Hello...a vent and a plea...........

...umm...we often tell new folks to the forum that it's perfectly ok to come here just to vent (we all been there and done that) and that is very good advice...as sometimes if ya can just get it out...nothing else is necessary..

Folks who have been here a while tend not to very often...I suspect because it is sufficient to know that you CAN...but this has been bothering me and I just gotta get it out...I apologize for the length as I do not have time to write a short accounting....and it's also my nature....

Way back in February I found the need to go to the ER. An interesting experience in bureaucratic medicine as there was not a hint of concern in the intake nurses face/voice/attitude as I wobbled in front of her and struggled to find and convey all the required information...and copay! I considered intentionally falling on the floor... but thought that was probably gonna happen anyway... so demurred.....

Anyway...when finally allowed into the inner sanctum (AKA the SECOND waiting room)... as the first was packed...I witnessed something that twisted my guts and challenged my reticence. First I heard it...the unmistakable sounds of a cluster hit...and I knew it within 2 seconds. This may sound strange but I was compelled to alter my original seating choice so I could observe more closely....

There was a 30'ish woman thrashing on a gurney ...and beyond the sounds we all know so well...she exhibited every single symptom of a CH you can imagine. At either end of the gurney was a stoic EMT...each with a hint of desperation in their eyes as there was nothing they could do...and it was taking WAY TOO LONG for this woman to be seen.

I actually started to rise several times but stopped myself with the realization that: ER's are full of sick or crazy people...sometimes BOTH at the same time...and the LAST thing anyone in there is gonna listen to is one patient diagnosing another. Was actually in tears at this point and about to do I don't know what anyway.... when they took her into exam room...BIG SIGH!

She was only in there a few minutes when they wheeled her out...and into the FIRST waiting room...still in the midst of a hit! Obviously NO treatment...and I didn't know if even going to be admitted...

I was next...same room...I think a triage nurse....and my chance! Once I got out the litany of my own symptoms and there was a "pause" in the action...I said "you may find this odd or inappropriate and I will not say this more than once...but I GOTTA say...that woman in here with head pain has every symptom of CH...which I've had for over 30 years myself....and she needs 25 lpm of oxygen and an imitrex shot immediately!".Her response was crushing and told me everything.. she said: "it must be hard when you can relate to pain like that". Not one ounce of curiosity or questioning or even a reflective consideration......like that may be interesting.  I sunk back into my own problems with a heavy dose of guilt and frustration....and got admitted before her............

I can HEAR you shouting at your screen...but JON...you aint no damn doctor...you KNOW there are ailments that mimic CH...you may be an expert CH "patient"... but you really didn't KNOW what was going on! ALL TRUE...but I KNOW a CH hit when I see one...and they normally slap a damn O2 mask on anyone with a boo-boo in the ER.... and they didn't even do that!!!!!!

To wrap up this rant...besides the fact I was desperately wishing BARB was with me...because I have no doubt she woulda got some action....what if anything could I have done...and HOW can we get the msg across to ER staff on recognizing classic CH symptoms? I KNOW it's a rare disease...but come on...the symptoms are so blatant and multiple that they should be able to enter into a database to narrow down the possibilities within a couple minutes....NO????

Best

Thanks for listening

Jon

Too many stories here, about trips to the ER for CH's - and the results.......

Many years ago, my neuro wrote a letter for me to take to the hospital and have it put into their system - in case I ever came in acting weird. It provided a brief outline of what my symptoms were and how to treat my CH's. It clearly explained that I was not drug seeking and that 25lpm O2 and a Triptan would work well for me. Never had to use it, but I thought that it was good idea. Thought it might be smart to carry that letter when traveling......

There was a day that I woke up in an ambulance on the way to a different ER after crashing my mountain bike. I was just starting to almost feel human when they saw my BP starting to skyrocket - CH was coming on fast. I was starting to look agitated.

My then 15 year old daughter, told the nurse that it was a Cluster Headache and I just needed a lot of O2 very fast. The nurse started to ignore her, until my daughter told her that my BP was about to go even higher when the pain reached full force. Long story short, hyper ventilating at 25 lpm brought the hit down in minutes and my BP went right back to normal.

Before I went home that night, two doctors and three nurses came into the ER for some Q&A about CH's. They just couldn't wrap their head around the miraculous O2 trick. They saw the pain, they saw my reaction.

All of them had heard of CH's, and one had even seen a hit before. But they were taught to use a nasal cannula at 7 lpm and Demerol. They asked very good questions and I had to chance to really explain the view from "our" side.

Virtually all of them were afraid of high flow O2 because of their training. I had to walk them through the fact that they were taught about the dangers of long term pure O2 - not for minutes!  It was like light bulb coming on.....

Since then, I go out of my way to educate more doctors and nurses about the basics of "our" world. By far, I find them to be very receptive when you articulate the pain reduction.

Invariably, the O2 part is met with:
"Do you know how bad that is for you?"

I respond with: "No, I don't. Help me understand why you feel that is bad."

Marc

yeah.  Us old-timers always tell newcomers forget about going to the ER for this exact reason.

  BUT...depending on how bad off you were at the time, I would have gone to her cubicle after her getting no help from anyone and yanked down the 02, (every ER has them on the wall) and cranked it up as far as it would go and given it to her.  Powers that be.. be damned.

02 wouldn't have hurt her no matter what her problem was but I know you were educated enough with CH to to know a cluster headache when you saw one.  Barb may have ranted and raved...I would have just quietly done what I knew was needed.

Marc wrote on Apr 1^st, 2016 at 5:06pm:

Invariably, the O2 part is met with: "Do you know how bad that is for you?" I respond with: "No, I don't. Help me understand why you feel that is bad."

I generally respond with "If you think it's so bad...feel free to stop breathing...."  But that's just me....

Marc wrote on Apr 1^st, 2016 at 5:06pm:

Invariably, the O2 part is met with: "Do you know how bad that is for you?"

I was once told by a nurse in hospital that oxygen is a dangerous drug and that they try to wean people off it as soon as possible. She was most confused when I agreed that their only success stories were those in the hospital mortuary.

After almost 15 years of being chronic, I actually own my life again, because of this site. I'm not about to shutdown any opportunity to teach people what "we" need and why we need it.

Sure, we've all heard the responses like:
"Oh, I had one of those too, and I had to sleep it off!" 

Don't lose your cool - invest the effort to bring them around with facts. 

That is why I never go to the E.R. Had a "two hour" attack Friday night. Wife was begging me to let her take me to the E.R. As always, I refused. By the time you get there & wait your turn, the attack is about to end anyway, plus I cannot let people see me that way.

I've witnessed people at the Neuro's office and have had attacks there while waiting my turn. Feel so bad for the folks knowing what it's like. At least at the Neuro they do something to help.

Naw Linda, I've calmed down (somewhat) but I would have gotten her on O2 and then got a doctor in there and probably been telling him what it was and what to do about it.

Bad part about ER is that MOST of the ER team just doesn't KNOW and they do need to be educated..

But the "few" times I've been in the hospital the last few years (a couple of procedures) the doctor as well as the "sleep doc" (can't spell that one) KNEW before we started what to do IF I got hit and there was NO argument about it. I've got my neuro's number handy and his reply to their phone calls has been, "Do what she tells you - she knows more about it than you do!"

I still like the story of the guy that grabbed the O2 and when the ER team raised heck with him -he pulled out a cigarette lighter and told them to back off. By the time the cops got there he was over the hit and one of the cop's brother was a CHer and told the ER bunch THEY needed to be sued and drove the guy home.

But all we can do is educate ONE doc at a time..  :-*

Great thread! Dealing with medical people can be so frustrating. In the ER they see so many different situations every day, along with a bunch of real drug seekers, and they tend to lump everyone together. Much of the time they don't have the time to process everything fully because they do have that waiting room that is packed full of other people with odd symptoms to deal with.

Educating them, while frustrating, is vital. If not for us for the next time we go in, then at least for the next clusterhead who desperately needs help.

jlc