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nutty2chat2003
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ER experience - please share
« on: Jul 25th, 2004, 10:09am » |
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Last night I made my first trip ever to the ER for CH. I've had clusters for nearly 20 years and never thought that our second rate (AT BEST) hospital would be able to help.
I had decided to try this cycle med free, until I got hit with two 10s in the middle of my sons 15th birthday party. I'm afraid I really freaked his friends. Needless to say, I was no longer prepared to deal without something until I could get an appointment with a nuero.
Here's my experience:
I was about 45 mins in when we got there. The ER was packed and everyone was talking really loud with tv's going in every corner. The lights were bright and the girl checking me in at the desk kept asking me if this was a "normal migraine". I kept telling her it was a "cluster" and they're different. Finally in the midst of her frustration and mine, she asked me if it could possibly be anything other than a cluster. DEFINITELY NOT! Everyone in the ER was looking at me like I was a complete FREAK wacked out on crack or something. (might have been the crying, moaning, pacing and rocking??)
Then they sent me to a place called Fast Trac in the basement of the hospital. That was a good thing because I got my own room where I could pace in quiet and dark. By the time the dr. came in, I was down at about a 3. He flipped on the light and said "headache, huh?" I had this sudden urge to deck him in the side of head. I resisted.
"Do you know anything about Clusters?", I asked him. I think this insulted him. He was gonna send me home with 10 lortab 7.5. What a joke. I did talk him into starting a prednisone taper. But I had to promise to see a dr. this week. Which in all likelyhood will not happen. I don't currently have a nuero and in my experience around here it takes about 4-6 weeks to get an appt.
I was able to sleep through the night after a lortab and 60 mg of prednisone. But this cycle has been periodically skipping days for no apparent reason. Don't know if it was the meds or not. But I have had pretty good experience with prednisone in all cycles except the last one I had.
Please share ER experiences. I only live about 5 minutes away from the hospital, so if there is a better way to handle this, maybe I might have better experience if I ever get desperate enough in future.
btw, please don't start throwing med suggestions unless they directly pertain to the ER. I am already looking into o2 for home use and have already tried alot of other meds.
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Redd
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Re: ER experience - please share
« Reply #1 on: Jul 25th, 2004, 10:49am » |
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My last ER experience waas some 7 or 8 years ago, before I was correctly diagnosed. I was a non-traditionl college student, and of course it was spring, about 4 days prior to spring finals.
I was experienceing the frequent milder attacks for about 2 weeks, but of course I just passed them off as the "migrains" I had been diagnosed with years earlier. But that day I was sitting in one of the study rooms with a group from my class as we studied for our final on personality theory and I got hit hard. I tried to get out of my chair and I was so aggitated and shaky I tipped over and the chair and I went right over. Rob, who was a giant of a guy picked me up and litterally carried me to the student health center all the way across campus. They pretty much told him take me over to the ER, and I assume they just weren't prepared to treat what looked like a case of insanity...
The ER was directly across the street from the student health center, so it was a quick trip, and they were slow and they got me to a room right away. Once in there however, I was barraged with accusations of just wanting drugs. I screamed at them to review my charts. I hadn't been in there for these HA's in over a year! I was just begging them to make it stop, while thrashing around on the gourney. Telling them a shot of imitrex was all I needed. (I had used that in the past when I was still married and still had insurance.) I was asked if I had taken any other drugs, asked if I was smoking crack, they scanned my arms for track marks. By the time all of this took place, and at least three different people came in to question me before they would treat me the attack was over and I was spent. I never did recieve treatment of any kind. They tried to bill me for the visit and I made an appointment with the billing office and I told them to have my charts ready as well as the records for the ER that day. I argued, (with the help of the UW student legal aid office Attorney) for the bill to be wiped clean, and got that taken care of. But it was then and there that I refused to ever go to the ER again with these.
Sorry no advice I can give you for this, unless you have a script on you that states what meds you take, I doubt they would even give you O2 at the rate needed, or a shot of trex if you held a gun to your own head.
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IndianaJohn
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Re: ER experience - please share
« Reply #2 on: Jul 25th, 2004, 10:52am » |
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The ER in my town is a joke too. I would never trust them to treat me for CH for fear of getting the same treatment described above. I found that the best thing to do is have your doctor issue a script telling them exactly what to do. That way you can give the ER the script and have them call the doc if they have questions.
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Did my brains fall out or is this headache over?
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vig
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Re: ER experience - please share
« Reply #3 on: Jul 25th, 2004, 10:55am » |
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Oh dear,
My solitary ER experience went this way:
I had the flu at the time and went in for the headache. (I was still undiagnosed and didn't know what I had either.) Naturally they thought I had meningitis, so it was time for a spinal tap! How about having one of those in the middle of an attack!!!!
(not only that, but they messed up and I was peeing blood, sorry.)
EDUCATION!
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Redd
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Re: ER experience - please share
« Reply #5 on: Jul 25th, 2004, 12:02pm » |
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It's not a bad form Don, however by the time one can get that filled out, and off the the ER the attack can well be over, and from my (horrible) experiences in the past, I doubt alot of ER folks would take that too seriously. Before my last ER experience, I recall vividly the time my ex hubby packed both babies in the car and rushed me there in the middle of the night. With two babies in tow he was screaming at them to just make the pain go away, and I was already over the attack by the time they shot my ass full of demerol. I guess his insistance...
"..would I be bringing my children down here to see their mother in such pain if I was here to get her a quick fix?"
...finally got their attention.
I keep an emergency letter from my specialist with me with her signature, on Clinic letterhead in my purse. I think that holds a little more weight that a form anyone can print off the web? Just a suggestion.
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Axel
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Re: ER experience - please share
« Reply #6 on: Jul 25th, 2004, 12:29pm » |
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...Sorry to say it has never been any different for me !Got to sit in the waiting room ,moaning ,dancing, sweating ,face half disfigured...so of course they look at me and asume it's either a mental case or a druggy....and by the time the doc comes , it's faded down! then you're stuck there for another 3hrs waiting for those tests results...that of course come back negative...! So did it twice and will never go again....unless i really have to ! Had CH over 15yrs and had seen my father getting Hits all his life and he also had unsuccessfull attempts with doctors,so just assumed it was a family curse...until I met in may2004 for the first time a neuro ,he was reffered by a customer, i was having an infernal cycle and cancelling a lot of apts. at work ,and by chance her husband was a neuro so got in fast , and yes the OXYGEN IS AMAZING!!! for the first time i can stop the beast from sucking my energy ..to finally have something that actually works is a true revelation ! I was really not convinced,i hadn't found this site yet and wasn't informed that it existed...he also put me on imtrex nasal/inject ,that works for me,but with some side effects, and also verapamil also side effects . So of course my most favorite treatment ,and so far the only one with out any side effects!!! So I really hope this can work for you...PFDaN (((VIBES)))....Axel.
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| « Last Edit: Jul 25th, 2004, 12:31pm by Axel » |
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Seiji
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Re: ER experience - please share
« Reply #7 on: Jul 25th, 2004, 1:15pm » |
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i have an advantage being in the medical field. I go in told them what i wanted of course i know lots of the doc's and nurses i have been taking toradol im injections they work great for me and i have no hang over with it. the E.R. are so use to seeing people looking for hard core drugs ask for toradol it is non narcotic so they have no problems with it for pain.
I have in the past found nurses not to coop i have asked for another nurse several times.
next time tell them what is wrong and ask for toradol im.
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Bob_Johnson
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Re: ER experience - please share
« Reply #8 on: Jul 25th, 2004, 4:43pm » |
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Over the years, there have been many posts reporting an experience likes yours. There is broad agreement that the ER is NOT the place to go for cluster.
ER medicine is a specialty in which physicians are going to get training--primarily--on those conditions which are most often to present themselves. Cluster is not one of them; we are a "minority" population.
One of the leading headache docs in the U.S. had commented that 40% of docs do not receive good education/training in headache. We have too many folks who complain that even their neurologists are not treating them well.
If you have been diagnosed with cluster, then approach your primary care doc and ask for specific abortive meds which you have found work for you. Ask for enough to get you through to your appt with the neurologist. I think most docs would help bridge this waiting time.
If you don't have much experience with abortives, look under "medication survey" (left), print it out and take with you to your primary care doc.
You may also ask for a sample of Zyprexa, 5mg. It aborts my clusters in 20-min, 100% effective. If you have to buy it, the price is reasonable, given the dosing needed.
But the bottom line: develop alternatives to the ER.
When you are ready to talk about our experience with meds, please ask.
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Bob Johnson
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Re: ER experience - please share
« Reply #9 on: Jul 26th, 2004, 11:35pm » |
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I probably won't be much help here. I've been to the ER and hosptals so many times ... they all know me. I tell them what I need and they give it to me. It makes it quicker sometimes to call my neuro right before I go and tell him. He can call ahead and have orders ready. That comes in handy just incase there's a new doc that doesn't know me or doesn't know clusters. BTW, I've been to a few different hospitals and I know which one to stick to now.
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nutty2chat2003
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Re: ER experience - please share
« Reply #10 on: Jul 28th, 2004, 6:06am » |
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Unsolved,
If you have a nuero, what do they do for in the ER? I would be interested to know what happens during a successful trip to the ER.
Thanks,
Angela
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Not4Hire
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Re: ER experience - please share
« Reply #11 on: Jul 28th, 2004, 7:55am » |
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on Jul 25th, 2004, 11:38am, don wrote:
Don, you have no idea how many people you may be helping with this information...
and Redd said:
Quote:| It's not a bad form Don, however by the time one can get that filled out, and off the the ER the attack can well be over,... |
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The idea here is to fill out the form IN ADVANCE and have your doctor do the same IN ADVANCE... so that when you DO go to the ER, you have some documentation of your condition.
Mostly, though, an ER trip will just drain your wallet aand add to an already BAD situation. The only thing GOOD I ever had happen was a podunk town (Deadwood, S.Dakota) ER doctor actually diagnosed my CH and gave me OXYGEN!!!
For that I am eternally grateful.....
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Re: ER experience - please share
« Reply #12 on: Jul 28th, 2004, 10:31am » |
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I very rarely go to the ER for 'rescue' medications. I do occassional go just to get an injection of Decadron and a script for a steriod taper so I can get a little break from the headaches without being admitted.
The usual trip to the ER is because I've had a very bad few days in a row and I feel like i'm at my 'breaking point'. At this time, I'm ready for Solu Medrol infusions and DHE infusions. (This usually takes 4 days or so).
I call my neuro BEFORE I go and tell him "I need to be in the hospital !". He calls the ER docs to let them know i'm on my way so they'll already know why i'm coming and what I want (Not narcotics !). If this is done before the registration desks closes, I don't even have to go through the ER, I go straight to admitting, up to my room, and the doctors' orders are already there. (This way is MUCH faster and easier)
Unsolved
PS. My neuro has mentioned that he would / could write out orders for me to take to the ER and give to the ER docs or triage nurse ... but you'd still have to wait your turn in the ER (which really sucks).
Really pisses me off when I have to wait on some bum that is smiling and laughing with a possible sprained ankle ! The ones in the most serious trouble (life threatening) and the ones in the most pain should go FIRST !
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kimh
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Re: ER experience - please share
« Reply #13 on: Jul 28th, 2004, 12:40pm » |
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All of these stories are familiar to most if not all of us at one time or another. After 30 years, i've certainly accumulated my fair share of horror stories at the hands of the ER. It is insult to injury and continues to be that way.
Even though experience has shown that going to the ER is moot, at those peak cycle kip 10s rational thought process muddles and pales in comparison to the quest to end the pain.
Wouldn't it be great if the ER entity was as learned at CH as they are at broken bones and blood.... 
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don
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Re: ER experience - please share
« Reply #14 on: Jul 28th, 2004, 9:52pm » |
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My last recent trip to the ER went like this.
Doc asked for my symptoms, gave it to him.
He immediately ordered the ER nurse to administer oxygen with a non breather at a flow rate of 15.
An imitrex injection and 40 mg of prednisone.
If no relief then a shot of demerol if I chose to.
Left the ER with an Rx for 20 injections of imitrex.
A CH educated ER doc. I was amazed and the ER nurse baffled. She had never heard of this type of treatment for a bad "migraine". LMAO
I gave her a quick education in CH and treatment that she willingly soaked up.
The next CH sufferer through there will get quick and appropriate treatment from both the Doc and a now educated ER nurse. Good Stuff.
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| « Last Edit: Jul 28th, 2004, 9:54pm by don » |
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Tim_Z
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Re: ER experience - please share
« Reply #15 on: Jul 28th, 2004, 10:02pm » |
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I've had a few ER trips and when I go my HA is there for the duration O2 doesn't work for me, we tried. The last time I went Imitrex didn't work either. They gave me a demerol hypo ( after they waited for 1 and 1/2 hours) all it did was dull the pain enough for me to sit still in a chair.
I'm not sure what I'll do on the next cycle because preventives don't work, none I've tried anyway. I got to keep looking.
My doctor is a nurse practitioner, he asks me what we should try. Although he would not put me on lithium.
I keep looking for ideas on the site for my next cycle. I'm not sure what to do the next time. If anybody has any suggestions let me know thanks.
Tim
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don
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Re: ER experience - please share
« Reply #16 on: Aug 1st, 2004, 5:32pm » |
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Quote:| some bum that is smiling and laughing with a possible sprained ankle ! The ones in the most serious trouble (life threatening) and the ones in the most pain should go FIRST ! |
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There lies the rub.
If I were waiting on a bum with a sprained ankle then that would put him in a life threatening situation. 
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