I've a Google alert which is great for finding anything new around CH, which this morning alerted me to:

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I suspect MIA (Migraine Association of Ireland - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) is a bit like OuchUK. However their O2 advice looks to be a bit outdated.


Quote:

A new survey, which aims to determine the prevalence of agonising cluster headaches, is to be launched next week. According to the Migraine Association of Ireland (MAI), which is launching the survey on March 21, cluster headaches are often misunderstood or misdiagnosed and Ireland has one of the poorest records in Europe in terms of providing treatment and medication. Cluster headaches affect around one in every 1,000 people and are acknowledged as being one of the worst types of pain there is. They usually involve unilateral (one-sided) pain that is centred over one eye, one temple or the forehead. Those affected are usually unable to keep still during an attack, with some pacing the room or even banging their heads against a wall until the pain subsides. In around 80% of those affected, the ‘clusters' of head pain last for four to 12 weeks, once a year, often in the Spring or Autumn. They may then disappear for several months or even years - these are known as episodic cluster headaches. The remaining 20% of people affected do not have any pain-free intervals and are said to have chronic cluster headaches. The MAI noted that oxygen is one of the safest ways to treat cluster headaches. In order for this to work effectively, a person needs to breathe the oxygen in at a rate of between seven and 12 litres per minute. The treatment usually starts to work within 15 to 20 minutes, although for some people, the attack is delayed rather than stopped altogether. However currently in Ireland, oxygen for cluster headaches is not listed under the Drug Refund Scheme and is not available on the medical card. Cluster headaches can also be treated with some migraine-specific medications that are available in tablet form, injections and/or nasal sprays. However, not all of these medications are available on prescription and on the medical card in Ireland, and the injections can be difficult and costly to access in Irish pharmacies. The MAI will launch its national survey on Cluster Headache Day (March 21) with the aim of assessing the prevalence of cluster headaches in Ireland and the ease of access people have to oxygen and other medications that have proven effective. For more information on the MAI, click START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Mike,

Thanks for posting this. I have done a bit of work with the MAI in the past and will raise this with them.

Best,

Peter.

Mike,

They changed that article. Not entirely to my satisfaction, as it now says O2 flow rate from 7 to 15 L/min, but at least the 15L/min was accepted as accurate.

See, I'm not a Doctor, so they were not inclined to listen to me....took a bit of convincing.

Best,

Peter.

Good work Peter, whilst not perfect, it is a step in the right direction.

It is amazing how in the medical world that the "Dr." bit means so much and yet it in some ways means that knowledgeable people are ignored as not knowing enough. This is in contrast to our experience where we see how too many doctors are ignorant of the last 20+ years of CH research, even down to simple things like women don't get CH.

i get O2 on my medical card, and zomig rapidmelt  :)

However i have used zomig once or twice in the last year  :)

Thanks Batch for the D3 regimem

Peter,

If you're a member of the Migraine Association of Ireland (MAI), can you provide them with the link to the anit-inflammatory regimen treatment protocol below and associated abstract I've attached. 

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If I stay on schedule, I'll be submitting the complete manuscript for this abstract on 1 May to meet the submission deadline for publishing in the Journal of Steroid Biochemistry and Molecular Biology.

I've also attached the JPG file for the following QR Code that will work to download the treatment protocol to a smart phone if scanned with a QR Code reader app.

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The Smart Phone QR Code Scanner app is free.  It downloads and installs in less than 20 seconds.

Dr. Todd Rozen, MD conducted a survey of 1134 CHers in 2008.  I'll dig up a copy of the two abstracts.  I'm sure the MAI will find them useful if they haven't seen them.

Take care and please keep me posted on their response.

V/R, Batch

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Batch,

Already done and I had a long conversation with them about it.

I'm in regular contact with them so I'll be keeping an eye out to see how, or indeed if, they use the information.

Peter.

Thanks Peter,

That's all we can ask...  I joined an IBS forum for folks with Crohn's, Ulcerative Colitis and other inflammatory GI tract disorders...  I posted a few studies concluding the benefit of vitamin D3 in reducing and in many cases, eliminating painful bouts of GI tract distress and pain. 

I got a few replies saying basically, "That's nice but it doesn't work for me."  When I asked if they had taken more than 6000 IU/day vitamin D3 and gone in for lab tests of their serum 25(OH)D... Their moderators booted me off the site... permanently...

I can't say for sure... but it sure looks like Big Pharma influence at work...

Take care and thanks again for your  proactive efforts in spreading the news about the effectiveness of this regimen in preventing cluster and migraine headache.

V/R, Batch