Leaderboard

You need to get a solid diagnosis. You provider is just throwing stuff against the wall to see what sticks. Indomethicin is used to support the diagnosis of hemicranium continum as it does not help clusters as a general rule. O2 is very helpful for folks with classic episodic cluster headaches. A provider reluctant to prescribe in the face of a cluster diagnosis has no clue what they are treating or how to manage cluster headaches. Oral triptans are useless to address cluster headaches. Subq or nasal triptans can be very helpful to alleviate acute pain but you run a risk of rebound headaches. Once you have an accurate diagnosis you can develop a treatment strategy.

Scouts honor! Thank you for the advice!

only when I take the additional 240mg"s of the verap. makes it tough to work out, and mostly drained of energy. Like I said when the D3 regemine kicks in and I drop the extra verap, my energy levels go back to normal. Also fatigue is always a problem in a cycle for me due to the stress. But as soon as I'm pain free, I'm good to go.

.....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!

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). 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.)

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, 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

We will most likely be heading to the east coast sometime in the next three years. It will probably not be Atlanta though.