M Partridge (2009) “Underutilization of Recognized Treatments for Cluster Headache”. Consultant Live,September 15th (click author to see paper)
Dr. Sewell’s comment:
This is not really a scientific paper, but rather a summary of two talks given by Dr. Todd Rozen at the International Headache Congress in Philadelphia this last weekend. Dr. Rozen is a noted cluster headache researcher and also director of the headache program at Geisinger Health System in Pennsylvania.
Dr. Rozen surveyed 1134 cluster headache patients (77% episodic and 23% chronic) via email to see what treatments they were using to help their cluster headache. He found that, amazingly, half had never tried sumatriptan (Imitrex), and over a third had never tried oxygen, even though thirteen out of fourteen were aware that it was an effective and first-line treatment.
Even more incredibly, 44% of patients had had to suggest oxygen therapy to their doctors before it was prescribed to them, and headache specialists were no more likely to prescribe it than neurologists or even GPs. Once prescribed, fewer than half the patients were given information on the correct flow rate (in my experience, too low a flow rate is one of the two main reasons for failure of oxygen therapy) and only half were told how to use it correctly (in my experience, not using a non-rebreather mask is the other reason). Only two-thirds of insurers covered oxygen therapy, despite it being tried and true for cluster headache. Most patients (70%) felt that preventive medication is just not that effective. The cost of having cluster headache remains high. Almost one in five lost their jobs, and another one in ten had to quit work or go on disability because of it.
Dr. Rozen’s findings underscore the fact that current treatment for cluster headache is dismal. A quarter of patients had taken over ten years to even receive the right diagnosis, despite cluster headache being something that a medical student ought to recognize; even with the diagnosis, half were not seeing a neurologist. It makes me wonder–even if we found a cure, how many patients would actually receive it!
re: oxygen therapy. my neurologist had no idea how much flow rate was proper and didn’t know about the rebreather mask. I learned about the mask through Clusterbusters and the flow rate from you Dr. Sewell and it has been very successful with aborting my cluster attacks. In speaking with many sufferers this is a common cry. Shame on the doctors – how come they are not educated on this and how can someone get them educated so more sufferers don’t continue to suffer that have never discovered you or Clusterbusters.
Shame on the patients, more like! How come cluster headache patients are not writing to their congresspeople, or the heads of medical school, complaining about the three hours instruction on headache care and management that the average medical student gets? How come cluster headache patients aren’t outside the 22% of medical schools that offer no instruction on headache management at all waving picket signs? If you want something to happen, you have to make it happen!
Golly, doctor (my favorite one, by the way) – we patients have no idea how long you study what – but one would think a neurologist would have more than 3 hours of training in medical school on headaches if in their office profile they state they treat headaches right up there as a specialty in fact – at least the ones I have seen…Yes, they were treating Parkinsons, and other neurological problems but headaches were definitely mentioned…so 3 hours? I would have thought out of all those years in school they would have more training. They were administerng Botox and such (not to me) and those awful occipital nerve blocks… ouch – only 3 hours? That’s just scary knowing they are sticking that great big needle in the base of my skull . Hope they have been practicing a lot!
Guess I never thought of writing to my Congressman – he GIVES me headaches!
You are right – get proactive to get things done – now we know! Medical schools – yes – Congress? I don’t know about that – they take too long for the results we need.
Thanks for a great website & your education.
Sandi Suddaby
Sarasota, Florida AP
I wrote a comparable post about this topic but you did a greater position
Hi Dr. Sewell, my husband has suffered ECH since 1998, he typically has 2 yr remission between cycles. When we first saw our doctors back then, we really got no help and have been dealing with these headaches on our own. This Jan, when his cycle started again, I was researching and found CH.com and Clusterbusters. We have gleaned so much information in these last 4 weeks.
http://journals.lww.com/ejanaesthesiology/toc/2010/12000
I was wondering if you were aware of this study, and if, in your opinion, it might support the fact that low flow oxygen actually can exasperate CH as it has a decreasing effect on Serotonin levels. Thanks for any insight. I appreciate all your past and continued work on helping us understand this horrible affliction.
Respectfully,
Holly
http://journals.lww.com/ejanaesthesiology/Abstract/2010/12000/Supplemental_oxygen_reduces_serotonin_levels_in.4.aspx
Hi Holly–
No, I wasn’t aware of the paper–I don’t subscribe to too many Anaesthesiology journals! Looking it over, it seems as if the authors were arguing that the gut is very susceptible to low oxygen levels, which often leads to nausea and vomiting after surgery. By giving supplemental oxygen, you can prevent this. One way that the gut signals that it’s not getting enough oxygen is to release serotonin into the bloodstream. So if giving supplemental oxygen both prevents nausea and vomiting and also lowers serotonin levels, then you can make the argument that the reason that there’s less nausea and vomiting with supplemental oxygen is that the gut is no longer oxygen starved, which is what the authors do in fact argue. (Alternate explanations would be some effect on the nausea center in the medulla, etc.)
What does this have to do with cluster headache? Not a lot, I suspect. You have to remember that serotonin is an ancient, ancient chemical, that evolved a very long time ago, and whatever function it had for that worm wriggling under the sea, it’s since been coopted for extra functions all over the body. It’s used as a neurotransmitter. It’s used by platelets. It has an effect on blood vessels. And so on. So just because you see “serotonin” in the title of a paper, you shouldn’t AUTOMATICALLY assume that it has relevance for cluster headache. I’m not saying it doesn’t, mind you, but not every paper that talks about the head is going to say something relevant for cluster headache, either.
What do we know about serotonin and cluster headache? For one thing, there’s a difference between peripheral levels of serotonin floating around in the bloodstream (which is what’s measured in this paper), and central levels (in the nervous system)–they aren’t necessarily the same. Peripheral levels of serotonin tend to be somewhat low to begin with, but they don’t change during cluster attacks. In migraine attacks, peripheral serotonin levels drop, but it’s thought that’s a symptom of the attack, not a cause.
I’m not aware that low-flow oxygen makes CH worse. I thought it was ineffective at worst–my experience is that flows of 12L-15L/min are usually required. What’s your experience?
Dr. Sewell,
Sansert worked for me several times. Do you have access to the studies or case reports that resulted in taking sansert off the market?