Hi, I know and totally respect that you all don't do diagnosis, but I'm desperate for some help, and wondering if you could help me figure out if my headaches could be (not are / are not, but could be) clusters.  Whatever they are, I know they're a bit unusual and so far my neurologist doesn't want to call them anything other than 'unclassifiable' headaches. Basically, I am just hoping that if any of you have been formally diagnosed with cluster headaches but have slightly unusual symptoms like me that would encourage me. 

So, here's my story... 

My headaches started 54 days ago on 1/14. I had never had any previous headache problems asides from your very occasion minor ones.

When they began they were usually triggered by coughing or sometimes lifting, followed by brief intense pain near the top of my head on the right side, which dissipated fairly quickly but then I was left with a moderate headache for about an hour after that. 

Over the next two to three weeks the connection to the triggers became weaker and weaker and I began to have the headaches with no discernable trigger at all. I also began to get intense pain in, behind and around my right eye in addition to or instead of the spot on the right side at the top of my head.

Finally, after about three weeks, I also began getting a dull pain at the back of my head and in my neck, also on the right side. 

I get headaches every day, but they are not constant.  They have increased in frequency since they began.  They have always been more common in the PM hours.  For the first month or so I almost never had them in the mornings or AM hours.  I have been getting them more in the mornings, too, recently. 

In terms of duration, it's a little bit hard because I feel like they kind of come in waves but I'd say they tend to last from 30min - 3 hr. 

In terms of intensity, there's a lot of variation, both from day to day and from headache to headache within the day.  Thankfully, the majority of them I'd put about a 7 on the kip scale - painful - but not at the level of what some of you have to deal with regularly.  Some days, perhaps two a week, I get lucky and only max out with 6's.  A couple days a week, I get 8's.  And about once a week I do hit that 9-10 range where I'm about to lose my mind. I have no idea how you guys deal with that on a daily basis. [As an aside, part of me is really scared because I am a little afraid this is getting worse, thankfully not quickly, but I don't know how I could handle those any more often - I'm actually shaking a little bit as I type this.]  While initially, I thought of my headaches as getting worse through the day, worst being in the evening, the worst ones to date have actually been from 11 pm - 2 am and have started to wake me up at night - but this has only started and happened a few times the past couple weeks or so. 

Also, in terms of the autonomic effects.  I do sometimes, but don't usually have these (the eye tearing and the runny nose just on the right side).  I have them more frequently with the more intense headaches than the less intense ones, but it's not a perfect correlation either, occasionally my eye/nose will go nuts with a minor headache or I'll have a crazy headache but get next to nothing from my nose/eye. 

In case you were wondering, I don't have nausea or visual disturbances of any kind.  I do usually have intense light sensitivity and a little bit of sound sensitivity.  I do therefore like to seek out dark quiet places and if the headache isn't too intense I do like to lie down, but when it's intense I have found it necessary to move.  Initially, I would writhe/thrash about in bed, but the last time or two I have taken to the more typical pacing interspersed with beating / throwing myself into the couch.  (Although I there is an impulse to beat my head against the wall there is still just enough of me that is scared of hurting myself that directs me into the couch.)

So, this part sounds like cluster headache, right? Especially with my right eye watering and nostril running?  Except that this is only like once a week and the other six days a week my headaches probably lack the tearing eye and running nose and the pain is a couple crucial notches lower. 

Ok, on the treatment side, I've had the MRI/MRA and they're negative, no tumors, no aneurysms, etc.  No signs of abnormal cerebral spinal fluid pressure, although I have not had a lumbar puncture to date. 

My neurologist has me trying Topomax.  I'm in week 4 up to 75 mg 2x daily.  Doesn't seem to be doing anything yet. 

I've got a new pair of glasses (a very minor prescription) which doesn't seem to have done anything yet but it's only been a few days.

I've been seeing a chiropractor.  This has helped the neck pain.  I also discovered that if I press HARD on a particular area at the base of my skull at the onset of mild/moderate headaches that this seems to reduce the pain.  It's not a silver bullet, but it has a meaningful effect.  I only figured this out recently, so I've had limited chances to try this, but unfortunately, the one real bad headache that I've had since I figured this out it seemed like this completely failed or its effect was so minor as to be to be worthless - in any event before too long I was in too much pain to continue pressing the back of my head.  The chiropractor has me taking Mg and Adreno-tropic supplements.  I started the latter first I think they may have had a very minor positive effect.  I started the latter recently and I do think they may have given me more energy but I don't think they've done anything for the headaches.

I believe my maternal aunt was diagnosed with hemicrania continua, which if I understand correctly is a type of cluster headache, but an atypical one.  I am pretty sure that's not exactly what I have because my headaches aren't continuous, but it makes me wonder if I might have some sort of cluster headache, if perhaps an unusual one. 

I was hoping that I might find others, even if just a couple, on this site, who have headaches like mine who might know what they are and how best to treat them (like typical clusters? or differently?).  Or if these are within the range of typical clusters, please tell me. 

At any rate, any thoughts, comments or encouragement would be welcome.  I'm trying to keep my spirits up, especially for sake of my family, but it's a struggle at times.  I'm not sure If I'm really a clusterhead or not but I really appreciate your letting me post here because I feel really alone right now.  It seems like nobody knows what my headaches are or what to do about them or what I'm talking about.  What I've read on your site isn't necessarily a perfect match but it's the closest thing to my experience that I've found.  I don't want to force a square peg in a round hole, and I don't want to invade a forum for a group of people who very clearly need a space to deal with their pain, but I could use some community and I don't know where else to do.  I pretty sure I don't have migranes (no nausea, no aura, etc.) and I'm pretty sure I don't have tension headaches (the pain is sharp, always, only on the right side and can start/stop fairly quickly) so I'd really appreciate it if you let me hang out here with you for a while anyway, at least until I can figure out what my headaches are.  I am not dealing with kind of pain many of you are every day, but I do hurt every day and some days I hurt like you. 

Thanks.  That was cathartic.  I had a good cry writing that last bit.  I hope that's ok.

Again, any thoughts would be welcome. 

Vince B.

Thanks.  Right.  Some basic personal info would probably be helpful, too. 

I'm a 35 year old man, married with two young children, ages one and three.  My wife has been trying to be supportive, but it's hard, taking care of the kids with less help from me.  Even so, she has been a real support. My parents also live nearby and so I see them about once a week and they also offer some support and encouragement.

I have a PhD and I'm a technical consultant specializing in advanced analytics/statistical modeling.  I usually work about 45 hrs/wk but it varies. There can be a fair amount of stress sometimes but thankfully there's also a fair amount of flexibility (which has been a godsend with the headaches).

I live in Evansville (southern) Indiana in the US.  I travel a moderate amount, mostly here in the middle US.  I make it to Chicago about every month or six weeks and I have two sisters and in-laws there.  I'm in Nashville pretty frequently these days too. 

Anyway, thanks for the welcome.  I'm definitely checking out all the info on the site.  Hope the background info helps.

Vince

Welcome Vince

You're currently going through what all of us have gone through as we worked to get a diagnosis for our headaches. I remember all too well what it was like having this "unknown" cause of pretty horrible pain made all the worse by not having a diagnosis.

As Brian said, you need to work to get this diagnosis to happen. If one doctor won't diagnose, find another knowledgeable, experienced doctor who will.

Hope you get your diagnosis soon as that is the first step to being able to treat whatever it is.

Thanks to all for the encouragement.  It's just kind of frustrating.  I want to press my neurologist to be more aggressive in trying to figure this out / do something about it, but I don't know what to propose other than oxygen (which I do plan on asking for) and perhaps the vitamin d3 blood serum test - anyone other than maz have thoughts on that?  I am just afraid he's going to say, well, ok so Topomax didn't work, ok, let's try drug X, go away and don't bother me for two months until we see if that works.  Sorry for the rant.  I just don't know what to do.

It is always a balancing act to walk between addressing the pain and finding the cause of the pain. CHs are not just annoying they are beastly, and so the natural human tendency to do anything, anything at all, to make the pain stop is very strong indeed. So I understand your willingness to take steps in that direction. But keep in mind that Bob is also right. Anything you take or do that addresses just the pain could delay or even prevent a diagnosis. To some degree Maz is also right. There are no definitive tests for CHs, just process of elimination. Often headache specialists will start with the assumption you do not have CHs and then offer treatments designed to identify or eliminate other conditions. It's only when none of those work that you begin the hard work of finding abortives and preventatives that might work for you. Frustrating to be sure, but necessary. If your neuro is not a headache specialist you really should look for one. Blessings. lance

As you anticipate, travel with O2 isn't very practical. But there are other abortives which have a good track record and in pill or injection form. See/print the PDF file, below.

Imitrex leads the pack for fast action but only in the injecton form. Pill and nasal spray too slow acting for Cluster.

My personal favorite is Olanzapine: nearly as fast acting as Imitrex injection but with convenience of a pill and much less expensive than Imitrex.
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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