From the above replies, we certainly all seem to be in the same boat!
I’ve had so many horrific experiences in the ER, one doctor actually looked up Trigeminal on Wikipedia right in front of me! I also have tattoos and evidently, you are IMMEDIATELY tagged as a drug seeker when you walk through the door.
The only way the madness stopped was when I actually found a great neurologist, and went to the hospital that he worked. They will page him and he treats me accordingly.
It’s so sad and horrific to be labeled a ‘drug seeker’, from ignorant medical staff that have no idea how painful TN really is. I am so sorry that you had to experience that. Keep your chin up! And know that you are not crazy! Or a drug seeker! You are just looking for relief in the one place that you should be able to get it!
Ignorant Medical staff is right...the tone in their voices is a tone of judgment...I want to say, you know what, stick a hot poker in your ear, over and over and see how you feel...it just irriates me...
Yay, we're a featured discussion! I think the fact that so many of TN patients have had similar experiences just shows how much of a need for change and education there is within the medical community.
Does anyone have any solid ideas or "best practices" they can share for dealing with ER docs and nurses?
So far the best that I've found from everyone's stories are:
- Bringing the TN fact sheet with them
- Bringing along a spouse, family member or significant other to help explain the pain and provide credibility
Also call your doctor or doctors while in route, or have someone else do this for you if your unable to talk. Your doctor/s can alert the ER of you coming in and also give them advice as the best way to treat you would be. It does not matter if its after hours or not call them leave a message and a contact number if you have to. Some doctors are actually starting to require this with all patiences in order to avoid their patients to being treated as the listed horror stories already told here. Other may require it due to the type of doctors they are; usually pain management doctors will require you to call them before going into the ER unless its a emergency of a different nature such as a broken arm.
You can also ask your doctor to write on the office letter head a note as to what to do in case of going to the ER. The letter should be directed to the ER docs as to what you have and what to use medication and treatment to give and which steps to do this, and give his or her emergency contact number or pager if needed. Some have has sucess with this and others have not. It’s a bit of hit or miss.
I am so sorry that people have treated you like that. I hope and pray, each one of you that has
this horrible pain from TN, can get some relief. My husband has TN and it hurts me knowing he has some much pain and I can’t do much for him. He has always been there for me, holding my hand when I was sick or having surgery. I want to be there for him, its my turn to help him. So if anyone has any advice please I would love some input. I am learning so much from all of you. I really appreciate all the discussions about what you all have experienced. I hope you are doing better.
Your response helped me. That tone of judgement,ignorance and dismissive attitude, I'm sick of it. I'm still currently experiencing it. If they had the pain we have; like a vise-grip pliers clamped of the back of my tongue and a chopstick crammed in my ear, would they be saying 'you are just depressed or you need to work on your anxiety'? Is that what doctors would say to a POW imprisoned and tortured? 'Oh, you are just stressed out and need to learn to relax'? I am imprisoned by my pain and my life has been ruined. But (deep sarcasm) it's all in my drug seeking head.
Redhead1 said:
Ignorant Medical staff is right...the tone in their voices is a tone of judgment...I want to say, you know what, stick a hot poker in your ear, over and over and see how you feel...it just irriates me...
I just moved to MS and have been treated like a seeker ever since. My PCP and my Neuro knew me and knew my pain. They knew I was not just looking to get high. I am in pain. Here, I have been turned away from PCPs because they don't treat people with chronic pain. I had a pharmacist cancel my Rx for Norco because it was too soon to fill it. I had a nurse who was forced to give me Morphine in the ER give me the "you might need treatment" speech while she jabbed me with the needle and left. I had my first appt with the pain clinic that my PCP sent me to. The practitioner said she saw my MRI and my nerves looked fine. Which is common, but she made it seem like I was making the whole thing up. Then she started touching and rubbing my face with her cold hands as I sobbed. She then told me to open my mouth while she held my face. I didn't right away, hoping to let the pain subside, and she yelled at me. Then she told me she wouldn't give me anything for the pain. She said I have to come back 3 times before she will give me anything. The woman had ALL my records for 3 years! What do I have to prove to her?! Now I am curled up with my life on hold again waiting for the pain to stop. I am not looking to get high. I just want my life back
You know, I never wish anything bad on anyone...but just once I want someone that DOESN'T have TN to feel the pain we feel...Why is it that we are made to feel bad when we need help...I don't understand this world...It's okay for people to get rx's for pot for pain managment...but I can't get a dang pain pill...to help EASE the pain some...I just don't understand.
The best advice I can give you, as someone going through this pain, is robe supportive, patient and understanding. Unfortunately, life as you knew it will change. Your husband may not want to do things he used to because the pain is intolerable and may not even to be physically be able to because of triggers. My husband has been so great while dealing with this and I hope everyone has a companion like mine. He’s always looking for ways to help me and is very understanding. It can be very difficult for a spouse to go through this as it changes everything about the relationship. For better or for worse and sickness and in health can be taken for granted.
Im happy you’ve come here for yourself and to learn more about this illness. It’s a great site with lots of good information.
Take care.
Tommie Gerl said:
I am so sorry that people have treated you like that. I hope and pray, each one of you that has this horrible pain from TN, can get some relief. My husband has TN and it hurts me knowing he has some much pain and I can’t do much for him. He has always been there for me, holding my hand when I was sick or having surgery. I want to be there for him, its my turn to help him. So if anyone has any advice please I would love some input. I am learning so much from all of you. I really appreciate all the discussions about what you all have experienced. I hope you are doing better.
Oh dear Julya! You speak for so many of us, I thank you for your rant because it validates the hopelessness I am struggling with. I am so glad that you have your Mom there for support. She sounds like an awesome Mama Bear! That is my highest compliment btw, no way would I insinuate your beautiful Mom looks like a bear ;o) I wish my own, beautiful Mama Bear was still here. Please give yours a hug and a thank you from me!
Please continue to pursue healing, screw these ignorant beginners we sometimes encounter in the ER. We are often foist upon interns and student med techs because we present to the triage nurse as a person with no apparent injuries, but we are complaining of horrendous pain. Classic drug-seeking behavior that they have been trained to spot because it is a huge problem. They see only your actions. They make a judgement whether this is a true reaction to a pain that has no visible cause, no simple test to diagnose. I've had TN for 10 years or more, but only once went to the ER. This was about 3 months ago. I had such horrible pain I had been vomiting for days. I was in a cycle where the pain was striking in bursts, like a high-voltage cattle-prod to the head. the right side of my face was bright red and tears were streaming from my right eye. I felt like the right side of my skull was on fire, and I couldn't see much from my right eye.
After a couple of miserable hours, sitting on a gurney in a tiny space divided by those lovely curtains, I was finally granted a prescription to solve my pain. An RX for an anti-nausea drug, and a sympathetic pat on the hand from a trainee who "totally knew, I was, like feeling really bad 'cause her aunt has TMJ". I never filled the prescription. The drug I was prescribed was $800 for 20 tablets! Also tends to be toxic to the liver. She was actually the most knowledgeable person I met that day.