TN and looking for answers

I have had Trigeminal-Neuralgia since 2005. It started small. Which it came on short shocks. Then it increased in my face longer and longer. My 1st neuro DX me in July 2006 MS and TN. I thought I went in denial and in 2008 I had a facial shock over an half hour. My face was like the art the scream. Luckily my neuro put me on carbamazepine which took a half hour to work . My shocks started on The right side of my face. Which over time it went to my left side. Now it’s on both sides . And of course my carbamazepine stopped working in 2022 at 1200mg. Spent 3 months not eating or drinking or talking. And then a hospital visit for fluids and second neuro tried oxcarbazepine. Which I am on 1200mg. Neuro said I will have to Try procedures next. I saw a neurosurgeon and he said it will come back. I hope this medication works
For a long time.
I have been looking for an answer a very long time .
All these medications are giving me side effects but the thought of procedures that will come back to not working. This is a very scary life we are all living with TN .

Hey Jess,
Often trying to find treatments that work with TN can be very hit’n’miss. I too was trialled on carbamazepine but it didn’t work for me and the neuro was not happy, ‘Well, it seems to work really well for others…it must just be you’ he stated. GGgrrrrrrrr. One thing I’ve found on this journey is that we are all individual, with our own individual triggers and our own ways to cope.

I think trying to balance effective medication vs side effects can be a minefield, I’m never really sure when symptoms are going to overtake me and all I can really do is try to manage the best way I can. If that’s meds, that’s what I use. If that’s hydrotherapy, that’s what I use. If that’s hibernation in a dark, silent room, that’s what I do and sometimes it may need to be a combination of all 3.

None of it is easy, I can assure you of that.

Merl from the Modsupport Team


Hi, I have been on the road of no helping medication and the side affects where worse then the cure. I finally had a MVD which stopped all the TN pain, there were some issues with headaches and such but the trade off was the best of all the roads I tried.
I am sensitive to most commercial nuropathic medications. SO i tried Cannabis with high CBD and THC content. For me: it was some relief from the spasms.
I have been at this from 2010 till my MVD in 2017.
I work in the local MED school as a standardized patient on the subject of TN. over the years with the new students the use of medications is being tempered with non conventional paths.
What I have learned over the 10 years with the students is that sometimes you have to look outside the normal routes to get some help.
I faced the same issue that i had to take more and more medication and with the increases came less relief.
As each person is and has unique physiology we can group some of the issues together and get a general idea on what helps. However you have to keep trying to find and research for some relief and not give up.


Hello Jess,
I’m sad to read your post but understand completely what it is like to live with TN.
I am a TN, can I say survivor? 2010 was my diagnosis. Drugs, many different drugs, and then drug cocktails, for 13 years. I am now drug free (and drug side affect free).
I had the Janetta Procedure in October 2022. It is mvd, developed by Dr. Janetta at the University of Pittsburg. I was fortunate to find a Doctor who worked with Dr. Janetta for several years close by me in Springfield, MA. Yes, brain surgery that I knew about since 2016 but put off. It’s brain surgery. You might want to do some research and see if it might be an option for you. I wish all of us, better days ahead.

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Hi Jess, TN is certainly not a group that anyone wants to be a member of, that’s for sure! Thank you for sharing your story. I have had TN since 1985, in my 30’s at that time with 2 young boys, and a husband that had to travel a lot. I didn’t get a formal diagnosis until 1990. I traveled to 4 different states visiting specialist after specialist. I finally got a diagnosis at Mayo Clinic. I was then sent to Gainesville, FL, to a facial pain clinic. Dr Gremillian saved my life when he started me on medication, that has been 38 years ago since TN changed my life forever. What I have learned is this:

We all walk a different pain path
Most meds stop working over time
Having a support team is important and having a faith foundation is essential.
Getting a medical team is important; doctors, dentists, internist, pain management doctor, neurologist.
Having a bag of tricks to use when flare ups arrive.

For me, I am not a candidate for any surgery, as it will surely make me worse. Each day Is different and on my good days I cherish each moment. I have lost friends who don’t believe that TN exists, at the age of 67 that no longer bothers me.

Never give up hope…

I got tn in 2010. I have had 3 surgeries and all kinds of procedures. I think you all know the ones that I’m talking about. I just am an old woman now, and I know that I will die with this terrible ailment. I am on oxycodone, gabapentin, carbamazepine, methocarbamol, and anything else I can dump down my throat. There is no hope. I’m sorry to tell everyone, but I have tried everything surgeries, procedures, medication, everything. There aren’t enough of us that someone would actually do a study and find a cure. Sorry I don’t mean to be a Debbie downer, but I’m done

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Hi @Diana2 , I’m sorry to hear that you’re struggling so much with this. As a few people have mentioned, a multi-prong approach is necessary, and that includes your mental/emotional health. For some people that might mean working with a therapist, for some it might mean medications, and for others meditation. The reality is that your physical pain and your mental well being are linked. No, I’m not saying that it’s in your head, not at all. What I am saying is that our perception of pain can be magnified or lessened by factors unrelated to the pain source.

Joining a support group is a great step, because it shows that you’re still looking for support. Keep that momentum going and see if you can find a therapist who specializes in chronic pain. Find a mental health professional to evaluate you for meds. Take a walk if that’s what you like to do. I know it sounds trite, but even faking it can help. No, it won’t cure your TN, but it may help your ability to manage it.

Sharon from ModSupport

Try Botox!

Welcome to our world!
I have had atypical trigeminal neuralgia for 12 years. It started out with stabbing pain on top my head. Over the course of about 6 months, the pain spread to all areas of my face on the right and then spread to the left. My pain is constant and moves around. It’s mostly moderate to severe. With the pain I have ringing in my ears, noise sensitivity, twitching (usually not visible, but I can feel it), burning eye (right side only), and depression. I have received something like 18 different diagnoses ranging from TMJ to cluster headaches.

I’ve tried a lot of different medications. Most didn’t work and they all had side effects. One put me into the hospital 2 weeks from falling on my knees due to dizziness-Carbamazepine. Finally what worked for four years was 10 mg of oxycodone every 4 hours which was the only thing that made me feel somewhat normal again. I didn’t realize how well it was working until I stopped taking it. Unfortunately, I had to stop it because of the new DEA and government rules and my Neurologist’s panic.
Interesting is sent to outpatient rehab. Took only 4 days to withdraw. People like us usually don’t get addicted, our bodies do get dependent. Look up painkiller in the dictionary and statistics of addiction for real patients in real pain.
Have tried for Trigemninal Neuralgia II:
Botox-Careful people, crushed my eye muscles 3 mos.
Lanocaine Patch- (Primary Dr said NO NO!)
Marijuana (Had legal card, Made headaches worse)
Oxcarbazine- (nearly killed me)
Special Diets

Have been to:
Cedars-Sinai Hospital
After review called and stated could do no more than what has been done for ATN.
Stanford Hospital including Stanford Cyberknife DR’s . Assistant called personally stated after review called and stated could do no more than what has been done for ATN.
Mayo Clinic
Dr. XXXXXXX, Neurosurgeon who performed the MVD on a contact of mine with TN in Utah also stated after review called and stated could do no more than what has been done for ATN.
Cleveland Brain Institute-Called and they also stated could do no more than what has been done for ATN.
Dr XXXXXX, Southern Nevada Pain Center -Stated what do you think I can do for you after review and examining me as our office does not prescribe opioids anymore.
Dr XXXXXXX Neuro Clinic, wife’s neurosurgeon, who thought he could help me sent me to DrXXXXXX Pain Doctor, who saw me and said could do no more than what has been done for ATN, office does not prescribe opioids. Referred me to the Nevada Headache Institute in Las Vegas. Dr saw me and stated could do no more than what has been done for ATN, office does not prescribe opioids even though he feels that would be my best and really only option.
Dr. XXXXXX Neurosurgeon- Sunset Clinic, After waiting 3 months for my appointment two days before I was to go there, office manager calls to cancel as Dr reviewed all my files and will do no surgery for ATN.
Summerlin Cyberknife, my last hope, reviewed all my records and called to cancel my appointment, they will not do this procedure for ATN, TN only.
In June 2018, was close to suicidal, my neurologist finally gave me a prescription for 2 15 mg oxycodone to be split in half and taken twice a day. It works but is kind of like a tease, because I need twice that. No one will give me anything for break through pain which of course has to have a narcotic in it.
And I’m now 75 and ashamed of our government, DEA, etc.

I met with a new neurosurgeon today to discuss a procedure called percutaneous rhizotomy for TN. I’m curious if you have had this procedure, and did it work and did you have any side effects from it.
I’ve had Gammaknife two times and open surgery MVD. Gammaknife worked for awhile and the surgery didn’t work at all. I’m on the fence about this procedure…I just don’t know if I should have it done :woman_shrugging:t3:. Anyone?

Hi dfw56,
Last November after 18yrs of suffering but 2022 was the worse year… I had a procedure Percutaneous Decompression for Trigeminal Neuralgia. The left side of my face is now numb including half my tongue & nose. No pain but a strange feeling; like I have had a stroke but no visible signs. Off all meds and energy back to normal… maybe this is similiar to what you are asking about ?
The nerves take a while to repair - years I hope which means I will be pain free…
Now to see what the cold of Winter brings… Just have to be careful eating & drinking hot things… so I don’t burn myself… feeling takes a bit of getting used to but better than pain… GP

Thank you for replying, I had the surgery last Thursday, today is Sunday so far I’m not having any pain except just some swelling from the surgery. And yes I am numb but I was numb from the last rhizotomy that I had when I had MVD. So I’m used to that and if that all I have I’ll take it. Thank you so much for telling me your story it gives me so much hope to know this surgery may have worked this time. So let’s stay in touch and see how we do and spread the word to others that are suffering. You can email me if you want to at God Bless you :heart:

Hi GP, so it’s been 25 days since my surgery. Still mostly pain free. I have a new pain in my right ear. It has eased up and understand it may have been trapped air?? I seen a new neurologist last week, I told him I can’t take anymore Carbamazepine bc of my face swelling. He is transitioning me on an RX called Lamotrigine. I increase it every 4 days, my skin is itching so badly I will have to stop taking it. I just want to get off drugs all together. Well that’s it for now, I’ll keep you posted and others that are on here looking for answers.
Happy Memorial Day form Tennessee