Females and O2

[kat_92]

I recently read an article that says only about 60% of women with cluster headaches respond to oxygen therapy. I was just curious to hear from some of the women in the forum and how well you respond to O2. I’m going to try and get a script for O2 next time I see the doc. Sept 6 marks 8 weeks from this cycle :/ 

 

kat

[CHfather]

Not a woman here, but my daughter is, and O2 works great for her (thank God). 

Can you give a citation or link for that article?

[kat_92]

I came across it while I was reading about melatonin and cluster headaches. It was on my computer I’m on my phone at the moment. Will try and send it tomorrow. 

[spiny]

Hey Kat! I respond very well to O2. I have not heard of this disparity before. Perhaps it is a reflection of the doctors not knowing how to instruct the patient in how to use O2 for the best relief. I have found this to be a common problem. If you don't do it right and do the post breathing, it does not work very well. So, I would suggest it is related to lack of physician knowledge as opposed to the sex of the patient.

Reminds me of the ratio of men to women with Ch. As more women are being accurately diagnosed that ratio has changed and women are about as likely to have Ch as a man is. It used to be thought of as primarily a disease of men while women get migraines. 

[kat_92]

Yes that would explain why I was diagnosed with migraines for 5 years prior. I did not have one single migraine symptom. And to make matters worse, I was on topamax for 3 years! That drug ruined me while I was on it. I felt like absolute crap. I could barely balance, I was losing the ability to think quickly, it was terrible. I am positively looking forward to O2. I’m sure ch gets manageable once you have all the appropriate tools at your disposal. I went almost 3 years before the headaches started again. Thus far I am only doing the d3 regimen. My ch are very mild this particular cycle. My doctor says they get worse with age typically, or I might just have “atypical ch” and they will stay this strange the rest of my life. There is no telling. 

Kat 

[Pebblesthecorgi]

Sounds like made up information to me.  Most of studies with O2 have men but that's because of diagnosis bias.  Physiologically male and female brains function the same.  Its the manifestations of that physiology that creates the "Mars/Venus" effect (tongue in cheek, wink).   Even if "60%" was true its still worth trying properly.  Ask you doctor "If I have cancer and had a 60 % chance of responding to therapy would you offer it?"  O2 is inexpensive and effective for aborting clusters and every cluster head deserves a chance to try it.

[xxx]

Kat,

Gender has little to do with the efficacy of oxygen therapy in aborting CH.  If used properly with hyperventilation at forced vital capacity tidle volumes either with 100% oxygen at 30 to 40 liters/minute with a non-rebreathing oxygen mask, hyperventilating with an oxygen demand valve, or by hyperventilating with room air for 30 seconds at forced vital capacity tidle volumes then inhale a lungful of 100% oxygen and hold it for 30 seconds then repeat this sequence until the pain is gone.  In all three methods, the average abort time should be around 7 minutes with > 95% efficacy and it has nothing to do with gender.

What most doctors and neurologists don't understand about effective oxygen therapy as a CH abortive, is oxygen is only half of the abortive.  The other half involves blowing off CO2 faster than the body generates it through normal metabolism  by intentionally hyperventilating for 6 to 7 minutes pushes the body into respiratory alkalosis.  In simple terms blowing off CO2 by hyperventilating shifts blood pH to the alkaline side of neutral making it more alkaline, hence the term respiratory alkalosis.  I need to point out that respiratory alkalosis from intentionally hyperventilating is temporary and harmless. It clears normally within a few minutes once returning to normal breathing rates.

Respiratory alkalosis does several things that help abort CH.  The first effect of respiratory alkalosis with an elevated arterial pH, is to slow the expression of Calcitonin Gene-Related Peptide (CGRP) and Substance (SP) by neurons in the trigeminal ganglia. CGRP and SP are responsible or the neurogenic inflammation and pain we know as CH.  What also happens during respiratory alkalosis is elevating arterial blood pH in the lungs to the alkaline side of neutral, increases blood hemoglobin's affinity for oxygen.  This enables blood hemoglobin to carry up to 117% of oxygen where breathing a little faster than normal elevates blood oxygen to only 99%. 

This super-oxygenated blood flow and low arterial pH does two things.    It speeds up the breakdown of CGRP and SP and It also triggers triggers pH homeostasis when chemo receptors in the brain stem and aortic arch sense the low arterial CO2 concentration.  These chemoreceptors signal the breathing control neurons in the brain stem to slow the respiratory rate.  They also signal the heart to beat more slowly and arteries and capillaries throughout the body including the brain and trigeminovascular complex to constrict.  All this happens to slow the flow of blood to the lungs to prevent the loss of CO2 and allow its arterial concentration to rise back to normal levels.  While we're intentionally hyperventilating, this triggers the vasoconstriction throughout the trigeminovascular complex and this serves as a significant CH abortive effect.

I can hear the wheels turning...  WTF are Forced Vital Capacity Tidal Volumes?  The answer is simple once you understand the terms.  Tidal Volume = The volume of air (or oxygen) inhaled and exhaled.  The air comes into the lungs during inhalation and goes out when exhaling, just like the tide comes in and goes out.  Vital Capacity = The maximum amount of air a person can expel from the lungs after a maximum inhalation without thinking about it.  Forced Vital Capacity = By doing an abdominal crunch, tightening the abdominal and chest muscles as in doing sit-ups at the end of a forceful exhalation, squeezes out an additional half to full liter of exhaled breath highest in CO2 content.  If you hold the abdominal crunch and chest squeeze for at least a second, your exhaled breath will make a wheezing sound.  Try it now and hold the squeeze until your breath makes a wheezing sound.  Accordingly, hyperventilating at forced vital capacity tidal volumes pumps CO2 from the blood stream much faster than "normal respiration."

Now for the proof this method of oxygen therapy and breathing techniques makes oxygen therapy very effective with an average abort time of 7 minutes.  We conducted a pilot study of this method of oxygen therapy (hyperventilating with 100% oxygen) with seven CHers (6 CCHers and 1 ECHer, six men and one woman) in 2008.  Four of the CHers used an oxygen demand valve and the other three used a Flotec 0-60 liter/minute oxygen regulator set a a flow rate of 40 liters/minute with a Cluster O2 Kit mask from CH.com equipped with a 3-liter reservoir bag. Abort times with either method were the same.  Each of the seven CHers collected abort time and CH pain level at start of therapy for every CH aborted for a period of 8 weeks.  This came to a total of 366 aborts with this method of oxygen therapy.  364 of these aborts were rated as successful with a complete CH abort in 20 minutes or less for a success rate of 99.4%. The results are plotted out in the following graphic.  The average abort time for these 364 aborts was 7 minutes.

One of the pilot study participants collected abort time and pain level data for a week while waiting for his oxygen demand valve, using a disposable non-rebreathing (NRB) oxygen mask at an oxygen flow rate of 15 liters/minute.  As you can see, the demand valve method (hyperventilating with 100% oxygen) results in CH aborts 3 to 4 times faster than using a disposable NRB oxygen mask at a flow rate of 15 liters/minute.   We also discovered an interesting phenomenon that the higher the CH pain level, the longer it took to abort to abort the CH.  This has never been reported in any of the previous RCTs or studies of oxygen therapy as an abortive for CH or Migraine.

For reference, I hold a patent on the oxygen demand valve method of aborting CH.  I've also over 15 years training in Aviation Physiology primarily involving oxygen breathing systems and their use in flight.

Bottom line, hyperventilating at forced vital capacity tidal volumes with 100% oxygen or hyperventilating with room air at forced vital capacity tidal volumes then inhaling a lungful of 100% oxygen and holding it for 30 second then repeating this sequence 6 more times for an average total of 7 minutes  are equally effective in aborting CH.

Hope this helps.

Take care,

V/R, Batch

Edited September 9, 2019 by Batch

[Freud]

Bravo @Batch, Its like explaining a cardiopulmonary bypass strategy...  enjoyed the physiology.  I have a real hard time hyperventilating. And for me when I force myself to do it. Usually an hour after my normal routine of using a regular old non rebreather mask and I’m at the I’ll try anything point. I break out the opti with the mouth piece and do the whole routine. Each method and no response. Well no more than if I go back and just breath the 25LPM gas. Now I know what you’re going to say next.  You waited too long. But I have done it as a first line for over a month and I get the same results. So I stay comfortable, breath at a fast rate w my plane Jane mask and if the O2 is going to work I abort in 2-3 min stay on for 10-15. Unless I fall asleep and sleep through my timer. Lol did that last night. Ran through a fresh M tank. Fortunately I don’t have COPD w CO2 retention...  But 99% of my nocturnal CH alarm clock attacks (every 45-60min) respond quickly and abort. Few of the nocturnal attacks that wake me up already at a kip 10 and no 1-3min ramp up take 30-45min to break if they break. But the longer I’ve been CCH I wake up before the CH starts!  And I’m like hmm I don’t have to pee WTF did I wake up for. Then I try to go back to sleep and then the ramp up starts. It’s real strange. So when I’m alert enough to know what’s going on. If I wake up suddenly I just hit the O2 for 10 min and go back to sleep. 

 

I know sience as well well as friends w CH say hyperventilating is the way to go as well as the beautiful opti mask is superior (I love the way it feels on my face but they purposely don’t want you to fall asleep w the mask on and I get it. I want to lie back and breath or pace and breath. Not hold a mask or mouth piece. Every bit of comfort helps when I’m mid hit which is most of the day. 

 

TLDR: Thanks for the post Batch, I support and suggest all of your suggestions to other CHers. But it doesn’t make a damn of a difference to me sadly. I’m just not responding normally to any of the treatments but they still help a ton  

I guess the next step for me is a 30-40Lpm reg...Apria is going to love that  lol

 

Unrelated note  our greek friend’s GF is pain free after starting the D program and Benadryl. I asked her to fill out the survey and post about it...  she is CCH too =-)

Edited September 10, 2019 by Freud

[kat_92]

Wow thank you all for the informative responses. I’m really hoping I don’t have a hard time getting a prescription for it. Looking into busting for next cycle as well. 

 

Kat 

[jon019]

…..part of a clusterhead's tool kit...carry with you always....

 

[FunTimes]

MASH! HAHA the 4077 got me through a lot of busting nights.. Love that show

[yme]

Hello kat_92. I'm one of those females who unfortunately don't respond to oxygen.  I have tried it several times but all to no avail. 

[CHfather]

yme (great handle!), I'm very sorry that O2 doesn't work for you, and I am assuming you have tried all the upgrades (higher flow, better mask, different breathing technique, etc.) that have turned that situation around for some people.  I'm imagining that means you have to use triptans to abort attacks, and I just wanted to be sure you know about splitting Trex injections to use less with each one.  There's a file about it here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/  Or some people get it in vials with syringes so they can measure out their own doses.  Sorry if this is old news to you, but thought it was worth mentioning.  Same with busting (the blue "New Users..." banner at the top of each page). I'd feel remiss if I didn't mention it, but you might already know about it.

[yme]

Thank you so much for the information CHfather. I'm on the vit D3 regimen now. Hoping it helps quick enough. 

[Into Light]

On 11/6/2019 at 2:21 PM, CHfather said:

yme (great handle!), I'm very sorry that O2 doesn't work for you, and I am assuming you have tried all the upgrades (higher flow, better mask, different breathing technique, etc.) that have turned that situation around for some people.  I'm imagining that means you have to use triptans to abort attacks, and I just wanted to be sure you know about splitting Trex injections to use less with each one.  There's a file about it here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/  Or some people get it in vials with syringes so they can measure out their own doses.  Sorry if this is old news to you, but thought it was worth mentioning.  Same with busting (the blue "New Users..." banner at the top of each page). I'd feel remiss if I didn't mention it, but you might already know about it.

according to my neurologist, who tried to prescribe the vials. and they are no l longer available. i get zembrace which is 3 mg subcutaneous. haven't  used it. 

Edited November 17, 2019 by Into Light

[Pebblesthecorgi]

Not true.  There are episodic "shortages" but the vials are available.  Online and retail pharmacies have them in different brands but I suspicion its all made in the same plant in China or India.  Fabricated shortages by big pharma are a strategy to raise prices on otherwise inexpensive medications.  The other thing shortages do is drive prescriber's toward newer drugs even though the cheap generics work fine.  So a jaded, cynical, skeptical soul like myself says "hmmm how do we increase sales of our new CGRP injections?  Let's get the providers of current therapies to create an apparent shortage"

[kat_92]

@yme I’m sorry to hear that. I will say after purchasing the appropriate mask and getting my flow rate up to 12 lpm, it worked so much better. Do you have the most effective equipment with the tank? 

 

Kat 

[yme]

@kat_92Yes, i do have all the equipments. I've attempted it several times on different occasions but it never gave me any relief.