Thomas,
You've started a great thread and topic. Like so many other cluster headache sufferers, I've had the exact same experience with cluster headache meds that worked for a while then didn't.
I've even found oxygen therapy at flow rates that support hyperventilation took longer at times to bring about an abort. That raised my angst a lot as that is all I've used since 2005 save for an occasional snort of imitrex nasal spray during air travel.
In early 2008 I started asking myself the burning question, Why this was happening? Was it something I was or wasn't eating or drinking that caused the increase in the frequency and intensity of my cluster headaches... At that point, Michael Berger a.k.a. Wildhaus, and I went about a disciplined process of looking for possible factors why this was happening.
I don't have all the answers to why this happens, but I did start focusing on two potential factors that we as cluster headache sufferers might be able to do to control or influence to some extent the frequency and intensity of cluster headaches. These included simple changes in diet along with the addition of certain vitamins and mineral supplements...
In particular, the two factors I focused on were arterial pH and general inflammation from possible allergic reactions.
If arterial pH is low, (below 7.4) there appeared to be an increase in the frequency and intensity of my cluster headaches. Oxygen therapy abort times also increased.
As arterial pH and blood gas measurements are only done in a clinical environment, I started logging the pH of my saliva as an analog of arterial pH using pH test strips from pH ION.
Although there's a difference between arterial pH and that of saliva, saliva pH tends to parallel arterial pH and lags by 10 to 15 minutes as it takes that long for the salivary glands to be flushed with arterial blood and the changes equalized with changes in arterial pH.
My rationale for looking at arterial pH stems from the fact that the body reacts to changes in arterial pH and CO2 levels with a process called homeostasis where it changes the diameter of the arterial vascular system and respiration in order to keep arterial pH and CO2 levels in a normal range.
For example, if the arterial pH is lower than normal, (it doesn't take much of a shift), the body interprets this low pH condition as too much CO2 so dilates the arterial vascular system and increases the respiration and heart rates to move more blood through the lungs remove the excess CO2.
As the pathophysiology of a cluster headache and triggering mechanism are associated with a dilation of the vascular structures in and around the trigeminal nerve, it stands to reason that anything increasing the level of vasodilation also tends to support an increase in the frequency and intensity of cluster headaches. When you stop and think about it, we take imitrex and use oxygen therapy to induce vasoconstriction to abort the cluster headache.
What I was looking for was a trend either side of normal with respect to the frequency and intensity of my cluster headaches. To do this, Michael Berger and I joined forces with Royce Fishman to undertake a pH study by taking saliva pH measurements three times a day over a two week period logging cluster headaches to determine if any relationship existed with changes in pH.
I took the first pH measurement in the morning before breakfast, the second before lunch, and the third just prior to going to bed. I then averaged the three daily measurements to come up with a daily average saliva pH reading.
In order to eliminate as many variables as possible associated with these pH measurements, I tried to take the measurements at the same time each day and I rinsed my mouth with water then waited 5 minutes before taking the pH measurement to avoid any influence from food or drink.
I also took a pH measurement upon waking with a cluster headache and again five minutes after I'd completed an abort with oxygen therapy. A week into these measurements I also added oxygen saturation levels measured with a finger pulse oximeter upon waking with the cluster headache before starting oxygen therapy and again 5 minutes after the abort with oxygen therapy.
The following chart shows the results:
I was coming out of a low cycle at the time where I averaged 3 to 4 cluster headaches a week. I only took pH measurements for the first attack of the night and as you can see in the chart below, there were several nights where I had no attacks.
The red dots and lines represent the saliva pH and SpO2 measurements upon waking with a cluster headache and the blue dots and lines the the saliva pH and SpO2 measurements taken five minutes after completing oxygen therapy to an abort.
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As you can see from green line on the chart, my daily average saliva pH dropped over the two week period. What the chart doesn't show is that I started having more than one attack a night any time my average pH was 6.50 or below. On night of Day-14 I had four cluster headaches.
Based on the results of these pH measurements, I started a regimen of calcium citrate tablets that contain vitamin D3, magnesium and zinc each day washed down with a big glass of homemade lemonade or Baja Bob's sugar free margarita mix. The thinking here was this regimen acts as a buffer on the stomach's gastric juices with the ultimate result, a slight elevation in arterial pH that that might just decrease cluster headache frequency and intensity.
I've used this regimen several times with success each time I started into a high cycle. A few others have tried it as well with similar results.
If you buy into the vascular nature of cluster headaches and that increases in vasodilation and inflammation from any cause can also affect the frequency and intensity of cluster headaches, then anything you can take or eat that reduces inflammation in and around the trigeminal nerve could possibly reduce the frequency and intensity of cluster headaches.
To test this hypothesis I began taking Omega-3 Fish Oil and vitamin D3 supplements (3000mg a day of the Omega-3 Fish Oil gelcaps and 10,000 IU of the vitamin D3). Omega-3 Fish Oil and vitamin D3 are both recognized as very effective anti-inflammatory agents.
A daily dose of 10,000 IU of vitamin D3 is high by present FDA standards, but a growing number of nutrition experts think differently. A paper, published in the American Journal of Clinical Nutrition (AJCN) concludes the safety profile of vitamin D should safely permit raising the Upper Intake Level (UL) for vitamin D to 250ug (10,000IU) per day from the current UL of 50 ug (2,000IU) per day. The absence of toxicity in the trials conducted in healthy adults that used a dose of 10,000 IU vitamin D3 supports the confident selection of this value as the UL.
I also changed my diet while on this regimen by cutting down on complex carbohydrates, red meat and cooking oil and started eating more whole grain cereals for breakfast, salmon, cold water fish, chicken, with lots of fruit, green veggies and salads. I also dressed my salads with olive oil and lemon juice dressing...
I started this regimen around the 4th of October while averaging 4 cluster headaches a night and two nights later I was pain free. I'm still pain free...
Now the results from my use of this regimen could easily be a coincidence and are clearly anecdotal. It could also be yet another, albeit pleasant example of how cluster headaches change...
In any event, this is the first time I've gone more than two weeks pain free since I started my last episodic cycle in
April of 2004. That cycle never ended and I was diagnosed as a chronic cluster headache sufferer a year later.
The following links may be helpful if you're interested. Having said that, I do need to make the following obligatory disclaimer:
I'm not a doctor and I've provided this discussion for information purposes only. You should discuss these two regimens with your PCP or neurologist before trying them.
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Hope this helps or at least provides food for though.
Take care,
V/R, Batch