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Cluster Headache Help and Support >> Getting to Know Ya >> Hi from a new clusterhead.
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Message started by Candlestick on Mar 30th, 2009 at 9:22pm

Title: Hi from a new clusterhead.
Post by Candlestick on Mar 30th, 2009 at 9:22pm
Hi everyone, i have been diagnose lately, after 4 years of sufering.
Each spring same storie, full blown headache, rhinorrhea, red eye, pupillary miosis and lid ptosis, at least once a day for a month or more.. i have seen many doctor even went to the dentist. :D
This is freak'n killing me.  But at least now i know what it is and i found this site.  This is somehow comforting..  because this pain is unbelivable.

Hi have read most of the informations i could find on the internet and on this site to try to find a solution to this pain.

Here is what works for me.
I run, run the hell out of me for five minutes, and it seams to work.
It kills the pain very effectively.  (but i can still feel the shadow  :( ) It probably have the same effect as oxygen, ( haven't try oxygen yet).

I have an appointment with a neurologist soon.  Hope to find more answers.  I also seriously consider to stop smoking( could it help?) :-?

Title: Re: Hi from a new clusterhead.
Post by Linda_Howell on Mar 30th, 2009 at 10:01pm

Quit smoking because it is in your over-all best interests to do so health-wise....but if you're hoping that this will stop the headaches...sorry.  Actually nicotine is a vaso-constrictor and that is what the meds we take to abort have in them.  Vaso-constrictor properties I meant, not Nicotine.   LOL

Read this until you know everything there is to know about 02 and you can then present this knowledge to your Neuro.

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I also hope you will read the other links here regarding preventatives to talk to him about.  Lithium, Verapamil, Caffergot, etc.  


I saw that you were one of the latest newcomers earlier today, so I am glad you posted.  welcome to the best site on earth for information and support.   You are not alone anymore in this.  We will try to help you sort through any questions you might have.

Linda

Title: Re: Hi from a new clusterhead.
Post by ClusterChuck on Mar 31st, 2009 at 12:27am
WELCOME ABOARD!

Linda gave good advice!  (even if she is a mere female, and blond, and a left coaster ...  ;)  ;D ...)

Oxygen is a life saver for many of us!

Heavy exercise works for some of us, and yet, due to the orneryness of the beast, it is a trigger for others!  I am glad you have something that works well for you.

What you need to do, is read all that you can from this site, and the OUCH site.  Take notes, print things out, so that when you see your neuro, you will have information available.  YOU may have to train the neuro!  It is not unusual.  The more you learn, the better you are equipped to fight the beast.  Try to see if the neuro will work WITH you.  That is important!  He/she needs to listen to your suggestions and take them seriously.

Any how, welcome to the loony bin family, and keep us informed as to how your visit went.  

Please ask all the questions that you want.  We want to help!

Chuck

Title: Re: Hi from a new clusterhead.
Post by Bob_Johnson on Mar 31st, 2009 at 8:31am
 
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 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)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Title: Re: Hi from a new clusterhead.
Post by Guiseppi on Mar 31st, 2009 at 11:08am
Bob's given you your required reading assignment! We suffer from a rare ailment so it's important you educte yourself first, and become your own best advocate. Then you can work in partnership with your medical care provider to manage your treatment.

30 years ago a long hard run was my only effective abortive, it was at best 50% effective. Now I can abort an attack in 6-8 minutes by sitting and breathing pure oxygen. I'm not in nearly as good shape,  ;D, but neither do I fear the beast like I used to.

Damned glad you found us, hoping we can help you.

Joe

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