Drew,
Changes in CH cycles are quite common for both ECH and CCH sufferers. A high cycle is characterized by an increase in the frequency, intensity, and duration of CH. This can also make oxygen therapy less effective with longer abort times. Why this happens was something that caught my attention so I've done a lot of research in an attempt to determine the cause or causes.
BTW, I think you just sent back the very best abortive available for cluster headache when you returned your oxygen therapy kit…
The most frequent reasons why oxygen therapy fails to work properly is the flow rate was either too low or if it was high enough to support hyperventilation, folks were not following the right procedures for use and were breathing oxygen too slowly.
Were I in your shoes, I'd call the supplier and order up some more oxygen, this time with a regulator good for 25 liters/minute. If they won't send you a regulator with that high a flow rate or don't have any in stock, buy one from outlets on the Internet or from eBay.
A good CGA-540 regulator that fits the larger M-size oxygen cylinders with a 0-25 liter/minute selectable flow rate and DISS fitting for a demand valve will run $90 to $130. Flotec Inc. makes two excellent CGA-540 regulators that feature 0-60 liter/minute selectable flow rates with barb and DISS fittings for $140 and $190. They make these regulators to order and are the only manufacturer I've found that makes 0-60 liter/minute medical oxygen regulators. I have two of their InGage™ series 0-60 liter/minute regulators, one for my home oxygen therapy kit, and the other for my roadie M60.
I don’t get any kickback from Flotec and I've yet to hear any complaints about their 0-60 liter/minute regulators from folks who've followed my suggestion and purchased one. I've posted photos of both below.
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I was averaging three attacks a day so kept three of the M-size oxygen cylinders on hand as a one-month supply. The tally sticky on the cylinder indicated I got 30 aborts from one of these big hummers. I also use either the O2PTIMASK™ kit or the Carnét oxygen demand valve to abort my CH. Both methods work equally well and each has it's advantages.
This is the same regulator and oxygen demand valve that Dr. Rozen is using in his study of the demand valve method of oxygen therapy.
As far as oxygen therapy procedures go, a flow rate of 25 liters/minute is essential to support hyperventilation and higher flow rates will work even more effectively with shorter abort times. You'll need flow rates this high in order to push your system into respiratory alkalosis. Most folks know when they've reached that point because they start feeling the symptoms of paresthesia during oxygen therapy. These symptoms include a slight tingling or prickling of the fingertips, lips, or back of the neck. Some folks also experience a slight dizziness.
These are all good indications the user is hyperventilating correctly and long enough to push their system into respiratory alkalosis. Again, the minimum oxygen flow rate that supports hyperventilation is 25 liters/minute. I use 40 liters/minute until the abort after an initial jump start flow rate of 60 liters/minute for up to a minute to push my system into respiratory alkalosis as fast as possible.
If you didn't experience any of these symptoms using oxygen therapy, your flow rate was too low or you were not breathing fast and deeply enough during oxygen therapy. Exhaling completely with an abdominal crunch is important. This is called forced vital capacity breathing and it will expel CO2 from your lungs as fast as possible. I tell the folks I coach to "Squeeze till you wheeze" when they do the abdominal crunch when using this breathing technique.
This forced vital capacity breathing technique is simple and easy to do. You can practice it now with room air. Exhale forcibly with your mouth open and jaw dropped like saying the word "Haw" and when it feels like your lungs are empty, they're not, so do the abdominal crunch and hold the tummy/chest squeeze for three to four seconds until you hear a wheezing sound coming from your lungs for two to three seconds.
This breathing technique will squeeze out a half to as much as a liter of additional breath from the lungs and this last volume of exhaled breath is highest in CO2 concentration because it's been in the lungs the longest.
After two to three seconds of wheezing, inhale as fully and as rapidly as possible then do the forced exhalation technique again and keep repeating. If you're doing this correctly, you should start experiencing the symptoms of paresthesia in three to four breaths.
The other two most common reasons why oxygen therapy doesn't work as effectively as it should are a low arterial pH (too much acid) and some form of allergy that results in neurogenic inflammation, or a combination of the two.
Both the low pH and neurogenic inflammation conditions result in, or are characterized by, vasodilation so make the cluster headache triggering mechanism (what ever that is) more effective and that leads to an increase in the frequency, intensity and duration of the CH as well as increased time to abort with oxygen therapy. There are occasions where the increased time to abort is so long it appears oxygen therapy isn't working at all.
As I indicated earlier, I've done a lot of research and testing on myself on this topic and the simple solution that works best for me when I go into a high cycle is to take a combined buffering and anti-inflammatory regimen of minerals and vitamins.
Thia regimen consists of two calcium citrate tablets that also contain vitamin D3, magnesium and zinc. I also take two Omega 3 Fish Oil softgel capsules (1000mg. to 1200mg. each) and 10,000I.U. vitamin D3 softgels.
Diet can also play a role in low metabolic arterial pH so when I go into a high cycle, I also eat less red meat and instead load up on cold water fish like salmon and cod, chicken or pork along with lots of green veggies. I top my salads with lemon juice and olive oil, cut out the bread and lay off the sweets.
You can get all of the above mineral and vitamin supplements at Costco, Walmart or Sam's. They carry similar brands with the same formula. These supplements and vitamins are also available at most food stores.
I've been on the anti-inflammatory regimen since the 4th of October 2010 and have been pain free ever since... My two oxygen therapy kits are in the corner gathering dust on the zip lock bags that hold the mask and oxygen demand valve.
As a side note, I'm not claiming vitamin D3 is the silver bullet that stopped my CH, but having said that, there are a growing number of studies on vitamin D3 deficiency and safe dosing limits well worth reading.
Our skin generates vitamin D3 for free when exposed to direct sunlight and it can make as much as 10,000I.U. to 20,000I.U. of vitamin D3 with as little as 30 minutes exposure to direct sunlight on arms and legs.
However, the skin cancer folks have us smearing SPS 30 sun block all over exposed skin and although this practice has cut the incidence of skin cancer, it's had the unintended consequence of causing a vitamin D3 deficiency for many of us.
See the first following link (refers to researchers at the University Hospital Zurich who claim 10,000 IU vitamin D3/d is safe).
If you think you have a vitamin D3 deficiency, ask your doctor for lab tests that measure your blood concentrations of 25(OH)D, which is the circulating Vitamin D metabolite that serves as the most frequently measured indicator of Vitamin D status. Most of these tests will indicate a normal range for this metabolite at 50 to 70 nmol/L, but some researchers are saying this is too low a normal range and that to be therapeutic, an even higher level is needed.
I've a good friend and fellow CH'er who also suffers from migraines and hemicrania continua. He lives in Florida and finds that direct sunlight acts as a trigger for his HC so his neurologist prescribed a therapeutic dose of 50,000I.U. vitamin D3 a week in a single tablet. He tolerates this dosage with no side effects and feels great.
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Also see the following link that cites a study saying 10,000 I.U. vitamin D3 is very safe. Here researchers tested subjects with 10,000 IU vitamin D3/d resulting in a mean serum 25(OH)D of 215 to 220 nmol/L. This study's results concluded this level of vitamin D3 dosing was also very safe.
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The following link takes you to an excellent article that discusses vitamin D3 safe dosage limits and how a dose of 10,000I.U./d vitamin D3 can be safe for some but become toxic for others if they are also routinely exposed to direct sunlight on arms and legs.
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As always, discuss mineral and vitamin supplements with your PCP or neurologist.
Take care,
V/R, Batch