Some Interesting Things That Help Me

[Elliott]

Hello everyone.  A little about me:  I've been dealing with Cluster Headaches for over 15 years now.  I am currently at the end of my most recent cycle, which lasted around 2 weeks.  My last headache was yesterday.  I busted with 1 tab of LSD about 3 days ago, but continued to have headaches after the effects wore off.  I wanted to share some things that have helped me, in no specific order:

1.  Stop using pillows during a cycle.  I may just stop using them altogether.

2. A Massage Gun.  The target areas being the nose, cheek, brow, temple, ear, base of skull, neck, and trap muscle.

3.  A heating pad.

4.  Zok device.

5.  Sinus Plumber capcasin nasal spray.

6.  Ibuprofen.  800mg

7.  Nasal Turbinate Reduction via Coblation [Surgery]

I previously used to rely on Imitrex 6mg subcutaneous injections, but I noticed I was having increased headaches (5 or 6 a day, instead of 1 to 3), so for the last 3 cycles I have tried to completely avoid Imitrex.

 

Before this July 2025 cycle, my last cycle was 2 years ago, around June 2023.  Between those two cycles, I insisted on having a Nasal Turbinate Reduction because I noticed that if I could somehow beat the congestion before it fully closed my nostril, the headache was less intense.  Before June 2023, my last cycles were June 2021 and January 2019.

 

[jon019]

...oxygen?

[Elliott]

No, Oxygen has no effect for me.

[CHfather]

6 hours ago, Elliott said:

Oxygen has no effect for me.

Well, it is one of my job responsibilities to say here that for at least 95 percent of people who have said here that oxygen doesn't work for them, one of two things has been true: (1) they had not used oxygen properly, probably due to a doctor's wrong prescription or a medical oxygen supply company giving them the wrong equipment or not having optimized the equipment that did have; or (2) they didn't have CH.  (I'm not being facetious about #2: There are some CH lookalike conditions for which oxygen is not effective. But since triptans did work for you, I think it is unlikely, but not impossible, that you don't have CH.)

If any of the following situations was true for you, then you really need to try oxygen again, because it makes a huge difference.

IF...

(1) ... you got a concentrator (machine that makes oxygen out of room air) and not tanks/cylinders;

(2) ... you had anything other than a non-rebreather mask, such as nasal cannula or some kind of mask other than a non-rebreather;

(3) ... you found that the rate of oxygen flowing into the bag on your mask was too slow to keep up with a correct pace of breathing ....

THEN you didn't really have a proper test of oxygen.

Since you say oxygen had "no effect," I'm kind of assuming the culprit would have been #1 or #2.  Or of course it is possible that you are in the very very small minority for whom O2 doesn't work, but I wouldn't want to accept that until I was sure I had given it the best shot.  We have seen too many times here people who thought that oxygen didn't work for them but then tried again and found that it does.

 

[Alx]

Wow a cluster cycle of two weeks. Sounds heavenly.
What do you think it is what is making it stop so soon?

my cluster cycle always last around two to three months.

 

[Elliott]

CHFather- I've tried oxygen in both an Emergency Room setting and with prescribed O2 tanks delivered to house.  Ineffective for me.  Your claim that "95% of people were just doing it wrong" is silly.

 

 

[Elliott]

2 hours ago, Alx said:

Wow a cluster cycle of two weeks. Sounds heavenly.
What do you think it is what is making it stop so soon?

my cluster cycle always last around two to three months.

 

Because I busted with LSD.  That was one of the first things I mentioned in my post.  What do you think "bust" means?  That said, I had a low intensity headache for several hours today.

[Alx]

I also bust with LSD but i would love it when it stops so soon.

what is your dose? did you test the blotter how many mcg ?Maybe i need to take more. Last cluster i had 4 LSD busts

and 8 bust with truffles(legal mushrooms where i live).
Before it stopped.

that is why i asked.
What is the thing that makes it work in 1 bust?

[Elliott]

Alx - I spoke too soon.  I just woke up with a pretty intense headache about an hour ago, after only falling asleep for about an hour.  I was experiencing 2 a day before the bust, and they were progressively getting worse.  After the bust I had about 24 hours of peace and some weak headaches the days following, so I assumed it was over.

To answer your questions:  according to the seller, it is 200ug.  In the past, I've had success with taking much higher doses than with small ones (2-4 hits to guarantee remission).  I may have to do that again.

[CHfather]

9 hours ago, Elliott said:

CHFather- I've tried oxygen in both an Emergency Room setting and with prescribed O2 tanks delivered to house.  Ineffective for me.  Your claim that "95% of people were just doing it wrong" is silly.

As much as I appreciate your using the word "silly" when perhaps you were tempted to use something stronger, I'm gonna say that the trials you describe are not persuasive that oxygen won't work for you.  Emergency rooms almost always use flow-rate settings that are considerably below optimal, and the same is true of the regulators that are provided by oxygen suppliers.  It is also not unheard of for ERs to use a standard mask instead of a nonrebreather, or for suppliers to send the wrong mask (or cannula). (And no ER uses, and no supplier provides, the "ClusterO2 Kit," the mask specifically designed for people with CH.)  

My daughter who has CH was convinced that oxygen didn't work for her until we set up an optimized system. Now she aborts all but the very worst with O2 in well under ten minutes and describes O2, as many do, as a "lifesaver."  So maybe my "95 percent" claim was unduly weighted by her experience, but I will say that a large number of people who have been at this board saying O2 didn't work for them were surprised when it turned out that it did when they had an optimized system.

[Elliott]

CHFather- Thank you for that information.  I will explore my options near me and give oxygen another try.

[Alx]

8 hours ago, Elliott said:

Alx - I spoke too soon.  I just woke up with a pretty intense headache about an hour ago, after only falling asleep for about an hour.  I was experiencing 2 a day before the bust, and they were progressively getting worse.  After the bust I had about 24 hours of peace and some weak headaches the days following, so I assumed it was over.

To answer your questions:  according to the seller, it is 200ug.  In the past, I've had success with taking much higher doses than with small ones (2-4 hits to guarantee remission).  I may have to do that again.

Oh no. That is horrible but oh so familiair.
My last clustercycle just wouldnt stop, but in the end it did.

Thanks for the info about the dose.

over here in Europe the papertrips are half of what they used to be in the 90ies , 75 to 100 mcg. So next time i take two instead of one.

i wish for you that you will be painfree soon.

[CHfather]

18 hours ago, Elliott said:

I will explore my options near me and give oxygen another try.

Oxygen from a tank/cylinder/cannister, not a concentrator that makes O2 from room air.   Either a non-rebreather mask or the mask that is made for people with CH, the “Cluster O2 Kit,” which you can buy here: http://www.clusterheadaches.com/ccp8/.

If you get a standard non-rebreather mask, there will probably be at least one little circle of small holes in it with no gasket behind it. Tape over that circle or cover it with your thumb when you inhale.  Be sure you are pressing the mask firmly to your face; don't use the strap to hold it on (cut the strap).  Be sure you are getting a good seal, particularly if you have facial hair.  You want to be inhaling pure O2 from your mask, with no room air getting in. Cutting the strap will allow the mask to fall off if you fall asleep, so you don’t continue breathing O2.

The flow rate should be sufficient that the reservoir bag on your mask is always full when you are ready to inhale using a forceful breathing strategy. For some people, this is 15 liters per minute (lpm); for others it can be higher. Since medical O2 suppliers generally won’t provide a regulator that goes higher than 15 lpm, you might have to get your own regulator. More about regulators below.

Many people find that drinking caffeine or some kind of energy beverage as they start on the O2 significantly improves their abort time. More on caffeine/energy beverages below.

People find different ways of breathing that work best for them. For many people, deep, full inhales and exhales work best. You can fully exhale before your first inhale of O2. When you inhale deeply, hold the O2 in your lungs for a second or two, and then deeply exhale, to the extent of doing or nearly doing a "crunch" to force out as much air from your lungs as possible. Looking down toward your feet as you use the O2 has been shown to help with aborts.

Regulators. The oxygen should be flowing into the reservoir bag on your mask at such a rate that you do not have to pause before your next inhale. 15 lpm doesn’t do that for everyone, so they buy different regulators. NOTE that medical O2 tanks take different types of regulators. The smaller tanks use CGA 870 regulators and the larger tanks use CGA 540 regulators (all welding O2 tanks, of any size, take CGA 540 regulators). You can buy higher-flow medical regulators of both types online at amazon, EBay, and elsewhere.

(Many people who can't get medical oxygen use welding oxygen. Or some do it because it's less expensive over time. A whole discussion of welding O2 here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

Many people use welding regulators (which, as I have said, will only fit on larger medical tanks). These allow very high flows, and can be adjusted for the optimal flow rate for you. You also can find these at many places, including amazon and EBay. You can get them at welding supply stores, too, but they are likely to be much more expensive. You should be able to find a very acceptable one for about $40 or less. If you buy one, try to be sure that it comes with a barbed valve that will hold your mask tubing. You can also buy a very inexpensive barbed adapter at many hardware stores or online. (Some people have gotten mask tubing onto the non-barbed fitting that is standard for the welding reg -- I'm just not very "handy" in that way.) Also, be aware that unlike a medical regulator, a welding regulator has no lpm settings or gauge. So you have to fiddle with it a little to get the flow rate you want. This becomes very easy very quickly.

One other thing you'll need if you buy a CGA 540 regulator: a large adjustable wrench to tighten the regulator onto the tank.

Welding reg for large medical tanks and all welding tanks: ARCCAPTAIN Oxygen Regulator Gauges Gas Welding, 0-4000PSI and 0-100PSI Welding Gas Gauges With 9/16"-18 and 1/4" Hose Outlet and Welding Gas Gauges CGA 540 Inlet Connection - Amazon.com

Medical reg that goes up to 25lpm for large medical tanks: Amazon.com: 25LPM Oxygen Regulator CGA-540, Adjustable Flow 0-25 LPM - ASTM G175-03 - Aluminum/Brass, Max Inlet: 3000 PSI, Outlet: 50 PSI - Compact 1.38 inches X 6.29 inches : Health & Household

Medical reg that goes to 25 lpm for smaller medical tanks: Amazon.com: 25LPM Oxygen Regulator CGA-870, Adjustable Flow 0-25 LPM - ASTM G175-03 - Aluminum/Brass, Max Inlet: 3000 PSI, Outlet: 50 PSI - Compact 1.38 inches X 4.65 inches : Industrial & Scientific

A demand valve system supplies oxygen only when you inhale (or sometimes when you press a button to release the O2). People who have these swear by them: as much O2 as you need whenever you need it. They can sometimes be found on EBay. There are other sources for them, but I’m not sure what they are. Maybe someone will add that information.

Some people have observed that for some reason when the O2 level in their tank is “low,” the O2 doesn’t work as effectively for aborting, or might not work at all. “Low” in some cases can be as much as a third or even half of a tank remaining. Something to be aware of.