I got a migraine two days ago, and it set off a raging TN attack, which in turn bolstered the migraine which set off the TN. You can see where this is all going. I woke up at about 5am with that kind of pain you just know is going to put you in the fetal position no matter what you do. I took all of my pain meds,including he extra neurontin my neuro said I could take during an attack. Nothing. My dad came home for lunch and found me balled up crying and scooped me up to take me to the ER. We tried te hospital ER once before and it was so crowded and noisy we left before I was seen and went to a stand alone ER near my house. We had a great experience twice there so it became my “go to” place. The last time I went some old crumundgen doctor lectured me on not eating wheat and grabbed at the left side of my face causing my mom to scream at him. I thought maybe the doctors changed shifts around there and I would have gotten a different doctor today. No luck. I tried to call my neuro before I went but he’s off on a long weekend. The doctor was condescending and rude and basically told me I was on too many pain meds and the federal laws had his hands tied. He said he would give me a little something in a shot but there was no way he could take away my pain. I was out of it because of my pain. I was crying so hard and of course him telling me to just live with my pain didn’t help. When I woke up at home my dad confirmed what a jerk the guy was and that he could hear him talking to the nurses through my glass door and it was clear the man didn’t even believe I’m science. My dad said he will never take me there again. My migraine pain is a little better at least. They didnt even offer me a pillow, blanket, cup of water, ice pack, NOTHING. It was terrible service from start to finish. The TN pain is still there, and I can tell its just barely hiding behind the veil of the meds they gave me. Every time I have an experience like this it reminds me just how far we have to go in getting doctors educated. They treated me like some sort of drug or attention seeker, and it was verging on humiliating. Just had to vent and share. NEVER AGAIN. Please share if you have had similar situations. It’s just terrible.
hi there, i've heard of this happening to people. i hope you find someone or some place better. i have yet to goto an ER because i know how it will go, nothing they can do, if they believe me, nothing if they dont... but either way it will be a pain med and told to go home and use a heating pad and take a nap. ive had the kind of pain you described. i woke up crying, moved to the living room where i cried from the pain most of the night. normally I have a high threshold for pain, this is the first time since i was little that the pain made me cry... i understand you completely! I feel bad for what you went through, i've met dr.s like that. one in idaho told me i had the flu when it was actually gallstones, that went on for 6 months... I hope you find a good place to go soon, or something that works better for the pain, maybe a change in meds? Good luck sweetie!
I'm so sorry you were treated this way----have you printed off one of those forms off here to take to ER - that explains what you have - and what you might need for TN?
Its under resources or face pain tab.
Hope it gets better for you--- another reason to add PTSD to some of us!
I had already taken dilaudid, norco, maxalt, Xanax, extra neurontin, extra tegretol, and I was STILL crying in pain. I just needed someone to break the cycle. I can kind of feel it coming back. If I wake up crying in pain again I will have my doctor admit me so I can get adequate care. For now being thankful for puppy snuggles and a little relief.
my neurologist put me on depakote cream, its also an anti seizure med but its a cream form and works right on the nerve. i rub it on my face, neck and forehead every day in the morning and evenings. since I started it I have only had one bad incident, lasted 10 days, but i realized that i had missed a few applications of the cream. but sofar its working. my dr. said it works good at numbing the nerve quickly. i've had no negative reactions so far either. i did try some other pain killers but nothing worked so now we are on to this. hope you find something that works, if anything ask about the cream. might work for you or someone else too.
I talked to my doc about the cream but he was concerned about putting compounded cream on my face because of my eye and everything. He said my problem is so deep he’s not sure anything topical would help. He have me lidocaine patches to try. I had many different pains today but the one that brought me to my knees was in the corner of my eye by my nose. Felt like an ice pick being staned in there repeatedly. Horrendous. Blood curdling. I was truly at a loss of what to do. They sent me home with steroids.
That’s understandable. My GP once mentioned that some people get shots in the nerve to relieve the pain kinda. Like they do for people with knee pain, I think its lanocain shots? Not sure exactly but that pain you described is what I had that one night in Feb. I get most of my pain in and near my ear, side of my face, jaw and by the eye, all on the left side of my face. I hope you find relief soon! There has to be something out there for people with TN!
First let me say I am glad that your a tiny bit better. Its terrible sweetie you have to go through this, but you have your parents to help you thats wonderful. We do not like to see our children in pain mo matter what their age. What I would do when you feel better is call the hospital and ask to speak to the attending physician of the ER and let him know what had happened and tell what happened and that this unacceptable behavior for health professionals. If you do not get anywhere with that department go higher up and insist you speak with the adminstrator. This happened to me it took me sometime , but was persistent and did get results that satisfied me. My best friend guided me through the process and who to contact. The only time I would be forced to use that hospital is if I was having chest pains, other than that My husband puts me in the car for 40 minute ride to Boston. Its very unnecessary especially when your in a pain crisis. Being a retired nurse, this absolutely infuriates me that people are tended to this way. My dog in an emergency gets treated in a humane manor. This is the way patients should be treated. Make sure sweetie that you follow thru with this they truely will not change if we do not complain. Also it will make you feel better. Go right to the top, and insist on it, it does work. The head of the ER said if I ever had another issue with the ER again that I had his permission to have them call him. Of course I was gracious, however I did not think it was approriate to get special treatment. Hope you are feeling better sweetie, my heart breaks when I hear these horror stories but also breaks for you to have to try and endure this monster of a pain. Rest and get better
My Best
Joanne
It’s one of those stand alone places so he’s probably part owner. I went there before because the don’t take Medicaid so they are never backed up. My mom knows the CEO of the hospital where I had my surgery so I get treated great while I’m admitted, but the lines at the emergency room the one time I went were atrocious. Plus they had two tvs blaring two different channels. I ended up leaving before being seen and went to the stand alone place. I had a different doctor then and he was really great. I will never go again after this time though. They said if I filled out their survey they’d send me a Starbucks card. I think I will do just that. They didn’t say it had to be a good review!!!
it's obviously the weekened for being in the ER as I too ended up there twice. I hope you find help soon, I cannot believe doctors treated yo like that. They just don't understand. I honestly think ER is vutile for us, no help at all. Glad to hear you have that kind of support from your dad, nice he understands your pain,
Take care of you
Linda
So sorry this happened to you! I pray you feel better soon. Call your neuro FIRST thing Monday morning!
BTW, I had some attacks like that. Like an ice pick was stabbing in the same spot over and over really fast, like as fast as a sewing maching needle! It start working up to it every afternoon and got worse and worse til I was just rocking back and forth begging God to make it stop. I know exactly what you're talking about.
HCal said:
I talked to my doc about the cream but he was concerned about putting compounded cream on my face because of my eye and everything. He said my problem is so deep he's not sure anything topical would help. He have me lidocaine patches to try. I had many different pains today but the one that brought me to my knees was in the corner of my eye by my nose. Felt like an ice pick being staned in there repeatedly. Horrendous. Blood curdling. I was truly at a loss of what to do. They sent me home with steroids.
My neuro has messages of me crying on his cell waiting for him. I didn’t know he went out of town until his on call doc called me back. I could hear the asshole ER doc on the phone with my neuros on call doc. He had no reason to be so awful to me. Oh well. I see the head of the Mischer Neuroscience Institute who runs a face pain clinic in the med center on Tuesday. I will be there all day being poked and prodded just to get a second opinion on my surgery and my recovery. I want to make sure I’m doing absolutely everything I can to get better as fast as I can. If I am in that bad of shape again I will have them admit me. I still have a squishy spot on the back of my head from a csf leak that doesn’t seem to bother anyone but me too. I swear sometimes it feels like nobody really gets how much pain I’m in or
they just don’t care.
I’m sorry that anyone else has experienced this horrible ER treatment. I hate that any of us are in so much pain we need to seek out the ER at all. We should at least be treated with dignity when we need emergent intervention!
Hi
I am newly dliagnosed just on Thursday but have had problems for 5 years. 2 weeks ago was admitted to hospital by g.p ? temporaal arteritis. Waited 11 hours to see a doctor and during that time given 2 Paracetamol while they waited on blood results. When seen by doctor given 3 aspirin. seen in am by medical consultant who advised would discuss with Rheumatologist as I have recently been diagnosed recently with Fibromyalgia. was told rheumy did not think related and should go home and take aspirin even though I had told them it did not help. Lost the place with the docs and told them I would be back when I collapsed with the pain.Left hosp and went home. When I got home hubby told me G.P. had called and I had to go see her right away. she gave me a script for Tegretol and told me appt had been made for emergency neuro appt by hospital docs. was seen within 10 days, unheard of here. someties it pays to lose it with the docs.
I think I would literally punch someone in the face if they told me to take an aspirin for this. Where do you live Anan?
I live in small village outside Glasgow in Scotland. It was when they told me to take aspirin I lost it with them, told them w hat I thought of them and walked out.
HCal said:
I think I would literally punch someone in the face if they told me to take an aspirin for this. Where do you live Anan?
Ahhh my heritage is Scottish! My grandmother moved to America when she was 14 
she was from Clyde Bank. Do you know where that is? Scotland is very near the top of my list of places I want to go visit.
Hi Heather
I haven’t logged in for a few days due to a vision crisis, just read your story now and am horrified you received such callow treatment. You really did need to have that pain cycle stopped immediately. Sounds like your state laws are inhumane when it comes to pain and proper care.
I have a book titled Trigeminal Neuralgia published in 2011 by Peter Jannetta and it has a section on what should be done in the ER in a crisis. I’m not home right now so can’t look it up but when I get back in a couple of days I will send info. It’s a medical book for professionals, cost a mint, but it’s been helpful to me.
Sending good wishes for relief and pain-free days to come.
Xo Bellalarke
That would be so helpful Bellalarke! I was getting ready to apply for med school when this hit so 1) I will probably love reading it as I do with anything medical and 2) I’m used to paying exhorbitant prices for books.
The place I went was a stand alone ER not attached to a hospital. They are never busy because they don’t take Medicaid or Medicare. They have popped up all over the place here. I’d rather go cry in pain in the hospital ER waiting room for 4 hours than deal with that jerk again. You would think we were living in the Middle Ages by the medical care we encounter sometimes.
It's a great book, you'd love it. It's on amazon:
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