Wsnurse,
Sorry to be so slow in responding... The Wx here in the Puget Sound area of Washington has been cold and clear for the last week so I've been out with the chainsaw doing my Paul Bunyan thing cutting up fire wood...
I'm also sorry you're having such a rough time... I know what you're going through... and there's a few things we can do that should change things for the better.
For starters, it appears the anti-inflammatory regimen is providing some help in lowering the frequency, severity and duration of your CH. This is a good sign and something we can work on to make it even more effective as a CH preventative.
The first thing you need to do is see your PCP for a lab test of your 25(OH)D serum concentration. Be sure to discuss the following when you do....
If your 25(OH)D serum concentration is less than 60 ng/mL, you can increase your daily vitamin D3 intake to 20,000 IU/day for a couple weeks plus take a 50,000 IU vitamin D3 loading dose once a week on top of the daily dose. You'll need two of these 50,000 IU vitamin D3 loading doses (one per week) over the 2-week period.
At the end of the 2-week period you can drop back to your regular vitamin D3 dose of 12,000 IU/day plus Omega-3 Fish Oil, 400 mg/day magnesium and the rest of the vitamin D3 cofactors
If your 25(OH)D serum concentration comes back around 80 ng/mL, you're likely suffering from another comorbid condition that's consuming vitamin D3 metabolites leaving too little to prevent your CH.
If this is the case, you can also safely elevate your 25(OH)D serum concentration up to 100 ng/mL using the loading schedule above to see if that helps reduce the frequency and severity of your CH.
Note: In case you think your PCP will get hissy or go into fibrillation over the vitamin D3 doses and resulting 25(OH)D serum concentrations, download and print out the following link ahead of time and take it along when you go in for the lab tests:
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You also need to work with your PCP to determine if you have another comorbid condition. Comorbid conditions like this can be viral infections, (colds, flu) or bacterial infections... Urinary tract infections are very common. Allergic reactions are also major consumers of vitamin D3 metabolites.
All of the above conditions lead to inflammation and an immune system response. Inflammation and an immune system response consume vitamin D3 metabolites rapidly.
Finally there's another category of comorbid medical conditions that impact on the metabolism of vitamin D3. These include hepatic, renal, thyroid, parathyroid, pancreatic and GI tract insufficiencies. Your PCP will know how to test for these conditions.
The next thing to look at is diet. Avoid all sugars, glutens and peanut products... Eating alkaline forming foods is a good start. I also like the GOMBS diet, (Greens, Onions, Mushrooms, Beans-Berries, and Seeds-Nuts). A handful of each a day can work wonders... If you Google "GOMBS diet" and "Alkaline forming Foods" you'll come up with plenty of things to try...
I read through your posts and it appears you were also having a problem with oxygen therapy. We can fix that problem.
You need to start using the latest oxygen therapy procedure that involves hyperventilating with room air for 30 seconds following by inhaling a lungful of 100% oxygen and holding it for 30 seconds. You keep repeating this sequence until the CH pain is completely gone... Four to 5 cycles like this is usually sufficient.
Reply #2 at the following link will walk you through this method of oxygen therapy.
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This procedure works great with the ClusterO2 kit from here at CH.com and oxygen flow rates as low as 5 liters/minute. Hyperventilating with room air will also prevent the feeling of panic you get when CO2 levels rise as a result of low lung ventilation.
Take care and please keep us posted.
V/R, Batch