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





Pages: 1 ... 102 103 104 105 106 107
Send Topic Print
123 Days PF And I Think I know Why (Read 318601 times)
LasVegas
CH.com Sponsor
***
Offline


Episodic CH since 11 yrs
old, now 50.


Posts: 2020
north of the 60th parallel
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2575 - Apr 13th, 2018 at 2:37pm
 
Based on CH Vitamin Regimen as of January 2017

Need clarification on K2, A, B50, and loading phases:

1. K2 = MK4 1,000 mcg/day & MK7 200 mcg/day.
Take both MK4 & MK7 dosages or choose one?
How is K2 different than K?
My multi has K as phytonadione 75 mcg. Is MK same as menaquinone-7?
My K2 is 100 mcg of menaquinone-7Ö.is this sufficient?

2. A = Retinol 900 mcg aka 300 IU/day.
OK for retinal palmitate?
My multi has A as beta carotene, mixed caratenoids 10,000 IU.

3. B50 = 3 month course, after that the 7 B vitamins in Mature Multi will be sufficient.
Which 7 B vitamins?
Why Mature Multi for younger CHíer?
What are dosages recommended of the 7 B vitamins daily?
My multi has B6 & B12 listed, might be others disguised by another vitamin name!?! B6 is pyridoxine hydrochloride 50 mg & B12 is cyanocobalamin 100 mcg.

4. Loading phase recommended vs required? Imagine there are timeline studies showing advantages of loading phase when completely deficient?

5. Loading phase dosages - besides D3, what other cofactors are important to increase during loading phase and what are those corresponding recommended dosages?

Thanks in advance to any knowledgeable replies. Wink
-Gregg

PS this month of April, the retail chain Vitamin Shoppe is running a month long sale of 50% off store brand vitamin products.


Back to top
  

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
IP Logged
 
Joseph BIG
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2576 - Apr 15th, 2018 at 11:05am
 
Hi Batch and How are you?

I would like to give some updates.

I have been taking Broncho-D for the past 3 days. One full spoon after meal and same before sleep. On the first day I took it, I felt significant relief in frequent and severity of my CH... Although some minor attacks arrivedÖthey are much, much lower in pain.
I still take the same regimen and lowered the vitamin D3 to 10,000iu a day (I am after 2 weeks plan of 50k and 40k). I also added the vitamin C daily.

Question:
I am afraid to stop taking the Broncho-D. When should I stop? at the time I will be pain free?
What would happen if I stop taking it and the beast returns ugly?

Joseph.
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3679
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2577 - Apr 15th, 2018 at 6:00pm
 
Hey Joseph,

Great question.† From my own experience, the sooner you can wean yourself from the Diphenhydramine HCL, the better.† It works, but too much for too long creates other problems we don't really need.† That said, keep it handy.† The liquid form can be held in the mouth and under the tongue without swallowing for 5 minutes for a sublingual application that works surprisingly well as an abortive in 20 to 30 minutes.

From the decreased frequency and severity of your CH, it's likely you need a higher 25(OH)D serum concentration.† That is easily accomplished with a few more days at a loading dose of 50,000 IU/day then a higher maintenance dose of 15,000 to 20,000 IU/day.

There's sufficient medical evidence that both vitamin D3 and 25(OH)D enter target astrocytes and neurons within the trigeminovascular complex to down-regulate the expression of CGRP, SP, neurokinin A (NKA) and other neuropeptides that are responsible for the neurogenic inflammation and pain we know as cluster headache.† †

Data I've collected over the last 8 years suggest that under normal conditions, the therapeutic effect of the anti-inflammatory regimen works in three phases and is dependent on the relative concentrations of serum vitamin D3 and 25(OH)D3.†

During the first phase where some CHers experience a CH pain free response or a significant reduction in the frequency of their CH in as little as one day to a week, this response is due mostly to the serum concentration of vitamin D3.† During the second phase, which lasts a few weeks to a month, the therapeutic effect is due to a combination of vitamin D3 and 25(OH)D3.† During the third phase, the therapeutic effect is due to primarily to the 25(OH)D serum concentration.

The serum half-life of the parent vitamin D3 at 24 hours and the half-life of the 25(OH)D metabolite at 3 to 4 weeks helps explain these three phases.† †During the first phase, the serum concentration of vitamin D3 is much higher than 25(OH)D.† In this case, if we stop taking vitamin D3, our CH return in as little as 24 hours as vitamin D3 is consumed in this much time.† In the second phase where the serum concentrations are nearly equal between 60 and 80 ng/mL, it takes a few days to a couple weeks for CH to return if we stop taking vitamin D3.† In the third phase, and particularly for chronic CHers, where 25(OH)D concentrations are well above 120 ng/mL we can go as long as a month or more before CH return after stopping vitamin D3 intake.

Again, this is only during "normal" conditions.† When an allergen such as pollen, mold spores, pet dander and other pollutants are present, all bets are off... Allergens are an antigen that trigger our immune systems into producing Immunoglobulin E (IgE) in response to a sensed threat.† This is called an allergic reaction.† During an allergic reaction, mast cells are triggered into degranulation or dumping of granules containing a long list of stimulus-specific set of mediators including: histamine, heparin, serotonin, prostaglandins, leucotrienes, TNF-α and the list goes on...†

We know that histamine has the capacity to trigger astrocytes and neurons into expressing CGRP, SP and other potent vasodilator peptides that are also responsible for the pain we know as cluster headache.† We also know that CGRP and likely other peptides released trigger mast cells into more degranulation. This creates a circular chemical chain reaction resulting in a flood of CGRP, a.k.a., a CGRP cascade.† When this happens, none of the standards of care CH interventions are effective.† The only courses of action are to block the histamine with a first-generation antihistamine that passes through the blood brain barrier to block histamine H1 receptors at the genetic layer, reduce the concentration of the allergens triggering the allergic reaction or a combination of both.

Diphenhydramine HCL comes in handy in the first case for seasonal pollens.† Mold spores can be more difficult as they can be with us year round. They grow anywhere there's moisture like the drip pan in a frost free refrigerator freezer, air conditioners, showers and laundry.† Keeping these areas clean helps reduce the concentration.† A hypoallergenic, HEPA rated electrostatic dust filter in the bedroom can also help.

One of the other problems in this area are dust mites.

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

These little beasties have been with humans for thousands of years.† They infest beddings, carpets and anywhere we walk or sit in the house with fabric covers as they eat dead skin that sluffs off of us constantly.† The problem with dust mites is the poo they drop.† It contains proteins that act as potent allergens that are easily swept into the air we breath. A vacuum cleaner with a HEPA filter will help.† The other method of reducing the concentration of dust mite poo is with hypoallergenic pillow and mattress covers.

So there you have it...† I'd take a couple days vitamin D3 loading dose at 50,000 IU/day then bump the maintenance dose to 15,000 or 20,000 IU/day.† I'm a chronic CHer and as we're in the peak of Alder and Big Leaf Maple tree pollen... I'm taking an average of 30,000 IU/day vitamin D3 to stay CH pain free.† If I miss a day, the CH beast starts jumping ugly...

Of course you'll need to see your PCP for lab tests of your serum 25(OH)D, calcium and PTH after a couple weeks at a stable maintenance dose of vitamin D3.

Take care and please keep us posted.

V/R, Batch
Back to top
« Last Edit: Apr 16th, 2018 at 12:29am by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3679
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2578 - Apr 15th, 2018 at 7:24pm
 
Hey Gregg,

Sorry to be so slow in responding...  It was tax time and She, who must be obeyed, wanted it done on time...  It was...

Good questions...  I take Super K with vitamin K1 and the vitamin K2 complex (MK4 and MK7).  MK7 is preferred as it has a longer half-life.  Vitamin K1 is the clotting vitamin that comes from plants.  Vitamin K2 which comes from fermented vegetables, has a different role of drawing calcium from soft tissues and arteries then acting as a catalyst in building bone mineral density.  I think of this process with vitamin D3 pulling calcium from the gut and pushing it into the bloodstream and vitamin K2 acting as the catalyst in causing that calcium to form strong bones.

Regarding Vitamin A (Retinol), 900 mcg (3,000 IU) for men, 700 mcg (2,333 IU) for women is the maximum suggested dose.  We need a little preformed vitamin A (Retinol) but not too much.  900 mcg of retinal palmitate is fine.  You can eat/take as much of the mixed caratenoids you want.

Regarding the vitamin B complex, I added the 3-month course of vitamin B 50 complex at the suggestion of Dr. Stasha Gominak, MD a neurologist who treats patients with sleep, chronic pain and headache disorder using a very similar vitamin D3 protocol.  When I spoke with her at the 20 Workshop on Vitamin D in March of last year in Orlando, FL, she said she now suggests vitamin B 100 complex year round.  I'm considering the same change to vitamin B 100 in the next version of the anti-inflammatory regimen but not year round.  As the Kirkland 50+ Mature Multi contains sufficient amounts of the seven B vitamins and folic acid once any deficiencies have been corrected with the three month course of vitamin B 100, I see no reason to make it a year round part of the anti-inflammatory regimen as 3 months is sufficient to take care of any deficiencies.  My rationale is simple.  As I view this regimen to be a way of life taken daily to prevent CH and maintain good health, I'm trying to keep the total pill count and expense as low as possible.

Regarding loading...  The fastest and shortest path to a CH pain free response is one that increases serum vitamin D3 and its first metabolite 25(OH)D as fast as possible and yet still gives our systems time to adjust to higher doses of vitamin D3.  If improved bone mineral density (BMD) was the only goal, I'd suggest a single oral dose of 600,000 IU of vitamin D3.  There are several RCTs that have investigated doses this high and found them effective in building BMD.  However, as we also need the enzymes needed to hydroxylate vitamin D3 to 25(OH)D and on to 1,25(OH)2D3, and their rate of production likely takes time to develop, I've opted for the 12-Day or 14-Day loading schedules.  12-Day for ECHers and 14-Days or more for CCHers.  The rationale for this follows...

1,25(OH)2D3 is not the only vitamin D3 metabolite produced when 25(OH)D is hydroxylated.  1,24,25(OH)3D3 and 24,25(OH)2D3 are also produced particularly if the body senses there's too much serum 1,25(OH)2D3 available. This is the body's way of maintaining vitamin D3 homeostasis...  i.e., keeping vitamin D3 in balance...  These two metabolites of vitamin D3 do nothing for us as CHers as they're not genetically active and they're easily catabolized, (broken down and eliminated).  If too much of the available 25(OH)D is hydroxylated to 1,24,25(OH)3D3 or 24,25(OH)2D3 not enough is left to prevent CH.

Hope this covers the bases...

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, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
Joseph BIG
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2579 - Apr 16th, 2018 at 3:55pm
 
Thank you very much Batch.

I will follow your directions and keep you posted.

Joseph.
Back to top
  
 
IP Logged
 
LasVegas
CH.com Sponsor
***
Offline


Episodic CH since 11 yrs
old, now 50.


Posts: 2020
north of the 60th parallel
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2580 - Apr 17th, 2018 at 4:10pm
 
Thanks Batch, I appreciate your reply. Unfortunately it is written too sophisticated for me to understand. Maybe I need a better night's rest and re-read it Wink

-Gregg
Back to top
  

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
IP Logged
 
sledgehammer
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 11
Re: 123 Days PF And I Think I know Why
Reply #2581 - Apr 24th, 2018 at 11:18am
 
Hello.  Its been awhile since i have posted here.  Since i started the anti-inflammatory regime in August of 2014, I have totally forgotten about my clusters. 4 months away from being 4 years of no clusters.  I had actually forgotten about having them until i cleaned out my old work truck last week in preparation for my new truck and found my emergency supply of relpax packed away in the bottom of the console.
Just wanted to come back and give an update. I have been on 2400mg-720mg of fish oil & omega 3, 10000 iu d3, and a Centrum multivitamin daily.   
Hopefully I continue to be clusterless!
Thanks once again Batch!
Back to top
  
 
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 #2582 - Apr 24th, 2018 at 3:58pm
 
Great news that you're one of the many people who have gone CH free for multiple years using D3. Long may it continue.
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3679
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2583 - Apr 25th, 2018 at 12:31pm
 
Hey Sledgehammer,

That's great news.† Thank you for sharing it with us.† Have you had the lab test of your serum 25(OH)D lately?† It would be helpful to know the 25(OH)D serum concentration is keeping you CH pain free. Data from the online survey of CHers taking this regimen at 10,000 IU/day vitamin D3 indicate an average serum 25(OH)D concentration around 80 ng/mL.

Thanks again for the wonderful news.

V/R, Batch
Back to top
« Last Edit: Apr 26th, 2018 at 10:44am by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
supporting role
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 7
Re: 123 Days PF And I Think I know Why
Reply #2584 - Apr 25th, 2018 at 9:08pm
 
Kia ora Mike,

I'm a new member to the forum, as the wife of a guy who's been getting episodic CH every other year for about 12 years now. He traditionally gets one a night. We are Kiwis too. I have got a lot of info from this forum and am very appreciative of everyone's generosity with info and encouragement.† I have joined not because I have anything to add, sorry, but to ask advice from a NZ perspective.

Second to last cycle he started to wake up with rebound headaches so I investigated O2. This time round I managed to get a D tank of O2, an "up to 15LPM" regulator, and a non rebreathable mask - (so much work -† but so excited in anticipation for my guy).

So he tried it for about 15 minutes and he thought maybe it had subsided a bit and then wanted to stop because he didn't like it (sitting up, feeling nauseous and not liking the sensation of running out of air when the small reservoir bag was emptied and having to wait for it to fill again).

I suspected we should've kept going till 1)he was pain free, and 2) we then turned it down to say 7 lpm and continued for another 10-15 mins†

Sure enough he got a re-attack about an hour later - and reached for the drugs.

I'm not sure what to do next -† I've tried to find a local supplier of a non- rebreathable mask with a larger reservoir with no luck at all. I reckon he'd like the simple mouth piece option like I've seen on Batch's info sheet but I don't know how to access that either here - it looks like it may need a different kind of regulator.

Any ideas please?

thanks† Smiley

Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3679
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2585 - Apr 25th, 2018 at 10:37pm
 
Dear Supporter,

I know what you and your husband are going through and the good news is it doesn't need to be that way....

Make a Redneck Oxygen Reservoir Breathing system for your husband.† It will take less than five minutes, a clean kitchen trash bag, the top half of a plastic Coke bottle with cap, the oxygen tubing from the POS disposable oxygen mask that doesn't work (Cut it off at the mask), some Duck Tape and some electrician's tape.

Here's the "How To" as well as the procedure for oxygen therapy your husband will love.

In researching why oxygen regulators with flow rates high enough to support hyperventilation and oxygen demand valves were more effective with shorter CH abort times than a constant flow regulator at 15 liters/minute, I found that lowering serum CO2 was a key component in obtaining fast and reliable CH aborts.†

A lower arterial CO2 content elevates the arterial pH (more alkaline) and this is a more powerful vasoconstrictor than oxygen even at 95% purity from the oxygen concentrator.† The elevated alveolar pH enables blood hemoglobin to upload roughly 15% more oxygen so this turbocharges the blood oxygen flow to the brain to help make the abort even faster and more reliable.

Around 2011 I developed a new method of oxygen therapy called Hyperventilation and Oxygen Therapy that has proven to be just as effective as a 40 liter/minute regulator or an oxygen demand valve in delivering rapid and reliable CH aborts.†

This method of oxygen therapy essentially calls for hyperventilating at forced vital capacity tidal volumes with room air for 30 seconds followed by the inhalation of a lungful of 100% oxygen that's held for 30 seconds before exhaling into the room and repeating the hyperventilation with room air.†

You keep repeating this complete sequence until the CH pain is gone...† usually in 4 to 7 sequences (Minutes).

Hyperventilating with room air accomplishes the same thing as hyperventilating with a regulator set at 40 liters/minute or an oxygen demand valve except it uses no oxygen.† The only oxygen consumed with this method of oxygen therapy is the inhaled lungful ~ 4 liters, that's held for 30 seconds.

This method of oxygen therapy consumes roughly 4 liters of oxygen a minute and results in an average abort time of 7 minutes for a total of 28 liters of oxygen per abort.† That's roughly a tenth the amount of oxygen consumed with each abort with an oxygen demand valve or high flow regulator set at 40 liters/minute.

An explanation of this method of oxygen therapy follows:

Make sure the Redneck reservoir bag is fully inflated. the bottle cap on snugly and the cylinder supply valve is closed.†

Start this procedure by standing to give your diaphragm full range of movement... Dropping your jaw like saying the word "Haw" also helps.† This is important as standing during this procedure helps ventilate the lungs more completely.† Lean against a wall if you get dizzy while using this method of oxygen therapy.† If you get too dizzy, sit erect in a chair.

The next step is exhale forcibly through your mouth until if feels like your lungs are empty...† they're not!† Do an abdominal crunch like doing sit-ups and hold the squeeze until your exhaled breath makes a wheezing sound for a couple seconds.

It sounds terrible but it's a very important part of this method of aborting a CH with oxygen...† This forced exhalation breathing technique will squeeze out another half to a full liter of exhaled breath.† This last volume or end tidal flow of exhaled breath has the highest CO2 concentration and blowing off CO2 is the key to the effectiveness of this procedure.

Then without delay, throw your head and shoulders back and inhale room air as rapidly and deeply as possible until you can't inhale any more.

Again without any delay, use the forced exhalation technique.† Keep repeating this sequence as fast as possible with room air for 30 seconds.† You should be able to complete 10 of these complete cycles in 30 seconds.

At the end of the 30 seconds breathing with this technique, exhale forcibly one more time and hold the squeeze for a good 5 seconds...† then unscrew the Coke bottle cap, place the bottle mouth to your lips and inhale a lung full of 100% oxygen as rapidly as possible and hold it for 30 seconds. Replace the bottle cap, open the cylinder supply valve and set the regulator flow rate at 3 to 4 liters/minute.

I know it's difficult, but try to relax at this point.† While you're waiting, check the regulator is filling the Redneck reservoir bag for the next breath of oxygen.

If you're doing this breathing technique properly, you'll start feeling the symptoms of transient paresthesia and a slight dizziness...† These temporary symptoms of paresthesia include a very slight tingling/prickling of the face, lips, and fingertips.† You'll also experience a slight rush and a chill across your back when you start holding the lungful of oxygen...† Paresthesia is the best indication you've pushed your body into respiratory alkalosis... (Made your blood more alkaline).

At the end of the 30 seconds holding the lungful of oxygen, exhale into the room with a good chest squeeze... then repeat the above sequence until the pain is completely gone...

Be sure to practice this procedure for a few cycles before the cluster beast attacks...

If you start this procedure at the first sign of an approaching CH attack, you should be able to abort the attack in four minutes or less...† and with as little as 16 to 20 liters of oxygen...

If the CH hits while sleeping and is well established or rising, start this procedure as fast as possible.† It will work effectively through pain level 9, (Kip 9), it will just take longer.

I also invented what I call the Redneck Oxygen Reservoir Bag made out of a clean 40 gal trash bag or 30 gal kitchen garbage bag.† I use a plastic Coke bottle with its cap and the bottom cut off.† (The bottle top serves as the mouthpiece), the tubing from an old disposable non-rebreathing oxygen mask, some electrician's tap and some Duck tape.† After the Coke bottle mouthpiece has been inserted through one corner of the bag's bottom and the oxygen tubing through the other corner, I seal both with electrician's tape for an air tight seal then close the open end of the bag with a strip of Duck tape as illustrated in the following photos.

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

It turns out my Redneck Reservoir bag works exceptionally well with an oxygen concentrator or low flow rate oxygen regulator.† You make sure the cap is secure on the Coke bottle then plug the oxygen tubing into the barb fitting on the oxygen concentrator and turn it on.† When the Red Neck Reservoir is filled completely, turn off the oxygen concentrator or cylinder supply valve.† The Red Neck Reservoir is now ready for use to abort a CH using the method described above.† All you need to do is unscrew the Coke bottle cap to inhale the lungful of oxygen then replace the cap.† It also helps to turn on the concentrator or open the cylinder supply valve.

Other than the cost at less than $1 in piece parts, there's one more benefit of this contraption... There is no inhalation resistance and your husband will be able to inhale a big lungful of oxygen easily as many times as needed.

Hope this helps...

Take care and please keep us posted.

V/R, Batch
Back to top
« Last Edit: Jan 24th, 2019 at 7:24pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
supporting role
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 7
Re: 123 Days PF And I Think I know Why
Reply #2586 - Apr 26th, 2018 at 1:30am
 
Hi Batch

Thanks very much, could you please give me the approximate dimensions of that bag?

thanks again


Back to top
  
 
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 #2587 - Apr 26th, 2018 at 5:02am
 
Kia Ora (hello to those not too used to how we sometimes greet each other here in NZ)

Batch's kit works well for many.

Another option than many have used is the O2 kit from the store here - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Quite a few people have used this, including myself, with good results.

I've got two regulators, one a 25lpm and one a 15lpm. For quite a while I was commuting to Wellington weekly, so I kept the 15lpm one in an apartment there and the 25lpm at home (where I got most of my CHs).

Using the hyperventilation method as described by Batch, at 25lpm I could abort in about 3-4 minutes. But at 15lpm it took 12-15 minutes, with the difference being very significant with a CH building.

I got my 25lpm regulator from BOC, with one current option being - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (looks quite like mine). BOC have outlets throughout NZ and make sure it matches the cylinder you have.

One thing that some people have found helpful is to practice the breathing technique when you don't have a CH, which makes it so much easier to just concentrate on the O2 part. Having pain like someone is poking a hot poker into your eye or similar makes a lot of stuff just a bit harder to do.

Have you also read through our O2 page - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. It has a load of useful info, but validate with your O2 supplier here info about matching tank sizes / colours / regulator types to match the size, etc.

I also wrote up how I got O2 - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register - which has a lot of NZ specific info.

And make sure he doesn't give up on oxygen. Sure it can be tough the first few times, but then so can many things. But you'll read here many times over how it has made a huge difference to people.

Has he also got sumatriptan (Imitrex) injections? Many GPs / neuros just don't know about them so the prescribe the pill form which takes 20+ minutes to work, which is a whole lot of pain. Your GP can prescribe them and he can get a dozen or so for NZ$5 (US$3 - a whole lot cheaper than the US).

Does he have a preventive? I think all the standard ones are available in NZ (I've tried a few over the years).

Have you looked at using D3? - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

This had been highly effective for many, 80%+, and I'm one of many to be CH free for multiple years. I'd strongly recommend you look at and try it.

Anything else, just ask, either here or via PM.
Back to top
  
 
IP Logged
 
supporting role
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 7
Re: 123 Days PF And I Think I know Why
Reply #2588 - Apr 26th, 2018 at 5:56am
 

Thanks very much Mike! Quality answers!

Batch's D3 regime was of particular interest, while I'd read about it before, not in this detail.

Reading that infections can reduce your D3 levels leaving you vulnerable to CH really rang bells. My guy is either in a cycle of skin infections (and associated antibiotics) OR a cycle of CH, but I hadn't made the connection between the two because the circadian association of CH threw me off.

So going to get that underway!

I wonder if I can get a test done in NZ or if I just choose a loading dose at random and get started?

thanks again to both Mike and Batch



Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3679
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2589 - Apr 26th, 2018 at 11:23am
 
Dear Supporter,

I've sent you a PM with additional information on the anti-inflammatory regimen with Vitamin D3. You can access your PM InBox by clicking on the bold print under the date in the upper left corner of this screen that says
You have 1 new message
.

Regarding the kitchen trash bags, I used a GLAD 13 gallon size. They hold roughly 40 liters of oxygen and that should be sufficient to abort most CH without refilling during use.

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, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
supporting role
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 7
Re: 123 Days PF And I Think I know Why
Reply #2590 - Apr 26th, 2018 at 5:11pm
 
Hi Batch

Thanks very much for that info, have requested the serum test this morning. Will buy a shopping bag today!

thanks - will keep you posted.
Back to top
  
 
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 #2591 - Apr 26th, 2018 at 5:11pm
 
Batch is the real guru on O2 and D3, so I'm really just following up with what I've learnt.

The D3 stuff can be sourced within NZ, but the D3 is what most people around the world source from the US via iherb.com, mainly as it works out a lot cheaper that way.

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

Infections, allergies and similar can impact D3 levels, which is potentially why for a lot of people who are episodic there is an increase in the number of cycles kicked off in spring / autumn (fall).

You can get the test done for the D3 levels, but it isn't funded through the public health system. But you can get it done through your local medical lab, the name of which will vary through the country. As an example, for Auckland - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. The cost was about $40 the last time I did it.



Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3679
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2592 - Apr 27th, 2018 at 1:29am
 
Hey Mike,

Thank you for the stellar support and back up from NZ.† It really helps to have a local expert who knows the local health care "ropes" and "How To" do what needs to be done to get started on the anti-inflammatory regimen.

Data from the March 2018 harvest from the online survey of CHers taking this regimen since December of 2011 has given us some important information that CHers and migrainerus need to know.

For example the mean 25(OH)D serum concentration for Episodic CHers experiencing a favorable response to the anti-inflammatory regimen is 80 ng/mL.† For Chronic CHers, the mean 25(OH)D serum concentration for a favorable response is 95 ng/mL.† Although the numbers are still too low for statistical significance, migraineurs experiencing a favorable response to this regimen have a mean 25(OH)D around 120 ng/mL. Reading between the lines, this data suggest a vitamin D3 maintenance dose of 10,000 IU/day for episodic CHers, 15,000 IU/day for chronic CHers and up to 20,000 IU/day for migraineurs.

The normal distribution plot of 25(OH)D serum concentrations among CHers experiencing a favorable response to the anti-inflammatory regimen is illustrated in the following graphic.

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

The message from this chart is this... If you've not responded to this regimen at a dose of 10,000 IU/day, increase the vitamin D3 dose to elevate your 25(OH)D serum concentration.

As the normal reference range for the 25(OH)D lab test is 30 to 100 ng/mL (75 to 250 nmol/L), it is essential that headache sufferers taking this regimen must stay under close supervision of their PCP or neurologist with lab tests of their serum 25(OH)D, calcium and parathyroid hormone (PTH), particularly when taking more than 10,000 IU/day vitamin D3.†

It's also important to note that in the 7 years since the survey of CHers taking this regimen went online, there haven't been any reports of vitamin D3 intoxication/toxicity as evidenced by a serum calcium concentration above its normal reference range or of any side effects that required medical attention.

Hope this helps.

Take care,

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, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
SouthernCluster
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 10
Florida
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2593 - May 5th, 2018 at 11:00am
 
OK, after over 2 years of being PF on the regemine, I find myself today in week 4 of a cycle. Have load dosed 50K IU of D3 for 2 weeks, and added Benedryl to the regime. This has kept things mostly mild and manageable with O2 and hyperventilation technique. But now I have gone from sea level in Tampa, FL to Phoenix, AZ on ďvacationĒ. Couldnít bring the the Oxygen for various reasons.† It is high (2596 feet) and very dry here (especially compared to FL).

So question is, will this location change help or hurt the cycle?† Any other suggestions, besides getting some sun, to manage things without O2?

Oh, and for me, airplanes are a trigger in a cycle, so to add to the fun, I had a cluster at 30K feet yesterday. Used a Sumatriptan injection to kill that one...canít imagine what the guy sitting next to us was thinking!
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3679
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2594 - May 5th, 2018 at 1:48pm
 
Hey SouthernCluster,

You've an interesting problem and great question.† As a Navy fighter pilot, my training in Aviation Physiology tells me we have a drop in the partial pressure of arterial oxygen (PaO2) with an increase in altitude.†

For example, in a commercial airliner flying above 20,000 feet, the cabin pressure is regulated to the equivalent of roughly 7,000 feet in altitude even when the aircraft is flying at 33,000 feet.† At a cabin altitude of 7,000 feet, the PaO2 drops to 70% of normal PaO2 at sea level.† The PaO2 drops below 62% at altitudes above 10,000 feet.† This is where people† start passing out... Not good if you're the pilot...† This is why pilots need supplemental oxygen starting at an altitude of 10,000 feet (3,000 meters).† In your case at 2496 feet altitude, your PaO2 is roughly 90% of what it was at sea level.

We know that PaO2 has a direct effect on cluster headache pathogenesis.† In other words, as the PaO2 drops we have an increased incidence of CH if we're close to the tipping point at sea level.

Given the above, the pregnant question becomes, what do we do to counteract the effects of increased altitude and decreased PaO2 while flying and at a new location well above sea level?† Increasing serum vitamin D3 and 25(OH)D with loading doses as well as adding Benadryl (Diphenhydramine HCL) are the first steps.† Drinking at least 2.5 liters of water a day is also helpful.† You did the loading doses and Benadryl, but that didn't prevent a CH while flying.† That gives us a clear indication that a drop in PaO2 is a potent CH activator.

I suspect the higher serum concentration of both vitamin D3 and 25(OH)D will keep you relatively CH pain free while staying in Phoenix.† Given enough iron and other mineral supplements, the human body adapts to higher altitudes by developing more hemoglobin to carry additional oxygen to the brain and periphery.

My flight preparation usually includes a 50,000 IU vitamin D3 loading dose 4 to 6 hours prior to the flight departure and a 25 mg Benadryl (Diphenhydramine HCL) tablet an hour prior to departure.† I keep an extra tablet of Benadryl and at least 15,000 IU of vitamin D3 handy during the flight.†

I can usually tell when a CH is approaching during a flight so down the Benadryl and pop the 15,000 IU of vitamin D3 between my back teeth and swirl the contents under my tongue until completely dissolved.† This usually prevents the CH from developing during the flight.

I think your problem started when you fell out of a 2 year CH remission.† †This doesn't happen without a reason or reasons...† An increase in pollen this time of year is the first reason and a subclinical infection is another. A third reason could be diet that results in a drop in systemic pH (too much acid) and a forth could be an industrial or agricultural pollutant like a herbicide or insecticide.† All of he above put a burden on the immune system and it's need for vitamin D3.† This trickles down to the above conditions triggering the trigeminovascular system into hypersensitivity.† Once that happens, the CH beast is spring loaded to jump ugly.

Things to try... Review your diet and eliminate all sugars, starches, wheat products including grain oils like Canola and Corn oil.† Good oils/fats include organic butter, olive oil, avocado oil and my favorite, extra virgin coconut oil.† No bread, pasta or pizza.† Try to eat Organic NON GMO green and yellow produce, onions, mushrooms and free range organic meats, poultry and eggs.† Wild caught fish is also good once a week.

Taking a good probiotic with 30 to 50 Billion colony forming units (CFU) and at least 10 to 18 strains along with 2.5 liters of water a day can help build a healthy microbiome and in the process, help bring the gut brain axis into a more favorable relationship.

Obviously this is not a compete answer, but I hope what I've provided helps.

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, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
Sean McE
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 143
Seattle, Wa
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2595 - May 15th, 2018 at 4:15pm
 
Hello Batch,† I just stumbled on a thread that was started on March 17 wherein a new loading dose of 50,000 D3 for the first 12 days is recommended, being as I wasn't taking any supplements prior to this cycle it sounds like I might be light at the level I was at. I'll up it and get my levels checked in a couple of weeks.
† †† Sean
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3679
Bremerton, WA
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2596 - May 15th, 2018 at 11:51pm
 
Hey Sean,

Thanks for the headzup.  Sounds like a plan.  If there's no drop in the frequency of your CH after 3 to 4 days at 50,000 IU/day, start a week to 10 day course of Benadryl (Diphenhydramine HCL) at 25 mg every four hours during the day.  The Diphenhydramine will take care of any lingering allergic reactions. 

This much Diphenhydramine will make you drowsy so if you need to drive during the day, take 50 mg of the Diphenhydramine when you're home for the day and at least 25 mg at bed time.

When you've completed the loading schedule, drop back to a maintenance dose of 10,000 IU/day vitamin D3 for at least two weeks to let your 25(OH)D serum concentration stabilize then go in for the lab tests of your serum 25(OH)D, calcium and PTH.  As long as you're CH pain free or mostly so, your serum calcium is within its normal reference range and your PTH is in the lower third of its normal reference range, you're good to go at a vitamin D3 maintenance dose of 10,000 IU/day.

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, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
SouthernCluster
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 10
Florida
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2597 - May 19th, 2018 at 11:28am
 
Iím back after a great trip to Canyonlands. Highest point was Bryce Canyon at 8k ft. Several mild clusters during the trip but none that required Sumatriptan injections. Even clusters canít distract from the beauty of this countryside!  No cluster on the flight home last Saturday either.

So today is day 37 of my cycle. The headaches have almost completely tapered so I tried two glasses of wine last night. Only the most mild of clusters. So I am finally out of the woods. This has been the longest cycle in many years, especially since starting the regimen. But knowing how to manage with O2 and avoiding triggers makes it worlds easier than my first cycle 30 years ago...

Blood test next week if I can find the time.
Back to top
  
 
IP Logged
 
Sean McE
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 143
Seattle, Wa
Gender: male
Re: 123 Days PF And I Think I know Why
Reply #2598 - Jun 4th, 2018 at 2:52pm
 
Hello Batch, Here's an early update...after restarting on the new loading cycle....halfway through started seeing improvement but really saw improvement when I added one 25mg Benadryl every night, if I screwed up and forgot the next day wasn't very nice. The Benadryl  really turned the tide. Have just gone two consecutive nights with no Imitrex and zero hits or shadows on just the vitamin regime. Smiley On a side note....while I have a history of back issues, the last two years have been nonstop getting worse by the month...the last two weeks have seen a huge improvement in my back to the point where I almost don't even notice my back back pain. I know it's anecdotal but I'm giving credit to the anti-inflammatory vitamin regime
    Sean
Back to top
  
 
IP Logged
 
sledgehammer
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 11
Re: 123 Days PF And I Think I know Why
Reply #2599 - Jun 19th, 2018 at 5:10pm
 
Batch wrote on Apr 25th, 2018 at 12:31pm:
Hey Sledgehammer,

That's great news.† Thank you for sharing it with us.† Have you had the lab test of your serum 25(OH)D lately?† It would be helpful to know the 25(OH)D serum concentration is keeping you CH pain free. Data from the online survey of CHers taking this regimen at 10,000 IU/day vitamin D3 indicate an average serum 25(OH)D concentration around 80 ng/mL.

Thanks again for the wonderful news.

V/R, Batch


No i haven't had it checked in 3 years....probably should have.

Unfortunately, not long after making my above post, I got down in my back real bad. Worse than I've ever been. I had a disc pushing on my sciatic nerve and was in bad shape.  Went to the doctor and ended up with several different pills, some prednisone pills and a shot of cortisone.  My back got better in a couple weeks, but my gut was torn up from the medication. I quit taking everything all together in an attemp to fix it from the muscle relaxers and NSAIDs.  Last week I started having shadows for a couple days. I started the d3 and fish oil back but i guess it wasn't soon enough.  Although my attacks aren't as bad as I remember them before, I am having them.  I gotta get myself built back up soon!
Back to top
  
 
IP Logged
 
Pages: 1 ... 102 103 104 105 106 107
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!