Hi all,
I'm Kristina.  So glad to find this board.

I first got an excruciating headache on Christmas morning 2011.  I was 7 months pregnant at the time and so we weren't able to really investigate.

I was simply cooking breakfast when suddenly out of nowhere, I got an excruciating pain behind my right eye.  It radiated through down to my teeth.  My eye swelled, teared up, my nose ran uncontrollably.  I was screaming in pain...I have given birth to 4 children and this topped that.  It lasted about 15 minutes and was then gone...though I was left with a dull throbbing in my head.  I had 2 more experiences that day, and then it went away.

I thought it must have been an isolated incidence until 3 weeks ago, when it happened again.  This time, I was in an airplane.

I went to see my doctor today.  She thinks it is cluster headaches.  I am being sent for a scan of my brain to rule out a brain tumor, but she is thinking cluster headaches.

I came home and found this board.

I have some questions...
Can you just suddenly start to get these, out of nowhere?  I am 32.  I do recall getting this type of pain twice before, on the same weekend, when I was 20.  But other than that, nothing.

I do have frequent lightning bolt type sensations behind my eye now and then since the first episode on Christmas, but it isn't overly painful.  Could this be residual pain?

Thanks for reading.  I admit, I'm kind of scared.

Thank you for the reply!  And thank you for the quiz.  My answers are pretty consistent with the "you may have cluster headaches."

It's hard to call anything about CH unusual or odd!

I started CH in my teens, and could actually dodge an attack if I felt one starting, and could get to sleep. Didn't have any wake up hits until many years later. It's not unusual, especially in the early stages of CH, to not follow all of the "traditional" traits. Just one of MANY annoying traits of the beast.

One more link:

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if it does turn out to be CH, oxygen should be your first line abortive. I kill my attacks in about 6-8 minutes just by huffing on oxygen. Cheap, safe, no side effects, fast, not much to dislike!

Joe

Your descriptive paragraph reads as though you had been reading this site for ages! Classic symptoms.

Yes, they often start without any preconditions; yes, it may take anywhere from weeks to a year for your pattern of attacks is clear & stable. Variation in quality/degree of pain, site, duration, etc. is not uncommon--so don't get too concerned about such changes--just report them to your doc.

Becoming skilled in self-care is essential since we are the primary care given when an attack hits. ERs are one of the worst place to get good care for Clusters.

So, read much here, starting with the OUCH site on the left-hand buttons; explore other buttons as you have time.

Few basic sourcess:
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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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A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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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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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")



HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Print the PDF file, below, and share with your doc. It's a good tool to discuss options.
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Since, I gather, your doc is not a headache specialist, at least discuss the value of finding a specialist and establishing a consulting relationship.
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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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Finally, print and file for a time when you have time to reflect on the content:

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Glad that you found is, if to bad that you had to!