In my first cycle -- looking for guidance regarding oxygen

[Newbie]

Hi,

 

I am a 29 year old woman a little more than a month into my first cluster cycle. Pretty scared, to be honest. 

I (kind of) just got an official diagnosis yesterday. I went to a headache clinic, and when I gave the resident my copious records I have kept this month, she immediately diagnosed as clusters. However, when her attending came to confirm, he said he wasn't comfortable officially diagnosing cluster headaches because I am a woman in her 20s (and apparently the more common demographic is male smokers in their 50s). He is calling it "severe migraines with many cluster like features", but allowing me to be treated as if it's clusters -- verapamil/injectable sumatriptan. However, without an official diagnosis the ONE thing I can't get is a prescription for oxygen -- the resident did her best, bless her to find a a way around it but there's no way to get the prescription without the diagnosis apparently, even just paying out of pocket. Unfortunately, it's the also the ONE thing I have found that really breaks up the attacks -- I've gone to the ER twice now for these and it does wonders. 

 

Has anyone here had luck sourcing oxygen a different way? I've seen oblique references to welders in articles and forums.  Or, is there a doctor you know who is free with their oxygen prescriptions? I'd appreciate any guidance. 

[CHfather]

https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

Such crazy crap they put people through! "It looks like CH, but because you're such and such, I won't diagnose it as CH."  The idea that to have CH you have to be a man, older, and a smoker, is nutso thinking from many years ago!  The reason women have been told they don't have CH is because women aren't diagnosed with CH because "women don't get CH." 

Here's another file you might look at for an overview: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   Although the heading says "non-busting information," there is actually a summary at the end about busting that you should look at.

Regarding your Imitrex, be sure to look at this.  You don't need the full 6mg (if that's what your injector contains) to stop an attack. https://clusterbusters.org/forums/topic/2446-extending-imitrex/

[kat_92]

@Newbie hey welcome to the forum. I am a 28 year old female with chronic cluster headaches. Never smoked a day in my life. Doctors don’t really know everything huh? My headaches are pretty mild considering how bad these can get. Mild headaches year round with random ramp ups that can get pretty severe. You have come to the right place! Don’t be scared. Take your emotions and channel them into fighting it. Don’t get defeated. 

Kat

[spiny]

Hey there!! Welcome too!

Do you want a pretty much sure fire test? It will give you a Cluster - Nitroglycerin. Mr 'I'm the Doctor' needs to check his lack of knowledge. He can give you a tab of Nitro and be standing by with the O2 when you lose your $hit from the pain!! JERK. Wonder if he even knows that????

I too am female. I went to my current Neuro and he tried the same mess. "Must be migraines since women don't get Clusters.' Really? I took my husband the next visit in a week and he glared at the man and said " I want my wife back. She is in hell from 8pm every night till 6am every morning and I want my wife back!' That got his attention. And we get along very well now. I have had them since I was about 22. Almost 50 years, so yes, you can live with this mess. 

So, either get his attention or get a new doctor. You need O2. If you said it worked for you and then he denied you, what kind of 'healer' is that person? Not a very good one. 

We can get you set up with welding O2. Well, tell you how to do it. But, if your insurance will pay, they should have to pay, not you due to an idiot at the helm. 

When do you return to him?

Hugs and hang in there!!  

[Newbie]

Thanks, everybody. I have no intention of letting this halt my life.  And there is strange solidarity in knowing I am not the only young woman old man doctors are just not listening to. 

@CHfather thanks for the links. These are a great place to start. Gonna get a handle on this.

[jon019]

hi...welcome...

...not necessarily to defend "old man doctors", but i am part of that phrase and i feel like pointing out that MIS-diagnosing young/female clusterheads is just a quick and easy out for them on a LONG  list of reasons for missed diagnoses ....all ages, genders and types of docs. few are trained/ know/learn squat about CH. i present as a classic case of CH...both symptom and stereotype.... and still went undiagnosed for years...most of us, sadly, have the same story (i think it's an avg of 3-5 yrs).....

...be your own best advocate, if you can't find the right ha doc, at least find a doc  who is open to learning ...if need be, from you!

.....we can help..

best

jonathan

.

[Newbie]

@jon019

Thank you! Yes, obviously my frustration is seeping through here. I would obviously love if this was a misdiagnosis! But I hope I'll learn enough here to be a better advocate for myself, and I appreciate everyone's help. 

[jon019]

...we understand frustration.....

 

[spiny]

jon - 'Please work. please work!!! Wait, how can you work when I can't get you??????'

Perfect!!!