CH sufferer for a very long time. Imitrex injections worked well in the middle of the night providing at least 4 hours of sleep. It had been over a year since my last attack and i'm now in week 5 and cannot take imitrex anymore because of a heart issue. I recently started on oxygen and it's helping reduce the attack in about 15 minutes, however as soon as i fall asleep it is back again within 1 hour. I am going to the garage to breathe oxygen every hour at least 6 time a night. Is this normal?

Early on yes, and for some, even after using it for a while. You have several options.

Start taking melatonin before bedtime, start with 9 mg, you may have to adjust dosing up or down, up if it's not reducing your nite time hits, down if you feel zombied out in the morning. Many find they can avoid the night time hits altogether by using melatonin.

Stay on the 02 for another 5-10 minutes after you have succesfully aborted the attack, this works for many. (did not work for me. :()

I now drink an energy drink while I abort with the 02. 02 kills the attack, energy drink will push the next attack way back. I use sugar free red bull, but any containing the combo of caffiene and taurine will do it. The down side is if you are caffiene sensitive it's going to make it tough to get back to sleep.

Do you have a prevent med you take, verapamil, lithium etc.? I use lithium, at 1200 mg a day it stops about 60-70% of my attacks. Verapamil is the standard first line prevent med for CH.

Joe

Steve56,
Agreed with everything Joe wrote.  As Joe pointed out, repeat hits you are experiencing can usually be resolved by staying on the o2 addtl time after the abort.  Otherwise you have not completely aborted the attack and the pain you experience in an hour or so will commonly occur as a re-attack.

There are plenty of recent posts to read and understand that should help you understand the do's and don'ts with o2 therapy.

Are you using a non-rebreather mask?

What flow rate are you using?

Are you immediately getting to your o2 when you feel the onset of an attack?

Do you sit, stand, pace, etc when on o2?

Do you breathe the o2 or hyperventilate the o2?

Answer these questions to help us, help you ;)

Thanks for the quick answers. I also have been taking 480mg of Verapamil everyday for the last 20 years. Getting back to the oxygen i use the mask that came with it, which covers the nose and mouth but does not have a bag attached to it. Flow rate is 15. I am getting to the oxygen ASAP. The attacks are 98% in the middle of the night with a dealable dull headache all day. I sit on a chair when i use the oxygen and i breathe the O2. Any advice would greatly be appreciated. Ive been on the O2 therapy for about 5 days so far and i'm exhausted.

Steve56 wrote on Nov 1^st, 2011 at 1:01pm:

Thanks for the quick answers. I also have been taking 480mg of Verapamil everyday for the last 20 years. Getting back to the oxygen i use the mask that came with it, which covers the nose and mouth but does not have a bag attached to it. Flow rate is 15. I am getting to the oxygen ASAP. The attacks are 98% in the middle of the night with a dealable dull headache all day. I sit on a chair when i use the oxygen and i breathe the O2. Any advice would greatly be appreciated. Ive been on the O2 therapy for about 5 days so far and i'm exhausted.

15 lpm is not enough to effectively abort an attack.  Get yourself a high flow regulator 0 - 60 lpm or a welders regulator which will offer high flow.

The high flow rate regulator will provide you the ability to hyperventilate.  Breathe in the 100% o2 as fast as possible, and exhale as much as you can til you cough, then inhale deeply again, exhale as deeply as you can, kinda like after you've run a marathon.

Take a look at the o2 tab on the left side of your screen and also the threads posted in this section and the medications/treatments section of this message board. 

The concept is to get rid of the carbon dioxide (co2) buildup which is creating a vasodilating impact on your trigeminal nerve causing the attack and keeping the pain alive.  The o2 acts as a vasocontricter to your trigeminal nerve, similar to Imitrex, and subsides the attack.

Basically, the inflammation (vasodilation) causes the attack and needs to be controlled immediately at onset of an attack.

100% o2 intake and the co2 exhalation process (o2 therapy while hyperventilating at high flow rates with a non-rebreather mask) will help greatly at aborting attacks. 

The longer you wait to get on the o2, the longer it will take to abort an attack. 

Low 02 flow rates = minimal relief.

High flow rates (25--40lpm) gives you the opportunity to hyperventilate which will provide relief.

O2 therapy takes practice, trial & error, and patience; but it does work when used properly.

Also, consider ordering a o2 mask from the cluster headache store (left side of your screen) which includes a 3 liter bag that is necessary for proper aborts with o2 therapy.

The Rebull (energey drinks) have been very helpful for many of us that use o2 therapy, slamming the drink as fast as possible, then getting on the o2.  However, these energy drinks that contain 1000mg of Taurine are NOT a wise idea for you considering you are on Verapamil.

As for the Verapamil, you may consider asking your doctor about increasing your dosage and should have a EKG first to make sure your heart can handle it.  Otherwise, as Joe mentioned, there are other preventative meds that can be helpful.

Lastly, you may consider reading the thread titled "123..." in the medications section.  It is a helpful natural, healthy anti-inflmmatory regimen that has proven helpful for many of us here.

Hope what I shared makes sense to you.

Lots of valuable info to read here on this site, moreso than anywhere in the world. We are all understanding here and willing to help, so keep firing away with questions should you need.

Steve56 wrote on Nov 1^st, 2011 at 1:01pm:

Getting back to the oxygen i use the mask that came with it, which covers the nose and mouth but does not have a bag attached to it.

This is not a non-rebreather mask, so you'll be re-breathing some of your exhaled breath. This will slow the abort time.

The flow rate of 15lpm is enough for some people to abort but not for others, which may also be a factor. I know that my abort time at 15lpm is almost twice as long as at 25lpm.

Some people don't agree, but for ME:

Over a period of about 10-12 days of using very high flow O2 therapy, the duration between those repeated night hits will lengthen. The key is to attack each one hard and fast. By that I mean very deep breathing of 100% O2 at a good fast rate.

If you succumb to the temptation to breathe the O2 just long enough to stagger back to sleep - they shall return.......

Marc

Your number one priority is to get a proper mask. The one you have now is all but worthless for CH. We need 100% pure O2 and the mask you have has holes on the side that lets in outside air. Plus with no bag there's not enough O2 to get a full breath.

Here's the O2 info LasVegas is talking about.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

If you need help getting a NON-REBREATHER mask let us know we'll help you get one. If you tell us where you are, one of us may live close to you. At least what state or major city.

Don

To use the mask you have, you need to tape the holes on the side shut, then hold the mask tight against you face to breathe in and lift it to exhale.

Better would be to rig up a garbage bag with the tube going into it and breathe from the bag.

Good Luck,  Don

Thanks for the assistance. I live outside of philly and i ordered the right mask yesterday. It is definately getting worse i had 6 trips to the O2 between midnight and 7:00AM. All day dull headaches and neck pain which i can deal with but nights are unbearable. Again thanks for the replies.

Steve, forgive me but why do you go to the garage to hit the O2?

Don

the tank is so heavy they wouldn't bring it upstairs and prefer to suck on O2 in private

Thanks Steve, I understand. I sleep right next to mine.

Don

Steve56 wrote on Nov 3^rd, 2011 at 10:53am:

........................ and prefer to suck on O2 in private

Yep.

Skyhawk5 wrote on Nov 3^rd, 2011 at 3:29pm:

Thanks Steve, I understand. I sleep right next to mine.

Me too, oxygen on one side of the bed and my supporter is on the other side of the bed, ready so if the beast arrives she can make ensure I'm on the oxygen quickly.

Unfortunatly I sleep in another room so I don't wake the wife when in this part of my cycle. I was awakened 9 times in 6 hours last night to hit the O2.

I like to be on the floor for safety so I'm on a foam pad and 3 sleeping bags next to my M-tank and E. Quite comfortable actually.

Don

Skyhawk5 wrote on Nov 3^rd, 2011 at 9:58pm:

Unfortunatly I sleep in another room so I don't wake the wife when in this part of my cycle. I was awakened 9 times in 6 hours last night to hit the O2. I like to be on the floor for safety so I'm on a foam pad and 3 sleeping bags next to my M-tank and E. Quite comfortable actually. Don

I relate, it definitely disturbs sleep to your mate. I'm getting hit every 2 hours at night, beginning 1 hr after I go to sleep, doesn't matter what time I go to sleep. 

REM is the problem which occurs btw 1 and 2 hours after we fall asleep when Co2 levels are highest :(