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Brain on fire

Emergency room experiences anyone?

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Most of us have visited an ER because of a cluster headache, I thought it would be interesting to share some of our stories.

I went to the ER for my very first cluster headache. I'd been released 4 days prior (from another hospital) after my TBI & related inquiries. I had copies of my discharge paperwork in hand & my health buddy with me. He walked me in & dashed back out to park. This ER is like waiting in line for a return at Wal-Mart. You stand (I know!) in line far far away from the triage desk. I'm thinking my head is going to explode I'm fresh off a brain bleed & I don't think I can stand this or stand up for long. I rushed for the only wheelchair in sight, behind the triage desk & flung myself into it. Now I've done it, I broke in line. I see my health buddy making a bee line for me as quickly as the triage nurse was. She was accusatory in tone. 'Are you in pain?' I blurt head pain, acute subdural hemorrhage, subdural hematoma... I don't believe she heard the next line. Straight over for vitals.... But... A woman bursts through the ER doors, right past the line, straight to triage 'My mother chest pain!' I was politely wheeled into a corner where I sat for the next... Later my buddy told me it was 30 minutes. Triage nurse dashes for me, whips the chair around & off we go. Morphine, I'd never had it & always thought if you had pain Morphine magically made all pain disapper. The pain stayed, I was wasted. I stayed wasted (more Morphine) as they waited for my previous scans & for a slot in imaging to open up for mine. After the scan... I wasn't told the diagnoses, I read it on the discharge paperwork the next day. I was too wasted to read it or the prescription I was given. 

Diagnoses: Tension headache

Prescription: Sorry can't recall the dose: Fioricet (12 tablets). I never had it filled. My next stop was neuro #1.

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lol @ doctors and cluster headaches. I am self diagnosed and if I wanted to get it on paper I would just have to talk to a good doc for five minutes and boom I'm diagnosed.

 

Anyway, I started out thinking I had wisdom teeth killing me since they came in the same time CH started so I never went to the ER for it. I have been super close many times but the thought of not being able to lay on the floor or take a shower or pace around while moaning has kept me from going to the ER. 

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G'mornin BOF!

Although I've hit the fire station a few times for O2, I've never gone to the ER for clusters.....however, I was transported to the ER at the Dallas VA in 94 for a suspected heart attack!

So, the doc does an initial evaluation and I give him my history and meds (all a part of my VA health records), they get me in a gurney and put me in a room, a nurse comes in, asks my pain level....told her a 3, so she gives me a nitro and asks again.......my answer, my heart is racing and I'm about to pass out!!!  

She called a code and the flippin room filled up with doc's and nurses.....evidently the nitro along with the blood thinner "Enderol" DO NOT play well together!  Threw me into an arrhythmia so they wheeled in this machine, hooked me up and shocked the living piss outta me several times.....big enuf jolt that I was bouncing off the feckin gurney!

Did I mention that I was in cycle??  Well, I was, and by the time they got thru they had triggered a monster hit!

Surprised that the morphine didn't at least make the pain tolerable for you.....that was their remedy for me and it did get me thru that hit and several others for the 3 days I was in the cardiac ward waiting for a heart cath and presumably stents or a bypass....yup, you heard me correctly....3 dammed days!!

AND....it wasn't even a heart attack!  Veins were clean as a whistle!!  Wound up being a large hietal hernia and my stomach had been clamped down on by my diaphragm when it ventured thru the tear!!

I did wind up in the ER on Jan 15th and again on Feb 6th of 1998 as a result of suicide attempts related to my worst ever cycle, functional alcoholism, and Vietnam era PTSD but that's another story!

DD

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I was indeed at hill 327 in Dec of 66 BOF.....had been in country for just a couple months.....sat on the side of the hill in a pouring assed monsoon ( 12" in about 24 hours ) to see Bob Hope and company ( Ann Margaret too!!! ) on Christmas Day!! Lol!!

DD

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I'm in a small town and know all the staff. So the one time I ran out of o2 on a sun night they hooked me up in less then 2 min of going thru the door. They asked me if I wanted fentynal and we're shocked when I said hell no. Just 02 15 min later I was back to normal. Just as my dr walked in to see me.

 

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Ummmm, nah.....don't hold a candle to that day near Red Beach when I spent a few hours laying on the floor of a hooch takin tokes off a hookah with a big ol bowl filled with China white......or,  to my LAST day in country before coming back to the world..lol!! 

Actually, my first day in country was pretty damned memorable as well!  Got to the living area around 7p and hooked up with a buddy who was part of an advanced detail and who'd been there a couple weeks......he immediately hands me a j each of Cambodian red and Vietnam black and a big gin screw driver.....I was 19 and had never toked before!!  And before the nite was over I swore that I never would again!! Lmao!

DD

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20 hours ago, Dallas Denny said:

I was indeed at hill 327 in Dec of 66 BOF.....had been in country for just a couple months.....sat on the side of the hill in a pouring assed monsoon ( 12" in about 24 hours ) to see Bob Hope and company ( Ann Margaret too!!! ) on Christmas Day!! Lol!!

DD

I think my dad got there in November 66. He never talked much about Vietnam but he loved the base dog they had named Charlie.

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My wife has suggested ER to me on occasion, being a former medic, family in medicine, too familiar with triage and my timings to even bother considering it. Aside from ambulance, would be hard to get there as my wife does not drive. So that's expensive and by the time I see anyone who could do anything I would be out of the attack naturally, just growling, thrashing and pacing with nurses shaking their heads thinking that I don't know what a pain scale is.

 

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Most of the neuros out there don’t know how to treat CH let alone an ER doc. I went once to try oxygen, they pumpped me up w steroids, gave me Benadryl. And then didn’t want me to leave until “the Benadryl wears off.”  I had to sign out AMA (against medical advice). No one believed me how much pain I was in, only had 15LPM flow and the doc wanted me to stay in O2 for hours. It was in the beginning of my CH journey. Before I was finally given the CCH dx. I went cause I had already used 4 zembrace that day and I was getting slammed. I drove myself, parents were sleeping. The ER doc said there is no way you have CH and can drive while getting hit. They thought I was just drug seeking or crazy. Never again will I go to the ER. There is nothing they can do for me I don’t have at home. Mom and dad used to always say, let’s go to the ER or let’s see so and so’s migraine doc so and so asked if they treat clusters and the doc said he can fix you!  Right, there isn’t a doc out there that knows more about the options we have than us at this point. Well may be there are a few with tricks up their sleaves like the ketamine nasal spray my old “world class doc” wouldn’t write for. But as we painfully know batch’s D program and psychedelics are our only real hope. May be one day emgality will have more data. But it’s ability to put us in remission is fairly low. Even if it cuts my attacks in half I can’t study or work. At least not in the capacity I used to. Ok I’m off topic and negative today. I’ll stop rambling. Sorry it’s been a bad week so far. 

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I went. Once. I called Neuro before going and he was going to tell the ER doc what to do for me. Well, the ER doc was arrogant as hell. When I told him my Neuro was waiting for him to call , he said ' I am your doctor now.' and refused to call him. Sent a woman in to take blood to check for a stroke! She drew blood and left. I paced the hallways. I caught her about 10 minutes and asked about the test. 'Oh, that takes 30 minutes.' Terrific. I left immediately in as much pain as when I arrived.

Now, put that next to my scope experience: I advised the doctor of my Ch and requested that O2 and mask be waiting for me post scope. That changed. I got hit while sedated and out. Thrashed around so much they had to administer general to finish the scope. I woke to find a nurse in recovery holding out the O2 mask for me! And yes, sedation put my brain to sleep, but did not give relief. They got a bit of education that day. My husband had been told that I would be in recovery for at least half an hour. Surprise - I was up in less than 5 minutes! Amazing what CH can do.

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I ended up in the ER once about 4 years ago, my story is a little more positive.  I was in a bad, dark place getting no relief from imitrex or O2, probably stuck in bad rebound.  I had gotten little sleep in 4 days and was throwing up from the pain and fatigue, totally ready to cash out.  Hit the ER on a quiet morning, about 4am I think.   The Doc was ok, not really sympathetic at first, until he pulled up my history.  They eventually hooked me up to an IV bag and turned it on, giving me relief I hadn't ever felt.  After asking him what it was, he said it was a concoction of several things including an anti-histamine.  Still very curious what all was in that.  I went home and slept pretty much all day, it was wonderful....

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It is so good to read of a positive trip to the ER! As you have read, it is frequently a disaster. 

I definitely suggest that you read up on the D3 Regimen. It includes Benadryl for anti-histamine properties. Very simple and a big player for many in becoming pain free.  

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