Tonight has been awful, but better because i have this site.

For the past 15 years I've been told I have chronic migraines, that just don't respond to Normal painkillers. (Took so much Advil my saliva turned brown.

Only this year did a doctor insist I have cluster headaches. Other doctors always said no, women never have them.

But for a long time I have dealt with excruciating pain so bad I have prayed for quick death, and gone to the er. And the pain is awful, but the fear is worse. So many sleepless nights waiting for it, and fear to eat out in public lest I have a headache and fall down from pain. So embarrassing and miserable.

This year, I started beta blockers which I think have had an overall positive effect. (I used to get the headaches like clockwork every tuesday and Wednesday.) now there are breakthroughs about 1-2 times a month, and I am less fearful in general.

Any suggestions for management that I can include?  Thanks everyone.

Hi and welcome. The anxiety about going out will become less over time. The embarrassment of a screamer in public will fade after many years. It sounds like you've gotten some pretty good relief from the beta blockers. Hopefully they will become even more effective. A lot of people on this site have had a lot of success with oxygen, others with triptans or ergotamine. Myself, I'm one of the ones oxygen, triptans and ergotamine doesn't help. I can't tell you what to do, but living as normal a life as the beast will allow is what gets me through, that and a wife who is more understanding than I feel I deserve sometimes. The support of friends can be a help. Don't be discouraged if they don't understand at first or seem to behave like the condition is contagious. Most people try to understand and sympathize with pain, even if they have no clear frame of reference. When you tell them the pain of broken bones and heart attacks pale beside the pain of a headache, they might look at you kind of funny at first, but as they get to know you better, they'll figure out you're not exaggerating. Good luck and know you're not alone.

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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Because so few docs have the expeience/knowledge of complex headache disorders to treat us effectivelyl, suggest you find a headache specialist of at all possible.

What you find here is experience and knowledge but we are no a substitute for a good doctor.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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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Until you have a solid diagnosis of Cluster, avoid the exerecise of random trying-this-and-that. Not wise since there are a number of disorders which mimic Cluster but which are not headache disorders.

Learning about Cluster is essential for your deepening knowledge will give you comfort and allow you to have some idea of whether any doc you sees knows his stuff.
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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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Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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IF you end up with a diagnosis of Cluster, the meds in the PDF file, below, are the types of meds you should expect to be given to you.

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Hi, Lauren, and welcome. Sorry to hear you are in so much pain. We do know what you are going through and we sympathize. But more than that, we have an accumulation of wisdom and practice in managing the beast in our lives. Tell us what you are doing, what you are taking and in what doses to prevent and abort. We're probably been there and can tell you how to tweak or ignore what some doctors may say. blessings. lance

Hi Lauren

It seems all too common for many doctors to just assume that women don't get clusters, although that seems to be changing and there are lots of women here who certainly do have CH.

From your description it sounds like you may have CH or something similar (there are lots of headache types, many of which mimic CH symptoms) but you really need to work with a headache specialist to get a definitive diagnosis.

It's also possible that you have more than one headache type, which might have helped confuse doctors with less expertise and experience around headaches. There are quite a few people here with multiple headache types with the CH / migraine combination being the more common.

If it is CH then you've found one amazing place with lots of information and people who really do know what CH is like as we all either have it or support someone with it.