insomniac at the best of times but if i am already awake with a ch its going to help why not!!

Thank you very much for the support and i am really pumped to look around some more.  
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ClusterChuck
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Re: Anouther newbie
Reply #7 - Apr 10th, 2009 at 9:53pm
 
toch33 wrote on Apr 10th, 2009 at 9:44pm:
is there any particular brand that works,

Yes!

One that you can stand the taste of (THAT may take a while to find!) .. But the real thing is one that has caffeine and 1000 mg of taurine.

Good luck!

Chuck

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CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
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