Hello all-

I was diagnosed with cluster headaches a two months ago by my neurologist.  Many of my symptoms fit (age, seasonality, red/droopy/teary eye) but a few key ones do not.  I am typing this message right now during an "attack."

They're just not that painful.  The things I read both here and all over the internet lead me to believe that I should be on the floor, writhing in agony.  The headaches do suck, and I don't feel well during an attack, but the pain is never more than a 6-6.5 out of 10.  I'd like to think that I'm just that hardcore, and another person's 10 is my 6, but I don't quite believe that.

Another thing is, I can treat my headaches with simple ibuprofen.  I take two and I'm good for at least 12 hours.  Ibuprofen shouldn't work, should it?  Everything I've read says that clusters laugh at ibuprofen.

My neurologist put me on a dexamethasone taper, and after the first pill, my headaches stopped.  Then I went through the fun side effects of powerful steroids: appetite/weight gain, irritability, all of that.  Within days after finishing the steroids, they came back, which I have also read is common.  I've had a CT of my sinuses and orbits and my neurologist had me do an MRI as well.  All came back normal.  I've also been examined by an ophthalmologist, who said my eyes were fine. 

I've completely destroyed my insurance deductible, needless to say.

So, my question is, does anyone here have any idea what I might have?  Anyone have "mild" cluster headaches?

Headaches are one-sided, definitely.  My eyebrow area hurts, along with the eye itself.  Interestingly, a week or so ago I discovered an actual bump on my eyeball.  No idea what relation that might be.  I have experienced congestion on both sides, but I've been a "snotty" person my whole life.  There is actually a headache specialist right next to my house (just googled on your suggestion).  Time to see if they take my insurance!

I take it that this is your first experience/Dx of CH. If that's correct then: very common for symptoms to wander about, change in intensity, presentation, location, etc. for months before settling down into a fairly fixed pattern. So, bit premature to doubt the Dx.

This article gives some idea of the variability which is common to CH.
---
Headache. 2006 Sep;46(:1246-54. 
 
Cluster headache: clinical presentation, lifestyle features, and medical treatment.

Schurks M, Kurth T, de Jesus J, Jonjic M, Rosskopf D, Diener HC.

Background.-Cluster headache (CH) is a rare but severe headache form with a distinct clinical presentation. Misdiagnoses and mismanagement among these patients are high. Objective.-To characterize clinical features and medical treatment in patients with CH. Methods.-We established a cohort of 246 clinic-based and non-clinic-based CH patients. The diagnosis of CH was verified according to International Headache Society (IHS) criteria. We used standardized questionnaires to assess associated factors as well as success or failure of treatments. Results.-The majority (75.6%) was not treated before at our clinic-77.6% were males; 74.8% had episodic CH, 16.7% had chronic CH, in the remaining patients, the periodicity was undetermined because they were newly diagnosed. Cranial autonomic features were present in 98.8%, nausea and vomiting in 27.8%, and photophobia or phonophobia in 61.2% of CH patients. Most (67.9%) reported restlessness during attacks and 23% a typical migrainous aura preceding the attacks. The rate of current smoking was high (65.9%). Half of the patients reported that alcohol (red wine in 70%) triggered CH attacks. Eighty-seven percent reported the use of drugs of first choice (triptans 77.6%, oxygen 71.1%) with sumatriptan subcutaneous injection being the most effective drug for acute therapy (81.2%). The most frequently used preventive medications were verapamil (70.3%) and glucocorticoids (57.7%) with equally high effectiveness. Conclusions.-Apart from the IHS criteria additional features like nausea/vomiting and migrainous aura may guide the diagnosis of CH. A large number of CH patients do not receive adequate treatments. (Headache 2006;46:1246-1254).

PMID: 16942468 
====
But to start your education: see PDF file below and print out the entire article which follows.
----



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]

Quote:


Then it aint CH.

Batch, Joe, Interesting posts. You made me remember something that the Neuro said at the Cleveland Clinic HC. I had severe sinus headaches for years. When this first started getting bad, seemed like this was sinus related and I eventually had surgery to repair a deviated septum. It changed nothing. The doctor at Cleveland said these siinus headaches were more likely precursors to CH. First I'd heard that.

I can't say that I ever got relief from ibuprofen, but they sure weren't what I'd classify as even a KIP 2. You quickly adjust your pain threshold once these buggers start.

Yohan, The intensity kicked up for me starting with severe eye pressure. It felt like my left eyeball was going to explode. I urge you to see a headache specialist, since they are much more likely to have seen CH than your neuro. I went to two different neuros who both misdiagnosed, did a lot of guesswork, etc. before getting me on the right meds. That takes a lot of time, to ramp up, ramp down meds, see if they work, etc. In the meantime, you're dealing with the symptoms. I finally went to the Jefferson Headache Center and got on a fast track to fixing my CH.

-Chris

I'm certainly no expert, but my experience for a long time was similar to yours.  Pretty painful but I was able to pump Ibuprofen all day long and keep a headache away.  Most of them never got to the level of headbanging and cursing my existance.  This year's been different.  I've had less pain free days than painful days this year, and just some all out will-crushing, pride-obliterating, cry-like-a-baby headaches.  And I'm like you, I like to think I'm a pretty tough guy, I never cried from physical pain from the broken wrist I suffered at 12 or any time after, until now.  They may not be bad now, but do not take them lightly.  If indeed they are ch, than the future may hold a rough fight, and it's better to be prepared than sorry.  Having said that, I hope that it isn't ch.  I wouldn't even wish them on Osama, because then he'd be even more insane.  Wishing you many pf days!