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





Page Index Toggle Pages: 1
Send Topic Print
Some CH questions for Guru's and non-guru's (Read 3148 times)
Anon-ClusterHead
CH.com Junior
**
Offline


I Love CH.com!


Posts: 30
Some CH questions for Guru's and non-guru's
Oct 10th, 2014 at 9:17pm
 
I figured id make a new thread for these questions:

1. Does anyone know how long 100% pure oxygen constricts blood vessels?

2. How do you define "shadowing"?

3. Will breathing in the oxygen remove the shadow?

4. At what point on the Kip (pain) scale should oxygen be used?

5. How well does the D3 vitamin anti inflammatory regiment work for people? (this question is directed for people that have been doing it for multiple years)

6. How old is the D3 vitamin regiment? Does anyone know if there will be any clinical trials done in the future?
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: Some CH questions for Guru's and non-guru's
Reply #1 - Oct 10th, 2014 at 11:53pm
 
Answering your questions...

1. Does anyone know how long 100% pure oxygen constricts blood vessels?

No idea, but then since it kills off a CH for me in under 5 min (non-rebreather mask, 25lpm), it doesn't really matter how long it constricts them for.


2. How do you define "shadowing"?

For me, CH shadows are those low level head pains that can often just hang around in cycle, they feel like a very mild CH.

3. Will breathing in the oxygen remove the shadow?

It can often do, try it and see. Similarly things like energy drinks can also be effective against shadows.

4. At what point on the Kip (pain) scale should oxygen be used?

Totally up to you. If they get to the point where they are annoying you then I'd use oxygen. Quite where that is on the Kip scale is up to you.

5. How well does the D3 vitamin anti inflammatory regiment work for people? (this question is directed for people that have been doing it for multiple years)

For me I've been CH pain free for 985 days. Prior to that my first cycle was 11 months, almost getting me the chronic label, with one very, very mild cycle whilst on D3 with just 10 CHs. I'd count that as it working pretty well for me.

6. How old is the D3 vitamin regiment? Does anyone know if there will be any clinical trials done in the future?

Batch's first post on this - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register - was in December 2010 and he'd been using it for 4 months prior to the post.

Batch can tell you about what work he is doing to educate neurologists, several of whom are using D3 on their patients with good results.
Back to top
  
 
IP Logged
 
BarbaraD
CH.com Alumnus
***
Offline


Hugs to ya


Posts: 8333
Douglasville, TX
Gender: female
Re: Some CH questions for Guru's and non-guru's
Reply #2 - Oct 13th, 2014 at 9:44am
 
Anon-ClusterHead wrote on Oct 10th, 2014 at 9:17pm:
I figured id make a new thread for these questions:

1. Does anyone know how long 100% pure oxygen constricts blood vessels?

Don't have a clue (since we're all different and react differently). But it's stopped mine in just a few minutes so that's all that mattered.

2. How do you define "shadowing"?

Slight headache, but not full blown.


3. Will breathing in the oxygen remove the shadow?

Again we're all different. Sometimes it does (if you stay on it for a few minutes longer after the pain disappears from the CH).

4. At what point on the Kip (pain) scale should oxygen be used?

In MY case, I hit it as soon as the pain appeared. Doing it that way prevented a lot of "full blown" CHs. If I was over a 4-5, I usually downed a can of Red Bull along with the O2.

5. How well does the D3 vitamin anti inflammatory regiment work for people? (this question is directed for people that have been doing it for multiple years)

I'm coming up on my first year anniversary (Oct 21st)with NO CH and I've been chronic since 97. From the reviews here, I'd say it's working great for a LOT of us.

6. How old is the D3 vitamin regiment? Does anyone know if there will be any clinical trials done in the future?


Probably (talk to Batch),but, as with O2, it will take a lot of time and there will still be doctors who are skeptical. Believe it or not, there are still docs out there who will NOT prescribe O2 and that's been PROVEN to work on CH.

so it's just a "thank goodness" thing that we have people like Batch who does research and isn't afraid to try new methods to treat this awful condition we all share. Doctors (even neuros) are WAY behind the times on this one and aren't catching up real fast.
Back to top
  

What don't kill ya, Makes ya stronger!
 
IP Logged
 
Linda_Howell
CH.com Moderator
CH.com Alumnus
*****
Offline


Do not feed the Moderators


Posts: 11927
Santa Maria, Ca.
Gender: female
Re: Some CH questions for Guru's and non-guru's
Reply #3 - Oct 14th, 2014 at 6:52pm
 
Quote:
4. At what point on the Kip (pain) scale should oxygen be used?



Without a shadow of a doubt....AT THE FIRST TWINGE.
  Some newcomers say 02 doesn't work for them at all.  After us asking questions, we find out they're either waiting too late to start it, or they haven't got the right equipment.  Like not using a non-rebreather mask or a regulator that goes to at the very least 15 LPM.
Back to top
  

Hurt people.....hurt people.   Think about it.
WWW calientev8 N/A N/A  
IP Logged
 
Anon-ClusterHead
CH.com Junior
**
Offline


I Love CH.com!


Posts: 30
Re: Some CH questions for Guru's and non-guru's
Reply #4 - Oct 22nd, 2014 at 12:50pm
 
Is there anywhere we can see a list of insurance companies that cover oxygen for CH? Apparently mine doesn't, so the company billed me for something else and now i have to have a oxygen concentrator taking up a lot of space in my tiny studio sized apartment. (they said they will not take it away either even though they know it doesnt help me, i even saidt hey could keep charging me for it and they still would not take it away).
Back to top
  
 
IP Logged
 
BarbaraD
CH.com Alumnus
***
Offline


Hugs to ya


Posts: 8333
Douglasville, TX
Gender: female
Re: Some CH questions for Guru's and non-guru's
Reply #5 - Oct 23rd, 2014 at 9:11am
 
Your doc needs to write the script right. A concentrator isn't what you need (as you already know).

Get your facts together and talk to your doc. You need a REGULATOR that goes to at least 15lpm and the proper mask (see O2 info on left).

Good luck..  Kiss
Back to top
  

What don't kill ya, Makes ya stronger!
 
IP Logged
 
Anon-ClusterHead
CH.com Junior
**
Offline


I Love CH.com!


Posts: 30
Re: Some CH questions for Guru's and non-guru's
Reply #6 - Oct 23rd, 2014 at 10:59am
 
Yea i have that stuff too, but they also gave me the concentrator and will not take it back, its not the end of the world, its just a waste of space in a small apartment that has 2 people living in it. I picked up the clusterheadache.com non-rebreather mask the other day too, pretty good, i like the large bag. i wish there was a way i could add a strap on it for me though, since i only use it in the evening not when im trying to sleep.
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3708
Bremerton, WA
Gender: male
Re: Some CH questions for Guru's and non-guru's
Reply #7 - Oct 23rd, 2014 at 5:20pm
 
Hey Anon-CH,

All of us who own one agree, the ClusterO2 kit is a great mask for oxygen therapy... 

That said... strapping on an oxygen mask and in particular a good one like the ClusterO2 kit at any time is a NO! NO!.

If you fall asleep then run out of oxygen you could suffocate...

If you want to breath some oxygen while sleeping... use a nose cannula.  While this sounds like it might be a good idea...  it never worked for me... I got hit just as often while trying this as not.

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, that’s 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: 3708
Bremerton, WA
Gender: male
Re: Some CH questions for Guru's and non-guru's
Reply #8 - Oct 23rd, 2014 at 5:57pm
 
Hey Anon-CH,

Regarding the lead in post in this thread… Good questions…

As a Navy fighter pilot I accumulated over 3000 hours flying jet fighters and all of that flight time breathing 100% oxygen from takeoff to landing on missions lasting 2 hours up to 7 hours in duration.  As a chronic cluster headache sufferer I’ve accumulated at least 700 hours of oxygen therapy time since 2005... 

BTW... This method of oxygen therapy is very safe...  I'm 70, healthy, and still going strong.   I’m also the guy who developed the anti-inflammatory regimen.  Accordingly, I feel I’m qualified to answer your questions. 

In addition to the above qualifications, during 15 years of continuous flight status, I received annual training in Aviation Physiology involving oxygen breathing systems, hypobaric altitude chamber runs to a simulated 40,000 feet altitude and the respiratory physiology of hypoxia and hyperventilation.  I’m also a certified SCUBA diver with over 100 open ocean deep dives.

Finally, I’m 20 + year cluster headache sufferer, chronic since 2005.  Since then I’ve developed three new methods of oxygen therapy.  I developed the first method in 2005 after an official diagnosis of chronic cluster headache. 

This method uses oxygen flow rates that support hyperventilation, (25 to 60 liters/minute) with an average flow rate of 40 liters/minute.  I researched the respiratory physiology behind the effectiveness of this method of oxygen therapy and posted a paper with the results of my research on OUCH in 2006.

Michael Berger, (Wildhaus) and I developed the second method of oxygen therapy in 2007 using a demand valve provided by Royce Fishman, Linde.  This method involved modifying the procedures used in the first method so they could be used with an oxygen demand valve. 

We conducted a pilot study of this method in 2008 with 7 participants each of whom consulted with their PCP or neurologist before taking part in this study.  Participants collected data on pain levels and time to abort on all cluster headaches for a period of 8 weeks on a combined total of 366 cluster headache aborts.

The three of us filed a patent for this method of oxygen therapy with the USPTO in 2008, it was published in 2010 and granted in 2012.   I used the first and second methods of oxygen therapy exclusively as my only means of controlling my CH between 2005 and 2010 when I developed and started taking the anti-inflammatory regimen.

I developed the third method of oxygen therapy in 2012 following a burn-down test of my 25(OH)D3 reserves where I stopped taking the entire anti-inflammatory regimen until my CH returned. 

Unfortunately, my timing on this burn-down test coincided with an extremely high pollen count from the alder and maple trees that surround our home.  As a result, resuming the complete anti-inflammatory regimen at a maintenance dose of 10,000 IU/day vitamin D3 didn’t stop the attacks as it had in the past so I was forced to resort to oxygen therapy to abort the attacks.

As my on-hand supply of oxygen was low… (I hadn’t used it in two years) and the CH hit on a Friday night with no resupply until Monday, I began experimenting with hyperventilating with room air then sucking down a lungful of oxygen and holding it to minimize oxygen consumption.

During the 4 days it took for me to realize I needed loading doses of vitamin D3 to get my 25(OH)D serum concentration back up to a therapeutic level, I continued to refine this procedure for oxygen therapy while aborting my CH.   

The procedure I found most effective involved 30 seconds breathing at forced vital capacity tidal volumes to cast off CO2 more effectively, followed by inhaling a lungful of 100% oxygen and holding it for 30 seconds.  I kept repeating this sequence until the pain was gone…  I found that most of my CH aborted to a pain free state with 4 to 5 of the above cycles or 4 to 5 minutes.

On Monday when I was able to pick up another cylinder of welder’s O2, I started alternating aborts between this new method of oxygen therapy and the demand valve method.  To my surprise, the aborts with this new method were just as effective and the abort times a little less.

What is even more interesting about this method is at an average of 25 liters per abort, it uses one-tenth the volume of oxygen than the demand valve method that averages 250 liters of oxygen per abort, yet it has the same efficacy and slightly shorter abort times.

Now to your questions…

1. Does anyone know how long 100% pure oxygen constricts blood vessels?

Answer:  There have been a number of studies done on this topic.  One in particular, a study reported in the Canadian Journal of Anesthesia conducted by B.F. Matta et al. titled "The influence of arterial oxygenation on cerebral venous oxygen saturation during hyperventilation," found the following:

“It is likely that hypocapnia, even at PaCO2 of 30 mmHg, results in cerebral vasoconstriction that exceeds any vasoconstrictive effect of normobaric hyperoxia.”

Basically… you get more cerebral vasoconstriction by intentionally hyperventilating with air to reduce serum CO2 concentrations below normal (hypocapnia), than by breathing 100% oxygen at 1 ATA (higher than normal oxygen serum concentrations at normal atmospheric pressure).

Another study by Floyd et al. titled Independent cerebral vasoconstrictive effects of hyperoxia and accompanying arterial hypocapnia at 1 ATA, reported in the Journal of Applied Physiology, employed colorized continuous arterial spin labeled (CASL)-perfusion MRI images with scale depicting cerebral blood flow (CBF) changes in response to air, air-4% CO2, air-6% CO2, 100% O2, 96% O2-4% CO2, and 94% O2-6% CO2. resulted in the following neuroimages:

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

The short answer to your question is it takes roughly 2 to 3 minutes for the cerebral vasoconstrictive effects of breathing 100% oxygen for a minimum of 5 minutes to dissipate completely after returning to normal respiration rates with air.

Somehow, I don’t think that’s the answer you wanted to see… 

Let me be so bold as to suggest what you really want to know…  How effective is oxygen therapy as a CH abortive, what are the expected abort times and how long do its effects last? 

If used early at the first indication of an approaching CH and used properly with oxygen flow rates that support hyperventilation (minimum of 25 liters/minute) or with hyperventilation, the efficacy of oxygen therapy in aborting CH can be has high as 95% with abort times averaging 7 minutes across pain levels 3 through 9. 

That said, it's important to know that oxygen therapy is only an abortive and not a preventative.  That means if your CH are running on a defined cycle time, they will return at the scheduled/appointed time.  In other words, if you’re getting hit with a CH every two hours… you’ll continue to get hit at this frequency no matter if you used oxygen therapy or not.

2. How do you define "shadowing"?

Answer:  The term “shadow” was first explained by one of the early members of CH.com, Kip Kipple.  He described the actions and reactions we experience at each CH pain level as a CH escalates from pain level 1 to pain level 10.  Using his definition, shadows are CH at the lower pain levels that follow us around… like a shadow. 

The term "shadow" can also be used to describe a phantom CH - the appearance of several CH symptoms less the pain, i.e., drooping eyelid, tearing eye and runny nose on the hit side, but no pain.  In reality, shadows are still cluster headaches.

3. Will breathing in the oxygen remove the shadow?

Answer:  Yes, oxygen therapy can stop or abort shadows if used properly.

4. At what point on the Kip (pain) scale should oxygen be used?

Answer:  Start oxygen therapy at the first indication of an approaching CH or KIP-1 whichever occurs first.  If you get hit while sleeping, run don’t walk to your oxygen system and start huffing and puffing like a big dog. 

The results from our pilot study of the demand valve method of oxygen therapy presented a finding previously unreported in studies of oxygen therapy.  That finding was as the pain of a CH increases… so does the time required to abort it.  See the following graphic from our pilot study.

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

The takeaway from this graphic is clear…   Oxygen therapy at flow rates that support hyperventilation are very effective with aborts in one third to one quarter the time of oxygen therapy at 15 liters/minute. 

Moreover, the longer you wait before starting oxygen therapy, the higher the pain level will grow and the longer it will take to abort the CH.

5. How well does the D3 vitamin anti inflammatory regiment work for people? (this question is directed for people that have been doing it for multiple years)

Answer:  The results from the online survey of 127 CH’ers taking this regimen to prevent their CH is 85% of them experience a significant reduction in the frequency, severity and duration of their CH.  75% experienced multiple pain free days and nights a week and 60% of them remained CH pain free.

In simple terms, a significant reduction in frequency equates to a drop in frequency from an average of 3 CH/day to 3 CH/week, a reduction of at least two pain levels, with duration of attacks cut by a third.  The average response time to this regimen is 3 to 5 days, but some took as long as a month and a few out to two months for a favorable response. 

CH’ers who responded to this regimen also reported an average 25(OH)D serum concentration of 25.4 ± 9.5 ng/mL before starting it and an average of 78.5 ± 29.2 ng/mL after 30+ days on this regimen.  I developed the questionnaire for the online survey and posted the link on the 16th Dec, 2011, at the following link:

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

This survey is still running and the most current results are at the above link.  Please consider taking it if you’ve been on the anti-inflammatory regimen for at least two months.

6. How old is the D3 vitamin regiment? Does anyone know if there will be any clinical trials done in the future?

Answer:  I developed and started taking the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3, in October 2010 and started posting about my experience with it in December of 2010. 

Although I’m not the first member of CH.com to suggest taking vitamin D3 to control CH (that credit goes to Niels who started posting about his experience with vitamin D3 in 2009), I’m the first to document my experiences with this regimen on a continuing basis.  I also specified the vitamin D3 dose at 10,000 IU/day plus suggested doses for Omega-3 fatty acids and all the vitamin D3 cofactors at the following link initiated in December of 2010:

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

This is the most read thread in the history of CH.com with over 241,000 views and over 2,000 posts…  a good 25% of the posts are mine in response to questions…  I’ve maintained a running tally of posts on this thread and estimate over 600 CH’ers are now taking this regimen.

Regarding future clinical trials of this regimen, I presented the results from the online survey in a poster presentation at the American Academy of Neurology Annual Meeting in April 2014, in Philadelphia, PA.  The abstract was published at that time.

I did this in hopes of attracting support for a follow-on RCT using the gold standard.  I’m a realist so know big pharma will never fund such a study. 

That leaves universities and private institutions as the best source of funding for such a study.  I will continue to submit the complete manuscript for publishing in medical journals.  My long term goal is to have oxygen therapy with hyperventilation and the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 added to the standards of care recommended treatments for cluster headache and other trigeminal autonomic cephalalgias.

Hope this helps.

Take care,

V/R, Batch
Back to top
« Last Edit: Oct 24th, 2014 at 8:02am by Batch »  

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


I Love CH.com!


Posts: 30
Re: Some CH questions for Guru's and non-guru's
Reply #9 - Oct 24th, 2014 at 2:17pm
 
Thank you for the informative post and for answering my questions!
Back to top
  
 
IP Logged
 
Page Index Toggle Pages: 1
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!