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123 Days PF And I Think I know Why (Read 445111 times)
cyclist7531
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Re: 123 Days PF And I Think I know Why
Reply #1250 - Feb 8th, 2013 at 8:19am
 
Thanks Brew, Yeah, I saw that I had those reversed and just edited my post.  It will be interesting to see what my doc says now. When I met with him the other day he did say if it was low that he would also suggest a loading dose 1x a week.
Mark
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Re: 123 Days PF And I Think I know Why
Reply #1251 - Feb 8th, 2013 at 8:58am
 
It took me nearly 2 months of 20,000iu per day with a once-a-week loading dose of 50,000iu to get into the therapeutic range.
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Re: 123 Days PF And I Think I know Why
Reply #1252 - Feb 8th, 2013 at 9:27am
 
I'm also wondering about the Vit A, K and Magnesium. I take multi-vitamin (One-A-Day Men's 50+ Advantage) that contains 2500IU of Vit. A, 20 mcg of K and 100mg of Magnesium. Do they suffice in meeting the needs of those supplements and should I continue with this along with the D3, Calcium and Fish Oil?
Thanks, Mark
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Re: 123 Days PF And I Think I know Why
Reply #1253 - Feb 8th, 2013 at 10:03am
 
I believe Batch has stated that the RDA of vitamin A, vitamin K and Boron are a good level for this regimen (please correct me if I'm wrong), but you might want to boost your magnesium if you don't get results. Too much magnesium was giving me foot and leg cramps, so I am now down to what is contained in my multi-vitamin.
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Re: 123 Days PF And I Think I know Why
Reply #1254 - Feb 8th, 2013 at 11:35am
 
Brew wrote on Feb 8th, 2013 at 8:58am:
It took me nearly 2 months of 20,000iu per day with a once-a-week loading dose of 50,000iu to get into the therapeutic range.


When I spoke with my PCP about this regimen, he indicated he has struggled in the past to get people to 40ng/mL.  I told him that there were people doing 20,000 IU / day + 50,000 IU loading doses once a week and his response was "Wow! Really?"
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Re: 123 Days PF And I Think I know Why
Reply #1255 - Feb 8th, 2013 at 11:51am
 
After my results my PCP just came back today recommending I take 2000IU a day and retest in 4-5weeks. 
I still think I should go higher than that to get my D3 up there quicker.
Mark
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Re: 123 Days PF And I Think I know Why
Reply #1256 - Feb 8th, 2013 at 12:20pm
 
Hey Pete! I have a permanent post(thread) on the facebook site that instructs folks to take the survey and i hear it almost every day that these folks will be taking the survey so many just started the regimen and i see that you will get the 100 CHers that you need pretty soon so i'll keep promoting the survey info as much as i can....Best of luck for speedy results .....Johnny Smiley
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Re: 123 Days PF And I Think I know Why
Reply #1257 - Feb 8th, 2013 at 7:38pm
 
Hey Cyclist,

I think you need a higher intake of vitamin D3 too. My theory why you need more vitamin D3 stems from your cycling... I'll explain below. 

Moreover, given what we've learned during the last two years about our response to the anti-inflammatory regimen, it's obvious to most of us that 2000 IU/day vitamin D3 is too low... even though your PCP doesn't. 

You need to understand that he is caught in an ethical bind between his own common sense based on years of clinical experience, and the 400 IU/day RDA or 4000 IU/day UL (Upper Tolerable Limit) for vitamin D3 put out by the four big government bureaucrats on the Nutrition Board at the Institute of Medicine.

You might want to consider this an opportunity to make your vitamin D3 therapy a "Ding-Dong School" teachable moment with your PCP. 

Show him the following chart and urge him to read the attached pdf file by Garland et al.  It's a very interesting meta-study on vitamin D3 metabolism that concludes: "Universal intake of up to 40,000 IU vitamin D per day is unlikely to result in vitamin D toxicity."

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My theory why you need a higher intake of vitamin D3 than 10,000 IU/day to control your cluster headache should be clear if you follow my logic.

That logic starts with the pharmacokinetics of vitamin D3 (What the body does to process vitamin D3).  This occurs in the following sequence:

1.  Vitamin D3 absorption in the gut

2.  Liver metabolizes absorbed vitamin D3 into 25(OH)D

3.  Kidneys metabolize some of the serum level 25(OH)D into 1,25(OH)2D3, the active hormonal form of vitamin D3, to support calcium homeostasis

4.  The remaining serum level 25(OH)D is metabolized extrarenal (outside the kidneys) at the cellular level throughout the body to 1,25(OH)2D3 to be consumed as needed, where needed and when needed, one time... and then it's catabolized (broken down) into an inactive metabolite and eliminated by the kidneys in urine.  This is called the peripheral or autocrine path of vitamin D3 metabolism.

Here's where things get really interesting...  It turns out there are a number of processes along the peripheral path of vitamin D3 metabolism that consume 1,25(OH)2D3.  One of the largest consumers of 1,25(OH)2D3 is the immune system. 

This is where the 1,25(OH)2D3 activates and clones the immune system's T-cells.  This process effectively turns the T-cells into an army of little pack-man cells that gobble up virus and bacterial antigens to fight off infection. 

Other T-cells are activated to remember the kind of antigen so if it invades your system again, they can react much faster... i.e., you get chickenpox only once and you become immune to further exposure to the virus that causes it.  In short, you've developed an immunity to chickenpox.

Not surprisingly, the two systems in the body with the highest immune response are the digestion and respiratory systems.  When you stop to think about it...  What two systems are exposed to the highest concentrations of foreign viral and bacterial antigens?  If you said the digestive and respiratory tracts... you win.

Assuming you're exposed to the same concentrations of antigens in food as the rest of us...  that leaves your respiratory tract as the discriminator.

As a cyclist averaging 100 miles a week, I estimate you spend roughly six to seven hours a week doing so.  As your minute volume of inspired air while cycling is likely upwards of 56 liters and where the minute volume of air inspired by the average CH'er at rest is 9 liters, during that 6.5 hours of cycling you inhale 22,500 liters of air where the average CH'er at rest inhales only 3,600 liters. 

That means you're inhaling six times the volume of air in that six hours of cycling as the average CH'er sitting at home or work.

You're also exposing your lungs to six times the volume of antigens such as airborne virus, bacteria, spores, pollen and other pollutants.

If you recall the lungs are a major consumer of 1,25(OH)2D3 and that this active metabolite of vitamin D3 is only used once then pumped over the side in urine, it's quite possible your immune system is easily consuming six times or more the amount of 1,25(OH)2D3 as the average CH'er.

When you consider that roughly only a thousandth of the vitamin D3 intake makes it to the periphery as 1,25(OH)2D3 and most of that is being consumed by the immune system.  This could easily account for your limited response to the ant-inflammatory regimen and low 25(OH)D serum concentration.

I hope all this makes sense and that it helps explain why you need a higher vitamin D3 intake than 10,000 IU/day.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Mar 9th, 2013 at 8:35am by Batch »  
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Re: 123 Days PF And I Think I know Why
Reply #1258 - Feb 8th, 2013 at 8:20pm
 
Thanks Batch. That is extremely interesting, especially the piece on the effect of cycling and the immune system impact on the absorption of D-3.  So, would you suggest I start the regimen at 20,000IU of D3 and do a load of 50,000IU 1x per week and then have my level checked in 4 weeks?

Mark
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Re: 123 Days PF And I Think I know Why
Reply #1259 - Feb 8th, 2013 at 8:35pm
 
Mark,

That sounds like an excellent plan...  Go for it!

Take care and please keep us posted.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1260 - Feb 8th, 2013 at 9:14pm
 
Great. Thanks for the assistance and advice. I'll make sure I do the survey as well.
Mark
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Re: 123 Days PF And I Think I know Why
Reply #1261 - Feb 10th, 2013 at 9:29pm
 
Quick question. Is it typical to have nausea after taking the vitamins? I'm taking 20K of D3, 500 Calcium Citrate, 2400 of Fish Oil and a multi-vitamin after dinner with some OJ or Lemonade and tonight I almost lost it all. Didn't have this level of nausea the first 2 nights.
Thanks, Mark
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Re: 123 Days PF And I Think I know Why
Reply #1262 - Feb 10th, 2013 at 10:21pm
 
My personal belief is that it is either the calcium or the zinc that causes the nausea. I take both in the morning, and I get pretty squishy if I don't have something to eat. Doesn't happen with my evening split (vit D3, multi, and fish oil).
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Re: 123 Days PF And I Think I know Why
Reply #1263 - Feb 11th, 2013 at 7:04am
 
Thanks. I've been taking them all after eating dinner and last night was the first night that I was really nauseous.  It ended up passing within about 20min, but during that 20min period it was pretty unpleasant.
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Re: 123 Days PF And I Think I know Why
Reply #1264 - Feb 11th, 2013 at 11:17am
 
Hi,
I have received some blood test results today and think I have finally worked out why the regime was not working properly for me.
Calcium - 2.4mmmol/l
PTH - 30
Corrected calcium albumin - 39
Magnesium - 0.81
Still waiting for D3 and zinc results but I think my magnesuim levels are low ( considering I have been taking supplements for 10 weeks). I have had a quick look online and low magnesuim levels have been linked with CH.
Hopefully Batch can confirm or put me right on these levels.
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Re: 123 Days PF And I Think I know Why
Reply #1265 - Feb 11th, 2013 at 3:54pm
 
oxyrunner wrote on Feb 11th, 2013 at 11:17am:
Hi,
I have received some blood test results today and think I have finally worked out why the regime was not working properly for me.
Calcium - 2.4mmmol/l
PTH - 30
Corrected calcium albumin - 39
Magnesium - 0.81
Still waiting for D3 and zinc results but I think my magnesuim levels are low ( considering I have been taking supplements for 10 weeks). I have had a quick look online and low magnesuim levels have been linked with CH.
Hopefully Batch can confirm or put me right on these levels.


Hi

It can take up to a year to correct low magnesium levels. The magnesium pioneer Seelig recommend 0,6-1,0 mg magnesium per kg body weight per day.

Best Niels
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Re: 123 Days PF And I Think I know Why
Reply #1266 - Feb 11th, 2013 at 4:10pm
 
Batch wrote on Feb 5th, 2013 at 2:25am:

Wayne,  Thanks for the update...  If anything, the move from Christchurch to Aukland should have worked in your favor due to the slightly higher latitude...

What I suspect is happening is something is affecting the way your body is metabolizing vitamin D3... That's assuming you've not changed your dose of vitamin D3 or changed brands of vitamin D3.

New bugs and virus can cause your immune system to consume the active metabolite of vitamin D3, 1,25(OH)2D3, (calcitriol), at higher rates...  That means there might be insufficient calcitriol to prevent your cluster headaches.

The other possibility is there's been a change in you diet that's resulting in a much lower systemic/arterial pH...  too much acid.

The first step is to see the next available PCP and have your 26(OH)D serum concentration tested...  If this test comes back at a concentration less than 60 ng/mL (150 nmol/L), you need to increase your daily intake of vitamin D3.

If you're not taking vitamin A at RDA... Start doing that as well.

Take care and please keep us posted.

V/R, Batch


Thanks for this Batch. I think it may be a month or so of hotel food, erratic sleeping and a severe temperature change that has set these off. Having said that I am doing everything right, eating very well, exercising, religiously following the D3 regime and have upped the D3 intake to 20k iu per day with a 50k loading dose. Have been for a check up and, other than the CH I am as healthy as a horse. Just weird that nothings working. How would I address a lower arterial PH?
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Re: 123 Days PF And I Think I know Why
Reply #1267 - Feb 11th, 2013 at 4:16pm
 
cyclist7531 wrote on Feb 11th, 2013 at 7:04am:
Thanks. I've been taking them all after eating dinner and last night was the first night that I was really nauseous.  It ended up passing within about 20min, but during that 20min period it was pretty unpleasant.

I experienced something similar when I started the regimen but it passed after 3 days and I have been fine since.
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Re: 123 Days PF And I Think I know Why
Reply #1268 - Feb 12th, 2013 at 6:53am
 
Some very interesting posts and some great questions...  I'll do my best...

Mark, as Brew said, the nausea could be due to the calcium or the zinc... It could be the magnesium, the Omega 3 fish oil (per reports in the online survey) and possibly a combination of the above...  The online survey also indicated there were two reports of nausea as a result of an increase in vitamin D3 intake.  Splitting the dose helped one CH'er.

We all have colonies of beneficial bacteria in our gut...  Some of the supplements in this regimen can cause them to become perturbed for a day or two, and this can signal an increase in peristaltic contractions along the GI tract giving you the sensation and symptoms of nausea.  Too much magnesium can also make you loose as a goose.

You've a couple options... Keep taking this regimen with the largest meal of the day and ride it out...  Or... you can use the process of elimination and selectively remove each of the supplements one at a time for a day or two to see which is responsible for the nausea.

Oxyrunner, copy all... We're still learning what makes this regimen work and what keeps it from working...

Your last lab for 25(OH)D was 78 ng/mL on or about 29 Sept 2012.  That was high enough then for a therapeutic response, the question du jour is what is it now?

We've found that allergic reactions and viral infections like a cold or the flu can easily deplete our 25(OH)D reserves to low enough concentrations to fall out of remission, but you have none of these. On top of that you've already bumped up your vitamin D3 intake and you're taking vitamin A.

That leaves a drop in arterial/systemic pH (too much acid) as a possible reason for the cluster headaches...  If this is the case, taking Alka-Seltzer a couple times a day, two hours after eating, or the Arm & Hammer tonic (a half teaspoon of sodium bicarbonate in 4 ounces of water), four times a day, two hours after eating and right before bed.

If either method works to lower the frequency of your cluster headaches, a low pH was likely the problem.  If that's the case, the antacids are only a temporary solution.  You'll need to start eating an alkalizing or GOMBS diet for a few weeks as a more lasting solution.  See the following links:

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Regarding your current lab data, I'm not a doctor so I'm not qualified to interpret your results.  What I can do is provide the normal reference ranges.

Lab Test            Normal Reference Range
Total calcium  -  2.1 to 2.8 mmol/L
PTH               -  10 to 65 pg/mL
Magnesium    -  0.7 to 0.95 mmol/L

As you can see your total calcium, PTH and magnesium lab results are all at the midpoint of their normal reference ranges.  Beyond that, I'm still at a loss to explain the return of your cluster headaches.

Please let us know the results of your 25(OH)D and zinc labs.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #1269 - Feb 13th, 2013 at 6:07pm
 
Just short of 2 weeks in.. Have had only had 4 hits the 1st 3-4    nights requiring injection, none during day requiring injection, still some unusual shadowing but even that has diminished greatly. Have actually begun to recall dreams (3) which has not happened in well over a year if not longer on any regular basis. I did notice that the 2 times I did not eat with my AM meal that urine was very dark with minerals vs all other times my body seemed to absorb much better as recommended. I plan on continuing this 10K IU for 1 more week with loading doses once a week then I will begin to taper off my 200mg daily topomax and 900 lithium slowly.  I plan on continuing the verapamil as it controls my BP extremely well for now 12 hours apart from D3...  Am having a little gastric issue but rather minor but could well be just me as I do have issues from time to time.... will report back.  Thanks
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Re: 123 Days PF And I Think I know Why
Reply #1270 - Feb 15th, 2013 at 2:38am
 
So excellent news. From Batch's comments I figured that for some or other reason my body was using the D3 quicker than normal. I took a 50k loading dose on Tuesday and upped the daily dose to 30k, 20k in the morning after a bigger than usual breakfast and 10k after supper. Bingo, Wednesday a Kip 5 in the morning which took a while to break and since then only very light hits at night that clear by themselves after 10 minutes. Mildly intrusive as far as my sleeping patterns go but quite manageable. Good call Batch, thanks.
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Re: 123 Days PF And I Think I know Why
Reply #1271 - Feb 15th, 2013 at 9:09pm
 
Update of D3 Regimen:

I began the D3 regimen Monday Jan 21, increasing my D3 from 10,000iu to 15,000iu + 50,000iu loading that day.

FISH OIL 3 grams (Advocare Omega 3 complex )
ALIVE multivit with cofactors vit A,K Boron Zinc
Calcium Citrate 500mg (Kirkland)

Checked my D3 level two days later for a "baseline": 64.8ng/nl

Headaches persisted with vengance.

Friday, Feb 1, I met with the infamous BATCH to learn how to use O2 properly as an abortive. After the first 1-2 tries, my pain was brought down by about half . The next  day , I had a wicked headache but during the first few minutes of hyperventilation, I developed excruciating pain on the Left temple over the Trigeminal area (I had a microvascular nerve decompression surgery in Sept 2011 of the 9th cranial nerve. The year and half prior to surgery is when all my headaches/headpain and nerve pain developed).

Back to hyperventilating as an abortive;the pain was so excruciating that it took all I could muster to power through it, hoping it would change. It eventually dropped in severity after maybe a total of 3-4 min . I continued for another 10-15 min and quit. The headache had only dropped by half.

I spoke with Batch and we decided to try the OPTIMASK the next few times, without hyperventilating.

Bottom line: the  O2 didn't sigificantly impact my headaches and by that Sunday Feb 3, my head was killing me.

The character of the headache had changed, felt more like the worlds worst hangover-headache-on-cheap-sweet-wine x10, with every movement bouncing my poor brain inside my skull.

I had used 14 doses of TRIPTANS (combination IMITREX and SUMAVEL) in 30days so the thought I had was potentially rebound headache.
Saw the neurologist the next day who began a  course of DHE IM injections x5days ; TORDAL 30mg IM x 4 days; PREDNISONE DOSE PAK x 6 days ; VISTRAIL for nausea and adjunct for head-pain (for some reason ,antiemetics were/are the only thing that sometimes simmer the head/nerve pain) and she began me on ZONEGREN upping the dose to 400mg over 5 weeks.

Well, that was last Monday. Headaches all week, up and down, all over the place on intensity. Friday evening was my best day! Saturday I began to get headaches again, persisted off and on but by Tuesday, I had the best day in 6+weeks. Yay ! Thinking I am getting somewhere.

Well, toilet paper hit the fan Wednesday and I had to get DHE IM,Tordal IM. I was "dying".
Thursday, my internist orders an MRI because I swear my head is going to explode,I have chills and look worse than death. MRI thankfully showed no badness except INFLAMMATION and scarring around my trigeminal area. Labs were all good so back on the prednisone and one last dose of TORDAL for the month.

BUT my D3 was 110ng/nl ! My doc has been very receptive to my trying anything and everything to help my head but wants my D3 level around 80 so I am going to skip doses for 2 days, resume D3 at 15,000iu daily and thinking I don't need the weekly "boost" anymore. She said that if the D3 level gets TOO high,depending on your body chemistry, it can actually result in nervous system excitability and that may have been a contributor to my extreme flare this past week.

I would appreciate comments,advise.
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Re: 123 Days PF And I Think I know Why
Reply #1272 - Feb 16th, 2013 at 8:56am
 
Quote:
My doc has been very receptive to my trying anything and everything to help my head but wants my D3 level around 80 so I am going to skip doses for 2 days, resume D3 at 15,000iu daily and thinking I don't need the weekly "boost" anymore. She said that if the D3 level gets TOO high,depending on your body chemistry, it can actually result in nervous system excitability and that may have been a contributor to my extreme flare this past week

She sounds like an idiot.
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Re: 123 Days PF And I Think I know Why
Reply #1273 - Feb 16th, 2013 at 10:18am
 
I also had an upset belly when I started the vitamins, but I take one of each in the am and then one of each before bed, and that seems to help.   Smiley
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Re: 123 Days PF And I Think I know Why
Reply #1274 - Feb 16th, 2013 at 11:01pm
 
9thNerve wrote on Feb 15th, 2013 at 9:09pm:
Update of D3 Regimen:

I began the D3 regimen Monday Jan 21...  Headaches persisted with vengance.

Checked my D3 level two days later for a "baseline": 64.8ng/nl

Friday, Feb 1, I met with the infamous BATCH to learn how to use O2 properly as an abortive.

After the first 1-2 tries, my pain was brought down by about half.

The next  day , I had a wicked headache but during the first few minutes of hyperventilation, I developed excruciating pain on the Left temple over the Trigeminal area (I had a microvascular nerve decompression surgery in Sept 2011 of the 9th cranial nerve. Bottom line: the  O2 didn't sigificantly impact my headaches ...

Well, that was last Monday. Headaches all week, up and down, all over the place on intensity. Friday evening was my best day! Saturday I began to get headaches again, persisted off and on but by Tuesday, I had the best day in 6+weeks. Yay ! Thinking I am getting somewhere.

Well, toilet paper hit the fan Wednesday and I had to get DHE IM, Tordal IM. I was "dying".

Thursday, my internist orders an MRI because I swear my head is going to explode,I have chills and look worse than death. MRI thankfully showed no badness except INFLAMMATION and scarring around my trigeminal area. Labs were all good so back on the prednisone and one last dose of TORDAL for the month.

BUT my D3 was 110ng/nl ! My doc has been very receptive to my trying anything and everything to help my head but wants my D3 level around 80 so I am going to skip doses for 2 days, resume D3 at 15,000iu daily and thinking I don't need the weekly "boost" anymore. She said that if the D3 level gets TOO high, depending on your body chemistry, it can actually result in nervous system excitability and that may have been a contributor to my extreme flare this past week.


I hate it when that happens... 

Oxygen therapy at flow rates that support hyperventilation and the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 both work very effectively for most CH'ers.  Why they'er not working for 9thNerve is perplexing...  More on this later...

The opportunity to meet with another CH'er is always very special.  The meeting with 9thNerve and her husband was no exception...

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Batch, Joyce and 9thNerve


It took less than a minute...  that's after I got over her stunning beauty and striking resemblance to the actress Michelle Pfeiffer... (Joyce and I agreed later 9thNerve is much better looking), to discover that 9thNerve, her husband and I were all University of Washington alumni... their two sons currently attend the UW to boot...

Then we got on to the topic of cluster headache medications and that opiates didn't work...  That led to a discussion about Svenn's problem with morphine and my trip with him across Norway from Oslo to Haugesund on the West coast where I was scheduled to speak about oxygen therapy at the 2009 Clustercompagniet Cluster Headache & Migraine conference...

At that point... 9thNerve got a big smile on her face.  It turns out she was born and raised less than 10 Km North of Haugesund.

Then it dawned on me...  that was part of her problem...  She's a Viking... Ufda!

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One of the more interesting parts of our meeting came with discussions on oxygen therapy with hyperventilation and the relationship between a vitamin D3 deficiency and cluster headache. 

It turns out 9thNerve's husband is a physician at one of Seattle's largest hospitals. He specializes in the treatment of patients suffering from pulmonary disorders...

He'd read one of my papers discussing both methods of treating cluster headache and commented they both make perfect sense.

Not only did he consider these two treatments very safe based on his medical experience and training, but he also commented that I had connected the dots with these two methods of treating patients with cluster headache that most neurologists have missed up to now...

After the swelling in my head subsided... we discussed what to do next...  As you've likely figured out by now, the visit went very well and we've all been in frequent contact over the last two weeks.

With respect to the anti-inflammatory regimen, 9thNerve is one of the special cases where her 25(OH)D is clearly in the green zone, but she's still getting hit. 

We've discussed this in the past in this thread and the next step is to stop the calcium supplements for a couple weeks and make sure to take vitamin A (retinol) at RDA along with the other vitamin D cofactors.   9thNerve is doing this so hopefully, it's just a matter of time before she starts responding with a significant reduction in the frequency of her cluster headaches.

Her internist also made a correct call in saying a 25(OH)D serum concentration too high can cause problems...  I agree...  However, the threshold for vitamin D3 intoxication is generally thought to be above 200 to 250 ng/mL...  We've had a handful of CH'ers with 25(OH)D serum concentrations this high while under their physician's supervission, and there were no problems with toxicity as indicated by total calcium serum concentrations above the normal reference range.

9thNerve's use of oxygen therapy at flow rates that support hyperventilation is another story...  Given she experiences a new sharp pain near the site of her vascular decompression surgery shortly after starting this method of oxygen therapy, it appears the artery in question is clamping down on the trigeminal ganglion and this is causing the pain.  In short, this method of oxygen therapy is working too well...

That's just a SWAG on my part as I'm not a doctor and we don't have any magnetic resonance angiography to prove it.  That said, any new pain after starting this method of oxygen therapy isn't normal... 

Accordingly, I'm afraid 9thNerve is no longer a candidate for oxygen therapy with hyperventilation.  Oxygen therapy at normal respiration rates may be ok...

That's all for now...

Take care...

V/R, The Infamous Batch   Wink

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