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).

Greetings!
I can't speak to the vitamin E question, but if you're like me, you will find substantial relief from the musculoskeletal pain issues soon after you begin the D3 regimen. After all, it's an anti-inflammatory. I was actually shocked at the speedy (two days) reduction in my chronic back pain. Get the blood test done soon if you can, because it will help you later when you are aiming for a level which helps you the most. I really hope it works as well for you as it has for me.

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

Maryo,

As Hoppy said, he had the same thing with the beast seeming more aggressive, I too had the same thing. First night was one of the worst in my 34 years with the beast. Not being easily swayed, I continued the regimen and as of the last few days, the beast has calmed down. I now only get the attacks at night and only once.  I have gone 3 days now PF and couldn't be more sane. 4 nights ago, I had an issue with the beast and was again concerned with the regimen, but with the help of oxygen and a mile of pacing, it passed and was much much milder. 

Stay with the program and give it a chance to start doing what it is supposed to do.  I am like you and was concerned about results, but I am confident that this is the real deal.

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.

Forgot to mention when I started the vitamin D regimen I was in mid cycle, and like I said before, the beast went crazy from my normal two attacks/day to six/day, and he was coming and going all over the place until my cycle came to it's end, but as I said earlier, I haven't seen him since  :)

Hoppy

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.

maryo wrote on Mar 25^th, 2016 at 8:45pm:

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.

The "no diagnosis"...for me.... was "only" 4 yrs....so I am a lucky man...it be the bane of clusterhead existence...and I ache for your slow journey.....

.....my sanity and current existence is due to that "green head buddy"...my O2 tank...which I am looking at right now. There be a LOT of alternative treatment these days...but aint nothing gonna replace THAT (for now)..... I love me some of that too......

...whatever else  we talk about here...OXYGEN has GOT to be number 1...STILL....the other stuff can follow...but those become possible after we "breath the dream"................

Best

Jon

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

I'm all over O2. As a medical provider I have administered is many many many times, and I live with a tank by the bed. Have started the Vit. D3 regimen, fingers crossed.

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 Maryo,
Pleased to read you've started taking the vitamin D regimen, sometimes it needs tweaking to get it into gear. So, if things ai'nt working out, shoot Batch a PM he's the Guru on this treatment.

Good Luck, Hoppy.

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 Thierry,

I have become a true believer in Batch and his D3 regimen. It has been 29 days since I started and I used the 2 week loading dosage method. After the initial bad days, I got an email from Batch telling me to try the 2 week loading and things settled down considerably. As time went along I stopped having the attacks during the day but the night ones continued. The severity was minimal, just enough to wake me. I didn't need to walk but I did use O2 and was able to knock it out in 5 minutes.  The past few nights, PF!!!!!

I read up on the effects of Vitamin D on pain and I see the correlation between D and PF in other areas of the body.  Whatever the reason, I will continue the cofactors and persevere with the D therapy.

Michael

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

Thank you everyone for your input and comments. I am continuing the Vit D although am not seeing results yet although it's hard to tell.

It's clear I now have chronic and not episodic. The episodic headaches I had had a rapid onset and were always kip 8-10, and always the same nightly pattern.

What's going on now is good news and bad news. Good news is they have a slower onset and will abort in about 5 minutes on 10 l/min of O2. Some nights I have none (never missed a night during episodes). Others I'll have from 1 to 3. Hard to tell if the supplements are modifying the pattern or not.

Bad news is that I have a chronic pattern, and doctors, although well-meaning, are still not all that helpful after all these years. They don't realize that we have ready access to real experts 24/7 on the net.

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

Thanks Michael. I'll up the fish oil and see what that does.

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

Hoppy