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123 Days PF And I Think I know Why (Read 179969 times)
Batch
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Re: 123 Days PF And I Think I know Why
Reply #100 - Mar 20th, 2011 at 4:16pm
 
Hey Barry,

Thanks for the kind words.  Measuring saliva pH can be a crap shoot at times as pH levels can and will jump around throughout the day and from day to day.  The best way to determine systemic pH using saliva pH as an analog is to do at least three measurements at the same time each day and average them. The sampling technique is also important.

In an attempt to characterize the role of arterial pH in the pathophysiology of cluster headache triggering and abort mechanisms, I conducted a small test by measuring the pH of my saliva before a cluster headache and five minutes after an abort with oxygen therapy at flow rates that support hyperventilation.  I also did this over a two-week period to see if there were any trends without any overt change in diet.

I started by collecting saliva pH measurements three times a day as an analog of arterial pH in order to generate a daily average.

I then measured my saliva pH after awakening with a cluster headache and again following the abort with this method of oxygen therapy plus 5 minutes to allow for the saliva pH to equalize with arterial pH.  The results of this two-week test are illustrated in the graphic below.

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The green line is my daily average saliva pH computed from measurements taken in the morning prior to breakfast, mid-day prior to lunch, and in the evening prior to going to bed.  I rinsed my mouth with water and waited 5 minutes prior to each of these pH measurements to ensure I minimized the effect of any contaminants that could skew the results in one direction or another.  For example if you take a swig of Coke or Pepsi then take a saliva measurement it will read very acidic with a low pH.

The red dots and lines in the above graphic represent my saliva pH measurements taken as soon as I awoke with a cluster headache and the blue dots and lines represent the saliva pH measurement taken 5 minutes after the abort with oxygen therapy.

All the cluster headaches occurred while sleeping and were between pain level 3 and 4 on the 10-Point headache (Kip) pain scale. I aborted all of them with oxygen therapy at flow rates that support hyperventilation (35-40 liters/minute) in 3 to 4 minutes to a pain free state.

I also added pulse oximetry readings starting on Day-7 taking readings at the same time as the saliva pH measurements.  The results are what I expected.  I suspect if I would have had use of a capnometer, I would have seen significantly higher ETCO2 readings than normal upon awakening with a cluster headache.  I also expect these ETCO2 reading would be clearly higher than after the abort with oxygen therapy at flow rates that support hyperventilation.  The reason for the low ETCO2 readings following an abort with this method of oxygen therapy is simple.   This method of oxygen therapy casts of CO2 faster than the body generates it through normal metabolism.

Days 5,10, and 11 I had no CH.  During the evening of Day 14 I had three CH.  This coincided with the day where my daily average saliva pH was lowest.

As you can see from all of the nights where I had a cluster headache this method of oxygen was able to elevate the pH of my saliva on every attempt.

Granted this data is clearly anecdotal with me being the only study subject.  Having said that, the data and results were consistent with what we expected.

Influencing systemic pH with diet and calcium citrate supplements is a horse of a different color as this process is largely metabolic in nature so it occurs at a much slower pace taking several hours where elevating arterial pH with hyperventilation takes only a few minutes.

There's enough medical evidence from a few studies to suggest calcium citrate and citric acid from lemonade or limeade acts as a buffer on the stomach's gastric juices and contents to raise their pH from 2.0 up to a pH of 4.9.  There are also a sufficient number of papers claiming a diet of alkaline forming foods can raise systemic pH.  See the following link:

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Ultimately, anything that can raise systemic pH to the high end of the normal pH of 7.35 to 7.45 or above should stimulate vasoconstriction and that should help lessen the frequency and intensity of cluster headache.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #101 - Mar 20th, 2011 at 6:24pm
 
THAT GRAPH IS BEAUTIFUL, BATCH, BRAVO!
What did you use to measure the pH? Litmus paper? If so what kind?
-Gary
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Re: 123 Days PF And I Think I know Why
Reply #102 - Mar 21st, 2011 at 12:51am
 
Hey Gary,

I used the pH test strips from pHION at the following link:

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Shoot me an email and I'll send you the excel worksheet Michael Berger developed that I used during this test.  Update the date then fill in the data and it will build the graph automatically.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #103 - Mar 21st, 2011 at 10:06am
 
Good Morning everyone, well the 10K I.U. of D3 and 3600 Omega 3 fish oil is started to wearing off. I was great and HA free, just a few shadows.

Short Recap........Started getting hit the mid to end of Feb, nothing big just a few short lived Kip 4's and 5's, I didn't really do anything about it until around the first part of March then started taking 400mg Verap, 200 in the morning and 200 at night no real change still had the Kip 4's - 5's short lived 20-25 minutes then on March 10th got slammed with a kip 9/10 that jarred my memory as the what these things can do. I logged on and read this thread. March 11th I started the D3 and Fish Oil as suggested and was pretty much clear, couple shadows k1to k2 but nothing to bad. I thought I was fixed, everything was fine for about 5 days so I was pf until the 17th then got slammed with a kip 8-9 after that one slipped away I had a kip 4ish shadow that never left, during this never ending kip 4 it would ramped up to a 7 to 9 three to 4 times that day. The evening of the 17th I decided to doubled my verap to 960 mg and have been pf since, I'm still taking the D3 and fish oil. So right now I'm taking 10K I.U. D3 and 3600 Omega 3 Fish oil and 960 MG Verap and so far so good I've now been PF for 4 days and nights. What are your thoughts on taking 960mg of Verap? Thank's in advance for you comments.
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Re: 123 Days PF And I Think I know Why
Reply #104 - Mar 21st, 2011 at 2:24pm
 
[size=14][/size]I know no question is a stupid question.
Being a 38yr old female (episodic)...

I take women's daily multi vitamins and in the summer I am constantly in the sun on the lake.
My weight is 121, so what would you recommend my beginning dosage od D3 and fish oil supplements start out to be safe?
I am not in cycle now, but loom the seasonal changes in Spring and Fall.
Here in Texas, as of current the air allergen quality is at it's highest (12).

I take Paxil, Alprazolam, and Remeron daily for anxiety and wonder about swinging in these supplements may do.

-Kimmie
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Re: 123 Days PF And I Think I know Why
Reply #105 - Mar 21st, 2011 at 6:17pm
 
Hey Kimmie,

You're right... No such thing as a dumb question.

The short answer is 5,000I.U. vitamin D3/day as a maintenance dose and 10,000I.U./day for a therapeutic effect.  There shouldn't be any problem taking either dose with your other med's, vitamins. In fact, the vitamin D3 may help you ween off of the anxiety med's and help combat any allergy as well.  Magic stuff...  Free too if you go out in the sun in a swim suit for 30 minutes...  The skin can make the equivalent of 10,000I.U. in that short amount of time provided you're not using any sun block.

If you go through the attachment I added to this thread in post #73 you'll see both the therapeutic and maintenance dosage for vitamin D3 as well as the new target 25(OH)D3 levels suggested by Dr. Lewis and a lot more.

He lists the following levels for 25(OH)D3 as a practical guide to diagnosis and management. Take these figures or the paper along if you see your physician for a test.  25(OH)D3 is the vitamin D3 metabolite found in the blood. The following 25(OH)D3 levels are in nmol/L:

  • <100 = Deficient
  • 100-200 = Optimal
  • 135-225 = Normal in sunny countries
  • 500+ = Potentially toxic (this would require a sustained daily intake >/= 40,000 IU)

[Note: To convert from nmol/L to ng/ml, divide by 2.5]

Most of us on vitamin D3 are also taking 2000mg. to 3000mg. of the Omega 3 Fish Oil and two of the calcium citrate tablets formulated with vitamin D3, magnesium and zinc.

My wife is on this complete regimen and she doesn't have CH.  She's got more pep, getup & go and bounces around like a kid.  Me too for that matter.  This is also a healthy heart regimen you can take year round.

Download and read the paper by Dr. Lewis...  Very telling.

Take care and let us know what happens when your usual episodic cycle normally starts.

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #106 - Mar 22nd, 2011 at 4:30am
 
Hi, just wanted to update you on how things are going - I started taking 10,000 i.u 3D, 2000mg omega 3 and 1 cal mag. CH stopped but the dosing caused constant nausea. I cut the dose by half and over the week the CH gradually came back until yesterday when I have 4, all about a kip 4 - 5 and all lasting nearly 2 - 3 hours!!!!! making it really difficult to work. ( does anyone else find they can't wear glasses whilst having a CH? ) So I am now trying 4000 i.u 3D, 1000mg omega, and 1 cal mag with breakfast and 6000 i.u 3D, 1000mg omega 3 and 1 cal mag with dinner, fingers crossed.
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Re: 123 Days PF And I Think I know Why
Reply #107 - Mar 22nd, 2011 at 11:30am
 
Hey all-
Just started with 10,000 IU D3 and 3000 Omega 3 Fish oil. I will post daily results for the next couple of days.
Best Regards to All
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Re: 123 Days PF And I Think I know Why
Reply #108 - Mar 22nd, 2011 at 4:36pm
 
Beer test passed!!!!! Thanks everyone for the help, Batch I think you are definately on to something here with this formula. I was ready this time with the O2 and 25 lmp regulator. Wow only 2 weeks with the headaches all knocked out with the o2 at night, then started Batch's formula and nothing after the second night of his full strength formula. I promiss to stick around  this time, to see others trials with this and help when I can.   Jay
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Re: 123 Days PF And I Think I know Why
Reply #109 - Mar 23rd, 2011 at 9:14am
 
Hey all-
Reporting on my first night after using 10,000 u.i. B3 and 3000 u.i. of Omega 3. I got hit 3 times last night. The first being the most severe at a 7 or 8, the second a 5 or 6 and the third a 4 or 5 (1:30 am). Slept the rest of the night which IS an improvement. Took my B3 and Omega 3 doses this AM. I will report back tomorrow AM on tonight's results.
Best to All.
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Re: 123 Days PF And I Think I know Why
Reply #110 - Mar 23rd, 2011 at 9:24am
 
Quote:
Magic stuff...  Free too if you go out in the sun in a swim suit for 30 minutes...  The skin can make the equivalent of 10,000I.U. in that short amount of time provided you're not using any sun block.

Be forewarned, however - not the best method for extremely white guys like me who have just had their fourth basal cell carcinoma removed via surgery.

I think the capsules are a better alternative for my ilk.

Our parents were more concerned with keeping us out of the pool for an hour after we ate (lest we get "a cramp") than they were about keeping our basal layer of skin from being repeatedly damaged by the sun.
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Re: 123 Days PF And I Think I know Why
Reply #111 - Mar 23rd, 2011 at 12:43pm
 
Going to the supplement store Smiley

I'm assuming it is probably better to start my regimene now until waiting for cycle.

Thanks Batch! Smiley
xoxo
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Re: 123 Days PF And I Think I know Why
Reply #112 - Mar 23rd, 2011 at 9:12pm
 
Kimmie

This is the sort of thing we need to see happening, if by taking these sups you can defer or put off completely an episode it can only give others hope.
Fingers crossed that it goes well for you young lady.

Cheers
Barry
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Re: 123 Days PF And I Think I know Why
Reply #113 - Mar 24th, 2011 at 8:03am
 
Good Morning-
Well, last night (after two days of 3000 UI Omega 3 and 10,000 UI D3)-I had 4 visits from the beast, the first was nothing, a KIP 2 (at most) before bed, second hit was off the hook (9) and when it left I had a dull pain behind my eye and sinus till the next hit came (6 or 7). Got a few hours sleep till I was woken by one more mild hit (3 or 4, enough to wake me up). I am wondering wether or not I should continue w/the 3000 UI Omega 3 and the 10,000 UI D3.............
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Re: 123 Days PF And I Think I know Why
Reply #114 - Mar 24th, 2011 at 10:57am
 
skeevedout,

Thanks for the feed-back.  Are you also taking the calcium citrate tablets formulated with vitamin D3, magnesium and zinc?  More that a few have found adding a couple of these tablets a day helps. 

There are other ways of measuring the effectiveness of this regimen...  For example, is your oxygen therapy working better with faster aborts? Do you feel better in general?

We're still collecting data on this regimen and although several CH'ers are experiencing a reduction in the frequency and intensity of their CH in the first two days after starting it, others appear to be taking a little longer.

As to continuing or not...  that's your call.  Like all other types of treatments for our disorder, none are 100% effective. 

To my way of thinking, it's all a matter of assessing the risk-benefit ratio. 

If the risk of harmful side effects is low and the benefits appear to offer only a marginal improvement...  it's a push.

If the risk of harmful side effects is relatively high and the benefits appear marginal...  you need to make a decision...  is the treatment worth taking?

If the risk of harmful side effects is low and the benefits appear high...  It's a no-brainer.

Would you continue to take verapamil if you were still experiencing the same number of heavy hits a night?

What I can say is this is a very healthy regimen with no harmful side effects and a high upside potential to keep you as healthy as possible.  My wife is on this same regimen and she doesn't have CH.  She feels great and bounces around the house and yard like a kid.  Me too for that matter.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #115 - Mar 24th, 2011 at 11:19am
 
Batch-
Thanks for chiming in, I am not taking the calcium citrate tablets formulated with vitamin D3, (Is this the 10,000 I.U. w/the calcium citrate in one tab?), the magnesium nor the zinc. I will pick some of this up today. I did indeed decide to do another daily dose of 10,000 IU D3 and 3000 IU of Omega 3. I am not on any O2 or Verapimil (Doc gave me a script for Sumartripan (six single-shot inhalers) which worked like a charm while I had them (waiting to hear back about a refill [Insurance will only cover 6 a month but my doc says he is going to try to change that for me]). Have had CH since mid-20s, 49 now and over the last 10-15 years, attacks are less frequent and more manageable (till 2 weeks ago). Last bout w/the beast was 3 years ago. I will post tonight's adventures tomorrow AM.
Thanks Again and Best Wishes to All
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Re: 123 Days PF And I Think I know Why
Reply #116 - Mar 24th, 2011 at 12:33pm
 
Hey Skeevedout.

Good question.  The complete regimen is actually a combination of two separate regimens I've used to lower the frequency and intensity of my CH...

I originally started using them to improve the abort times with oxygen therapy during high cycles where the aborts with oxygen therapy took longer than usual.

We think the anti-inflammatory regimen works to reduce the neurogenic inflammation in and around the trigeminal nerve that's associated with the cluster headache syndrome...   The buffering regimen elevates arterial pH making it more alkaline in the hopes of reducing the vasodilation also associated with the cluster headache syndrome. A low arterial pH (too much acid) tends to trigger vasodilation and that aggravates CH.

The anti-inflammatory regimen consists of 10,000I.U. vitamin D3 and 2000mg to 3000mg Omega 3 Fish Oil taken daily.

The buffering regimen consists of 2 to 3 of the calcium citrate tablets formulated with vitamin D3 (800I.U. in two tablets) magnesium and zinc washed down with citric acid from lemonade or limeade taken each day.  I've also used margarita mix as it has additional citric acid. 

The combination of calcium citrate and citric acid acts as a buffer on the stomach's gastric juice and contents elevating the mix from a pH of 2.0 up to 3.9.  The magnesium helps in this process as well.

Hope this helps clarify what I take on a daily basis.

Regarding oxygen therapy... it is the most effective and least invasive cluster headache abortive available to us.  It has no harmful side effects.  It's also the least expensive abortive and there's no limit on insurance coverage like there is on imitrex due to it's cost. 

If used at flow rates that support hyperventilation, oxygen therapy can result in abort times that rival the subcutaneous injections of imitrex (sumatriptan succinate).  I would typically abort my CH in 3 to 4 minutes with this method of oxygen therapy if I caught the CH early.

Take care,

V/R, Batch
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Re: 123 Days PF And I Think I know Why
Reply #117 - Mar 24th, 2011 at 1:20pm
 
Thanks again Batch !!!
Just heard back from the Doc AND my Insurance Co. Insurance Co. says any more than six doses of the Sumartriptan is DANGEROUS/NOT SAFE, (I think that they just don't want to pay the $225 for six measly doses) so no more "Magic" cure for me. Doc is going to prescribe Verapamil. I have an appointment w/a Neurologist Mon. (like finally meeting the wizard of Oz) - will see what he has to say. Might have to look into O2 soon.
Thanks Again/Best Regards
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Re: 123 Days PF And I Think I know Why
Reply #118 - Mar 24th, 2011 at 2:00pm
 
skeevedout wrote on Mar 24th, 2011 at 1:20pm:
Might have to look into O2 soon.


Don't just think about oxygen, do it. You'll soon see why so many of us who use oxygen so effectively to abort our CHs sing it's praises. Having used oxygen to abort CHs for over six months there is no way I want to go anywhere without a cylinder knowing I can be pain free in minutes (average is under 6 minutes) with no side effects.
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Re: 123 Days PF And I Think I know Why
Reply #119 - Mar 24th, 2011 at 6:32pm
 
I think I have finally got my dose right and am now pain free  Smiley . I take 6000 i.u D3, 1000mg omega 3 and 500mg calcium, 200mg magnesium with fruit juice at breakfast and the same again with dinner. I have no nausea, CH, or shadows, in fact I haven't felt this good since I dont know when.
Thanks Batch for the advise, it really helped.   Smiley
I know this works because when I halved the dose my CH came back and within 2 days of taking the full dose again they stopped. I'm not brave enough to do it again - not for a while anyway.
I really hope everyone that reads this thread will give this a try - you may have to adjust the doses to suit you but in the end you have nothing to loose.
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Re: 123 Days PF And I Think I know Why
Reply #120 - Mar 24th, 2011 at 11:25pm
 
oxyrunner wrote on Mar 24th, 2011 at 6:32pm:
in the end you have nothing to loose.


Exactly: you will never know if you like banana ice cream if you never try it  Smiley
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Re: 123 Days PF And I Think I know Why
Reply #121 - Mar 25th, 2011 at 7:28am
 
Same, same as last night. Today I will add calcium citrate, magnesium and zinc........
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Re: 123 Days PF And I Think I know Why
Reply #122 - Mar 25th, 2011 at 10:37pm
 
I have been TOTALLY PF a whole week now, even got to celebrate with a few beers yesterday!  I've been on the supps a total of 3 weeks today. According to my notes, I began taking 7,300 IU Of D3, 1200 mg calcium, 2,000 mg of fish oil, 750 mg magnesium, 50 mg zinc, Within 3 days the hits were fewer, and no more than a kip 4. I upped my D3 to 8,300 IU after the 5th day of beginning the supps, and started taking benadryl and 10 mg melatonin at night, after which I had a vast improvement where I was having PF nights about every couple of nights, with the hits I did get being so light I didn't even need my oxygen. 14 days after starting the supps, I was totally PF, This was only 3 weeks into my cycle-my last cycle lasted 8 weeks. Oh, and as an added benefit, I am sleeping more soundly than I ever have! I will begin lowering my vitamin D dose to about 5,000 IU until I take my vit d level.  I am a believer, thanks, Batch!  Smiley
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Re: 123 Days PF And I Think I know Why
Reply #123 - Mar 25th, 2011 at 10:40pm
 
Anybody know where to get D3 in bulk, i.e., at a decent price? 10,000 IU per day gets a bit pricey at retail.
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Re: 123 Days PF And I Think I know Why
Reply #124 - Mar 25th, 2011 at 10:58pm
 
walmart has their brand calcium citrate 630mg with 500 IU vitamin D (in 2 caplets) ALOT cheaper, than the name brands, although they are ALOT harder to swallow (horse pills).  They also have the 2,000 IU softgels D3-in a twin pack pretty cheap. And a multivitamin would add probably 800 IU of D 3  (mine does) I take a calcet petities 750 IU  vitamin D with 600 mg calcium per 3 tabs. Another easy-to swallow one is Citracal petites-500 IU of d, 400mg calcium in 2 tabs.
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