I am happy to report this website has CHANGED MY LIFE!  I have been lurking here and reading the forums for a few weeks now and my PF days have increased dramatically.  Thank you CH.COM!

So about 2 years ago I started getting eye pains and earaches on my right side only.  I started with ENT appointments with no luck. 

Then the pain seemed to start moving towards my right jaw and I was getting a lot of tense muscles in my jaw with the eye aches and ear aches.  My dentist said I had TMJ.  I started getting mouth guards and a TENS unit to treat the TMJ, of course, with no luck.

I had been using every OTC pain reliever with only temporary relief from each until it stopped working.  My doctor prescribed muscle relaxers, pain meds and even Chiropractic treatment.  All worked temporarily, then the beast came back...

I even had to go to the ER twice because the pain was so bad and wouldn't go away.  I had an MRI of my head, blood work, and who knows what other tests done to be told I was fine.  How frustrating!

Finally, I went to an oral specialist to find I didn't have TMJ.  My doctor finally thought about Cluster Headaches and tested O2 treatment with me when I went in with a headache.  The headache subsided and we thought we finally came up with a proper diagnosis.

I found this site and started reading pages and pages about the symptoms and treatments.  This had to be it.   I asked my doctor for a 25(OH)D test since the Vitamin D seems to be the culprit.  My results were a 37, which according to her was fine, but according to the CH sufferers, low.  I started taking Vitamin D3 and Fish Oil to test the results.  I was also able to get my doctor to prescribe me O2 with a 15lpm regulator and a rebreather.

So far, I am happy to report after about 2 weeks of 12,000iu of Vitamin D3 daily and 3600mg of Fish Oil daily my CH have reduced significantly in intensity and frequency.  I love having the O2 at my home so I can just knock that beast out as soon as I even feel it at a 1!

I have also found success in using an energy drink, which I never drank before, when I feel the pain coming on.

I have started journaling my vitamin intake and PF days.  It's looking pretty good.  I'm hoping to get my Vitamin D levels around 80 soon.  I'll go back for another test in a month to see my progress.

This site has helped me make sense of my pain and is getting me on track to be PF!  I am so thankful to Batch for all of the great information.  I haven't taken any pain meds since starting my D3 and getting my O2.  I am happy to keep those chemicals out of my body.

I did also figure out that my CH come on during the winter months.  I guess it's because I'm not out in the sun as often so my D levels drop.  I plan on keeping up with my supplements to keep these boogers at bay.

BF,

Thanks for the feedback on your experience with the ant-inflammatory regimen with 10,000 or more vitamin D3.

Glad to hear it's starting to help...  Once you've been on this regimen for a month or two and have the results of your next lab test for 25(OH)D in hand, please take 5 minutes and take the survey of CH'ers using this regimen. 

To start this survey, click on the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

In the mean time, please keep us posted.

V/R, batch

bad fishy wrote on Jan 15^th, 2014 at 10:34am:

My doctor finally thought about Cluster Headaches and tested O2 treatment with me when I went in with a headache.  The headache subsided and we thought we finally came up with a proper diagnosis.

Are you working with a headache specialist or just a GP? It sounds like your current doctor has limited experience of dealing with CH, with a response to O2 not being a definitive test for CH.

There are a whole host of headache types out there, all with slightly different symptoms and treatments, so seeing someone who can make an accurate, definitive diagnosis is essential.

The good news from the other tests, like the MRI, is that it has ruled out a few possible causes of CH like symptoms like brain tumours. So getting these tests done is never a waste.

Mike NZ wrote on Jan 15^th, 2014 at 9:45pm:

bad fishy wrote on Jan 15th, 2014 at 10:34am: My doctor finally thought about Cluster Headaches and tested O2 treatment with me when I went in with a headache.  The headache subsided and we thought we finally came up with a proper diagnosis. Are you working with a headache specialist or just a GP? It sounds like your current doctor has limited experience of dealing with CH, with a response to O2 not being a definitive test for CH. There are a whole host of headache types out there, all with slightly different symptoms and treatments, so seeing someone who can make an accurate, definitive diagnosis is essential. The good news from the other tests, like the MRI, is that it has ruled out a few possible causes of CH like symptoms like brain tumours. So getting these tests done is never a waste.

I am currently only working with my GP, but she has referred me to a neurologist for further examination. I am happy to have cleared up any more serious medical conditions through scans and blood work, but hate paying the medical bills!

On a side note, had a CH almost all day with only temp relief from energy drink and O2. It just keeps coming back and sustaining around a 4-5.

Vitamin D question: should all of the dosage be take. At 1 time or split throughout the day? I've been splitting 6000 with breakfast and 6000 with dinner. I also need to get the calcium.

It's recommended, to take the whole regime with your main
meal of the day to get the best result.

Hoppy.

bad fishy wrote on Jan 16^th, 2014 at 9:59pm:

I am currently only working with my GP, but she has referred me to a neurologist for further examination. I am happy to have cleared up any more serious medical conditions through scans and blood work, but hate paying the medical bills!

Whilst nobody likes medical bills, this is probably one time when paying some might make a huge impact on your life by getting a definitive diagnosis and setting out a treatment plan.

Hey, good to see yours are under control. I had good results with oxygen at the ER but only 3 times, 4th time it did not work.  I also had Great results with an energy drink that begins with Red.  I would knock out a major headache with 1 can but it only worked for 6 months and does not seem to work anymore. 



bad fishy wrote on Jan 15^th, 2014 at 10:34am:

So about 2 years ago I started getting eye pains and earaches on my right side only.  I started with ENT appointments with no luck.  Then the pain seemed to start moving towards my right jaw and I was getting a lot of tense muscles in my jaw with the eye aches and ear aches.  My dentist said I had TMJ.  I started getting mouth guards and a TENS unit to treat the TMJ, of course, with no luck. I had been using every OTC pain reliever with only temporary relief from each until it stopped working.  My doctor prescribed muscle relaxers, pain meds and even Chiropractic treatment.  All worked temporarily, then the beast came back... I even had to go to the ER twice because the pain was so bad and wouldn't go away.  I had an MRI of my head, blood work, and who knows what other tests done to be told I was fine.  How frustrating! Finally, I went to an oral specialist to find I didn't have TMJ.  My doctor finally thought about Cluster Headaches and tested O2 treatment with me when I went in with a headache.  The headache subsided and we thought we finally came up with a proper diagnosis. I found this site and started reading pages and pages about the symptoms and treatments.  This had to be it.   I asked my doctor for a 25(OH)D test since the Vitamin D seems to be the culprit.  My results were a 37, which according to her was fine, but according to the CH sufferers, low.  I started taking Vitamin D3 and Fish Oil to test the results.  I was also able to get my doctor to prescribe me O2 with a 15lpm regulator and a rebreather. So far, I am happy to report after about 2 weeks of 12,000iu of Vitamin D3 daily and 3600mg of Fish Oil daily my CH have reduced significantly in intensity and frequency.  I love having the O2 at my home so I can just knock that beast out as soon as I even feel it at a 1! I have also found success in using an energy drink, which I never drank before, when I feel the pain coming on. I have started journaling my vitamin intake and PF days.  It's looking pretty good.  I'm hoping to get my Vitamin D levels around 80 soon.  I'll go back for another test in a month to see my progress. This site has helped me make sense of my pain and is getting me on track to be PF!  I am so thankful to Batch for all of the great information.  I haven't taken any pain meds since starting my D3 and getting my O2.  I am happy to keep those chemicals out of my body. I did also figure out that my CH come on during the winter months.  I guess it's because I'm not out in the sun as often so my D levels drop.  I plan on keeping up with my supplements to keep these boogers at bay.

Mike NZ wrote on Jan 16^th, 2014 at 11:24pm:

Whilst nobody likes medical bills, this is probably one time when paying some might make a huge impact on your life by getting a definitive diagnosis and setting out a treatment plan.

Very true.  Medical care is just soooo expensive, even with health insurance.  I don't get how anybody in America can afford to be healthy with the outrageous medical costs.

Hoppy wrote on Jan 16^th, 2014 at 10:24pm:

It's recommended, to take the whole regime with your main meal of the day to get the best result. Hoppy.

Thank you.  I have started this regimen today.  Still have to go grab some Calcium.  Is there a preferred dosage of the pill and a preferred brand?

bab fishy,
Thank you.  I have started this regimen today.  Still have to go grab some Calcium.  Is there a preferred dosage of the pill and a preferred brand?

I use natural Factors, Calcium Citrate / Magnesium Citrate  250mg in one tablet, i take two = 500mg /day.

Batch suggest, KIRKLAND Calcium Citrate 500mg, bought
at Costco. Can't get this one here in OZ.

Hoppy.

Well, i'm now on day 4 of a PF streak!  I hate to say it because I don't want to jinx it, but I know you guys can appreciate this accomplishment more than others I tell.

I added 500mg of calcium and 500mg of magnesium to my vitamin regimen 2 days ago.  Not sure if that is helping out so quickly, but  I really don't care what is helping as long as it's helping!  I've also been getting out in the sun the past few days as it's been warm and sunny.  I did get some gummy calcium vitamins and they're pretty  tasty.  Figured it would help break up the monotony of downing all the pills.

bad fishy wrote,
I did get some gummy calcium vitamins and they're pretty  tasty.  Figured it would help break up the monotony of downing all the pills.

It's always good to hear news like that. So hoping you stay pain free. But, be careful of those gummy vitamins, they  are full of sugar.

Hoppy.