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Living With Facial Pain

Anyone out there know how to get proper adequate pain treatment at an er in a crisis episode of pain?

I just left an Walk-In ER - the only one open late. I try not to go to hospital ERs as they triage and make pain patients wait hours and hours in agony. I’ve only needed to go to ERs every couple of months recently, in the last 6 months, as my pain has worsened due to extreme chronic stress. I’ve had very Atypical Facial Pain for 8 years resistant to all the many meds tried except opioid pain med at minimum doses. I’ve never exceeded my prescribed meds or increased the minimum amount. They always have worked well but not recently on these new INTRACTABLE pain episodes. I WISH some other less harmful, less dangerous, less controversial med would work on my pain. I’m unlucky, in that no other meds work and no surgical procedures are appropriate for my type of 24/7 nerve pain. I’ve NEVER needed to go to an ER until recently. In the 4 times (2 in one day!) I’ve gone to ERs, 2 were at a hospital where I was quite welcomed and received very good, albeit unsuccessful (in relieving the pain care) with IV Dilaudid, after many hours of waiting. It only brought the pain down to about a 5-6 and the pain was back in about 2 hours each time. The other 2 times were 2 different Walk-In "Urgent Care/ERs. The first took my copay, had me wait 2 hours, then brought me to exam room to see a nurse who said he 'd be happy to treat me but they were “out of pain injections”!! I nearly went nuts! I was in too much pain to argue appropriately so my sister was yelling at nurse for taking my copay and making me wait in pain so long when THEN KNEW WHEN I ARRIVED I WAS THERE FOR A PAIN SHOT!! She said I should get copay back as I wasn’t treated. Nurse took the blood pressure band and touched me with it and said sarcastically, “Now you’ve been treated.” I begged my sister to stop arguing and get me to another ER ASAP. At next ER they gave me a 50mg Demerol shot. It did NOTHING to bring down the pain. Because the nurse there knows my sister, she had compassion on me and convinced the ER Dr to mercifully give me a 2nd 50mg shot after a 1/2 hour. THAT WORKED 100% to take away ALL the pain. And inexplicably, a positive after-effect of that medication lessened my pain levels and frequency for weeks afterward!! Don’t know why, but it was the first long stretch of pain- free time I’d had in ages! Now for the most recent 2nd ER (open late) visit just now. The ER Dr. said, without even talking about my history and condition, etc…,“I only give 50mg of Demerol for pain.” I said I knew that would not help me at all from past experience, but I’d try it and I asked if it didn’t help, if he’d give me another shot to break the extreme intractable pain cycle I was in. He said no. He said he treats all pain patients the same no matter what their condition is. A pinkie boo boo gets the same amount as my excruciating pain!! I asked if he even knew what my pain condition entails. He didn’t care. I became hysterical when the 50mg did ABSOLUTELY NOTHING to alleviate my pain and his dismissive attitude stressed me out so much more that the pain seemed to get even worse! He said my RX list showed I take pain med on a regular basis so maybe I’m tolerant and that’s why the 50mg didn’t work. NO SHIT SHERLOCK!! I HAVE AN UNWANTED CHRONIC EXTREME PAIN CONDITION REQUIRING REGULAR PAIN MED!!! I said to Dr, “Are you actually PUNISHING ME for being unlucky enough to have this condition and having to take pain med for it? Because, as an ER Dr., HOW IS IT YOU CAN WATCH A PATIENT, WHO HAS PAID A LARGE COPAY, WHO HAS WAITED HOURS IN PAIN FOR TREATMENT, WALK OUT OF THIS ER IN HYSTERICS AND IN EXTREME PAIN???” He just walked away. I had to come home crying my eyes out and take a double dose of my pain med every hour until I could get a tiny bit of relief. NOT ACCEPTABLE. So the conundrum I’m asking others to weigh in on with ideas, successes, etc… is: WHAT THE HECK CAN I DO TO BE TREATED IN A SEVERE CRISIS? The “welcoming” hospital ER only uses a drug, even double of triple doses, (Dilaudid) that just doesn’t help my pain or last more than 2 hours - even though it’s stronger than the one that does work (Demerol). And the ERs that use Demerol won’t give me an adequate amount to ease my pain, even though 100mg IS SUCCESSFUL and even has a positive lasting effect. I can’t rely on a friendly nurse to help me in the future to give me the 100mg of Demerol it takes to help me in crisis. Any suggestions from Drs and/or nurses? This “War on Opiate Drugs” now is so screwing real legitimate pain patients. My Pain Mgt Dr and Neurologist agree that this new microscopic scrutiny on what they prescribe is killing them too. Their hands are tied. So drug addicts using RX drugs ILLEGALLY and overdosing is causing ME and others like me to needlessly SUFFER AND BE DENIED PROPER SEVERE PAIN TREATMENT. As if we “choose” to have this incurable daily severe chronic pain disease!! And “choose” to NEED pain medications to treat it! And that fact is USED AGAINST US. I’m obviously traumatized by my recent ER debacle and also so fearful of needing to go to an ER ever again, all the money and waiting in extreme pain, only to be treated like a drug-seeker and dismissed so callously, and then leave in as much pain as I arrive with. NEED HELP PLEASE!!!

I’m sorry, I’ve hate the ER too because of ill treatment by staff. My husband even argued for me. Anyhow I suggest talking with your doctor. Call their office they should have an answering or someone on call and have them call ahead to the ER. They can give orders on what to do to the ER for a pain control crisis. Next appointment you can work with them on an document to give to the ER staff. The face pain info tab has suggestions for this you can also search ER on the discussion area. Thanks to people who abuse medications there are a lot of hospitals that have changed their policies on pain care. On a last note an ER can not refuse to give treatment and if they can not treat you I believe they need tO transfer to a place that can. I hope this helps and i am truely sorry. Hope you get some relief soon. Hugs

I'm in a similar situation except I had the pain specialist's assistant decide I was too young to be taking oxycontin that I'd been on for more than a year with my neurologist, and it became her mission to get me kicked off of it and said it doesn't help nerve pain. So I had to then go through withdrawal and put my job at further risk. I don't have any answers honestly. It's messed up. Especially when nothings obviously broken, then it's almost impossible to get taken seriously.

Hi Kari. Believe it or not, I DID print out the Crisis form from this website and took it with me to that last traumatic ER! That Dr. Wouldn’t even look at it. I think some Drs. Have ego problems with a lowly patient expressing what has worked in the past for their pain. My own Pain Mgt Dr. Also wrote me a letter with my diagnosis, history, meds, and a plan for “Intractable Pain” - it says “Must go to Urgent Care or ER for 100mg Demerol Injection which works for patient’s intractable pain.” Again, that last ER Dr. tossed it aside. It was after hours, so none of my Drs. were available. Their answering services said call 911 or go to ER. Can’t win.

Shindig - don’t even get me started on the Assistants, and worse, Pharmacists who want to be Doctors now, especially when it comes to Pain Meds! I realize there’s an overdose epidemic with drug abusers, but research shows that Chronic Pain Patients RARELY abuse pain meds. Yet, they don’t read the research and treat us all like drug-seekers! On power-trips and just plain ill-informed and ignorant.

Call that doctor again and tell them to contact the doctor with a message. Tell them you are in crisis pain emergency and have been refused adaquate treatment by the ER. Tell them that you need the doctor paiged or whom ever is on call and they need to call you back. If you must start calling the the number every 30 minutes. If you are unable to speak have some else do this for you. Most doctors will call you back and they can call the ER ahead so the wait time is cut down and so you get adequate treatment.

On a second note after you have your pain controlled report every doctor and nurse that mistreAted you.

I’m so frustrated for you.

Also this may sound low but I will cry moan shake and sound and look pathetic if needed to get treatment, and let my husband do the talking for me.

Hugs

Try to remember this is just a phase and this too shall pass. I know it’s hard but sometimes that can help even if it’s just a little.

Let us know how you are doing



ZeldasSis said:
Hi Kari. Believe it or not, I DID print out the Crisis form from this website and took it with me to that last traumatic ER! That Dr. Wouldn't even look at it. I think some Drs. Have ego problems with a lowly patient expressing what has worked in the past for their pain. My own Pain Mgt Dr. Also wrote me a letter with my diagnosis, history, meds, and a plan for "Intractable Pain" - it says "Must go to Urgent Care or ER for 100mg Demerol Injection which works for patient's intractable pain." Again, that last ER Dr. tossed it aside. It was after hours, so none of my Drs. were available. Their answering services said call 911 or go to ER. Can't win.

Thank you everyone so much for alot of good ideas I WILL use, but mostly for your support, outrage and compassion. It helps enormously when going through a traumatic event and even when just living every day with this pain disease - the struggles and all the strength it takes out of a person, to have the people on this site to understand, to comfort and to validate a fellow sufferer. I can’t thank you guys enough.

I found this treatment plan from Dr. Mark Linskey on another TN site, I tried to copy/paste but it wouldn’t work…please see the attached photo of his instructions. Take them to your doctor/ Neuro and ask him/her to write this as a treatment plan for you should you need to go to ER.

Dr. Linskey is a well respected neurosurgeon.
164-image.jpg (78.8 KB)

Awww sweetie, I am so sorry you went through this. It seems like you were doing everything you could to get the help you needed. Your letter from the neuro should be enough. I wonder if writing to your congressman or senator could provide help to this situation for the future? This crackdown on pain meds has everyone in a panic. I live in the state that had record number of walk in "pain clinics" that got shut down. For goodness sakes, those were the ones causing trouble..not most neuros and legitimate pain mgmt specialists (anaestheisiologists). I also wonder if presenting the story to the news would shed light although I think they would hesitate to do the story out of fear of the pain meds aspect.

Thanks so much Mimi for your reference to Dr Linskey’s treatment plan. I got the picture and saved it to print out and bring with me if I have another severe crisis episode. You are a dear for sending it to me. God Bless you.

Hi Shadow2. Thank you for all the good ideas! And the support. I’m laughing along with you about the end of your comment about the media coverage being a double-edged sword. I’m imagining me being the “face of wanting more pain meds” in my state!! Might work against me and then no one will want to treat my pain! Such an absurd environment regarding pain treatment. Every Dr is now skittish about it because of the hyped up “epidemic” of overdoses. The Drs tell me they are now under a microscope. It’s a travesty for US - THE REAL PAIN SUFFERERS - who are now being undertreated. Thanks again to you shadow2 and all my fellow pain sufferers who helped me with ideas and support.

She sure as shit did... this is the thread I started when it happened: http://www.livingwithtn.org/forum/topics/when-doctors-don-t-believe-you?commentId=2413731%3AComment%3A397264&xg_source=msg_com_forum


Jamie said:

How can the assistant tell you to get off something that was helping. She can't undermine what your Neurologist prescribed. Request not to see the "assistant" anymore, that you paid to see your own doctor.

shindig said:

I'm in a similar situation except I had the pain specialist's assistant decide I was too young to be taking oxycontin that I'd been on for more than a year with my neurologist, and it became her mission to get me kicked off of it and said it doesn't help nerve pain. So I had to then go through withdrawal and put my job at further risk. I don't have any answers honestly. It's messed up. Especially when nothings obviously broken, then it's almost impossible to get taken seriously.

Crap I linked the wrong thread, this is the one from my experience with the assistant at the pain clinic: http://www.livingwithtn.org/forum/topics/dr-visit-from-hell

OMG Shindig! I just read ALL your links and about your experience with pain being dismissed so callously. Your neuro seems to have been a great support in assuring you he’d give you the pain meds you need when you needed them. But that IDIOT PAIN MGT ASSISTANT overstepping her authority mucked everything up for you even with your neuro! Yikes. I’m so so scared of that happening to me. I have a VERY medication resistant form of Atypical Facial Pain. I’m NOT a candidate for any surgery. Well, what the heck is left but MANAGING THE PAIN with pain med?! Does anyone think I’m HAPPY ABOUT THAT? I was a teacher for years, a fitness fanatic, health food & vitamin nut, vibrant, active socially, fun…this disease HAS RUINED MY LIFE. I’m a near-invalid now. Either the pain or the pain meds sedating effects make me lethargic & depressed. My question is: What does a person with a CHRONIC PAIN CONDITION (not helped by the dozens of other types of meds tried & still trying) take for the PAIN??? That’s a LEGITIMATE use of pain med. And research SHOWS patients who rely on pain meds for real pain conditions may become DEPENDENT - if we need the meds daily, as I do with my 24/7 pain (oh, how "lucky I am to NEED PAIN MED EVERY DAY, whoopee!) our bodies will suffer withdrawal if we stop taking them. But THAT’S NOT ADDICTION!! Our bodies are dependent but our MINDS are NOT. Big difference. We just NEED the kind of med that alleviates our pain. Our minds don’t "crave it for “fun”!! At least my pain mgt Dr. explained this to me & reassured me - he held my hands when I was crying as I realized I was dependent and when I have a RARE pain-free day, I suffer a withdrawal headache. MASSIVE headache that NOTHING will ease - except what my pain Dr AND my neuro both said will help - to take a small minimum dose of MY PAIN MED!! And that works, but depresses me to no end. They’re telling me even on rare pain-free days, I can’t be pain or med-free or I suffer another way -“withdrawal headache”! As I cried, my pain Dr. explained, “Diabetics DEPEND on insulin. Their disease/condition dictates that they take it daily, if needed. My pain disease/condition dictates that I need pain med nearly every day. There’s no difference.” He said I’m at the LOWEST RISK OF ADDICTION out there. 1) because I don’t WANT to have to take them & 2) because I never take or want more than I need. Plus he quoted the % of real chronic pain patients who become addicted. VERY LOW. And he KNOWS how unhappy I am about having this pain condition - what it’s done to my formerly happy life. So, I’m so sorry you had such a bad experience being mistreated, incompetently & completely ignorantly. You need a Dr. who UNDERSTANDS this kind of chronic pain. If you are willing to be monitored - urine tests, etc…, offer that up front to show you ONLY WANT PAIN RELIEF & nothing more. Maybe that will make your Drs less skittish about prescribing you your meds. I wanted to ask you: when you went off your pain meds & went through withdrawal, HOW DID YOU TREAT YOUR FACE PAIN? That’s the million dollar question that puzzles me. I’d go off pain meds cold turkey today if there were something that would adequately ease the pain that will still be there 24/7. Any suggestions?



shindig said:

Crap I linked the wrong thread, this is the one from my experience with the assistant at the pain clinic: http://www.livingwithtn.org/forum/topics/dr-visit-from-hell

I think they indoctrinate medical students to not consider opiates unless you're missing a limb or something.

I just quit rather than trying to find someone to prescribe it because if you in any way ask for it you're considered a drug seeker.

I do get marijuana at the dispensary which helps but you're in TX which doesn't allow it.

I work as a programmer and did while on oxycontin just fine.

I just started seeing a new medical team referred by someone on this site who got a peripheral nerve stimulator. That's my real hope is for a PNS, but the neurosurgeon already said I probably don't qualify for it because I have a lot of pain inside my jaw area and he said the PNS can only be put in the front of the face and can't reach the jaw area.

Even with ATN I had an MVD because there were a lot of compressions visible on my MRI. It worked for 8 weeks. The new neurosurgeon said I may have another MVD if anything moved after surgery, I'm waiting to have another MRI now. Otherwise he said gamma knife or rhizotomy is the other option. I said I wasn't fond of damaging the nerve while I'm young and he said understood but has good success rates with it.

Thanks shindig for your answers to my questions. Sounds like you have some options for the future. My “VERY ATYPICAL” ATN has no other options right now. My MRIs are perfect. No compressions. However, I am VERY INTERESTED in your experience with medical marijuana for nerve pain. How does it compare to the opiate meds in relieving severe daily pain? Is there a particular type best for alleviating nerve pain? What method of delivery worked best for you? Smoking it isn’t an option for me. My pain Dr strongly suggests I try it. By the way, I live in RI, and luckily it’s now legal here. So it’s an option I’ve been reluctant to try but now getting desperate the longer my daily pain requires daily pain meds. So afraid of even the possibility of a need for withdrawal. I don’t see how my pain could be addressed while I withdraw from the only thing that works on my pain! What a merry-go-round.



shindig said:

I think they indoctrinate medical students to not consider opiates unless you’re missing a limb or something.

I just quit rather than trying to find someone to prescribe it because if you in any way ask for it you’re considered a drug seeker.

I do get marijuana at the dispensary which helps but you’re in TX which doesn’t allow it.

I work as a programmer and did while on oxycontin just fine.

I just started seeing a new medical team referred by someone on this site who got a peripheral nerve stimulator. That’s my real hope is for a PNS, but the neurosurgeon already said I probably don’t qualify for it because I have a lot of pain inside my jaw area and he said the PNS can only be put in the front of the face and can’t reach the jaw area.

Even with ATN I had an MVD because there were a lot of compressions visible on my MRI. It worked for 8 weeks. The new neurosurgeon said I may have another MVD if anything moved after surgery, I’m waiting to have another MRI now. Otherwise he said gamma knife or rhizotomy is the other option. I said I wasn’t fond of damaging the nerve while I’m young and he said understood but has good success rates with it.

Hi ZeldaSis,

Don't wait until your next crisis episode to discuss this treatment with your ER Department.

Write them a letter today and include Dr Linskey's suggestions.

Your aim should be to get this information placed in your file, so that when you turn up, they know what to do.

Don't let yourself get into the position where you are waving a piece of paper which no one has ever seen before at a doctor in the ER room.

Plan ahead, be prepared, and look towards developing a long-term relationship with your local ER.

This is the most important lesson I have learnt in managing family health crises - one day you can be the crazy guy touting his 'experimental ideas' and 'internet research', and then days later, the doctors will push you out of the way as they rush administer the 'plan' that is now attached to your file. It's an eye-opening experience, and so much less stressful!

Good luck

Thank you Bilateral for the great suggestions. Will definitely do that. BUT, I’ll NEVER go back to THAT ER! That Dr. just wouldn’t care if I brought all my Drs with me to the ER with me . He was “intractable”!!



Bilateral_TN_I+II (refractory) said:

Hi ZeldaSis,

Don’t wait until your next crisis episode to discuss this treatment with your ER Department.

Write them a letter today and include Dr Linskey’s suggestions.

Your aim should be to get this information placed in your file, so that when you turn up, they know what to do.

Don’t let yourself get into the position where you are waving a piece of paper which no one has ever seen before at a doctor in the ER room.

Plan ahead, be prepared, and look towards developing a long-term relationship with your local ER.

This is the most important lesson I have learnt in managing family health crises - one day you can be the crazy guy touting his ‘experimental ideas’ and ‘internet research’, and then days later, the doctors will push you out of the way as they rush administer the ‘plan’ that is now attached to your file. It’s an eye-opening experience, and so much less stressful!

Good luck

I can relate to ER visits. I have been suffering from ATN (V1 branch) for 3 years now. My pain was out of control most of the time from Jan-May of last year. I made it through an MVD surgery, but I am still in pain every day. The best news is that I have not got to a 9-10 since then.

What worked for me was a little unconventional. Since the pain is on my forehead and nose, the emergency headache clinic (they have a hospital room in the office) at the University of Utah I was given an IV cocktail of Ativan, DHE (some sort of migraine medication), and an anti-nausea med. This is the only thing that would work for me. I had to go to the actual emergency room twice since it was a weekend. They never had DHE. They could bring the pain down some with some of the drugs you mentioned, but it was never as successful as DHE and Ativan.

Just maybe my info might help you. Good luck.

Hi Flute Cutey. Thank you for your suggestion. I’d never heard of that particular “cocktail” at an ER but I think the DHE is an Ergotamine-type med for migraines. The reason it’s a good suggestion is that my at home meds are a combination of a pain med PLUS IMITREX - which is a MIGRAINE MED! None of my Drs can understand why the migraine med HAS to be combined with the pain med for me to get relief from pretty much daily face pain, but it does. So your combination might work for me at an ER in a crisis intractable pain situation.