I'm quite lucky.The one time I had to go to hospital I ended up seeing a doctor with experience of TN straight away. She revised my meds to include Amitriptyline to give me a break by helping me sleep at night and I've stayed on it since.

It's taken a year for my mum to understand what I'm going through. I don't think she quite gets that I try to look as well as I can when I see her so she doesn't worry (my Grandma has throat cancer and my Auntie has recently had an aneurism - she has enough stress). My dad tried to avoid talking about it. My line manager where I'm about to lose my job understands completely how difficult it is to mot be well but appear fine. Trying to explain to people is exhausting. Trying to establish whether they understand/believe you is a nightmare.

I try to consider it from the point of view of other people. If I hadn't been in this situation myself would I have thought it believeable that somebody could have head pain in one form or another every moment they were awake for 12 months or would I have thougth they were exaggerating. If they said that medicine didn't help, would I have trusted what they said. Would I have believed that pain so severe could exist and people have to live with it. Probably not.

Yes I've had this experience. I have an insurance co. that has an er most nights and they wouldn't believe me thinking that I was drug seeking. Luckily me regular doc was there but by the time he Ok'd it the 2 pain pills I had taken kicked in.
Maybe if you had a note from your doctor that would work.
God bless you and hugs your way. I know how hard it is.

Sorry you were treated this way a lot of ER Drs don't know about this TN i think it touches 1 in 20,000 or so its not high on the list to know...Print up a card explaining what you have so if you go next time they can just read your list your Drs who are taking care of you...You have to be very vocal not everyone coming into a ER wants durgs they want relief and a shot is what they gave my husband...Call your Dr back and get with him on this pain.....Family no one really understands only a Dr who treats it or a person who has it...Hang in there...

I was never treated like that in ER. Lucky I had had it for ten years and had a regular Neurologist and a Dr. in ER who knew something about it. I have felt though not a lot of Dr's or people understand it. Not many have heard of it. Not long after being diagnosed with it, I was at my regular MD. Told her what the Neurologist said. I was not happy with him and his treatment. Asked her what she thought about Chiropracter etc. She said she thought I had a touch of TMJ! It is totally different than TN! My family didn't understand, thought it was a tooth. I had it pulled,it wasn't that tooth of course. I think they were beginning to think it was in my "head". Sometimes they still don't really get it. If I complain that I don't feel like doing something, my mother will say, well you always feel bad. I said if I were in a wheel chair or bed ridden I would be excused, but since you can't see it, it's ok? Well as I said I have had it for over 10 years. Finally I was able to be fortunate enough to get a referral to a Neurosurgeon at Emory in Atlanta. Had to wait 6 mths for the Neurologist there, but once I saw him, he sent me the same week to the Neurosurgeon and next week (3 weeks) from the date, I am having Microvascular Decompression (surgery). Don't give up, be aggressive with your Doctors. If you are not happy with their treatment, ask for a referral to another Neurologist from your Primary MD and if you want off meds and find they don't work ask to go to a Neurosurgeon. Don't wait and just accept it like I did for so long.

Hi Pitmum,
Someone posted a few days ago they carry a card that explains the disease for people that ask... She/he got it from the Facial Pain web page...Like Nosey said.... I was going to order one.. seems like it would solve that.. I do know how you feel.. about looking like a drug seeker... ... My hospital has patient gateway which likes up all of your doctors online.. they have access to all my meds and treating doctors... mri and xrays... I think this this will be the norm in a few years... We won't ever have to go though that again... I hope you feel better... hugs :)

Gosh, I'm so very sorry!

My doctor who first diagnosed me, told me that there was no use in going to the ER for an extremely bad pain attack. So I haven't. He gave me something to use during bad attacks, that would put me to sleep, and when I wake up, its gone.
Yes, yes, yes, I have had to explain to doctors that I have TN, and of course they do not want to admit that they do not know what it is. What do they teach them in medical schools these days? Then I must describe symptoms, and NO please do not push on my face.
My fabulous husband does understand it all completely, and that is a blessing beyond price. My boss may or may not understand it, but I have only had to leave work once, and only missed very few days because of it.
My best friend at work does not understan, and thinks that it is psychological. Last year she tried to convince me to go to the Christmas party even when I said that i was in mortal pain, because my face," looked fine". I feel for you, I know what you're going through.
I have not been to a dentist since being diagnosed. Too scared.

I asked my neurologist about giving me a prescription for pain medicine so that when I have the flare ups I don't have to go to the ER. He won't. He thinks the pain meds don't help. No they don't STOP the TN pain but they basically keep me knocked up and I can sleep. The first really bad attack I had I was AWAKE for 2 days basically a zombie, crying and screaming nonstop. I had some muscle relaxers here from a back injury so I took two and laid down. My mom said 10 minutes later I got back up and started going through the medicines when she asked me what I was doing I told her I need pills I'm hurting...it won't stop. She had to hide the pills because I was in so much pain I could of easily overdosed trying to get some relief!
I am going to look into those cards for sure!

Hi Pitmum,

I know exactly what you mean... When my pain is that bad.. it feels like someone is trying to take my teeth out with a crow bar.. I have gone into my medication to see what I could take too... It made me feel like I was a crazy person... I didn't care.. I just wanted the pain to stop... I can relate 100% The last time it got that bad.. I took two extra tegretol and a baclofen.. it was over a weekend... I tried advil.. I tried ice packs..

I knew it was bad and my doctor was going to kill me.. but I didn't care... I just wanted the pain to stop... When I spoke to him... yes, he was mad.. and he asked me to come in ASAP he took a blood test.. I was OK then he told me the dangers of self medication... I told him I had no control I had to make the pain stop.... It was something I'm not proud of.. but I was in a panic.. the fight or flight mode.... you will do anything ...

The last really bad flare up I had was in July/August of 2010. On top of the TN pain I also developed a dang abscessed tooth! I was in agony. The right side of my face swelled up to the size of a softball, I couldn't eat or anything because (I found out later) the infection in the abscess cause a pus pocket to form on the muscle. I lost 45 lbs in two months! It was mid August and I went to an ear, nose throat doctor and he rushed me to Wake Forest University Hospital because I was developing blood poisoning from the abscess. It had burst and started draining, the swelling went away, but i still could open my mouth. I thought the abscess part was gone....it wasn't! I had to have an IV and the antibiotic used to treat ANTHRAX for 4 days before I could have surgery to remove the infection ball that was wrapped around the muscles. But, I digress lol
In the July/August months before I knew what was going on my mom had to keep my pain pills in her bedroom and before she went to work she would put me so many in a bottle and tell me that's all I have until she gets home. I felt like a flippin' drug attack or something but if I had been able to get all the pills I woulda of surely overdosed.
A lot of the people that commit suicide with this disease may not intend to do so, but the pain gets so bad they just overdosed on pills trying to stop it.