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Question about oxygen therapy and how it affects future CH


jseivers
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I was put on oxygen therapy this past week for my second bout with CH.  10L/m concentrator with nasal piece instead of mask.  I have ordered the Cluster O2 kit from cluster headaches.com that should arrive this week.  The day I received the oxygen (Thursday), I felt a headache coming and got on the oxygen and within 15 mins, it was gone and had absolutely no after affects from the headache.  Friday was clear but felt one coming Saturday afternoon and hit the oxygen and again, within 15 mins was gone.  Last night I woke up around 1am, 4:30am and 6:30am with the start to a headache and hit the oxygen each time and successfully aborted each headache.  My question.  When doing these headaches with oxygen, is this a normal thing that other people have seen with them trying to start multiple times?  I really just want as much information as possible to plan accordingly for venturing to work and outside the house, as the concentrator is technically portable, but it's not the most convenient things to carry around.  Has anyone used the oxygen tanks sold on Amazon that are for sports rehabilitation therapy?  Also, I am currently on my third week of Prednisone taper 60mg first week down to 10mg sixth week.

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It is often suggested here to stay on the oxygen for a while (5-10 minutes) after you have stopped an attack, because that seems to help hold off subsequent attacks.

You are stopping attacks with 10lpm from a concentrator, using cannula????  You're gonna be thrilled at how much faster it can happen if you have even more correct equipment (in addition to the mask you have ordered).  Is there a way that you can get cylinders/tanks from your O2 provider instead of the concentrator?  Concentrator O2 has more room air in it than is ideal, and with a cylinder you can use a higher-lpm regulator.  Cylinders also address your portability question, since the smaller cylinders are highly portable.  There's a fairly thorough discussion of oxygen here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

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1 hour ago, CHfather said:

It is often suggested here to stay on the oxygen for a while (5-10 minutes) after you have stopped an attack, because that seems to help hold off subsequent attacks.

You are stopping attacks with 10lpm from a concentrator, using cannula????  You're gonna be thrilled at how much faster it can happen if you have even more correct equipment (in addition to the mask you have ordered).  Is there a way that you can get cylinders/tanks from your O2 provider instead of the concentrator?  Concentrator O2 has more room air in it than is ideal, and with a cylinder you can use a higher-lpm regulator.  Cylinders also address your portability question, since the smaller cylinders are highly portable.  There's a fairly thorough discussion of oxygen here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

I will take that advice and continue on the oxygen for some time after the headache subsides.

Yes, I am using what my doctor prescribed me.  I did receive a M tank for backup purposes, but it looks more like a missile and is definitely not portable.  I hope, since the nasal cannula is helping, that the mask I ordered will also help with delivering closer to 100% oxygen.  The regulator they provided with the M tank only goes up to 8lpm.  I understand you can purchase regulators from Amazon, etc...that go higher.  Has anyone on here had luck with the Boost Oxygen 10L tanks from Amazon ?  When reading the reviews, I saw a handful of people saying they successfully used them for aborting clusters.  

Thanks for that link....I will move on to some more reading now.

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I think your reading will clarify some things, so just briefly . . . . You should be using the M tank (with a reasonable regulator), not the concentrator.  Did your provider not even supply a basic mask to use with the M tank?  Your supplier should also be able to provide you with a regulator that goes to at least 15lpm.  A typical sensible doctor's prescription calls for up to 15 lpm (and a typical sensible doctor's prescription also calls for a nonrebreather mask).  You probably will do better by buying your own regulator, so you get a higher lpm than 15 and you pay less overall, since you are "renting" the regulator from the supplier.  You can get a much smaller tank for portability.  You will read about that.  The smaller tank requires a different regulator than the M tank.  Oxygen is always a necessity for CH, and attacks can become a bit more intractable over time, so even though your current system is working okay, you want to be sure your system is optimized. 

It's hard to imagine that those Boost canisters will help you. 10 liters is about one minute of treatment.

BTW, the prednisone taper you are on is pretty long. Three weeks, with four days at 60mg, is a more standard prescription.  Not a huge deal, but you don't really want to be using more pred than necessary. 

 

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I have heard of a few who used them to get to their real O2!!! You can accomplish the same thing with deep breathing and forceful exhale to ditch the CO2 as you hoof it to the real tank. 

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Hey Jseivers,

An oxygen flow rate of 10 liters/minute is too low to abort a cluster headache effectively and reliably.  To be effective and reliable, the oxygen flow rate must be sufficient to support hyperventilation. Trying to do this with a nasal cannula is not only impossible but stupid.  Your neurologist and the oxygen equipment providers should have known this.  The Rx for your home oxygen therapy should have been written for an oxygen flow rate of 15 to 25 liters/minute with a non-rebreathing oxygen mask as an abortive for cluster headache.

I held a patent for a method of therapy with an oxygen demand valve as a CH abortive.  It's now expired.  That patent application was based on a thesis I developed along with results from a pilot study I ran with 7 CHers (one episodic and six chronic).  These 8 CHers used the method of therapy I developed for the oxygen demand valve to collect data on a total 366 aborts logging abort times and pain levels at start of therapy for eight weeks each. 

The mean abort time for CH pain levels 3 through 9 on the 10-Point Headache Pain Scale using this method of procedure for the oxygen demand valve was seven (7) minutes flat.  364 of these 366 aborts met the goal of an abort in 20 minutes or less for a 99.4% Success Rate.

Data from that pilot study is illustrated in the following chart.  As you'll see in this chart, the demand valve oxygen therapy (DEVO) resulted in CH aborts three to four times faster than oxygen therapy aborts with an oxygen flow rate of 15 liters/minute with a non-rebreathing oxygen mask.

KR7rUxL.jpg

In 2010 I modified this method of procedure to work with any oxygen regulator using what I call the Redneck Oxygen Reservoir Bag System that's made from a new clean kitchen trash bag, a plastic bottle with cap and the bottom cut off, tubing from a disposable oxygen mask or cannula, some electrician's tape and Duck Tape.  The DIY instuctions and photos to make a Redneck Reservoir Bag follow.

dygSWRa.jpg

Push the plastic bottle through the 1 inch opening cut off the corner of the closed end of the kitchen trash bag and tape the bottle neck with electricians tape for a gas tight seal. Place additional electricians tape around the middle of the bottle.  This becomes your hand hold.  You can add the oxygen tubing from your cannula to the 0.5 mm opening on other closed corner of the kitchen trash bag and add electricians tape for a gas tight seal.  When you've done this fold and tape the open end of the trash bag with Duck Tape.

G4zWDdH.jpg

ZjwWRwn.jpg

bVVcA8Q.jpg

R1O87DC.jpg

Make sure the bottle cap is on tight then fill the Redneck Oxygen Reservoir system ahead of time (before your next CH) by connecting the oxygen tubing to the barb fitting on your oxygen regulator then turn off the oxygen supply when bag is filled with oxygen making it snug but not tight.  The bag should hold oxygen for at least 12 hours.

If used with the following method of therapy, there should be sufficient oxygen in the Redneck Oxygen Reservoir Bag for three CH aborts.

The Method of Procedure.

At the first sign of an approaching CH or as soon as you wake up with one:

1.  Stand with mouth open and jaw dropped like saying the word "Haw" and hyperventilate at forced vital capacity tidal volumes for 30 seconds. Standing gives your diaphragm full range of motion to hyperventilate more effectively.

2  Exhale forcibly and when if feels like your lungs are empty of breath (they're not), do an abdominal crunch and hold the squeeze until your exhaled breath makes a wheezing sound for one second, then without delay, inhale a lungful of room air and repeat this breathing procedure 10 times as fast and deeply as possible (roughly 30 seconds).  On the last forced exhalation, hold the abdominal crunch/squeeze until your exhaled breath.  Doing this will squeeze our another half to full liter of exhaled breath highest in CO2 content. Then unscrew the bottle cap from the Redneck Oxygen Reservoir Bag and inhale a lungful of 100% oxgyen and hold it for 30 seconds. Remember to replace the bottle cap.

3. Keep repeating this entire sequence until the CH pain is gone.  Most CHers will take 7 to 8 complete sequences (7 to 8 minutes) to abort their CH.

If you're hyperventilating with room air properly, you'll start sensing a very slight tingling/prickling sensation across your lips, hands, ankles and feet.  This is called paresthesia and it's caused by vasoconstriction of the capillaries in the skin.  You may even feel a slight cooling sensation across your lower back as the vasoconstriction squeezes blood away from the skin allowing it to cool.

Effective hyperventilation like this blows off CO2 from the lungs and bloodstream faster than our bodies generate it through normal metabolism.  Lowering the CO2 content of the blood elevates arterial pH making the blood stream more alkaline.  The elevated pH enables blood hemoglobin to have a greater affinity for oxygen so it uploads more oxygen than normal and this sends super-oxygenated blood to the brain.

The elevated arterial pH also triggers vasoconstriction throughout the body and in particular, the trigeminovascular complex.  This counters the vasodilation that occurs during a CH hit so acts as an abortive.  The super-oxygenated blood flow to the trigeminal ganglia also causes the neuropeptides (CGRP, SP, VIP and PACAP) that are released in neurons and glia within the trigeminal ganglia during the CH pain phase to break down more rapidly and this acts as a CH abortive.  None of this can happen if you don't hyperventilate.

Build your DIY Redneck Reservoir Bag and practice this procedure before your next CH.

Your real problem is you're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH.  I'll send you a PM with more information. 

Take care and please keep us posted.

V/R, Batch

 

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  • 3 weeks later...

Jseivers, ever since I’ve started oxygen 5 years ago I have noticed the headaches come back more often, yes. Even when staying on for 10 minutes after the pain subsides. 
I guess the pros outweigh the cons though as it’s a fast aborting “clean” medication imo. 
 

I’ll message you the link to the very helpful O2 video as it won’t paste here for some reason. 

 

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I get the bangers back as well who knows why but a break is a break so I'll take it. I don't think I've ever been slapped back from o2 but not 100% sure as of yet still taking notes and walking around blind.. the o2 helps me abort for about 7 to 20 minutes if I'm lucky and it's a late banger I get to go to.sleep and then I think I'm getting hit or dreaming of spikes I can't differentiate sometimes I wake sometimes I don't.  Lucky I don't most of the time.. got intouch with Batch today and started Quentin as I'm allergic to benadryl.. maybe try that.. ?

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Hey Jseivers, Celtic Cluster and BoscoPiko,

Here is another chart from the oxygen demand valve method of aborting CH study I ran in 2008 that may help explain why the frequency of your CH goes up after repeated aborts with oxygen therapy.  This chart illustrates weekly CH frequency, mean weekly time to abort and mean weekly pain level at start of therapy over the 8 weeks of this study for one of the six chronic participants.  The other six participants had similar charts, just not at dramatic in weekly CH frequency range.

r9G8r8b.jpg

As you can see, the weekly CH frequency increased from 12 CH/week at start of this study, up to a maximum of 38 CH/week at the four week mark then dropped to 8 CH/week by the end of week 8.

This chart helps confirm the frequency of our CH increases with continued use of oxygen therapy up to a point then decreases over time.  At the same time, the mean weekly time to abort drops from 8 minutes at the start of this 8 week study down to 4 minutes by week 8.  The mean weekly pain level at start of this 8 week study also dropped from Kip-7 down to Kip-4 by week 8.

Why this happens is very interesting.  It involves what is called vascular toning.  Essentially what is happening over repeated aborts with oxygen therapy and hyperventilation is the muscles lining the arteries, capillaries and microvasculature within the trigeminovascular complex tone up (strengthen) like doing curls with a dumbbell strengthens the bicep muscles.  This means these vascular muscles become more efficient in effecting the vasoconstriction (narrowing of the lumen) that mechanically helps abort a CH.

Of course all this is nice to know, but only a foot note in your headache log if you start the anti-inflammatory regimen with vitamin D3 and the cofactors to control your CH.

iZH4l67.jpg

82% of CHers respond to this treatment protocol within the first 30 days with a significant reduction in CH frequency from 3 CH/day down to a mean of 3 CH/week.  Moreover, 54% of CHers starting this treatment protocol experience a complete cessation of CH in the first 30 days.

YwrQOyw.jpg?1

Over the last six months, these efficacy figures have actually started improving.  This is due in large part to the use of the  sublingual Micro D3 nanoemulsion taken during the initial loading schedule. 

The existing loading schedule called for 600,000 IU of vitamin D3 taken at 50,000 IU/day over 12 days. It resulted in a mean increase in serum 25(OH)D3 of 60 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration.

The new loading schedule calls for 700,000 IU of vitamin D3 taken at 140,000 IU/day over 5 days.  It results in a mean increase in 25(OH)D3 of 70 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration.

This new loading dose is made up of two (2) Bio-Tech D3-50 capsules/day (100,000 IU/day) and 0.5 mL/day of the Nutrasal Micro D3 nanoemulsion taken sublingual under the tongue, (40,000 IU/day) for a combined loading dose of 140,000 IU/day.  Both the Bio-Tech D3-50 and Nutrasal Micro D3 shown below are available at amazon.com

CazDCz8.jpgGaEir5t.jpg

As this is a more aggressive loading schedule, labs for 25(OH)D3, calcium and PTH are now required two weeks after start of this loading schedule.  These labs are essential to ensure serum calcium remains within its normal reference range.

The rationale for this new loading schedule is illustrated in the following normal distribution curves for 25(OH)D3 lab results at baseline and after 30 days on this treatment protocol.

ZVHDiXf.jpgThis new loading schedule will shift the green normal distribution curve to the right so that the mean 25(OH)D3 is close to 90 ng/mL after five to six days.  This also results in a faster favorable and CH pain free response.

Of course there are speed bumps on the way to a CH pain free response.  The most common speed bump is an immune system response to allergens that release large quantities of histamine.  As histamine to a CHer is like Kryptonite to Superman, this is where a first-generation antihistamine like Benadryl (Diphenhydramine HCL) comes into play.  It blocks the histamine H1 receptors and this helps prevent the neurogenic infrlammation associated with allergic reactions.

As BoscoPiko pointed out, some CHeers have a reaction to Benadryl.  Fortunately, there's Quercetin.  It's a plant and fruit based flavenoid  that acts as a good antihistamine, but larger doses are needed to get the same response as Benadryl.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

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My CH are episodic, so the first round I had with them almost 4 years ago happened about every other day and at night about an hour after I fell asleep.  This was before I started prednisone.  The prednisone seems to, at the least, break up the headaches making them happen at different times and I do believe it helps to end the cluster cycle.  This round, before I started prednisone, seemed to happen between 5 and 6pm, which was great since it was not affecting my sleep as much.  i started prednisone and then eventually got the oxygen.  Now, I am off of the prednisone and just doing the oxygen.  I do feel like I am on the back end of this cycle as the headaches are not coming near as often as a few weeks ago.  For example, the weekend before last I woke up 3 times on Friday night (1am, 3am and 5am).  Went to my man cave and jumped on the oxygen.  Within 5-10 mins, it was gone each time.  Saturday night was two times, and Sunday was zero and a full nights sleep.  Slept full night Mon-Thur of the next week.  This past Friday, it was 3 times just like the previous Friday, 2 times on Saturday and zero on Sunday.  Starting Sunday night I began taking two Benadryl before bed and have continued that this week and have not been woken up yet.  I plan to continue that through this weekend to see if it works on the weekend as well.  Trust me, getting up 3 times and aborting with oxygen still beats a headache.  I surely appreciate all the feedback and other options you have provided me.  My hope is that since the CH hit me at a later age, that I will age out soon.  The fact that I did not get my first cycle until after 40 years old and didn't get my second until 4 years later is a win in my book after reading other folks stories.  I have a good friend that dealt with them for years and he had a CH every 2 hours.  I cannot even begin to imagine what that would do to a person.

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13 hours ago, xxx said:

Hey Jseivers, Celtic Cluster and BoscoPiko,

Here is another chart from the oxygen demand valve method of aborting CH study I ran in 2008 that may help explain why the frequency of your CH goes up after repeated aborts with oxygen therapy.  This chart illustrates weekly CH frequency, mean weekly time to abort and mean weekly pain level at start of therapy over the 8 weeks of this study for one of the six chronic participants.  The other six participants had similar charts, just not at dramatic in weekly CH frequency range.

r9G8r8b.jpg

As you can see, the weekly CH frequency increased from 12 CH/week at start of this study, up to a maximum of 38 CH/week at the four week mark then dropped to 8 CH/week by the end of week 8.

This chart helps confirm the frequency of our CH increases with continued use of oxygen therapy up to a point then decreases over time.  At the same time, the mean weekly time to abort drops from 8 minutes at the start of this 8 week study down to 4 minutes by week 8.  The mean weekly pain level at start of this 8 week study also dropped from Kip-7 down to Kip-4 by week 8.

Why this happens is very interesting.  It involves what is called vascular toning.  Essentially what is happening over repeated aborts with oxygen therapy and hyperventilation is the muscles lining the arteries, capillaries and microvasculature within the trigeminovascular complex tone up (strengthen) like doing curls with a dumbbell strengthens the bicep muscles.  This means these vascular muscles become more efficient in effecting the vasoconstriction (narrowing of the lumen) that mechanically helps abort a CH.

Of course all this is nice to know, but only a foot note in your headache log if you start the anti-inflammatory regimen with vitamin D3 and the cofactors to control your CH.

iZH4l67.jpg

82% of CHers respond to this treatment protocol within the first 30 days with a significant reduction in CH frequency from 3 CH/day down to a mean of 3 CH/week.  Moreover, 54% of CHers starting this treatment protocol experience a complete cessation of CH in the first 30 days.

YwrQOyw.jpg?1

Over the last six months, these efficacy figures have actually started improving.  This is due in large part to the use of the  sublingual Micro D3 nanoemulsion taken during the initial loading schedule. 

The existing loading schedule called for 600,000 IU of vitamin D3 taken at 50,000 IU/day over 12 days. It resulted in a mean increase in serum 25(OH)D3 of 60 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration.

The new loading schedule calls for 700,000 IU of vitamin D3 taken at 140,000 IU/day over 5 days.  It results in a mean increase in 25(OH)D3 of 70 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration.

This new loading dose is made up of two (2) Bio-Tech D3-50 capsules/day (100,000 IU/day) and 0.5 mL/day of the Nutrasal Micro D3 nanoemulsion taken sublingual under the tongue, (40,000 IU/day) for a combined loading dose of 140,000 IU/day.  Both the Bio-Tech D3-50 and Nutrasal Micro D3 shown below are available at amazon.com

CazDCz8.jpgGaEir5t.jpg

As this is a more aggressive loading schedule, labs for 25(OH)D3, calcium and PTH are now required two weeks after start of this loading schedule.  These labs are essential to ensure serum calcium remains within its normal reference range.

The rationale for this new loading schedule is illustrated in the following normal distribution curves for 25(OH)D3 lab results at baseline and after 30 days on this treatment protocol.

ZVHDiXf.jpgThis new loading schedule will shift the green normal distribution curve to the right so that the mean 25(OH)D3 is close to 90 ng/mL after five to six days.  This also results in a faster favorable and CH pain free response.

Of course there are speed bumps on the way to a CH pain free response.  The most common speed bump is an immune system response to allergens that release large quantities of histamine.  As histamine to a CHer is like Kryptonite to Superman, this is where a first-generation antihistamine like Benadryl (Diphenhydramine HCL) comes into play.  It blocks the histamine H1 receptors and this helps prevent the neurogenic infrlammation associated with allergic reactions.

As BoscoPiko pointed out, some CHeers have a reaction to Benadryl.  Fortunately, there's Quercetin.  It's a plant and fruit based flavenoid  that acts as a good antihistamine, but larger doses are needed to get the same response as Benadryl.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

This makes alot of sense. Thank you for all the details!!

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12 hours ago, jseivers said:

My CH are episodic, so the first round I had with them almost 4 years ago happened about every other day and at night about an hour after I fell asleep.  This was before I started prednisone.  The prednisone seems to, at the least, break up the headaches making them happen at different times and I do believe it helps to end the cluster cycle.  This round, before I started prednisone, seemed to happen between 5 and 6pm, which was great since it was not affecting my sleep as much.  i started prednisone and then eventually got the oxygen.  Now, I am off of the prednisone and just doing the oxygen.  I do feel like I am on the back end of this cycle as the headaches are not coming near as often as a few weeks ago.  For example, the weekend before last I woke up 3 times on Friday night (1am, 3am and 5am).  Went to my man cave and jumped on the oxygen.  Within 5-10 mins, it was gone each time.  Saturday night was two times, and Sunday was zero and a full nights sleep.  Slept full night Mon-Thur of the next week.  This past Friday, it was 3 times just like the previous Friday, 2 times on Saturday and zero on Sunday.  Starting Sunday night I began taking two Benadryl before bed and have continued that this week and have not been woken up yet.  I plan to continue that through this weekend to see if it works on the weekend as well.  Trust me, getting up 3 times and aborting with oxygen still beats a headache.  I surely appreciate all the feedback and other options you have provided me.  My hope is that since the CH hit me at a later age, that I will age out soon.  The fact that I did not get my first cycle until after 40 years old and didn't get my second until 4 years later is a win in my book after reading other folks stories.  I have a good friend that dealt with them for years and he had a CH every 2 hours.  I cannot even begin to imagine what that would do to a person.

Any CH is awful but boy would I be lying if I said I wasent just a tab bit jelly of your 4 year gaps.. Sorry you get them at all and hope you find a way to make them say goodbye forever as I suppose that's what we are all wanting!

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Why no O2 concentrators? I readily agree they are not 'technically' required but to advocate against their use seems incorrect. I ask about these because my physician mentioned these can be enhanced for the airflow requirements required to abort my episodic CH several years ago. I have not acted on this 'comment' simply because I find oxygen concetrators to be too costly. I would definitely like to know how to modify a concentrator if anyone reading my response can refer to to references. I am in an active cycle presently and find medical O2 works but is not a robust solution for me. The 4 mg Sumatriptan injection is the only means I have to abort every headache at each occurrence.

I should add that I am not on and heave never been referred to the regimen of supplements given above. I will be looking at obtaining these rapidly. we have Benadryl in the house. What is the dosing schedule required?

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Hey RVC, I can tell you that I am currently using a 10Lm O2 concentrator with the Cluster O2 Kit from clusterheadaches.com and I have been able to abort every headache that has started.  I do know that others have spoken against the concentrators and I can only speak for my experience.  When the concentrator was delivered, a M Tank was also delivered for backup purposes if the power was to go out.  Unfortunately, the M Tank had a 8Lm regulator delivered with it.  I have been looking for a 10-15 Lm regulator that I can add to it, but have been unable to find the correct one for this tank so far.  

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There are several brands ranging in quality that go to 25 LPM.  I can tell you that when I switched it was a godsend.  It cuts your abort times vastly. Not all of my CHs respond to oxygen but I will never go back to low flow less than 25. They cost 35-65$. I’ll get the name of the company I use when I get home.  I prefer to use a good US brand instead of cheap China products but they cost a bit more. At 10lpm I get no relief. I use Mtanks and have had great luck w Apria. Befriend your delivery driver and try and get their cell number.  My insurance switched and for a while I just call the dude and they deliver. Never got a bill or anything. I’m scared when I move to FL I’m going to have a problem but I’ll just have to wait and see.  Apria has a vacation/ travel service but since COVID they will only exchange tanks you have and not bring you new ones. So I’ll be driving down I-95 w a car full of M tanks. At one point I had over 20 M tanks at my house and was going through 5-7 tanks a week. Now I use 1-3 since starting ketamine. Once you switch to 25 you’ll never go back!  I have posted the link to the co I bought from in the past if you search my post hx. 

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Yeah, my CH are episodic too. While I cannot imagine having to deal with the threat of one of these monsters on a daily basis as chronic patients do the blindside nature of the episodic form is no picnic. My tanks are the E size and I do recall my physician informing me insurance now covers this so I may need to find a way to add supplies to my 'durable medical equipment cave'.

I just ordered the mask from Clusterheadaches.com so this will help. I have most of the supplements listed above in the house but I'm also a celiac patient so I'll need to order the others from appropriate providers if necessary. Both the Bio Tech and LiveWise state they are gluten free. I suspect certification may not be needed.

I'm glad I registered today...this was overdue.

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Jseivers,

I'm 77.   I was Dx'd with episodic CH in 1997 after three years of CH bouts each spring that lasted 6 to 8 weeks. I was Dx'd as chronic in 2005 by neurologists at the National Institutes of Health (NIH) after a year of daily and nightly CH at an average frequency of 3/day-night.  I'm still chronic.  All I need to do is stop taking vitamin D3 and within a few days to a month depending on my 25(OH)D3 serum concentration, the CH beast jumps real ugly. 

From my experience and after meeting the several of the top neurologists in the world specializing in the treatment of patients with CH like Dr. Arne May, Dr. Todd Rozen and Dr. Peter Goadsby, all of whom are on the ICHD-3 working group for trigeminal autonomic cephalagiasaging out is not in the cards.

After 27 years living with CH and 10 years of dedicated research in the pharmacokinetics, pharmacodyamics, and molecular biology of vitamin D3 it's clear to me, that its capacity to control and prevent CH comes through a process called genetic expression that's made possible by vitamin D3. 

As CHers, we need to maintain a 25(OH)D3 serum concentration between 80 ng/mL and 150 ng/mL to have real control of our CH like pain free > 95% of the time.  That's going to take a vitamin D3 maintenance dose between 10,000 IU/day and 15,000 IU/day for most of us.  Some CHers will need much higher doses.

Take care,

V/R, Batch

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I've been experiencing 3CH/day since entering my current cycle. For some reason it appears this is a magic number. I'll discuss measuring my serum 25(OH)D3 with my PCP. This has been an unusual cycle in that the timing of the headaches near onset of the cycle was offset from my typical timing. Now that I am i the midst of the cycle the timing of my headaches has become more what I usually experience/expect.

 

 

XXX - How much monitoring was required of your serum vitamin D hydroxy? Your new strategy places you at the safe limit. I would be too uncomfortable to implement this strategy w/o the council of a PCP or my neurologist.

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After 40 years of episodic clusters, its the O2 that has been the most consistent for me.  My understanding is that concentrators dont provide 100 percent oxygen which is why the tanks with the cluster non rebreather are so important.  Mild clusters can respond to as little as 6 liters per minute of 100 percent O2 if you are running low.  But the nasty ones need the high flow.  Always keep an E tank in your car during a cycle.  

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