I'm a 33-year-old mom with frequent classic migraines.  For about 20 years, I've also had these odd "attacks" that I'm starting to think might be some variation on a cluster headache.  I remember the first time it happened when I was about 12--seemingly out of nowhere, one eye started stinging/burning and watering profusely.  Sunlight made it intensely uncomfortable. My mom looked at my bloodshot eye and called my optometrist, who Rxed some drops, assuming it was pinkeye.  By the end of the day, it was much better although still a little tender--and by the next day it was more or less back to normal. 

These "attacks" have kept happening randomly, several times a year but sometimes going years between (I've been pregnant/nursing for the better part of the last 10 years--that's helped keep a lot of my classic migraines at bay, too, actually.)  The worst part of the "attack" is usually over a few hours, with some residual tenderness/light sensitivity for 24-48 hours afterward. 

When I first read about cluster headaches, I had this "aha!" moment. . .except that my "attacks" aren't accompanied by the excruciating "kill me now" pain that is apparently a hallmark of cluster headaches?  I do sometimes get stabbing needle-like pains around/in my eye, but (comparing to my regular migraines here) they're relatively mild;  the primary discomfort is the intense burning, stinging sensation in my eye.  It's impossible to drive--all that movement + light is intolerable. 

I know, I know--I should see a doctor about this, but thanks to some personal experiences I'm a little skeptical of doctors' diagnostic abilities, especially when it comes to something this. . .nebulous.  So I thought I'd ask here first:  is it possible to get cluster headaches without the hallmark of excruciating pain?  Is that what my "attacks" sound like?  What other possible explanations/diagnoses are there to investigate/rule out?

TIA

Thats a tough one. Well all our attacks range in severity....
I had over 9+ years of hell. At Least 1 kip 10 per day without 1 day off ever. Then I took a particular medicine and voila. My attacks have greatly reduced the frequency and intensity.
So I would say it is slighlt possible to have CH but with a Kip 5 or less and by god be gratefully. Anything above a kip 7 is inhumane. Count your blessings.

Anyone else like to chime in and agree/disagree?

I do not think there is no right or wrong answer. But there is people here with much more experience than me.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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Painless Clusters are reported in the literature but a very rare beast.

Consider that avoiding doctors because of some bad experiences leaves you in a vulnerable position.

For folks with Cluster, the biggest probelm is locating a doctor with good training/experience in a rather complex area of medicine. BUT, with a good headache doc you have the best chance of getting both an accurate diagnosis and treatment.

You will get recomended docs here from members and it would be helpful to explore  the following sources. In general, avoid neurologists and pain clinics. Neros. have very limited education/training re. complex headache disorders...hence, the emergence of headache specialists.
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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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

You will probably need to see a doctor eventually to confirm any self-diagnosis, but in the mean time, take the "Cluster Quiz", which can be accessed from the row of links on the left side of your screen.

I too had classic migraines through my 20's, and was right around your age before I had my first distinct CH. For the first several years, my attacks were fairly mild--in the pain level (PL) range of 1-4. I completely skipped my yearly episode the year I was pregnant. Estrogen is probably helpful, because after menopause, I learned the true meaning of PL  9's and 10's.

I'm hoping what you're experiencing with your eye is not CH, but learn the other autonomic symptoms which accompany the pain, in case they show up. It might also be helpful to keep a record/diary to track your symptoms.

An interesting question Hollybird. As Bob has commented there are documented cases of painless CHs, just like there are painless migraines (silent migraines). I've experienced the silent migraines myself and they are confusing at first as I'm so used to knowing just what do to when based on the pain level, location and nature.

So having the symptoms of CH without the pain of CH does not rule out CH but it does not confirm CH since there are many causes of CH like symptoms that are not CH.

The only way to get a definitive diagnosis is to work with a headache specialist.

Hollybird,

It's a sure bet you're vitamin D3 deficient and that deficiency can easily contribute to the frequency, severity and duration of your CH.  Accordingly, a trip to your PCP for the 25(OH)D lab test is a good idea. 

The normal reference range for the 25(OH)D lab test is 30 to 100 ng/mL, (75 to 250 nmol/L).  As CH'ers, we need to keep our 25(OH)D up around 80 ng/mL,(200 nmol/L) in order to stay CH pain free.

If you’re in doubt about starting this regimen read Zd10’s post in the following link:

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

Check your PM inbox at the upper left of this screen.  I've sent you some additional information.

Take care,

V/R, Batch

ClusterHeadSurvivor wrote on Mar 20^th, 2015 at 9:09am:

Thats a tough one. Well all our attacks range in severity.... I had over 9+ years of hell. At Least 1 kip 10 per day without 1 day off ever. Then I took a particular medicine and voila. My attacks have greatly reduced the frequency and intensity. So I would say it is slighlt possible to have CH but with a Kip 5 or less and by god be gratefully. Anything above a kip 7 is inhumane. Count your blessings. Anyone else like to chime in and agree/disagree? I do not think there is no right or wrong answer. But there is people here with much more experience than me.

plus another problem is your kip 10 might be my kip 5

i am british after all ;)

tangerinearmy wrote on Mar 23^rd, 2015 at 9:00am:

plus another problem is your kip 10 might be my kip 5

That is where the Kip scale is very well designed. It doesn't try to measure the actual pain intensity but rather the effect it has on you, so for a Kip 8 "Time to scream, yell, curse, head bang, rock, whatever work's", if that is what you are doing then it is a Kip 8.

Of course the actual intensity will vary between people, but really what matters is the effect of that pain.

Plus does it really matter what the pain intensity is? Pain is pain, especially headache pain that comes frequently enough to impact lives.

On a pain scale of 1-10, 8-9 is all a human being can
endure before passing out.

Hoppy.