Hi Everyone,

I am 25 yrs old from canada and for the last 10-12 years i've been having these horrible headache that come and go periodically, closes up my left eye with pain,clog up a nostril, hurt my upper gum, and make my neck stiff. I have to rock like a insane person in a dark room and try breathing techniques to help the pain go away. needless to say, it hurts.... .. ( don't have to tell you guys i guess )

After probably 15 doctor visits, a CT scan and a MRI i decided to look on the internet, and yesterday i was brought to tears looking at the description of what a clusterheadache was. Every single symptom was bang on!! bang on!!...unbeleivable. 

I am going to go visit my family doctor in a few weeks to see what i can do.

Here's the problem ,  i am in the middle of a cluster and am up to 3-6 headaches a day. Are there any tips from anybody on how to calm down the pain of a attack without meds...

It's just that i fear for my stomach,,  im popping like 10 advil a day...

Thanks for the help all. I am truly greatfull to have found this community and have alot of reading to do.  ( can't beleive i never checked on the net before !  )

Later
Serge

Breathing pure oxygen for a few minutes is highly effective for most of us.

Welding oxygen doesn't require a doctor.

Search for "welding oxygen" on the search box near the upper right corner of your screen.

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Yeah, they're right. Evem though, I don't use oxygen, I've read it's very, very, very useful when having an attack.

I'm going to give you a few tips, even though it may not help, I think they do sometimes..

Have you ever got that.. "shadowing" as they call it here? When I do when I'm about to get a headache, is put an ice pack on my neck. Right where it feels tender, and I take a cold shower to cool down the head, because before I get an attack, I heat the hell up, and the cold shower kinda numbs it..

But, then again.. I do all this to try not get the headache.. but, sometimes I still get one, sometimes I don't. All depends on how life wants to treat me today. Haha.

And Advil works for you, dude? Mannn, I wish. What type of Advil you use? The gel ones?

Thanks for the tip ill try it probably tonight.

As for the advil ,  i'll still get the headache but i feel that it won't last as long.  I'll take 2-4 200mg liquid gels. I also try to breathe only with my mouth and slow down my heartrate, and usually cover my left eye while pulling down a little  ( crazy little things that we think makes it stop faster,, than might or might not work )

later

Hi Serge

  Sorry you're having a bad time with these things . . . but you've come to the right place.

  TRY HARD to get an appointment with your doc as soon as possible.  Copy the info off this board and take with you.  You need a preventative and an abortive.  Don't leave his office without a script for 02 . . . I can abort in minutes if used at the first sign of attack.  Imitrex injectibles also work in minutes, but limited in the amount you can use daily.

  There are several preventatives . . . Verapamil being one of the most prescribed with the fewest side-effects, and sometimes combined with other drugs like Lithium. 

  Possible Non-Med Help:
    See "water X 3" (link on left).  I have used water therapy for five years now . . . It IS NOT easy to do . . . I consume 4-5 quarts of water per day (and take a multi-vitamin).  If I slack up on the water, I'll get hit with a series of attacks.  I used to use Verapamil to good effect prior to having medical issues which required the additional liquids.
     Slam down strong coffee, energy drinks (that contain caffeine and taurine) like Red Bull . . . at the first sign of attack . .. DON'T wait for a full blown attack.  CH attacks ramp up so fast you don't need to let it go full-blown before you start chugging.
      Ice packs on the affected side . . eye, sinuses, back of neck.
      Some use exercise, like jogging (never tried it  . . . I have 02)

  Keep reading . . . keep asking . . . you've found the motherlode of CH info/caring/sharing.

   Be Safe,

    PFDANs

      Richard

Welcome aboard Serge.

First advice i could give you is "throw away the Advil".  It is way to slow to do any good with a CH, even if it would touch it.  All it will do is rot your stomach, eat your liver, and destroy your kidneys.  Save it for a headache ( :D) or a toothache or something like that.  It won't do CH any good.

Secondly, until you can get to your Dr and get a proper DX and some help with prevents and O2 (did I mention O2?) try an energy drink with Taurene like Red Bull, Monster, 5hr Energy (my preference) at the very first sign of an attack.  Get it down you as fast as you can drink it down, without pausing for breath if possible.  THey can usually knock one back for me in 5-10 mins.  Won't usually totally kill one, but will knock it back to a semi-bearable level.  My preference is 5Hr Energy because it doesn't bother my stomach as badly as do the others if I use them to often, and none of them will bother it as badly as all of that Advil will do.

Third, read, read, and then read some more  of the info available here.  Don't be afraid to ask questions as they come up.  Find what info you can on your own on here, but there is an awful lot and it can be hard to dig it all out on your own.  No honest question is a dumb one, although sometimes you may get some dumb answers. ::)

Jerry

I find that my headache and blocked nostril improve noticeably, soon after downing a can of Red Bull (the only brand available locally).

I found this interesting, in the Wikipedia entry for taurine, under the heading 'Toxicity', "... suggests a potential to stimulate the hypothalamus and to modify neuroendocrine function".

Not sure whether it's the taurine, the cafeine, or the fact that I've read it helps a lot of other CH sufferers, but it helps me. 

I hope you find it helpful, too.  :)

Kudzu Herbal Supplement

Quote:

Kudzu is a plant originally imported from China.  Extracts from the root of the plant have been used for centuries in China to treat hypertension, migraine, allergies, angina and as a treatment for alcohol abuse.  It is being used experimentally by a group of cluster headache sufferers in treating their cluster headaches.  Anecdotal evidence seems to indicate that Kudzu works for many of those who take it.

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I use Kudzu and it's easy on the stomach and I have a very sensitive stomach.  This and the O2 should help get you through until you can see the Doc.

Good Luck to you!

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Here is a technique that is used by Charlie. I took the liberty of copying and pasting it here (I don't think he'll mind):

Dr. Wright’s Circulatory Technique

What follows is a technique learned from my neurologist:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck.

Were in Canada are you from?

Educate yourself on the benifits of o2.

All the best

If you do not have access to a headache specialist then you will have to educate your doc--assuming his is open to receiving material from you. In any case, I'd print out this entire article for your own learning and offer a copy to your doc.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END 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)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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