Newly dx with

Hi.I was diagnosed with TN in Nov and have little to no answers to any of my questions. For about a year before the diagnosis I was passed around doctors given very painful shots into the base of my skull with no help. I’m on carbamazapine 400mg in morning and night and tomprimate 200 mg in morning and night now and narco which do not help when I have a flare up. The neurologist I was sent to, to rule out ms wont treat the tn because my family dr started treating it but he wont give me appropriate meds I’m at my whits end. I don’t know what to do I’m having some shocks and pain today. They are mainly side face and under my eye right now.Sometimes they don’t last long but other times I’m in pain for weeks. I just get so frustrated and with no answers or relief in sight I guess I’m looking for some advice from someone that has gone through this. I would appreciate any help

Hi Tammy. I don’t have answers for you. I just want you to know you’re not alone. I’m frustrated too. I was diagnosed in August 2014 after 3 years of constant pain.

How do you get through it?

One day at a time I guess. I really don’t know how I made it through the three years. When I was first diagnosed the carbamazepine worked. I was pain free. Yesterday I wanted to cry. I was desperate. I have never smoked pot but yesterday I was willing to try anything and had I opportunity I think I would have taken it. I know codeine doesn’t work, from what I have read it doesn’t sound like opioids work either and they are addictive… I made a post so you can read my story. It is in the general discussion…the subject is atypical TN, frustrated, medication?, ear pain anyone?.. So far no reply :frowning:

The carbamazapine helps but I noticed when I’m under alot of stress it’s a big trigger for me. It also causes serve tooth pain even were I no longer have teeth. Im having a issue getting pain meds right now because of the doctor I go to doesn’t like to prescribe them to people. I’m just so frustrated and not having anyone around that understands what I’m going through doesn’t help hell I don’t even understand. I have used a frozen water bottle on my neck that has given me some relief I mean really ice it. Another tn friend also has luck with that to. I’m just in tears half the time and its not always from pain I’m half tempted 2 use pot as well but I’ve used it before for nerve pain and it seem to make it worse so I’m kind of scared so I don’t know what to do!

I suffer from Geniculate Neuralgia which causes stabbing and burning pain in my ears. I’ve had the MVD in Jan 2015 and that only helped for about 8 months. After the meds didn’t give me relief, I opted to have the motor cortex stimulator implanted and it has helped. It’s nice to know I am not alone, however I have yet to meet anyone that has the very rare Geniculate Neuralgia like me.

Stacy, if you touch anywhere on your ear does it hurt like hell?

Did you face ever swell up any?

HI, I just had MVD surgery in February and it's amazing!!! no pain. I had to see a Neurosurgeon. Why have you not seen one yet? Doctors just was your time, that's what I found and the Neurologist could not help me. I had an MRI done that showed my condition and then it took a very long time to get in to see the surgeon but that was a blessing.

Hi Tammy,

I'm sorry that you are having such a hard time. I understand how it is to deal with this pain endlessly. Unfortunately, your story is a very common one amongst TNers. It is very difficult to find proper diagnosis and treatment. This condition is very rare so the majority of DRs, even neurologists, do not know a lot about it and are not up to date with symptoms and treatments. There are a lot of old stereotypes that are held onto.

Are you in the States? It seems for chronic pain patients in general finding the proper medication is really hard. With the tightening of laws there DRs cannot prescribe certain narcotics or opiods freely. There is a list of medication possibilities under the tab at the top named TN Basics. There is also a list of member recommended DRs under the Doc Appointment Tab.

With TN you need to be your own best advocate and a mini-specialist. Take some time going through past discussions on the site as well to see if you can gain any insight from other people's experiences.

We are here for you and we understand completely!


My face swells sometimes during a bad attack. It gets hot and red too.

Tammy said:

Did you face ever swell up any?

I am in the states. I’ve had to go to the er the last couple of times for some pain relief because I couldn’t take it anymore. I’m currently looking for a new pcp because the one I have just isn’t that great, I’m glad I found this page to finally get to talk to people that understand what I’m talking about and what I’m going through

My face has been hurting for like a week a constant almost tolerable pain but with sudden short stabbing pains with not so tolerable pain in my eye. Today the constant pain seems to be stronger though! Is this common or another symptom of the TN?