Hi Mark and welcome

I suggest you get your diagnosis confirmed by a headache specialist as CH is a pretty complex area of medicine and from experience we find that primary physicians, even most neurologists do not have the skills and experience to diagnose and treat CH correctly.

From what you've said there are a few hints around this. Normally to diagnose CH there are multiple tests done which rule out other potential causes of CH symptoms of which there are many, both other headache types but also some accute non-headache related causes. It is standard that these tests include either an MRI of the head and / or a CT scan. So it is unusual that these were not done. Note that this does not rule out CH, it just does not confirm it.

It is also unusual that Aleve (Naproxen) helps. Aleve is an NSAID (Non-Steroidal Anti Inflamatory Drug) which works well for mild pain relief, however it is typical of CH that even the strongest pain killers, like morphine, do not touch the pain of a CH. But when CH is just starting it isn't unusual for the pain to be milder and to then develop over weeks, months or years.

You mentioned Imitrex not helping. If you used the tablet form then this isn't too surprising as it is just not that effective with CH, however the nasal spray and the injection version are pretty good.

Beta blockers can work as a CH preventive, however they are not one of the main preventives used as there are others that are much more effective, like verapamil and lithium. However they are pretty good as a migraine preventive (I use them myself for this purpose). This suggests that your doctor is using migraine knowledge or medication and not CH knowledge. However it is possible that there are reasons in your medical history to not use them.

It is also uncommon for CH to start after the age of 51 (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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All of this makes me uncertain about your diagnosis and hence the suggestion to see a headache specialist.

I'd be hesitant to give blood whilst you appear to be in an active CH cycle as doing so may result in a CH being triggered since it is a common trigger for CH when air pressure drops which is in some ways a similar situation (around dropping the amount of oxygen carried in the blood, one drops the oxygen that is available, the other drops the oxygen carrying capacity).

Keep reading and you'll learn a lot about CH here. Ask all the questions you can think of too.

Your doc looks sharp, on track, from the few comments you made.

Because your "clusters" are developing at age 60--a rather late age for onset, I'd encourage you to print out the PDF file, material below, and give it to him.

(The number of "cluster-LIKE" disorders which are being identified is growing to such a degree that I've stopped adding them to this material, i.e., evern the most skilled doc may not be fully up to date.)
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Cephalalgia. 2010 Apr;30(4):399-412. Epub 2010 Feb 15.

Cluster-like headache. A comprehensive reappraisal.
Mainardi F, Trucco M, Maggioni F, Palestini C, Dainese F, Zanchin G.

Headache Centre, Neurological Division, SS. Giovanni e Paolo Hospital, Venice, Italy. federico.mainardi@ulss12.ve.it

Abstract
Among the primary headaches, cluster headache (CH) presents very particular features allowing a relatively easy diagnosis based on criteria listed in Chapter 3 of the International Classification of Headache Disorders (ICHD-II). However, as in all primary headaches, possible underlying causal conditions must be excluded to rule out a secondary cluster-like headache (CLH). THE OBSERVATION OF SOME CASES WITH CLINICAL FEATURES MIMICKING PRIMARY CH, BUT OF SECONDARY ORIGIN, led us to perform an extended review of CLH reports in the literature. We identified 156 CLH cases published from 1975 to 2008. THE MORE FREQUENT PATHOLOGIES IN ASSOCIATION WITH CLH WERE THE VASCULAR ONES (38.5%, N = 57), FOLLOWED BY TUMOURS (25.7%, N = 38) AND INFLAMMATORY INFECTIOUS DISEASES (13.5%, N = 20). Eighty were excluded from further analysis, because of inadequate information. The remaining 76 were divided into two groups: those that satisfied the ICHD-II diagnostic criteria for CH, 'fulfilling' group (F), n = 38; and those with a symptomatology in disagreement with one or more ICHD-II criteria, 'not fulfilling' group (NF), n = 38. Among the aims of this study was the possible identification of clinical features leading to the suspicion of a symptomatic origin. In the differential diagnosis with CH, red flags resulted both for F and NF, older age at onset; for NF, abnormal neurological/general examination (73.6%), duration (34.2%), frequency (15.8%) and localization (10.5%) of the attacks.

WE STRESS THE FACT THAT, ON FIRST OBSERVATION, 50% OF CLH PRESENTED AS F CASES, PERFECTLY MIMICKING CH. THEREFORE, THE IMPORTANCE OF ACCURATE, CLINICAL EVALUATION AND OF NEUROIMAGING CANNOT BE OVERESTIMATED.

PMID: 19735480 [PubMed
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Look under: Medications,  Treatments,  Therapies › Important Topics >Cluster-LIKE headache

Mark Olson wrote on Apr 6^th, 2014 at 8:15pm:



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

This has the standard definition of cluster headaches:

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So 45 minutes is a "normal" duration, with room for them to be both longer or shorter.

For aborting CHs, injectable imitrex and high flow rate oxygen can abort a CH in about 5-10 minutes, which means you can miss out on a whole lot of pain.

I'm pleased that you progressed this to seeing a headache specialist with the correct skills and that you were able to see them quickly. It is common for people to have to wait months to see someone.

I strongly recommend looking into using vitamin D3 which has been a very successful preventive for many. I've been CH pain free for over 2 years using it with some going over 3 years.

The other thing I'd look into is using oxygen to abort CHs. This is how I'd kill my CHs off in about 5 minutes.

If you ever do get over to NZ (just a single flight from either LA or SF to Auckland), then I'd love to catch up too for a beer and chat...

Thanks for the advice.  I got in yesterday morning for the MRI.  I'll be seeing the neurologist again on the 22nd to hear the results.

I did take the cluster survey and did take it in to the neurologist with me.  1-8 were no and the rest were yes, although I do occasionally feel a slight touch of nausea.

Up until last night, my headaches were no more than maybe 8 or 9 on the Kip scale.  But last night, at about 1:39AM, about 30 minutes after I went to sleep, I had head pain that I did not think was possible.  I took two of the diclofenac, and walked around the family room alternating between panting and repeating "Oh God, Oh God, Oh God" over and over again until it finally started to wane a bit.  I didn't have my glasses on so I didn't notice the time it ended.  It seemed like forever.  I sat on the couch, shaking and exhausted and fell asleep sitting up.  I woke up later and went back to bed.

I could not believe how bad that hurt.  I spent the entire day  today dreading the fact that I will have to sleep again tonight.

I have the utmost respect for all of you who have survived this terrible condition for so long.  I had no idea what real pain could be...

If I have caffeine after noon, I can't sleep at all. I'll do it if I have to, but hope there's a caffeine-free alternative.  It sounds like O2 will be in my future assuming the neurologist doesn't find something other than CH.

How have you all been able to take this for all these years???

Hi there.
So sorry you're having such a bad time right now. Believe me, we all pace and pant and pray and curse so we know exactly what you go through. We call it dancing with the devil.
We get through it because it's better than the alternative. While you dance, just keep telling your self "it will go away soon". It always does.

I urge you to get oxygen therapy as soon as possible. I promise you'll be glad you did. I've only had it for a few weeks myself and can't believe how much easier it makes it to cope with this thing in our heads. But, and this is important, You must have a flow of at least 15 litres per minute or more, and a non rebreather mask. If you get either of those wrong it won't work. Check out the "oxygen info" yellow highlighted tab on the left of your screen. I keep mine by the bed. When I wake in pain, I can be asleep again 20 minutes later.

Also, imitrex injections ( the tablets are no good) are a life saver if the cost isn't preventative. I never leave the house without a days supply. If you can get them it's a good idea to stockpile a few while you are out of cycle, then the price doesn't hit too hard when you need to use them every day.

I'm glad you got your MRI. It's never a waste of money to rule out something sinister. More sinister than dancing with the devil that is!

Good luck with everything. Come back and let us know how you get along.
Maz.

Thanks guys.  Great information.  Very helpful.  I will take your advice.

FYI, I only had a minor headache at 9PM on Friday night and no headache at all on Saturday or so far today.  I have been pretty happy for the past couple of days....

Hi there Mark. I live in Oakland and work in San Francisco.

Feel free to send me a message if you ever want to meet for coffee and complain about the beast, I know it's rough.

I drink very little so don't have much experience here, but from what I hear from others, and read on medical websites, alcohol will only trigger an attack if you are already in a cycle. In remission you should be OK.  ENJOY IT WHILE YOU CAN !