I don’t know if its because I worked in an ER or what, but I will suffer with breakthrough pain for hours upon hours without going to the ER even when none of my prescriptions are working. I go through this whole rationalization about them not being able to give me anything much better and there are other people there that need more help than me. My friends tell me I’m crazy and that I should just go and stop suffering. The other thing is that someone else has to take me so I feel like I am burdening someone and ruining their day. How long is too long to be in drug resistant pain without seeking intervention at an ER?
I am the same as you! I hardly ever use an ER for anything. I just suffer at home. At least I can lay down and TRY to sleep.
Its so true I will be in pain refuse to use the Er also a medical professional. What can they do some judge you as drug seeking and others just do not know what to do with you. Its truely frustrating and very sad at the same time. Totally agree on this one
I am beginning to think that I suffer too much in silence because it seems silence is my only hope. The worst is always at night escalating late in the day and often peaking between 8 and 10. I live alone and so would have to rouse a neighbour and if I do this after 9pm it means calling the First Responders who then have to call a water taxi because the last ferry has left and if that happens there has to be an ambulance to pick me up on the other side to tkae me to ER. Those are the rules. So I don’t do anything.
My neurologist said to just take extra meds and go to bed but not only does that make my heart bump and race, I find it too scary.
However, I’ve just been re-reading a chapter in Trigemnial Neuralgia edited by Peter J. Jannetta published in 2010. ( if you’re following Heather did you get yours yet?). This chapter is “Facing Pain on the Front Lines” by David Halpert: "my approach in a nutshell is to load with intravenous phenytoin (Dilantin) if the patient is presenting with incapacitating pain…some individuals may be predisposed to to self-perpetuating cycles of worsening, sometimes intractable, neuralgic pain…The trigeminal nerve in the neuralgic patient acts as if it has “memory” for synchronized painful discharges; it is the job of the treating physician to make the nerve forgetful"
And this is why: “within a patient’s flare of TN, one series of volleys makes it more likely that there will be another series of volleys. I think the are clinical correlations of what is likely happening pathophysysiologically at the trigeminal ganglion: atonal and demyelinating loss sets up emphatic discharges of the sensitized ganglion, sometimes occurring circularly and perhaps causing further damage.”/>
Maybe I should reconsider that bumpy freezing cold water taxi ride across three miles of the channel:(
Maybe we all should reconsider inconveniencing our friends and loved ones.
When I went to the ER a week or so ago and the crotchety old doctor was mean to me, even the little bit of intervention he gave me seemed to put a stop in the cycle of pain I was stuck in. Someone just needed to throw a log in the wheel to stop it from continuing to turn so to speak. I went home and slept it off and when I woke up that particular pain was done. I am so thankful my dad wouldn’t let me keep being stubborn and just scooped me up and made me go. Who knows how long I would have continued to suffer like that.
I’m still waiting on my book! I got a notice it shipped though
Whom are you worrying about burdening and why? Perhaps go on a different shift than last time or go to another ER?
They gave me dillaudid and bendryl in IV and I was pain free for a few hours -- it was a gift..
Your friends must know you well - so take their advice!!!!
By the way, if there was a ferry and an ambulance involved I would probably be super stubborn about going too. At least it’s only a 20 min drive tops for me to get to the hospital! You must really live out in the wilderness!!
My pain management doc has me taking dilaudid every morning so now when I go to ER they say they can’t give me anymore. I’m going to talk to him about stopping dilaudid at home bc I don’t think it’s doing much for me as far as daily pain control. It’s just making me tired for the entire first half of the day and taking away my ability to get treated when I have breakthrough pain. The federal government says they can’t give me anymore, even though the manufacturer of the dilaudid pills I’m on makes it in pills up to twice the dosage in on. Chronic pain patients really get screwed because the “war on drugs” wants to make sure that drug addicts don’t get their hands on addictive drugs. I don’t think that’s worth making people with real pain suffer.
Yup, I actually do live in the wilderness (dynamite view but after 15 plus years I’m ready to give it up) but I don’t live in a place with a “war on drugs”. You’re right, it’s making the legitimate sufferers pay for a handful of fools and foolish laws. You need to have that pain cycle stopped. How the hell can that roughed up nerve settle down with ongoing assault.
I totally feel your pain... my family lives 3000 miles away, so for a while I would drive myself and only ask for whatever they could give me that still allowed me to drive etc.
last time i was there, i was given 2 shots of dilaudid, toradol, iv tylenol, valium and oxycontin... i still left in pain but it got me through the worst breakthrough pain ever. :/
Sometimes I think I’m a wimp compared to the rest of the people on here! Last time I was in ER I could hear that it was a very small child in the room next to me who had something that needed to be removed from some body part(that’s all I could deduce from what I could overhear) and the poor girl was screaming in pain and fear. I just knew they thought of my pain as “all in my head” and they were all much nicer to her.
Bad experiences at the ER really make me not want to go back. My pain management doc said its not ok to take an extra dilaudid even when I’m having breakthrough pain. He gives me EXACTLY one months supply so I have to see him back every month. Annoying but what else can I do. I’m going to try to get off he dilaudid. I hope I dong have withdrawals.