Oxygen merely delaying attacks?

[July_guy]

Hi everyone! After dealing with episodic CH for about ten years, I finally have an oxygen hookup and was able to use it successfully to abort an attack two nights ago. Tonight, however, I found that the oxygen worked in aborting my attack, but that I would wake up 2 hours later with a new headache. I had 3 in total last night. I'm usually a one-headache a night guy, so it seems like the oxygen is merely postponing the headache, rather than truly aborting it. Anyone else had this experience? Am I doing the oxygen wrong?

For getting rid of headaches, Sumatriptan 100 mg seems to be the only reliable option this summer, but I'm worried about overusing. Also currently taking 320 mg verapamil each day. Thanks for any and all advice!
 

 

[CHfather]

The general advice about O2 is to keep inhaling it even after an attack has been aborted, 5 minutes longer, or more. That can help prevent or minimize subsequent attacks.

It's a bit surprising that a sumatriptan tablet is helping you, since many people find that tablets don't work fast enough.  Nasal spray or injectable are more effective. You can split the 6mg injections so you get three aborts from them, which reduces the overuse concern and of course makes those expensive injections a little more affordable.

Regarding the verapamil, that's a relatively low dose, and you should be using the immediate release kind, not the extended release kind (can't tell from your message which you are taking).  The vitamin D3 regimen is a better and safer preventive than verap.  You can read about that, and some other information and tips, in this file. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

[Tim Hogge]

Make sure you're hydrating.  O2 works best when you're well hydrated and electrolytes levels are good.  It's hard to get water in during a episode but you need it to get it in.  What you do between attacks is included sleep positioning. Maybe try elevating your head positioning (like when your sick) to reduce blood pressure and increase circulation.  

[jon019]

.....don't give up on the O2....when episodic there would be occasional cycles where i would get the wakeups like that. i suspect it was due to an inflammation/allergy that was "firing" things up....and that my vitamin D level was below optimal. get your levels checked and try the D3 regimen. Diphenhydramine (Benadryl) may be helpful, with added benefit of drowsiness at an appropriate time...

[jon019]

...thank you @Tim Hogge  

On 7/23/2022 at 9:07 AM, Tim Hogge said:

Make sure you're hydrating. 

...ALWAYS worth mentioning (and rarely is), as dehydration is endemic and a facilitator of all kinds of bad issues. at one time in clusterville there was even enthusiasm for a "water therapy" treatment of CH. Worked for some! but not well enough for enough clusterheads to gain much traction. worth a try and hydration is important for everything anyway......

 

Edited July 24, 2022 by jon019

[July_guy]

Thanks, everyone. You've given me a lot to go on (and important reassurances). @CHfather that resource is excellent--thanks a ton for compiling.

I was skimping in part on the oxygen because I only have an E tank...my oxygen provider doesn't have any larger tanks available currently, which may mean that I need to find a new provider. I'm also beginning to prep for the D3 regimen. How important is it that I get a baseline for 25(OH)D before starting? Is there a specific blood test I ask for that will give me that value? Thanks again!

[jon019]

....before switching an O2 provider that is at least somewhat cool with a CH patient, ask for more tanks. i kept 6 e's  on hand at all times for a decade+ before my provider (Lincare) finally got m-60's.....yee-haw! also a good opportunity to educate them on the needs of a clusterhead....paying it forward for the next 'head that wanders in. if at all possible, pick up and deliver your own tanks.....they loved that even WAY before the current labor/supply shortage. a personal relationship with shop mgr and backroom tech goes a long way too....then you are a person instead of a file number. delivery drivers can be your best friend, treat 'em like the gold they are....sometimes they can find you a tank or 2 when "none exist"....or even a few extra.....

[spiny]

You can request a D3 blood test yourself, no doctor needed. I think the one here is Lab Corp. You just call and make the appointment and they will tell you how much it costs.

You can begin the regimen without a test too. Then get tested a month in. You want to make sure that your D is above 80ng/ml. And check your calcium and PTH too. The regimen is easy to do and really works!! 

[CHfather]

Note that if you do get a larger tank, you will also need a different regulator.  The smaller tanks, such as Es, use one type, but the larger M and H tanks have a different type.  Of course, your supplier should know this, but it would be easy to mistakenly say "I already have a regulator."  As you read in that long post, many people find that a higher-flow regulator works better for them, and that's something you'd want to get on your own.

If your prescription was written in the standard way, it will call for something like up to 15 minutes of "oxygen therapy" at 15lpm.  Your supplier can quickly calculate how fast you would go through a tank (15 liters per minute for 15 minutes = 225 liters, and an e tank holds about 680 liters, so that's three aborts) (you might actually get more aborts than that, but according to the prescription, that's what you would get), and that might make them more understanding about giving you something that matches the prescription they were given.  Seems like it might even be a requirement that they do so.  My two experiences talking with a supplier both turned out good once they understood the actual needs of a person with CH, in contrast to the e tank/cannula they are supplying to most of their patients, who are people with COPD conditions. 

[spiny]

I agree CHF. They do have to follow the script from the doctor. They just get stuck on 'this is what we do' for COPD patients, not realizing the different needs of the Cluster patient. Once they 'get it' I too have found them to be very helpful. 

[jon019]

...spiny is entirely right that O2 suppliers must follow the script, BUT, it's important to note that YOU don't have to. get the script (hardest part) then crank that regulator (you bought your own on amazon to save on leasing, right?) to whatever works....key being reservoir bag full enough for full breath each time. for many that's 15-25+ lpm...some even higher. no one knows or cares what that is, find the flow that works for you. some find that starting high then lowering as the hit subsides an effective strategy and saves O2.....

...one of the saddest phrases in clusterville is "oxygen doesn't work for me"...when, in fact, it doesn't work at that pathetic flow....turn that baby up!! and experiment with various breathing techniques too. hyperventilation most frequently reported successful, but also   slow breathe and breathe and hold...or a combo of all, can be the bliss.....

Edited July 25, 2022 by jon019