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Face shield is a good idea Bosco! CHers are allowed to go maskless in some places. Scotland being one! I shop online to save the hassle

Maybe see if you can get away with a face shield? At least that way your not having your air ways blocked and breathing used up o2? I refuse both but I'm a mega jerk face ...

Jseivers, I'm 77. I was Dx'd with episodic CH in 1997 after three years of CH bouts each spring that lasted 6 to 8 weeks. I was Dx'd as chronic in 2005 by neurologists at the National Institutes of Health (NIH) after a year of daily and nightly CH at an average frequency of 3/day-night. I'm still chronic. All I need to do is stop taking vitamin D3 and within a few days to a month depending on my 25(OH)D3 serum concentration, the CH beast jumps real ugly. From my experience and after meeting the several of the top neurologists in the world specializing in the treatment of patients with CH like Dr. Arne May, Dr. Todd Rozen and Dr. Peter Goadsby, all of whom are on the ICHD-3 working group for trigeminal autonomic cephalagias, aging out is not in the cards. After 27 years living with CH and 10 years of dedicated research in the pharmacokinetics, pharmacodyamics, and molecular biology of vitamin D3 it's clear to me, that its capacity to control and prevent CH comes through a process called genetic expression that's made possible by vitamin D3. As CHers, we need to maintain a 25(OH)D3 serum concentration between 80 ng/mL and 150 ng/mL to have real control of our CH like pain free > 95% of the time. That's going to take a vitamin D3 maintenance dose between 10,000 IU/day and 15,000 IU/day for most of us. Some CHers will need much higher doses. Take care, V/R, Batch

Yeah, my CH are episodic too. While I cannot imagine having to deal with the threat of one of these monsters on a daily basis as chronic patients do the blindside nature of the episodic form is no picnic. My tanks are the E size and I do recall my physician informing me insurance now covers this so I may need to find a way to add supplies to my 'durable medical equipment cave'. I just ordered the mask from Clusterheadaches.com so this will help. I have most of the supplements listed above in the house but I'm also a celiac patient so I'll need to order the others from appropriate providers if necessary. Both the Bio Tech and LiveWise state they are gluten free. I suspect certification may not be needed. I'm glad I registered today...this was overdue.

The key word there is "some," and the key issue is causality. Just as is the case with verapamil, more than a few people who have been here have speculated that triptans messed up their cycles or caused them to become chronic. My daughter who has CH has never used verapamil and didn't use a triptan for the first seven years she had CH. In fact, she had no meds, not even oxygen, during that time. Rode out her attacks. Her cycles nonetheless became more frequent, less predictable, and worse (though she isn't chronic). I'm not saying that anybody is wrong about causality issues, because nobody knows, but I am saying that tens of thousands of people with CH use triptans and take verap, and they ain't all turning chronic. Whether triptans and/or verap are messing with their cycles, I don't know, but as I said above, for many people things change no matter what they do or don't do. And lots of people stop verap after their cycles without reporting significant effects. Some people take extended release verap and think it's great, others (most others, I think) find that the ER doesn't work very well for them but the immediate release does. As intelligent humans, we're always looking for causality. Is the weather making a cycle worse or bringing one on? Stress? Eating the wrong things? Taking some other med? Probably yes for some of those things for some people and no for others. CH is a crazy monster, and all people are different. If you get your D levels up, verap is likely to become irrelevant to you -- if you're like most people.

Hey Jseivers, Celtic Cluster and BoscoPiko, Here is another chart from the oxygen demand valve method of aborting CH study I ran in 2008 that may help explain why the frequency of your CH goes up after repeated aborts with oxygen therapy. This chart illustrates weekly CH frequency, mean weekly time to abort and mean weekly pain level at start of therapy over the 8 weeks of this study for one of the six chronic participants. The other six participants had similar charts, just not at dramatic in weekly CH frequency range. As you can see, the weekly CH frequency increased from 12 CH/week at start of this study, up to a maximum of 38 CH/week at the four week mark then dropped to 8 CH/week by the end of week 8. This chart helps confirm the frequency of our CH increases with continued use of oxygen therapy up to a point then decreases over time. At the same time, the mean weekly time to abort drops from 8 minutes at the start of this 8 week study down to 4 minutes by week 8. The mean weekly pain level at start of this 8 week study also dropped from Kip-7 down to Kip-4 by week 8. Why this happens is very interesting. It involves what is called vascular toning. Essentially what is happening over repeated aborts with oxygen therapy and hyperventilation is the muscles lining the arteries, capillaries and microvasculature within the trigeminovascular complex tone up (strengthen) like doing curls with a dumbbell strengthens the bicep muscles. This means these vascular muscles become more efficient in effecting the vasoconstriction (narrowing of the lumen) that mechanically helps abort a CH. Of course all this is nice to know, but only a foot note in your headache log if you start the anti-inflammatory regimen with vitamin D3 and the cofactors to control your CH. 82% of CHers respond to this treatment protocol within the first 30 days with a significant reduction in CH frequency from 3 CH/day down to a mean of 3 CH/week. Moreover, 54% of CHers starting this treatment protocol experience a complete cessation of CH in the first 30 days. Over the last six months, these efficacy figures have actually started improving. This is due in large part to the use of the sublingual Micro D3 nanoemulsion taken during the initial loading schedule. The existing loading schedule called for 600,000 IU of vitamin D3 taken at 50,000 IU/day over 12 days. It resulted in a mean increase in serum 25(OH)D3 of 60 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration. The new loading schedule calls for 700,000 IU of vitamin D3 taken at 140,000 IU/day over 5 days. It results in a mean increase in 25(OH)D3 of 70 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration. This new loading dose is made up of two (2) Bio-Tech D3-50 capsules/day (100,000 IU/day) and 0.5 mL/day of the Nutrasal Micro D3 nanoemulsion taken sublingual under the tongue, (40,000 IU/day) for a combined loading dose of 140,000 IU/day. Both the Bio-Tech D3-50 and Nutrasal Micro D3 shown below are available at amazon.com As this is a more aggressive loading schedule, labs for 25(OH)D3, calcium and PTH are now required two weeks after start of this loading schedule. These labs are essential to ensure serum calcium remains within its normal reference range. The rationale for this new loading schedule is illustrated in the following normal distribution curves for 25(OH)D3 lab results at baseline and after 30 days on this treatment protocol. This new loading schedule will shift the green normal distribution curve to the right so that the mean 25(OH)D3 is close to 90 ng/mL after five to six days. This also results in a faster favorable and CH pain free response. Of course there are speed bumps on the way to a CH pain free response. The most common speed bump is an immune system response to allergens that release large quantities of histamine. As histamine to a CHer is like Kryptonite to Superman, this is where a first-generation antihistamine like Benadryl (Diphenhydramine HCL) comes into play. It blocks the histamine H1 receptors and this helps prevent the neurogenic infrlammation associated with allergic reactions. As BoscoPiko pointed out, some CHeers have a reaction to Benadryl. Fortunately, there's Quercetin. It's a plant and fruit based flavenoid that acts as a good antihistamine, but larger doses are needed to get the same response as Benadryl. Hope this helps. Take care and please keep us posted. V/R, Batch

Thanks for all the responses. Very helpful information.