IMPORTANT!
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Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
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BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
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Pain meds as the sole treatment for Cluster is, by definition, inappropriate treatments. Don't assume that you can't afford a headache specialist until you check with your health service and explore these suggestions:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Most docs simply lack training and experience with complex headache disorders and you will save a heap of pain if you can find some skill/talent.

But try and get a good diagosis before yielding to the temptation to start this and that treatment.
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Some basic learning is needed:




Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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See:
A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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Explore the buttons, left, starting with the OUCH site.
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Print out the PDF file below. You can use it lead discussions with any doc you see re. treatments--and to educate yourself.
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For help with $ for meds:

Cluster Headache Help and Support › Medications,  Treatments,  Therapies › MEDICATION $ ASSISTANCE: 12 sources=UPDATE

I'm not sure if this is the right place to post this or not, but I just read the tip on extanding imitrex injections.  It occured to me that another way would be to modify two injectors by just cutting of a portion of the stem that presses the plunger in the vial.  Find the depth of plung (looks to be about 3/4 inch) and cut off enough of the first injector to just dispense 2 mg, the next would dispens 4 (or two from one that already had two plunged out) then of course the full 6 to get the last two.  Every time I get a script they give me another injector, so I have bunches of them sitting around.  Anyway - that could be an option for those that are a little scared of needles.

The other thing the post did not mention, was cleaning the needle between uses.  That should probably be done.

Hi, new to this site but not cluster headaches.
I am just starting my 7th year with this hell. Normally my season starts around april/may and lasts until june/july. My symptoms are a slight feeling of a dull ache, always in the same area of my right jaw or cheek. If I am at home either in bed or up and around my first action is to get a hot moist towel and cover my right side of my face. Usually by now the pain has increased to behind my right eye.  I can some times control the pain this way. If I am away from home when the same dull ache starts, I hope to God I have a sumatriptan injector with me. This will almost always relieve the pain in 5 to 10 min. I went the first 2 years of this hell not knowing what this was. I finally researched and went to a neurologist for help. Not much help, but she did recommend the sumstriptan. I also use oxygen which also helps. Yes I am a pacer, sometimes a crier and definitely a moaner.

Welcome Hell and Back, and we reckon all headaches are horrible.

On the top left of your screen is a button for the Cluster Quiz. Have a look at it and let us know how you get on.

You might also consider posting on the Gettin' to Know Ya board where you'll likely meet other friends.

We care.

Thank you so much. I shall try those an post back with any news.

Hey ransubs,

You're very welcome.  Have you tried the Vitamin D3 regimen?

It's doing wonders for lots of us.

Peter.

New to site, Just starting to experience the nightmares. Thank God that a ER Doctor listened and nailed it on the head. I Honestly dont know how all of you could deal with this for years on end. It's only been a few months for me and a few misdiagnoses for me from Dental issues, TMJ, Migraines.
Yesterday evening was the worse attack as of yet, Brought me to my knees in tears, and first ambulance ride in my 49 years of life.
Learning very quickly how the insurance companies will pay for any narcotic to “Knock me out” but will only give 1 to 4 ½ day supply in a month, of the meds my neurologists is prescribing. What a Joke.
My “episodes” range from 1 a night to 8 day / night. Like I said, I don’t know how all may be able to deal with IT.
Mike S.
New Market, MD

Hi Mike and welcome, sorry you had to find us.

They say things come in threes, and your the third one the  has paid a visit too! "At your age", in the past couple of weeks. So, read, read, read, lots of information here to help ward off the  and ask  .

Hoppy

As a First Timer myself, I have a question. When I first came here 3 weeks ago, I read something that listed all the abbreviations and short forms that are used on the site.  For the life of me I cannot seem to relocate it.  Anyone know where it is located?

My name is Matt, I live in San Diego, CA. I suffered with CH's for 10 years.  I've not had a CH for many years.  My intention is to help others dealing with this problem and give them any advice that can help them through the pain and difficulties associated with CH's.

G'day drmatt, welcome, and as a medical man yourself I'm sure you're the first to agree that a true diagnosis is a most important first step.

Have you seen our little Cluster Quiz on the top left of your screen? It's far from perfect but it helps many on their quest for an answer.



We also help by pointing people toward qualified and experienced headache specialists in nearby districts because mis-diagnosis of headache problems is terribly common and can lead to dreadful outcomes for all the wrong reasons.

We're all here to help, so welcome aboard,

Having sensations in the places where CH pain occurred, I call shadows.  Like a reminder that the potential HA is there rolling around and could develop any moment.  Remember when you had no HA's there were no sensations.    I have been having CH's for 40 years.   This was the longest break, 5 years, I have had, but they're back now for a week.  Shadows and sensations virtually all day and night, if I am not actually getting hit.

The actions of these CH's will morph into all kinds of new things.  It seems like they always have a new twist.  This week, it's moving, right to left, left to right, who knows what will be next week or next year. No one knows.  Trust your instincts and do what helps you.   Some of the stuff on this site I could never do, like energy drink or caffeine, that would send me off to the ER.   For me, heat pack, not ice, etc.  imitrex is great, but what a next day rebound, ?   Take care, trust yourself. 

Kip

G'day Drei, welcome home, and no need for apologies. We know only too well that all headaches are horrible and we're happy to help in any way we can.

Take a really good look around our happy little site because there's much might be of interest to you, from the Cluster Quiz button up on the left to our many suggestions about preventives and abortives that work (and some that don't).

Ask all the questions you wish because many of us here really do want to help.

Things can only get better,

Brian down under.