Concurrent with my neuro retiring, my episodic became chronic after 35 years. The headaches are actually milder but less predictable. Always at night. I can have none one night and three on another. Verapamil always worked great but no longer; I upped it without any improvement. So instead of increasing again, I thought I'd try Batch's vitamin regimen. I have been taking 2,000 of D3 for months anyway, but started the full regimen yesterday.

Last night it was like a nuclear bomb went off in my head. I know better than to blame the vitamins, but it's hard to stay motivated after a night like that. I had the same thing happen when I tried the mushroom cure years ago.

I have found that Vitamin E makes my headaches milder (true? coincidence?) Anyone else have experience with Vit. E?

I also notice that the nights I take an NSAID for musculoskeletal pain are the nights when the headaches are the worst. Anyone have a similar experience?

I am an old hat at this battle -- the first 25 years of which I had no diagnosis -- so I do have a lot of knowledge about clusters (in addition to being a nurse).

Maryo wrote,

I have found that Vitamin E makes my headaches milder (true? coincidence?) Anyone else have experience with Vit. E?

I also notice that the nights I take an NSAID for musculoskeletal pain are the nights when the headaches are the worst. Anyone have a similar experience?

No experience with vitamin E or NSAIDs, but I've been taking Glucosamine+Chondroitin+Manganese for years and no musculoskeletal issues.

As with the beast going crazy! When I first tried the vitamin D regimen, this also happened to me, but I persisted with the regimen, and I haven't heard from the beast for the past 3yrs.

Hoppy

Reassuring to hear I'm not the only one. I'll stick with it.

As far as musculoskeletal pain, only occasionally is it enough to bother my sleep and require some NSAIDs. So I'm all set in that department.

Thanks for your help folks.

That's fantastic Hoppy.

For a couple of years my neuro believed I was "growing out" of clusters. The episodes were short and mild. Then I had two episodes a year for two years, and this last year only 2 weeks in between "episodes." This is a new record for me. It's like being Alice in Wonderland, seeing what the new pattern is.

The 25 years of no diagnosis will always be worse than anything else (I hope). So I'm not sweating over this . . . and I love my oxygen tank.

I agree! By all accounts! "Oxygen Rocks" although I've never tried it myself, but I've read on here many times oxygen tanks are now just collecting dust! Since their owners found the vitamin D regimen. So, as the saying goes, "If at first you don't succeed, try, try again"

Hoppy

Maryo,

I too went years of being misdiagnosed.  It wasn't till a young, just out of med school neuro, noticed me in the delivery waiting room, waiting for my daughters arrival, that he noticed my physical symptoms. He questioned me about my health and he then wanted to see me in his office ASAP. He has a sincere interest in headache. He did the testing, of which I might say that every orifice and part of my body was explored. MRI, cat scans, walking testing, you name it, it has been done.

Because of his diligence, I finally received the proper diagnosis of CH. Then the regimen of drugs, of which didn't work. I was lost except for him paying due diligence to the demon. I too was told that I would grow out of the demon. It hasn't happened to this date, 34 years later.

I have had some success with the D3 therapy, although I have only been on it for 3 weeks. It has had a wonderful effect on my overall well being.

I have had over the years, 5 knee surgeries. To say the least, there isn't much cartilage left in them. The D3 seems to have eased the pains in them also. Is it a placebo effect? Don't know and at this point don't care.  All I know is that it has lessened pains throughout my body.

Micahel

Hi Michael63,
The long list of benefits from Vit  D3 and the regimen is not a placebo effect. Batch has a long list of scientific studies on D3.
A lot of this information can be seen on vitamindwiki.com
D3 is a very helpful tool in the treatment of many conditions.
If you have started Batch's D3 regimen for your CH, stay on it and listening to what he says often results in becoming pain free or lowered pain level.
All the best

Hi Michael, am delighted to hear that D3 is helping you be PF.
you're one of the 80% for whom it works.
All the best

I am into my 6th week of the D3 regimen. I have been PF for 6 days now and hopeful. At the beginning of the 4th week, I was still experiencing the 10pm attack. It was much milder than ever and so they were bearable. I contacted Batch about increasing the fish oil as I noticed in one of his posts that he was using 3000mg and I was only at 1200mg/day.
I asked about upping the dose of fish oil to 2400mg/day. I stated that maybe this might take away the last of the shadows and mild attacks. He agreed, so I started it and within a couple of days, the early night attacks ceased and the shadows of the other attacks disappeared as well.

Any time there is a question, I will not hesitate to go to the "guru" on these matters.  Nothing is gained by not asking questions.

Michael

Suggested daily intake of Omega-3 fish oil, 1x1200mg softgel up to three times daily with food, I always take 2/day.

Hoppy