Hello everyone! I found this website today and I am so excited to finally be able to communicate with people that actually understand what I am going through. I was diagnosed with TN a little over a year ago and was in “remission” until very recently. I went to the ER today and they did nothing. I was hoping that they would admit me so I could see a neurologist. After I talked with the nurse, they discharged me. I never even got to see the doctor. The last thing I was told was that I don’t need to see a neurologist because my family doctor should be able to keep the TN under control. Is this normal? I still feel like I need to follow up with a specialist but it’s not something I want to push for if they are going to think I am crazy when I try to make an appointment. Seems like everyone, including the ER staff, thinks I am crazy when I try to explain my TN and the severity of pain. Their advice today…“go home and get lots of rest.” Believe me, if I could rest, I would.
It helps to have a Neurologist and a Pain Management Specialist. They go well hand in hand.
Hi Jamie,
After I had Gamma Knife surgeryl, I still have the TN pain. I went back to my original neurologist. I didn’t feel comfortable with the idea of MVD surgery recommended by the Gamma Knife doctor. My neurologist has been helpful, they’re taking a different route w/me. They want to give a pill to counteract the effects of Gabapentin. I’m hoping that it will help. I didn’t know that if you have one neurological condition, it’s common to have another one. I’ve got migraines as well. Everyone has to be their own advocate, and do what is best for them. For me, I absolutley have to have a neurologist. I dread the day he retires.
I have been to the ER for Migraine and TN. You should go to a neurologist in my opinion and one that has dealt with a lot of TN patient. They are more experienced than a regular doctor. There other medical issue that can cause TN. Have you had any blood test or MRI to rule any medical problems out?
I would also recommend a neurologist. I have a family doctor who works hand-in-hand with my neurologist. The neurosurgeon who performed my MVD was also working with the neurologist and family doctor. I also see a pain management doctor. So many doctors!!! An up-to-date MRI may be in order for you since you are having a flair-up.
Because I am/was on so many meds, I do keep a list so each doctor can prescribe meds with full knowledge of what the others are doing!
The interesting thing is, my neurologist and family doctor are easy to talk to, explain things to. My neurosurgeon did not have the “warm and fuzzies” but he was pragmatic and confident ~~ that is what I wanted him to be. Make sure to find a doctor you are comfortable talking to. Make a list of things you want to ask him/her.
This journey can be so difficult, the more professionals in your corner, the better off you are! Just my opinion 
Blessings
Melodye
Since I last wrote, I have found that I am being tossed around like a hot potato. My Nuerosurgeon told me that is usually what happens. Pain specialist is going to proscribe the same meds that a nueologist will. Take you choice. I would also insist on an MRA. This shows the blood vessels in the brain better than an MRI. At least that is my understanding.
Pam, good advice, an MRA also!!! That is why I carry a list of meds with me, so there are no duplications. What I found with the pain management doctor, though, is I have other options available through him… acupuncture, cortisone injections, botox, massage… I have other issues (MS and arthritis) and the pain management doctor helps me with those issues too. My family doctor is the central location for this info ~~ all the other doctors send him their results and about once every 2-3 months, I make an appointment with him to discuss my case (you should see my file ~~ it is about 6 inches thick!!)
I have felt like a hot potato, a crazy lady, you name it, I’ve felt those feelings as I have put my “team” together! It has taken upwards of 10 years, but I am so happy with the doctors working with me! Hopefully none of them will move or retire
Melodye
Hi everyone. this is the first time i write here. I did my research after being with a neurologist that actually did not understand facial pain. I did not wait for a referral and researched the neurologists in the area i live in. I called those who have experience in headache. The one who called me back saying he had worked with TN patients and would like me to see him, is the one who has been my neurologist for the past three years. I love him, he is understanding and trusts my assessments of the medication side effects. he explains them to me, we discuss the potions. We will start a series of nerve blocks tomorrow, but there are still many other options.
TIP: I asked my doctor to give me a document with the diagnosis for when i need to go to the ER. Last time I went to the ER I felt dismissed as a person looking for pain medicine.
Discuss an emergency plan with your doctor.
I had had a an MVD, which did not work almost 4 years ago. With the first Dr. I had I could not function, I was in so many medications that my mind was foggy, slow, i was always dizzy and I felt stupid.
Don’t be afraid to refer yourself if you think you need the specialist, unless you need a referral due to insurance issues.
I had my TN diagnosed in 2006 after having suffered through the pain for a while and having gone through a bunch of dental procedures, antibiotics and regular pain medicine that, of course, did not work.
Carolina
Update:
I finally got in to a neurologist last Tuesday and started new meds last Wednesday. He took me off of all of the other meds I was on and put me on Tegretol chewable tabs twice a day. Since the medication change, I am still finding no pain relief. Today will be the 53rd day since my most recent TN “outbreak.” Unfortunately, I am now having pain in both sides of my face and in all three areas on each side of my face. He said surgery was out of the question for now due to the likely possibility of numbness in the face following surgery. At this point, I am feeling a little hopeless. I go to work (I teach) and then come home and go to bed almost every day. The frequent painful attacks are eating up all of my energy. I am sleeping more than I have ever slept in my life. Should the tegretol have kicked in by now??? Please help!
I’ve never heard of a person with TN not needing to be seen by a neurologist - You are the first in my book!
Jamie: Everyone is different. I can’t take hardly anything and I will eventually be going for my second MVD surgery as soon as I get the ok. I expect it will be later this year. The medicine are hard on a person. See about getting a sleeping pill, that has helped me out.