Risk / Dangers of Oxygen?

[Exigeous]

I'm seeing a doctor in a few days so I'm gearing up for the oxygen fight.  I may even go get a welding tank tomorrow as I can't handle another 2-4 hour screaming session when the next one hits (I've had 24 hours free so I know it's coming any hour now...)  After telling my family about how hard it is to get a doctor to prescribe O2 they have it in their heads that there must be something wrong with it and don't want me to get a tank unless/until a doctor agrees.  I find this beyond absurd, we're talking about fucking oxygen here not a narcotic I can get addicted to!

So that's the question - is there any real risk or danger?  I read about oxygen toxicity but that seems really rare and really easy to prevent.  Seems as easy as setting a timer (hell I can even do that easily with Alexa/Echo when I'm screaming) to make sure you don't use it longer than 15 minutes or so (correct?) - so even if it did nothing to help how could it possibly hurt?  How could it possibly do anything but save me hours of agony?

(BTW I don't mean to be spamming the board, just figured this subject might make it easier for folks in the future)

[spiny]

Well, if it is not safe, a lot of us are in trouble!   Not covered by Medicare and often not Medicaid either. Other companies will attempt to deny it on occasion too. It is the expense. 

I believe that O2 toxicity was observed in ICU patients who were on O2 24/7. Big difference. So, you are not using it 24/7 and you do not have COPD that limits you. Let them know that primarily it is an issue of expense so far as insurance is concerned. The doctor will tell you it is safe, just hard to get approved! If it weren't safe, why would it be the primary abortive we use? Which is approved by regulatory agencies for this use. Which is the primary abortive according to the medical community. 

Sometimes, some people need 20 to 30 minutes until they get 'their' method down pat. Then it is down to 5-10 minutes.Our fighter pilots use it when they fly and that is over 15 minutes continuous use.

And here is some food for thought. Premature infants who spent a lot of time in an incubator with super pure O2 went blind. Well, back in the 80's I think it was, they had a shortage of the super pure form for these babies. They had to use the 'regular' O2 used by the rest of the hospital. And the result? Those babies did not lose their sight. So, lesson learned there and eye sight of future infants was saved.    

You are not 'spamming' the board!

[ThatHurtsMyHead]

Exigeous,

Correct, as Spiny mentions.  O2 toxicity is only a risk at higher pressure than sea level PPO (partial pressure of oxygen) - SCUBA Diving.  The only real risk at sea level or lower pressures is alveoli collapse in your lungs,  (Those are the sacks that transfer Oxygen to your bloodstream and extract CO2 from your blood) but that's only a risk if staying on O2 for very long periods of time.  This is due to Nitrogen washout.  Nitrogen washout in the lungs can be prevented by simply taking a breath of regular air every 20 to 30 minutes when breathing 100% O2.  That adds enough Nitrogen back to your lungs for proper function for a very long time.  

Definitely O2 is the #1 abortive.  There's no side effects and it's much safer than ANYTHING  the doc can give you.

Cheers,
J

[ThatHurtsMyHead]

Exigeous,

Oh and don't forget to stay on the O2 for 5 mins or so after the attack stops.  That normally prevents the attack from coming right back.

Cheers,

J

[Exigeous]

Thank you to everyone for your thoughts here - I'm the type that needs to know as much as I can about something, for me the scariest thing a doctor can say is "I dunno", and that's certainly what I'm getting now.  As for my first appt this week it's with a physician's assistant for a neurologist - not necessarily someone that deals with clusters but it's where I have to at least start.

My immediate goal is to get O2 as fast as I possibly can.  More questions will come soon I'm sure...

~X

[CHfather]

It's not uncommon that a PA is more helpful than the doc.  This is the original O2 study, fully consistent with medical research standards: https://jamanetwork.com/journals/jama/fullarticle/185035  It wouldn't hurt to print it out and bring it with you. There is also some more recent research, less rigorous, showing that higher flows are better.  All doctors and PAs have some kind of app that gives them core information about a condition. They will all show that oxygen is the #1 abortive (usually triptans are also #1).  A commonly used app is UpToDate. You can ask the PA to look up CH.  An O2 prescription should read something like this (write it down and bring it with you, because a lot of med professionals don't know how to write it): "Oxygen therapy for Cluster Headache: 12-15lpm up to 15 minutes with non-rebreather mask."  There are abbreviations in there when it's formally written, but that's the content.

You might also look here for a little more info about the other pharma things you might want. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The linked-to article under the heading Pharma is clear and helpful (and also states that O2 is the #1 abortive -- I guess maybe you'd want to print that and bring it with you, too).

11 hours ago, Brain on fire said:

If it turns out you have a different headache disorder (e.g. a hemicrania) oxygen won't work for it. @CHfather need your input

So, sometime people have a CH "lookalike" that is most commonly some form of hemicrania.  You can look that up -- hemicrania continua, paroxysmal hemicrania, any of them.  As BOF says, oxygen is generally not effective against hemicranias.  There is, however, a pharma drug, Indomethacin, that is effective.  Some medical writers have said that if there's any doubt about whether a patient has CH or a hemicrania, they should do a course of Indo at the beginning of treatment.  (Indo is very hard on the gut, for most people.)

[81007]

Just get an oximeter. It will tell you if get too much oxygen.

https://www.walmart.com/ip/Zacurate-Fingertip-Pulse-Oximeter-Blood-Oxygen-Saturation-Monitor-with-batteries-and-lanyard-included-Navy-Blue/757187983?wmlspartner=wlpa&selectedSellerId=0&adid=22222222227096424698&wl0=&wl1=g&wl2=c&wl3=212822171008&wl4=pla-408475254437&wl5=9029047&wl6=&wl7=&wl8=&wl9=pla&wl10=8175035&wl11=online&wl12=757187983&veh=sem&gclid=EAIaIQobChMIvqao4vyf5QIVRr7ACh1bzw70EAQYASABEgLrc_D_BwE

[jon019]

.....for me the scariest thing a doctor can say is "I dunno", and that's certainly what I'm getting now......

au contraire mon frere.....the scariest is "we gotta stop dickin' around with this!"....actual quote to me, and it wasn't about CH. gimme a doc who knows his/her limits any day over some version of "I'm God...lissen up!". Now then, what ya wanna hear next is : 'but we're gonna figure it out".....find ona them.....

My immediate goal is to get O2 as fast as I possibly can.  More questions will come soon I'm sure...

...and we await a report on the first time an O2 abort drains away the pain like water...and it will.....and you find yourself in tears of gratitude, relief, and God knows what other feelings.....cuz we have been there............

best

jonathan (3 decade O2 huffer.....)

P.S. welcome to the board!

[Exigeous]

You guys amaze me - but don't surprise me at all.  When this first hit me I'd truly never felt so alone and helpless against it's fury.  I had what I'm sure are the same thoughts as everyone else here, no one has ever felt this level of pain.  No one.  No one will understand.  They will look at me like the asshole doctor at the ER did, clearly thinking I was faking or exaggerating in some way to get pain meds, etc. (I could have absolutely decked him when he said "well you'll just have to deal with it I guess").  While I wouldn't wish this on anyone knowing there are others who do understand and WANT to help is amazing.

Thanks for the links to the O2 study, already printed.  I'll print everything CHFather posted so I don't forget any of it (seriously, amazing post).

As for a quick update on me - I haven't had an attack in 3.5 days, the longest before was 2.5 - they've been getting further and further spaced since they started with the duration of "level 10" screaming pain shortening each time (last was right at an hour, first attack 10 days ago was 5+ hours of screaming).  I did start the D3 regimen right after my last attack so I'm not sure if the D3 regimen is 'working' or if they are just naturally spacing apart.  Is that common? Does it mean anything - or just is what it is?  Tomorrow morning is the PA at the neurologist so I'm just hopeful I don't have an attack tonight and they give me O2 without a fight.

Again thanks so much for all your time and wisdom, had to say what it means.

~Ross

[spiny]

CHF has all the great links for anyone here. He is great at providing that input to our members.  

The D3 can begin to work quickly for some. Like seeing results in the first week. Others can expect to have a reduction in about two weeks from what I have read here. The loading really gets your D up quick and that is what many need. It is known for stopping Ch for some and reducing the max pain level and slowing the ramp up for others. Most will take either with a big smile. Pain Free is the best of course. 

Take all your papers and push for your O2 even if you feel better now. Then you will be prepared if you need it again!  

ATB! 

[Exigeous]

16 hours ago, Brain on fire said:

Wow! My oxygen Rx 20lpm STAT with non-rebreather mask 20mins as needed for cluster headaches. My primary care doc rocks! If says 'I don't know." I sit in room with while it gets looks up it. If not satisfied with what is found online "I'm going to makes some calls, be right back." Not once have I left that office without answers. No PAs, no nurse practioners just the nurse for vitals & I always see my doc. 1st appointment, spent 2 hours with me listening. That is the beauty of a small practice & a darned good doc!

Holy shit are you lucky - if only you were in north Georgia and I could go there too!  I did see a primary care today who wouldn't give me oxygen (as I am seeing a neurologist tomorrow and she wanted to wait) but she did give me 8mg Zofram (for vomiting), and 100 mg sumitriptan (oral) and indomethacin 50 mg (wrote a new post about them).  So we'll see if that can keep me from having an attack tonight (last attack was 48 hours and weaker than others, last screaming level 10 was 72 hours).  I definitely am still having shadows, that range up to a level 5 for a few moments then usually come and go for a few minutes then nothing.

Thanks again for all you guys are sharing, it's amazing how much information helps isn't it?

-Ross

[spiny]

Yes. Information is power over the beast we live with.  

[ThatHurtsMyHead]

Exiegous,

If you haven't gotten that script for sumatriptan  filled yet, don't bother.  Oral sumatriptan is pretty useless for our condition.  You need the 6mg auto injectors.  I was given the oral stuff wayyyyy back, and would just throw it up after 10 minutes of an attack. Also, it takes too long to get in your bloodstream to help us at all.  The auto injectors usually work within 3 to 5 minutes.  (I don't like the stuff, but it can be a life saver when nothing else is available).

Cheers,

J