Why Trigeminal Neuralgia patients avoid the emergency Room by Published by Rebecca D Thorpe
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What doesn't kill you gives you a lot of unhealthy coping mechanisms and a really dark sense of humor, welcome to mine...
Even after years of TN it still feels weird to know that if my pain was only visible I could seek Emergency relief for it and would actually get it every time.
It's kind of hard to stay off the psych floor if you go into the emergency room and describe your pain with no visible proof of it.
Go ahead, try telling them your skin is melting off as bear chews on your head while someone is stabbing you with an electrified butcher knife (not my fault they can't see those things cause I sure can feel them) and see what happens.
Myself along with millions of others have an official diagnosis from one or more neurologist, neurosurgeons and doctors of our condition (s) yet that doesn't always seem to matter when our pain can't be seen and we are asking for help to control it.
Those that haven't witnessed first hand what emergency care can be like for us must think how easy it would be to just go into the emergency room when it gets so bad you're sure the pain is going to kill you.
Yeah we thought that too, at first...You see it doesn't always work out like that for all of us. When it's that bad talking hurts and you have to talk to how many people at the ER? Well let's count shall we....
1) the person at the window (you know that window that's always got air blasting 30mph through it) asking what's wrong and no matter many times you say Trigeminal Neuralgia, types in headache and gives you a little plastic band around your wrist.
2) possibly people in the waiting room as your crying and writhing in pain from the air at the window, the car ride to the hospital, the lights along the way along with the lights once you arrive.
3) the triage nurse that finally comes out to rescue you from the "waiting room hell" but then sends you to "answer a million questions hell" of their own and asks you to rate your pain on the sad face chart. You have 3 options here:
A) tell them what they want to hear it's a 6/7.
B) tell them the actual number, somewhere around 5 million!
C) flip them off in your head and hold up both hands.
4) the nurse that comes to get you from triage and wants to chit chat to your room as you're trying not to throw up all over their back, the floor and the walls of the way too bright and loud hallways because you're walking and not in a wheel chair since they can't see your pain.
5) the other nurse that comes to your room that you beg to turn the lights down and hand you more blue crinkly vomit bags.
6) the insurance cart person that comes to make sure they get their money even though you're pretty sure you're dying and will never see this bill.
7) the second nurse again as they tell you the doctor will see you soon for your migraine (wait...what migraine? I don't have a migraine) well you're vomiting and sensitive to light that's a migraine. You remind yourself you're too sick for an assault charge right now.
8) Doctor comes in with the usual how are you, what's going on today? You try not to kill him/her at this point for asking that and wonder why you keep getting asked the same questions over and over. Do they not talk to each other out there about their patients? By then your borderline if not full on hyperventilating from all the pain caused by the talking, sounds, breezes and lights. The doctor asks how long you've had migraines (you kill the nurse in your head) explain you have Trigeminal Neuralgia not migraines) if your lucky you don't get the look of confusion as they attempt to recall those few lines they read about Trigeminal Neuralgia in medical school.
9) doctor comes back into room (like we don't know they just went and looked this shit up!) hands you 2 big pills and a tiny paper thimble of water so you have to tell him/her that there is no way these are going down and if they do miraculously go down, they won't stay there.
10) you see second nurse again who tells you the doctor is having to call someone (maybe God from how long it takes) to order something else since whatever pills have been refused) wait...What, how is I can't take them cause it hurts considered a refusal? Now starts the possible junkie routine where amidst all this pain and building frustration we now have to balance over a bright ass bathroom toilet trying to get our dehydrated bodies to pee into a cup that our weak and shaking hands are holding.
11) we hand nurse back the 9 drops of pee that took us 10 minutes to get and leave a little on the side of the cup as a parting gift in hopes it gets in their mouth somehow.
12) doctor comes back in (God must have called back and the doctor saw my drug test) and orders me something and something else along with fluids.
13) nurse comes in to give said shots or IV and wants to chit chat about Trigeminal Neuralgia (she must have seen the doctor look it up) you're too busy wondering if they washed their hands from your urine sample to attempt to talk back.
14) doctor comes back in who the heck knows how much longer and asks how you're feeling (why do they have to ask this can't they see you're still crying, shaking and writhing in pain?) you then get "the look" and maybe the explanation of how that should have helped and there isn't anything else they can do for you.
15) nurse comes back in with your discharge papers telling you to rest until you feel better and if your still feeling bad in the morning to call your doctor.
16) you call said doctor in the morning because the ER made you feel worse and he/she tells you to go to the emergency room.
17) you tell yourself, "self, we are never going there again!"
If only we could be lucky enough to bring said melting skin, bear and knife in with us to the emergency room things would be so much easier.☠🐻