Frustrating situation

[danawright65]

Hi everyone — really glad I found this group.

I just started a new cycle 9 days ago and the attacks have been way more frequent and intense than my usual pattern. I’m on verapamil, and I restarted Emgality when the cycle began, but I’m now 8 days out from the injection and still waiting for it to kick in.

My biggest issue has been oxygen. It should’ve been my lifesaver, but getting it has been a nightmare. My neurologist left the practice, the new one hasn’t responded in days, and my primary care isn’t helping either. I’ve been calling everywhere and still can’t get a script.

It feels like no one understands the urgency — they hear “headache” and think it’s no big deal.

What do you all do when you need O2 fast but the system drags its feet?

Any advice would mean a lot.

[Dallas Denny]

Welcome to the community @danawright65, but sorry you had the need to join us!

Unfortunately, when you have to deal with getting a (correct) script from a doc, and then deal with O2 suppliers, it can be difficult!!!

My solution in 2007 was thprocurement of a welding ox setup.....I paid $300 for a large ( 4 ft tall by 9 in diameter) cylinder, $50 for a welding ox regulator, and $25 for a clusterO2 mask from our sister site clusterheadache dot com.  And I pay $23 for a refill/exchange.

Now for the drawbacks.....cylinders this size are really heavy and difficult to move around, and you can't let the welding supplier know that you intend to breathe it.

Same O2....the only difference is that med ox tanks go thru a vacuum process prior to refill.  

Dallas Denny