I discovered this site about a year ago and I have to tell you, it's been a godsend to me.  I had a lot of guilt about how debilitated I was in a cluster cycle and thought I was just weak.  Not that I would wish this suffering on anyone else, but it is comforting to know I'm not just a whimp.

I've suffered with cluster headaches for about 10 years.  It took 7 different doctors and countless MRIs to finally get a proper diagnosis.  This is my fourth year of treatment and I've yet to find something that works predictably.  Immitrex, lithium, Verapamil, Kudzu, Oxygen, Prednezone, Cayenne, melatonin, b vitamins, cannabis, acupuncture, water therapy...it goes on and on.  I have come to LOATHE the spring--not only because of the headaches but because of the drugs.

In any case, my story is probably the same as yours, but the point here (which I seem to have taken a long time in coming to...sorry about that) is how grateful I am that you all share your stories.  It's a dreadful thing to go through, but for the comfort in knowing I'm not weak, that I'm not alone, you have my endless gratitude and empathy. Thank you!  And nice to meet all of you!

Nice to meet you, too, Jeremy.  Yes, it is a familiar story around here...endless rounds of tests and try this, now try that...all the while we try to explain to others, it's not really a headache!  So welcome. You list all the usual suspects for preventative and abortives, but you don't indicate the levels or doses. We often find drs who prescribe the label max, when indeed we require far more than is normally given in order to achieve good results. For example, label max for verapamil is around 480mg/daily, and CHs can take up to 960mg/daily. Melatonin, at around 1-3mg/daily, while some of us need up to 18-20mg/daily. And O2...so many tell us they cannot abort with O2 and what we are really discovering is they are using the wrong masks, and wrong breathing technique, at too low a flow rate. We need a nonrebreather mask (like the Optimask), breaths that will lead quickly to hyperventilation, and generally a flow rate beginning at 15lpm but really a better beginning can be 25lpm+. So let us know what your Rxs have been and maybe there is some tweaking that can help. In the meantime, blessings! lance

Echoing Lance on checking dosing, etc. It's useful to take a fresh look at old tools.

And, along this line of thought: When someone uses a variety of standard treatments and they don't work and/or work a brief time only, this is a sign that you may not have Cluster!

Sounds a bit nuts until your doc takes a fresh look at the disagnosis thru the filter of these articles:


Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Hey Jeremy - nice to meet you too!  :)

What they said :), plus:

Have you checked out the thread here yet where people are reporting surprising (well surprising to me at least!) results with high dose vitamin D3? It's causing a bit of a stir. Could be a good stir  8-): START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

And have you also read up on the clusterbusters approach- another way that people are reporting knocking out entire cycles?: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

There was a guy on here a year ago or so who had found a great Seattle female headache specialist that was prescribing high flow 100% O2 and everything. Wish I could remember who he or the doctor was. Also trying to remember if we have a list of recommended doctors here or something?