We have all faced the problem of determining what type of headache we have when there are many dozens out there. And then we know that there are also many disorders which appear to be Cluster but which are not.

Assuming you have Cluster, you still have the need to have a good doc in your camp to guide treatment.

All by way of saying: fine a good headache specialist. NOT any neurologist--too many lack training and expeience with complex headache disorders. So,

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.  Call 1-800-643-5552; 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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But learn in the meanwhile.

 
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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And explore the buttons, left, starting with the OUCH site.

demonh8r wrote on Mar 12^th, 2010 at 10:00pm:


That's pretty darn unlikely. If you have already read everything available, you wouldn't have suffered through the extreme pain peaks that you have to this point.

Yes, your symptoms do sound like Cluster Headaches to me, but getting a medical diagnosis on the internet probably isn't your best course of action.

Part of what Bob posted for you was intended to help you find a qualified doctor who can work with you to lay out an effective treatment plan. A truly qualified doc will make your life bearable in one big hurry instead of guessing.

Marc

only 1 or 2 a day?  hmmmm.....you are very fortunate! 
no droopy eyelid?  hmmmm....take the cluster quiz on the left and follow Bob's recommendation to find a qualified specialist

I consider myself very fortunate to usually only have one a day. Rarely, I will have 2. I have never had mine skip a day during a cycle.
I am new to this site as well and we really need to listen. These people know what they are talking about. I would never claim that I have read everything there is to read about these darn things. Everyone"s experience is different. I have always suspected an allergy of some sort but have never been able to determine what it could be. I am confident that one day we will have the answers.

demonh8r wrote on Mar 13^th, 2010 at 3:56am:

Don't fuck with Bob.

       Potter

Welcome,

If your looking for somewhere to start and gain the answers you seek have another look at Bob's cut and paste..


Lefty

From what I read on this site the beast is different for everyone. When I first started with this pain, almost twenty years ago, it was a lot like what you are describing. I was told they were migraines. They would come in cycles lasting eight weeks or so. Over time they changed. Their frequency changed from every 2-3 days to now 3-6 per day during peak cycle. Yes, it sounds to me like CH. Obviously you’re in extreme pain. We all get the pain or we would not be here talking about it and trying to help others understand it. Many people have found ways to fight the beast. For me O2 has been a savior. If you get on it at the first sign of it coming it can stop it before it gets started. If that doesn’t stop it many people get relief with meds like Imetrex or Maxalt MLT. Like others have said find a doctor who knows what CH are. There are ways to fight back. I  hope this helps. Peace Hickory.

Ugh, don't give him caffeine - or kudzu.

That's all stuff that can help but doesn't work for everyone.

Does the dude have CH or CPH?

Yes, get yourself to neurologist - in the meantime, any general practitioner worth their copay will prescribe two things you can try that will rule things out.

CPH is a subset of CH, which since you're not female, seems unlikely, and since it's really just "super advil" it's probably not going to work, but you can ask to try Indometacin. It will, in all likelihood, do nothing - but the good news is that if it does nothing you do not have CPH - which is rare, but the drug is cheap.

The more likely aspect, you having CH, you can get a prescription for (wait for it) Imitrex Statdose 6mg Injectible.

Once you're comfortable with using it at the onset of your headaches, you can learn how to use the "imitrex tip" on the lefthand side of the page to get more then one shot out of a single dose container - but obviously you'll use it a few times to see if it even works to abort your headaches first.

Imitrex is not a painkiller. Imitrex is not opiate nor narcotic. Imitrex does pretty much nothing other then stop the weird headaches that we have. No - you do not want to be taking lot of this drug for a long period of time, but if it stops your headache quickly there's a really good chance that yes, indeed, you have CH.

It's kind of like an easy finger prick test.

CPH, here ya go:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

It's a lot like CH, but is relieved by indomethacin. No one really knows why, but it works. It's like a subset of CH so to speak. It's even more rare, so it's even less likely you have it, and even less moreso less likely since you're not female, ya know?

And seriously, if you're in pain, look into the Imitrex injectable. As for topamax - that takes up to 30 days to get into your system at therapeutic levels so a "sample" is kind of a joke. It is not a narcotic or painkiller or any sort - it has to build up in your system over time.

Hi demonh8r,
All these guys are right that there are two important things you must do (1) Familiarize yourself with the information on this site and this message board (2) Get a Neurologist with CH knowledge and experience (I like Bob's succinct guide)

Since you asked for opinions from sufferers, I'll give mine. For what it's worth, it certainly sounds like CH to me.

I may be speaking out of my a** but you need to try aborting these things with Sumatriptan injections and pure O2 inhalation at high flow rate through a non-rebreather mask. Not only might these treatments bring you relief, but (I think) the success of these treatments will go a long way in confirming this tentative CH diagnosis.

Living with pain is hard, but being unsure of your diagnosis exacerbates it. I hope you can get some relief and clarity soon.

Best,
Rob

yea that sounds like ch to me.