Click this link to read a post I like on the clusterheadaches.com message board...

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #650 - Mar 4^th, 2012 at 4:40pm

Hey Bill,

Thank you for the excellent feedback on your experience with the anti-inflammatory regimen. This is exciting info...

Let's start with your initial concentration of 25(OH)D at 20.5 ng/mL... You were clearly vitamin D3 deficient...

From the data I've collected so far, an initial increase in severity like you experienced happens about 5% of the time... We don't know why this happens just yet.

However, the first favorable response with a reduction in the frequency and severity of your CH at a little over 3 weeks given your your initial 25(OH)D level and dose of 20,000 IU/day is consistent with response times for other CH'ers who had a favorable reaction to the anti-inflammatory regimen.

Regarding your concern about reaching a toxic level of 25(OH)D... The best available information from several studies indicates the lower threshold for vitamin D3 intoxication is 200 ng/mL, (500 nmol/L).

We all respond to vitamin D3 with slightly different 25(OH)D response rates, but the response curves are all shaped much the same just shifted higher or lower. They all tend to reach an equilibrium at the six month mark as the slope of the curve reaches zero and goes essentially flat.

Your 25(OH))D concentration that tested at 104 ng/mL after 39 days looks about right according to the equation for estimating 25(OH)D response shown in the following chart. This formula was developed by Dr. Robert Heaney M.D., one of the Jedi Masters of vitamin D3 therapy:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

I used his 25(OH)D response formula adjusted for a vitamin D3 intake of 20,000 IU/day shown as the dashed line in the chart above and plotted the results of your two lab tests at day 0 and day 40. As you can see there's a good agreement. I then extrapolated the 25(OH)D response out to the six month mark.

Again this is just a rough estimate, but it appears your 25(OH)D concentration will reach equilibrium near 147 ± 20 ng/mL by day 180 at a dose of 20,000 IU/day.

I'm not a doctor so the only way to know for sure where your 25(OH)D concentrations stands at this point is to get tested again, only this time ask for a chemistry panel lab test with CBC (complete blood count) so your doctor can check your calcium and magnesium levels as well as to make sure your other lab values are within the normal reference ranges. A test for your parathyroid hormone (PTH) level is also a good idea.

The attached study by Garland et al, concluded that "Universal intake of up to 40,000 IU vitamin
D per day is unlikely to result in vitamin D toxicity."

There's also an excellent discussion of vitamin D3 toxicity at the following Vitamin D Council link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Now for the exciting part... As it appears you've reached a therapeutic response at 25(OH)D concentration ~115 ng/mL, you're going to need to work with your doctor to determine the optimum maintenance dose of vitamin D3 to remain pain free of your CH.

As long as your 25(OH)D serum concentration remains below the 200-250 ng/mL threshold for vitamin D3 intoxication and your serum calcium level remains within the normal reference range, you're likely safe continuing a therapeutic dose of 20,000 IU/day vitamin D3 at least until your next lab test. Having said that, a monthly test of your 25(OH)D serum concentration is prudent.

Discuss this with your doctor and show him this post along with a printed copy of the attached article by Garland et al.

As your goal now is to determine an optimum maintenance dose of vitamin D3, when you've reached the point where you've remained PF for at least a month at a vitamin D3 dose of 20,000 IU/day, test your 25(OH)D level then reduce your vitamin D3 intake down to 15,000 IU/day then test again after a month.

If you remain PF at a vitamin D3 dose of 15,000 IU/day, your 25(OH)D concentration should stabilize around 120 ± 15 ng/mL at the six month mark.

Take care and please keep us posted.

V/R, Batch

Back to top

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

(160 KB | 0 )

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

Callico

CH.com Hall of Famer

Offline

Author of "Stranded at
Romson's Lodge

Posts: 4916
Aurora IL
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #651 - Mar 5^th, 2012 at 8:49pm

Hi Pete,

Thanks for the kind words about me being old (or whatever you said Cheesy

) i saw my GP (resident) today and she also called in her attending Physician. They were a little concerned about the amount of Vit D I was taking and were afraid I would go over 100 ng/ml if I continue. I was at 73.3. I'm not concerned about toxicity, but my wife was in the room and I'm getting a bit of flack. Would you suggest going to 20,000IU or should I try 15,000 for a while first?

I really appreciate what you are doing here. I was trying a different regimen that did not pan out, else I would have been trying this one sooner. I had wondered if there might be something to the Vit D theory when Niels first broached it when I got thinking about the much higher incidence of CH in the Northern and Southern climes where sunlight is limited for longer periods of time.

I do hope this works. Being an "old hand" as you said, I'm about to run out of options.

BTW, the doc also got the wife wound up about O2 usage today too. He thinks 40 lpm is way to much, saying once the blood is oxygenated it can't do anything else for you. I know better, as do you, and he was not interested in any papers on it either. I think the next time I go in I'll be taking some of your work in with me and educate him whether he wants it or not.

All the best,
Jerry

Back to top

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

IP Logged

Mike NZ

CH.com Hall of Famer

Offline

Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #652 - Mar 6^th, 2012 at 2:51am

Callico wrote on Mar 5^th, 2012 at 8:49pm:

BTW, the doc also got the wife wound up about O2 usage today too. He thinks 40 lpm is way to much, saying once the blood is oxygenated it can't do anything else for you.

Well once a doctor starts ignoring published scientific papers from reputable, peer reviewed journals it says that it's time they changed their title from doctor to something more applicable to someone practicing pseudo-science.

We know what works and there is clear medical evidence to back it up.

Mind you, I was told that anything over 10lpm would make my blood boil by one medical "professional" and another said that oxygen was a dangerous drug that people should be weaned off!

Back to top

IP Logged

Callico

CH.com Hall of Famer

Offline

Author of "Stranded at
Romson's Lodge

Posts: 4916
Aurora IL
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #653 - Mar 6^th, 2012 at 10:53am

Mike, I don't think it is so much ignoring the articles as not even reading them. CH is not his line of practice and I am just one of many patients he deals with as Attending Physician to several Residents. Fortunately, my Neuro is more knowledgeable and understands O2 usage. He is the one who gave me the script for O2. His only question was "How much do you want me to write it for?"

Jerry

Back to top

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #654 - Mar 8^th, 2012 at 2:53pm

Hey Jerry,

Thanks for the update… and sorry to be so slow in responding… I've been trying to compile some of the anti-inflammatory regimen survey data for the last few days…

Regarding how much vitamin D3 to take… It's dealer's choice on whether to take 15,000 or 20,000 IU/day of vitamin D3. The higher daily dose might push you into remission a bit faster, but in either case, it's wise to have the 25(OH)D lab test every month until it reaches equilibrium and stabilizes around the six month mark.

If you can tell me the number of days you were taking 10,000 IU/day vitamin D3 before your last test for 25(OH)D I can work up an estimate on the rate you're building this metabolite and where it will reach equilibrium and stabilize at a given dose of vitamin D3.

It's not surprising that your physicians got antsy about your 25(OH)D serum concentration going over 100 ng/mL. Staying within the "normal" reference range for medical diagnostic lab results is generally considered a safe medical practice.

The best information available indicates the vitamin D3 intoxication lower threshold for 25(OH)D concentration is 200 ng/mL. That would take a vitamin D3 dose >40,000 IU/day for at least 3 months...

See: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Read through the References at the bottom of this page...

To put the "risk" of hypervitaminosis from vitamin D3 in perspective... There was one death in 2004 attributed to vitamin D3... it was a child and mistakenly given over 1,000,000 I.U. vitamin D3. None since...

At nearly the same time, there were 59 confirmed deaths due to aspirin poisoning in 2003 and 147 deaths known to be associated with acetaminophen-containing products (Tylenol).

Health risks from a vitamin D3 deficiency are far greater...

It's also not surprising that your physicians opined that an oxygen flow rate of 40 liters/minute is too high when it comes to oxygenation of hemoglobin… That's entirely true, but unfortunately that opinion doesn't consider carbon dioxide levels that require a greater level of lung ventilation to reduce than provided by an oxygen flow rate of 15 to 25 liters/minute.

If you challenge most physicians why the upper boundary of the 25(OH)D reference range is set at 100 ng/mL, most will give you a blank look like you're speaking in tongues… Many physicians are frequently a little confused at who to believe when it comes to interpreting 25(OH)D lab results and it's not their fault.

Testing for vitamin D metabolites has exploded over the last few years with some diagnostic labs reporting an increase from a few hundred tests for 25-Hydroxyvitamin D a month three years ago to over 12,000 a month in 2011.

Add in the confusion factor of whether or not to use total Vitamin D or D2/D3 and the number of questions starts going up. Immunoassays and protein binding assays can only report total. Total vitamin D has been the only measurement available for years and it appears to be the most widely accepted. However, chemical assays can report both vitamin D2 and D3. Whether or not that’s needed is controversial.

Compound that with at least five different assay methods and no clear standards until 2009 when NIST stepped in. The National Institute of Standards and Technology (NIST), in collaboration with the National Institutes of Health's Office of Dietary Supplements, developed a new reference sample for vitamin D in blood serum to help laboratories validate the accuracy of their test methods. The NIST Standard Reference Material (SRM) 972, “Vitamin D in Human Serum,” represents a first step toward standardization of vitamin D testing.

From the limited research I've done on the topic of interpreting 25(OH)D results, the lower category where Deficient is less than 20 ng/ml, (50 nmol/L) and Insufficient is defined as 20-30 ng/mL,. It appears these categories are based on epidemiological studies of bone malformation in children (rickets) and bone weakness, softness, or fracture in adults (osteomalacia) relative to vitamin D3 intake. It also appears the "Normal" reference range of 30-100 ng/mL is based on population samples of "Normal" people…

Unfortunately, that begs the question… Which population of "Normal" people? A population sample from Southern California or Arizona can have a "Normal" reference range that will vary significantly from a population sample from Massachusetts or Main simply due to the difference in available incident UV-B in sunlight and lifestyle.

Now for the good news… There are a growing number of vitamin D3 experts like doctors Heaney, Garland, Vieth, Cannell, Hollis and Holick who are trying to bring about a better understanding of vitamin D3 testing, dosing, deficiency and the pharmacokinetics of vitamin D3. More importantly, how best to treat vitamin D3 deficiency, and how to interpret lab tests for 25(OH)D in concert with related lab tests for calcium, magnesium, phosphorus and parathyroid hormone (PTH).

Google any of the names of any of the above along with "vitamin D" and you'll find the results from a number of studies conducted over the last 10 years with some very compelling conclusions that support higher doses of vitamin D3 and the safety of higher concentrations of 25(OH)D.

It's no secret that I favor the use of safer and more natural non-invasive methods of controlling our disorder as opposed to the very powerful prescription medications with all their side effects. That's why I've spent over five years explaining why oxygen therapy at flow rates that support hyperventilation is safe and so much more effective than oxygen therapy at the lower flow rates.

What I've been trying to do over the last year is try to establish a causal link between our cluster headache disorder and a vitamin D3 deficiency… At this point, thanks to well over 150 CH'ers here at CH.com and another group of CH'ers at ClusterBusters… that causal link had gone well past being anecdotal… It's very real.

The next challenge has been to try to establish the 25(OH)D concentration threshold where most of the CH'ers who responded to the anti-inflammatory regimen either experienced a significant reduction in the frequency and severity of their CH or went pain free. So far CH'ers who have had this lab test while still experiencing active CH have mostly seen their results come back at < 30 ng/mL, (75 nmol/L), but a few have tested as high as 42 ng/mL, (105 nmol/L) 25(OH)D while still experiencing active CH.

The lower threshold for CH'ers who started the anti-inflammatory regimen and experienced a favorable CH response to this regimen with vitamin D3 at 10,000 IU/day with a significant (>60%) reduction in the frequency and severity of their CH, appears to be at a 25(OH)D concentration of ≥ 60 ng/mL, (150 nmol/L).

However, having said that, there have been a few chronic CH'ers, previously diagnosed as intractable to all the mainstream preventatives and abortives except for oxygen therapy at flow rates that support hyperventilation. who took much longer to experience a favorable response to this regimen and their 25(OH)D concentration has tested > 100 ng/mL.

Given the data collected so far, the optimum target therapeutic range for 25(OH)D concentration to be free CH pain or at least significantly a reduced number of CH that require only a few minutes of oxygen when they do occur… appears to be 60-100 ng/mL, (150-250 nmol/L) as shown in the following chart.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Enough for now… Take care and please keep us posted.

V/R, Batch

Back to top

« Last Edit: Mar 8^th, 2012 at 10:07pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

Callico

CH.com Hall of Famer

Offline

Author of "Stranded at
Romson's Lodge

Posts: 4916
Aurora IL
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #655 - Mar 13^th, 2012 at 11:48pm

It is a little soon to draw any real conclusions, but following my Drs appt of last Monday I started slipping in an extra 5,000 IU of Vit D bringing me up to 15,000 units (without telling the wife). Thursday and Fri were much improved over what I have been experiencing for the last 7 weeks, but I can't say for sure that my high cycle ended. However, Sat I had only one hit of about a k4 and Sun and Mon were basically PF. I came down with a bad cold over the weekend and Mon was in bed all day and basically didn't eat, so I didn't take my meds either, including the vitamins. Today, Tues, I got hit twice, about a K4-5. Time will tell, and it may be that as with every other methodology I've tried I get good results for a couple of months and it is back, but I am encouraged.

One reason I have not been much of a supporter around here the last year or so has been that I've just gotten to the place I couldn't handle it any more. I came around for the support and to see what was happening with people and to cheer for others who were having successes, but I just didn't have it in me any more to be the kind of support I used to like to be. I can't remember the last time I went on the introductions page, just because I can't handle all the newbies coming in with all that they need. Sometimes the well just runs dry.

I said all of that simply to say this. I am so grateful for those of you who have been involved in this work, in the O2 work, in ClusterBusters, and the Testosterone project. You have kept hope alive, even when I didn't have any to give out to others. I thank you from the bottom of my heart.

Jerry

Back to top

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

IP Logged

Joe-P CH.com Newbie Offline Posts: 7 Arlington, VA Gender:	Re: 123 Days PF And I Think I know Why Reply #656 - Mar 14^th, 2012 at 11:57am Batch, thanks for your initiative and motivation for researching these data. Is there any indication that taking only vit D supplements would succeed in interupting the CH cycle?
Back to top	IP Logged

Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: 123 Days PF And I Think I know Why Reply #657 - Mar 14^th, 2012 at 3:22pm Joe, I'll not speak for Batch, but I know you will need to supplement calcium or the Vit D will strip it from your bones. Jerry
Back to top	"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown) IP Logged

Joe-P CH.com Newbie Offline Posts: 7 Arlington, VA Gender:	Re: 123 Days PF And I Think I know Why Reply #658 - Mar 15^th, 2012 at 6:59am I didn't know that and it is good to know. I was wondering about taking Vit D only, because the fish oil doesn't agree with me. Thanks for providing the info.
Back to top	IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #659 - Mar 15^th, 2012 at 2:19pm

Hey Jerry,

I suspect by now you've had a few less CH as the regimen starts to take hold... Bumping the vitamin D3 dose up to 15,000 IU/day should be sufficient to speed things up without any worry about vitamin D3 intoxication. 15,000 IU/day is still at the low end of the therapeutic scale for vitamin D3.

I just finished reading a study of 40 patients suffering from relapsing MS and they were taking 40,000 IU/day vitamin D3 and 1,000 mg/day calcium for six months before dropping back to 10,000 IU/day. No evidence of vitamin D3 intoxication...

Joe, in response to your question... there's every reason to suspect taking just the vitamin D3 will work to prevent CH... The down side of doing so is the potential for loss of bone density over time...

Vitamin D3 affects calcium homeostasis... It pulls calcium from the gut and pushes it into the blood stream... If sufficient calcium is not available in the gut, calcium homeostasis will pull it from the bones...

As calcium is one of the most important minerals needed for a multitude of bodily functions, our bodies have sophisticated mechanisms to control blood calcium concentrations in a very narrow range.

The overall process is called homeostasis and hormonal control of calcium homeostasis requires parathyroid hormone (PTH), 1,25-dihydroxy Vitamin D3 (Vitamin D3), and Calcitonin.

Taking 500 to 1,000 mg/day calcium won't hurt anything and it provides a good insurance against bone loss. If you have problems taking calcium supplements, there are plenty of food types you can eat with high calcium content that would bring your total daily calcium intake up to 500 mg/day.

It's also best to take the cofactor minerals, magnesium, zinc, and boron as they enhance the process of metabolizing vitamin D3 into 25(OH)D and on to it's active hormonal form.

The best thing to do is talk with your doctor and have him order up lab tests for 25(OH)D, calcium, magnesium and PTH after you've been on this regimen for 30 to 90 days.

The optimum therapeutic range for 25(OH)D where most CH'ers experienced relief from their CH is a concentration of 60-90 ng/mL. Having said that, I've seen lab results from a few Chronic CH'ers who didn't respond until their 25(OH)D reached 110 ng/mL.

Although 110 ng/mL is above the normal reference range for 25(OH)D, it is still well below the lower threshold for vitamin D3 intoxication at 200 ng/mL. At 200 ng/mL 25(OH)D, calcium homeostasis goes out of whack with elevated serum calcium and lots of calcium pumped over the side in urine... However, that would take over 40,000 IU/day vitamin D3 for most of us...

In order to reach the obvious goal of the anti-inflammatory regimen and prevent CH, we need to find the lowest level of 25(OH)D that keeps us pain free then continue to take whatever dose of vitamin D3 that can maintain that level. Again that would be a serum 25(OH)D concentration of 60 to 90 ng/mL and the best available response data indicates we would need to take between 5,000 to 10,000 IU/day to maintain that concentration of 25(OH)D.

This is why it's wise to work with your PCP to get a lab test as soon as you experience a favorable response to have your 25(OH)D concentration measured. At that point you can lower your vitamin D3 dose by 5,000 I.U. and see what happens.

If you're still pain free after 30 days, get another lab test for 25(OH)D. If your CH return, and I've had this happen, just bump the dose back up by 5,000 I.U.

Hope this helps.

Take care,

V/R, Batch

Back to top

« Last Edit: Mar 15^th, 2012 at 7:55pm by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

Joe-P CH.com Newbie Offline Posts: 7 Arlington, VA Gender:	Re: 123 Days PF And I Think I know Why Reply #660 - Mar 15^th, 2012 at 3:04pm Thanks for answering. The biochemistry I have seen here is always fascinating. I usually am able to prevent my cycles using melatonin, nortriptyline, and cyproheptadine (2x day), but 2 of them are pharmaceuticals and I'd prefer more natural ways. Thanks again for replying.
Back to top	IP Logged

Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3708 Bremerton, WA Gender:	Re: 123 Days PF And I Think I know Why Reply #661 - Mar 15^th, 2012 at 7:50pm Joe, I'm with you... Giving our bodies the supplements and micronutrients they need to make us healthy is a lot better than taking invasive medications we think will make us feel better... but all to frequently don't without a some undesirable side effects. Take care and hang in there. V/R, Batch
Back to top	You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there IP Logged

Callico

CH.com Hall of Famer

Offline

Author of "Stranded at
Romson's Lodge

Posts: 4916
Aurora IL
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #662 - Mar 17^th, 2012 at 1:38am

I think it is working. However, it appears to this uneducated and ignorant mind that it is not killing the CH, but just keeping it at bay. I don't drink, so I didn't give it the beer test, but I gave it the Bacon test tonight. WRONG move! About 30 mins later (after I had thought I had beat it) here came a K7, and I forgot I had an energy drink in my pocket. I let it get a good hold before trying to kill it with the 5hr Energy and it only kicked it down to about a K4 that lasted for over 3 hours. Memo to self: No more Bacon! Angry

Maybe I'll bump it up to 20k IU and give it another try. Cheesy

Of all things, I've missed Bacon for the last 10+ years.

Jerry

Back to top

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #663 - Mar 17^th, 2012 at 5:39pm

Hey Jerry,

Thanks for the update. You're spot on by saying this regimen keeps CH at bay... I've done enough stress tests of my 25(OH)D reserves by stopping this regimen cold turkey to come to the same conclusion.

I tried the first such test last November after 13 months of being pain free and was rewarded with a classic Kip-7 eight days after I stopped taking the regimen.

I repeated the stress test two more times over the following two months and both times it only took 24 to 36 hours without vitamin D3 for the beast to come a knocking... My conclusion is I'm still a chronic CH'er even though I'm pain free, and that as long as I maintain a therapeutic level of 25(OH)D, I'll remain pain free. For me that appears to require 10,000 IU/day vitamin D3.

I think you're presently at the tipping point as I call it, where you're almost but not quite in the safe green zone with a high enough serum concentration of 25(OH)D to completely prevent your CH.

Try to snag another lab test for 25(OH)D sometime over the next week to 10 days so you'll know what your threshold is to remain CH PF for future reference...

I've never heard of the "Bacon Test" for CH as a trigger, but then why not? It even makes sense. The extra sodium chloride in bacon could easily cause shifts in serum calcium levels and the sodium nitrite used in the bacon curing process could also be a culprit in nitric oxide (NO) production.

I suspect that after a month or so being pain free on this regimen, you'll be able to do the bacon test again with pleasant results.

Take care and please keep us posted.

V/R, Batch

Back to top

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

Plakatboy

CH.com Newbie

Offline

Posts: 24
x0||||0|0|
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #664 - Mar 19^th, 2012 at 2:50am

Started on the regimen on the 2nd day of this cycle. Now is the 7th day.

Getting low KIPs headache during daytime. Throughout the day I will experience the breakout feeling which subsides after a while.

Nighttime is a different story. 30 to 60 mins after sleeping, I will be awaken by the breakout feeling and if un medicated, developed into a KIP 5 to 6. The HA recurs every hour after sleeping.

Not sure but the regimen seems to help with day attacks but is not doing much to the frequency of night time attacks.

Anyone facing the same situation? Any suggestion?

Back to top

IP Logged

wildhaus

CH.com Alumnus

Offline

Posts: 860
Wildhaus|Switzerland
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #665 - Mar 19^th, 2012 at 7:27am

Hi,

I have been on this regimen for just over 6 months. My doctors tell me that amount of time rules out any possible placebo effect…

I suffer from the extreme sort of CH and was diagnosed as intractable CCH. Without medication I averaged up to 8 (and more) episodes a day at an average high pain level of kip 8 and an overall average pain level of Kip 6. The CH last 45 to 50 min without abortive treatment and are accompanied with all the classic CH symptoms we know so well.

I have undergone treatment with almost all the schoolbook standards of care preventative medications for CH, and was a guinea pig to some new and "innovative" treatments.

My candid assessment of all the CH preventative medications follows: None were really effective. Some provided limited relief for a while others did not. The few that were relatively effective with moderate to good effectiveness in preventing my CH all carried unacceptable side effects.

When it was clear I was essentially intractable to the standard CH preventative medications, my neurologists suggested blockades… The occipital nerve block with betamethasone provided a week to 10 days relief but nearly destroyed my endocrine system and it triggered a rapid bone mineral density loss.

One of the more "innovative" treatments included the implantation of a bi-lateral ONS (Occipital Nerve Stimulator).

The ONS implant required months of "tuning" to load the most effective stimulation patterns, but even then I became a slave to the ONS as it required constant attention during the day to provide what I consider a moderately effective method of preventing painful attacks. During the night while sleeping it was useless. By the time I woke up the pain was beyond control with ONS. It has since been surgically removed as its overall day and night effectiveness was far less than I had expected.

None of the treatments provided a sustainable magic bullet, or gave me a full (even limited) success in preventing my CH…

The only treatment I have not tried is the CB alternative. It's not that I don’t think it could give me some relief, it is just not compatible to my job requirements,

I do need my job…

All treatments had one or more undesirable side effects, that made the risk-reward ratio unfavorable so the choice to continue or discontinue the treatment easy.

The anti-inflammatory treatment (for me) is not a magic bullet.

BUT

I am under very close control and monitoring by doctors in the endocrinology department at KSSG (Kantonspital St. Gallen Switzerland). Even with this disciplined approach, I have the flexibility of adjusting doses of the “ingredients” and this has allowed me to achieve a steady (at the moment) 80-85% reduction in the frequency of my CH episodes. It has also resulted in a significant (over 50%) reduction in the pain level of the remaining episodes… nothing over Kip 5 anymore.

I achieve all of the above without any apparent undesirable side effects. On the contrary, my bone density (monitored as well) is improving and my current overall sense of well-being is very good.
There is still the last bad habit – smoking - a habit I should give up and I might feel even more energetic… but then, one beast at a time…

To all who haven't tried the anti-inflammatory treatment and would like to give it a chance, it can take time (in some cases) to achieve significant results. For me it took over 4 months and a lot of discipline.

However, the flexibility of dosing the “ingredients” to achieve the current results, and knowing there is room for better results makes the continuous disciplined work of adjusting my anti-inflammatory treatment to the situation and the lab tests every three months well worth the effort.

The anti-inflammatory treatment is giving us (in conjunction with high Flow O2 abortive) a substantial weapon to battle our common malady with substantial results (over 70%) and that is more than we achieve (statistically) than most of the standard of care treatments, without any (seemingly) adverse side effects, or any unwelcome legal issues.

The cost of this regimen is negligible in comparison to any of the current standard of care meds. It is affordable to any person, even without health insurance. My cost is just under 50 cents (US) a day (and I buy the supplements over the internet and they are flown from the USA to Switzerland via Fed Ex or DHL). It is the cost (more or less) of one cigarette (in Switzerland), and way less than the cost of a beer in Switzerland !!!

When it's all said and done, I know I still suffer from cluster headache !!! However, I'm no longer intractable and that by itself gives me a whole new outlook on life.

The anti-inflammatory regimen gives me a confident level of control in preventing my CH and the few that do leak through are easily controlled with oxygen therapy at flow rates that support hyperventilation.

The bottom line is I now enjoy a quality of life that lets me function effectively at work, at home with my family, and while doing things I enjoy like skiing with my sons and flying a sail plane over the Alps.

If you haven't already tried it, I urge as many of you to give this alternative a try, and even if you have tried it for one or two weeks and given up… try it again… It can take time to be effective for some of us, particularly the chronic types. In some cases like mine, it can take several weeks, but the wait is worth it.

It also takes a disciplined approach with lab tests and patience. There are no apparent risks and it is statistically a very cost effective preventative you can live with for as long as it takes… or longer!

Michael

(copy - Pete)

Back to top

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #666 - Mar 19^th, 2012 at 7:29am

Plakatboy,

Thanks for the feedback and hang in there... From the data collected so far, the average time for an episodic CH'er to respond to this regimen with a decrease in the frequency and severity of their CH is 8 days, but some have taken much longer.

Have you seen your PCP for the lab test for 25(OH)D? Nearly all CH'ers with active CH who gone in for this test have have come back with 25(OH)D concentrations lower than 30 ng/mL and there have been a few who tested as high as 42 ng/mL.

CH'ers who have gone pain free on this regimen and then had this test have all had their results come back at >60 ng/mL.

Several studies have shown it can take as long as 90 days for some people to elevate their 25(OH)D from 30 to 60 ng/mL at a vitamin D3 dose of 10,000 IU/day.

Take care and please keep us posted.

V/R, Batch

Back to top

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

Plakatboy

CH.com Newbie

Offline

Posts: 24
x0||||0|0|
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #667 - Mar 20^th, 2012 at 6:21pm

Hi batch,

Thanks for the reply.

This cycle I'm using the D3 regimen with red bull and cafergot as abortives. I am not sure if i'm taking too much caffeine cos I am going thru 4 to 5 night attack with the last one especially bad at KIP8-9. The pain continued for the next 90mins after the cluster pain subsides , though it is throbbing in nature instead of constant.

I am not sure if I am having rebounds or that you are paying back for lighter intensity during the day. cos this has never happen before . I have mainly aborted attacks with red bull so far and is well within the limit for cafergot.

Back to top

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #668 - Mar 21^st, 2012 at 10:55pm

Plakatboy,

The most effective abortive is oxygen therapy at flow rates that support hyperventilation. See your PCP or neurologist for a prescription for oxygen therapy.

Ask for 15 to 25 liter/minute oxygen flow rate, but be prepared for possible push back. At 4 to 5 hits a night you're also going to need at least three of the larger M-size medical oxygen cylinders for a one month supply if your insurance will cover it. The smaller E-size oxygen cylinders are only good for three aborts... The M-size should be good for 20 to 30 aborts depending on the flow rate.

If you don't have medical insurance, you can always go the Welder's O2 route. Harbor Freight Tools caries the oxygen and you can also get one of their welder's O2 regulators for $35.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

These puppies have enough flow rate to blow your shirt tail out. You'll just need to do a little trial and error to find the best regulated pressure for the fastest abort. They also have the GCG-540 cylinder attach fitting that will work with the larger medical oxygen cylinders (M/H/K) and all welding O2 cylinders.

Accept a lower flow rate if that is all that's offered as you can always buy a good 25 liter/minute regulator for less than $50. You'll also need a good mask and the $27.50 O2PTIMASK™ kit available at the CH.com store at the left is the best there is.

Take care and please keep us posted.

V/R, Batch

Back to top

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

-dvb-

CH.com Junior

Offline

I Love CH.com!

Posts: 42
New Jersey
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #669 - Mar 22^nd, 2012 at 5:31pm

Hello,

New-ish here. Started the D3 regimen Feb. 29th. Noticed a reduction in the severity of CHs about 4 days later, and have been reletively PF for the past week and a half (maybe the cycle is ending but I'm not stopping the D3 to find out if it is or isn't). Have yet to get the 25(OH)D test, but hope to soon. Was only formally diagnosed with CH yesterday, but a family history led me here (also having to wait over a month for an appt. with a Neuro). Printed out Batch's post #637 and gave it the doc...he seemed somewhat receptive to it and asked if he could keep it (of course, why do you think I printed it out for YOU).

Just wanted to say thank you to Batch and everyone else at this site. I hope to be able to provide with you more info soon..plan to wait the full month prior to filling out the survey.

Thanks,

-d

Back to top

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #670 - Mar 23^rd, 2012 at 11:25am

Hey DVB,

Thanks for the feedback and sharing the news about the anti-inflammatory with your doctor.

Who knows, if this keeps up, more CH'ers and their doctors will discover how well this regimen really works for 20 cents a day... We'll know just how many CH'ers when the big pharma's and their lobbying arm come gunning for me... Wait until the migraineurs discover how well this regimen works for them.

Take care and please keep us posted

V/R, Batch

Back to top

« Last Edit: Mar 23^rd, 2012 at 11:26am by Batch »

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

-dvb- CH.com Junior Offline I Love CH.com! Posts: 42 New Jersey Gender:	Re: 123 Days PF And I Think I know Why Reply #671 - Mar 23^rd, 2012 at 12:03pm Well Batch, I don't mean to stir up any trouble for ya, but my Father is taking the info to his Neurologist today. Take care and keep the science coming.
Back to top	IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: 123 Days PF And I Think I know Why Reply #672 - Mar 23^rd, 2012 at 1:35pm -dvb- wrote on Mar 23^rd, 2012 at 12:03pm: Well Batch, I don't mean to stir up any trouble for ya, but my Father is taking the info to his Neurologist today. Take care and keep the science coming. Trust me, Batch can take the heat! Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

RandyB

CH.com Newbie

Offline

I love YaBB 1G - SP1!

Posts: 24
x0|Toledo|USA||0|0|OH,Ohio
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #673 - Mar 24^th, 2012 at 12:33pm

So I thought I would chime in here. I have had CH episodic for about 18 years. As most of us can say when I find something that works for one cycle it stops working the next go around. Any way started my spring time cycle about 6 weeks ago. Starts with a few small hits then slowly progresses into a 3-4 day hit kip 7-10 then it stays that way for x amount of weeks. So right now I am peaking on the cycle getting heavy kip 7-10's every 4 hours. This past Wednesday and Thursday were insane so I went out a purchased a bottle of D3 10,000 IU and took 1 day since Thursday. The test of Thursday night up till today I have had no hits. I drank vodka on Thursday night and took a nap on Friday. No hits. Today had a heavy shadow which I killed with a Starbucks coffee.

I am amazed how well and how quickly I responded to the D3.

Back to top

IP Logged

ClosetCHer

CH.com Junior

Offline

Posts: 52
United States
Gender: male

Re: 123 Days PF And I Think I know Why
Reply #674 - Mar 24^th, 2012 at 7:03pm

Batch,
So my cycle started this year at exactly the same time it did last year (imagine that), around the beginning of March. Last year I found this thread and started the regiment immediately during a business trip to Portland. Within 3 days of starting I was free of CHs and it lasted for 5 months. The CHs came back at the end for about 3 weeks and then vanished for 6 months.

So here's why I'm posting.....I started the regime again more than a week ago and it really hasn't phased the CHs this time. I'm not sure what to do but to continue taking the regime and hope that it worked like last year. I take 10,000 mg of vitamin D, 1 500mg calcium combo pill, and 3,000 mg of fish oil.

Any suggestions?

Back to top

IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!