Pain behind both eyes/ temporal pressure

[mads]

hi everyone. I am in a cycle and a few headaches have started with super intense radiating pain in both temples and behind the eyes. Almost like there is something constricting the front half of my head from temple to temple, making the area behind my eyes feel super pressurized. I typically get the more common one sided experience, and these ones do end up phasing over to one side but wondering if anyone has experienced this? Both eyes are also getting super red and irritated. 

Sometimes the beginning of an attack can feel shadowy in both temples but that is usually a lot more subtle, whereas this is feeling super intense on both sides for a lot longer. 

After 4 years of 2 cycles a year I am finally getting oxygen next week, really hoping it brings some relief.  Thanks to you all and this site for the information and support. I will definitely be relying on it to learn how to use the oxygen. I have had such a hard time finding a doctor who is equipped to help, which I know a lot of us struggle with. 

Could not get through this without this site! 

[CHfather]

2 hours ago, mads said:

 Thanks to you all and this site for the information and support. I will definitely be relying on it to learn how to use the oxygen.

Here's some basic oxygen info:

You should have oxygen from a tank/cylinder/cannister, not a concentrator that makes O2 from room air. You should have 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/.

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.

You want to have at least two tanks: one large one for home and one smaller one that you can take in the car, to the office, etc.

Batch has recommended what he refers to as a “redneck” approach, in which hyperventilating with room air is alternated with using pure O2. Read more about that here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

(There is some research that indicates that O2 is sometimes less effective when first used, and then gets better over time (pretty quickly).  That's something to keep in mind, although many people get excellent relief from the beginning.)

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.

Stay on the O2 for 5-10 minutes after you have aborted the attack. For many people, this holds off future attacks.

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.

There is no documentation of people experiencing “rebound attacks” from using oxygen at proper levels.

People find different ways of breathing that work best for them. I have mentioned Batch’s suggested hyperventilation strategy as one example. In general, you should be inhaling deeply as you begin, holding the air in your lungs for a second or two, and then deeply exhaling, 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 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.

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 of a tank remaining. Something to be aware of.

Some notes about dealing with oxygen suppliers (repeating some of what was said above). To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment.  Many of them are not used to providing for people with CH.  You want cylinders (tanks), not a concentrator.  At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank).  Multiple versions of each tank are better.  You need some kind of stand, at least for your larger tank(s).  You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask.  These are all things they should know to give you to treat CH, but often don’t.  When the stuff is delivered, have the delivery person set it up for you and be sure it's working. 

Some people have found that the O2 delivery people are quite willing to provide them with extra tanks.