A question on oxygen

[Awitcher656]

So my attacks occur almost exclusively during sleep and I wake up at about kip 7. Does oxygen still work as an abortive in this situation when the attack has already been ramped up this high. 

[spiny]

I would say yes. Not as quickly of course. Try an Energy Shot, cold, and slam it down on your way to the O2. You can hyperventilate on the way - force out the CO2 with major exhale and add a crunch. Like doing a breathing test if you have ever had one.

I'm nocturnal as well. I wake up, with that 'What?' feeling. Then it starts to ramp and I head out for the caffeine and O2. Takes oh about 15 seconds to decide!!! And I have not had my O2 fail me yet. Take longer? Yes.

[xxx]

Awitcher,

Great question and the short answer is Yes.  Oxygen therapy, if properly administered can stop a CH hitting while sleeping all the way up to a Kip-9 on the 10-Point Headache Pain Scale.  Once a CH has risen to a Kip-10, we're all along for some heavy sledding as very little works to abort CH at this pain level.

You need to understand that oxygen therapy, even administered properly, is still just an abortive and not a preventative...  That means your next regularly scheduled CH attack will hit anyway.  This can be frustrating until you realize when used properly, oxygen therapy can abort a CH in an average of 7 minutes... When you consider left untreated, a CH can last 30 to 90 minutes... That makes avoiding 23 to 83 minutes of needless CH pain a very good deal...

The better solution is to see your PCP for the 25(OH)D lab test.  25(OH)D is the first metabolite of vitamin D3 that's used to measure its status.  It turns out that CHers with active bouts of CH are vitamin D3 deficient or insufficient, a serum 25(OH)D concentration less than 30 ng/mL...  As CHers, we need to keep our 25(OH)D serum concentration up around 80 ng/mL in order to keep us CH pain free or significantly reduce the frequency, severity and duration of our CH.

The following chart illustrates the normal distribution curve of baseline 25(OH)D lab results taken before start of the anti-inflammatory regimen with 10,000 IU/day vitamin D3.

You can download a pdf copy of the anti-inflammatory regimen CH preventative treatment protocol at the following link.  Henry Lahore posted this treatment protocol for me on 21 January, 2017.  As of this morning, readers at the VitaminDWiki website have downloaded 3295 copies of this treatment protocol

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Take care and please keep us posted.

V/R, Batch

 

[Awitcher656]

Thank you guys for the information. I really appreciate all the work everyone does here to help people figure this thing out. The shocking lack of public awareness to this condition is really pretty amazing. I was shopping neurologists this week looking for the right doctor and I would ask the schedulers who they had who specialized in treating cluster headache. And of course the response every time was "well all of of our doctors can treat headaches." And I then very politely told them that was not what I asked. Finally found my way to the recommended doctors list here and found a neurologist that had confirmed positive experience with this. Of course he can't see me until the end of October. I was originally going to go to my primary who diagnosed me 4 years ago and go back on verapamil which worked pretty well for me in past cycles, but in the last year or so I have become more wary of doctors and there obscene over reliance on prescription drugs and would like to avoid them if possible. Things like oxygen and vitamins sound like a far better way to go if they work. Should I see my primary and just bring him the information he needs to get me the right treatment. Seems ridiculous that people with CH literally have to educate their own doctors in order to get appropriate treatment. When I was diagnosed initially, there was no discussion about the various methods of treatment. It was verapamil and imitrex. End of story. I guess I was lucky that my GP was able to identify it at all since he had a patient that also had CH so he was at least a little familiar with it. 

I have a neurology appt on October 25th, but in the mean time I should probably see my Primary and do a test for vitamin D and try to get a script for oxygen, yes? If he will do it that is. I have heard people have had problems getting GPs to prescribe it. They look at everything through the "we have a drug for that" prism. Yea, I don't like doctors very much.

This was kind of a rant, but thanks for listening.

[xxx]

Most of us old timers are all about educating neurologists about CH...  The sad fact is CH is so rare, most neurologist have never treated a patient suffering from CH, let alone have a CHer present with an actual attack...  Dr. Todd Rozen did a survey of CHers then added the insight that from his perspective as a seasoned headache specialist having worked out of the top neurological headache institutes and centers, that most neurologists have never treated a patient with CH during their entire career in neurology...

The path of least resistance is usually the best course of action.  Take a copy of the anti-inflammatory regimen CH preventative treatment protocol to your PCP and ask for the 25(OH)D lab test.  It's a very safe bet your results will come back < 30 ng/mL and for sure < 40 ng/mL.  Ask for the Rx for oxygen therapy.  The script should read "Oxygen therapy at 15 to 25 liters/minute with a non-rebreathing oxygen mask as an abortive for cluster headache."  If I'm correct, pick up the needed supplements and get started.  When your appointment comes up with the neurologist in October... you'll have something new to talk about.

Please let us know when you do start this regimen as there can be a few bumps in the road that are easily taken care of if we know you've hit one.

Take care and please keep us posted.

V/R, Batch

[jon019]

Awicher...hiya and welcome...you're in the right place....and aint no such thing as a "rant" in clusterville...we all been there

When episodic and in cycle I used to get BLASTED at night...8 times...once per hour..so I may have compensated by becoming a light sleeper. Anyway, I would set up my O2 buddy right next to me...turn the dial to 0 and crank the valve open. The instant I was awakened I would slam the mask on (non rebreather purchased from ch.com...my FAVORITE possession!) and turn the dial up all the way (easier than trying to find the valve handle and fumbling in the dark). For some reason...also I know not why...these hits were more subject to successful O2 abort than day time hits (perhaps learning to wake before the hit got too bad, dunno).....5 mins or so and I could go back to sleep.

Ya gotta work the mental aspect too. YMMV...this is what worked for me:

Early on I used to get all agitated... screaming, thrashing, cursing, pacing, sweating, ADRENALINE by the bucket full. Learned the HARD way this was getting me NOWHERE...for any hit at ANY time...life got a whole better after I figured that out.

Next I realized besides remaining calm I needed to remain "not fully awake" which allowed me to go back to sleep nearly immediately. Left the lights off, kept my eyes closed, stayed on the edge of the bed with minimal movement, and most importantly concentrated on BREATHING only...no thoughts of anything else....'breath in-breath out" rinse and repeat....

Finally....the next morning...on the way to work....rather than cursing the bad luck of constantly interrupted sleep....I rejoiced that "HEY...I got 6 hours last night" (which was WAY better than before)......it got to be a game that me and the beast played. Attitude...it's all in the attitude... CH as well as life................

Best

Jon

 

[CHfather]

Yes, at least try to get oxygen from your GP.  They have some kind of book or online reference that they are supposed to refer to when treating things they're not familiar with. One of them is called "Up to Date."  You can see here that it recommends O2 first: https://www.uptodate.com/contents/cluster-headache-treatment-and-prognosis?source=search_result&search=cluster+headache&selectedTitle=2~41  Any such reference will have oxygen listed as the #1 evidence-supported abortive (along with injectable Imitrex).  Do you know someone at the doc's office, a nurse or assistant or something, who you could contact before your appointment to look it up?  This is a link to the core study of the effectiveness of oxygen: http://jamanetwork.com/journals/jama/fullarticle/185035    Maybe you could send it over in advance, or at least bring it with you.  To be honest, some of us theorize that doctors don't prescribe oxygen in part because they don't know how to prescribe it.  The prescription should read something like "Oxygen therapy for cluster headache. 15 minutes at 15-25 lpm with non-rebreather mask."  Ideally, the doc would fax it to a medical oxygen supplier, but even if s/he gives it to you, you can call suppliers on your own. (The "15-25 lpm" in there is an attempt at an end run.  Most doctors who do prescribe O2 will only prescribe up to 15 lpm, but 25 is better, so it's worth a try if you have any voice in what gets written.)

[Awitcher656]

46 minutes ago, jon019 said:

Awicher...hiya and welcome...you're in the right place....and aint no such thing as a "rant" in clusterville...we all been there

When episodic and in cycle I used to get BLASTED at night...8 times...once per hour..so I may have compensated by becoming a light sleeper. Anyway, I would set up my O2 buddy right next to me...turn the dial to 0 and crank the valve open. The instant I was awakened I would slam the mask on (non rebreather purchased from ch.com...my FAVORITE possession!) and turn the dial up all the way (easier than trying to find the valve handle and fumbling in the dark). For some reason...also I know not why...these hits were more subject to successful O2 abort than day time hits (perhaps learning to wake before the hit got too bad, dunno).....5 mins or so and I could go back to sleep.

Ya gotta work the mental aspect too. YMMV...this is what worked for me:

Early on I used to get all agitated... screaming, thrashing, cursing, pacing, sweating, ADRENALINE by the bucket full. Learned the HARD way this was getting me NOWHERE...for any hit at ANY time...life got a whole better after I figured that out.

Next I realized besides remaining calm I needed to remain "not fully awake" which allowed me to go back to sleep nearly immediately. Left the lights off, kept my eyes closed, stayed on the edge of the bed with minimal movement, and most importantly concentrated on BREATHING only...no thoughts of anything else....'breath in-breath out" rinse and repeat....

Finally....the next morning...on the way to work....rather than cursing the bad luck of constantly interrupted sleep....I rejoiced that "HEY...I got 6 hours last night" (which was WAY better than before)......it got to be a game that me and the beast played. Attitude...it's all in the attitude... CH as well as life................

Best

Jon

 

Jon,

Ive definetly noticed that staying calm and not thrashing around is helpful. I let myself get worked up sometimes and I just end up waking everyone up, smashing into things, and generally just making it worse. 

[Awitcher656]

20 minutes ago, CHfather said:

Yes, at least try to get oxygen from your GP.  They have some kind of book or online reference that they are supposed to refer to when treating things they're not familiar with. One of them is called "Up to Date."  You can see here that it recommends O2 first: https://www.uptodate.com/contents/cluster-headache-treatment-and-prognosis?source=search_result&search=cluster+headache&selectedTitle=2~41  Any such reference will have oxygen listed as the #1 evidence-supported abortive (along with injectable Imitrex).  Do you know someone at the doc's office, a nurse or assistant or something, who you could contact before your appointment to look it up?  This is a link to the core study of the effectiveness of oxygen: http://jamanetwork.com/journals/jama/fullarticle/185035    Maybe you could send it over in advance, or at least bring it with you.  To be honest, some of us theorize that doctors don't prescribe oxygen in part because they don't know how to prescribe it.  The prescription should read something like "Oxygen therapy for cluster headache. 15 minutes at 15-25 lpm with non-rebreather mask."  Ideally, the doc would fax it to a medical oxygen supplier, but even if s/he gives it to you, you can call suppliers on your own. (The "15-25 lpm" in there is an attempt at an end run.  Most doctors who do prescribe O2 will only prescribe up to 15 lpm, but 25 is better, so it's worth a try if you have any voice in what gets written.)

My wife used to work at the clinic I go to about 4 years ago so we know a lot of people there, and I've known my doctor for probably 5 years. If I show him good information I think he will take the time to look at it. Getting an appointment is difficult because he is usually booked two weeks out. I wouldn't see anybody else at that office, it would be a waste of time.

[Awitcher656]

4 hours ago, spiny said:

I would say yes. Not as quickly of course. Try an Energy Shot, cold, and slam it down on your way to the O2. You can hyperventilate on the way - force out the CO2 with major exhale and add a crunch. Like doing a breathing test if you have ever had one.

I'm nocturnal as well. I wake up, with that 'What?' feeling. Then it starts to ramp and I head out for the caffeine and O2. Takes oh about 15 seconds to decide!!! And I have not had my O2 fail me yet. Take longer? Yes.

Does the caffeine keep you awake after the hit is over? That's what I'm worried about if I'm slamming caffeine at 2 in the morning. As it is right now I can usually fall sleep when it starts to come down. I just have to ride the devil for an hour or two first. Sucks, but at least I can sleep after.

[CHfather]

6 minutes ago, Awitcher656 said:

My wife used to work at the clinic I go to about 4 years ago so we know a lot of people there, and I've known my doctor for probably 5 years. If I show him good information I think he will take the time to look at it. Getting an appointment is difficult because he is usually booked two weeks out. I wouldn't see anybody else at that office, it would be a waste of time.

Great.  I assume you might discuss with your wife what might be the best approach.  Needless to say, a lot of doctors don't like patients doing their jobs for them, even when that's warranted.

[jon019]

12 minutes ago, Awitcher656 said:

Does the caffeine keep you awake after the hit is over? That's what I'm worried about if I'm slamming caffeine at 2 in the morning. As it is right now I can usually fall sleep when it starts to come down. I just have to ride the devil for an hour or two first. Sucks, but at least I can sleep after.

Tis a question of adaptation...eventually got to the point where I could drink a caffeine beverage right before bed and fall asleep no problem....but didn't need to. We are all different so maybe keep a journal and look for a pattern.... It's rarely spoken about now but I remember in the 80's reading an article in National Headache Foundation newsletter advising Doctors that "clusterheadache patients tend to present with a journal/diary of their headache experience"...it was a diagnostic tool...imagine that. We tend to be detail oriented/obsessive/compulsive perhaps? Now the info in the journal is considered more important......

And re "riding the devil"...with O2... the ride is OVER much quicker  

[spiny]

I have no problem getting back to sleep. Most probably don't. I recall one member saying that they could not.

Actually, out of cycle, I will have caffeine about 6 or 8 pm. Just don't want a rogue hit at midnight due to barometric pressure drops. For me, they will come.

With caffeine and O2, the pain is gone in 10 minutes most nights in cycle. Then it is back to sleep till the next one. I also spend many nights sleeping in the recliner. Head above my heart. It helps. I wake sooner when hit too.