Just wanted to hear other peoples experiences or feelings during their diagnosis time. I find myself often ok, then fluctuating back to anger note that this all seemed to get triggered from a bout of overworking, and evolved into TN from my understanding
I have been a TN warrior for 6 yrs. it took about a 1yr. to accept my pain. Many days I can’t eat, talk, drink among other things. I was confused about TN at first. During these 6yrs. I have learned to be happy about what I have and not worry about what I don’t have. Quality is more important to me than quantity. So one bite of food is better than none at all.Hang in there things get better and we learn different ways to deal with the pain
I ended up with TN2 as a result of 20 years of chronic migraine. I was more aggravated than angry, sorta “one more thing” feeling. It took about six months to settle into the hunt for a combination that would work for me and about a year to fully adjust to this horrible new life, but I had over 10 years of failed migraine treatments experience. I started migraine s prior to any migraine specific treatments! I was in the human trials for imitrex, even. So my advice to you is never give up, there will also be something new to try out there and one may just finally work for you.
I have TN for over 5 years . I had migraines for over 30 years . During the last 5 years I kept asking numerous doctors ( neurologists and …) if the TN has anything to do with the migraines and I never got a real answer .
Strange remark : the migraines were always on the left side of my face , same side as the TN . Strange …
anyone else who got TN after years of suffering from migraines ???
I’ve had the joy of a few differing diagnosis, TN being one of them. I have a benign growth in my head, which was operated on. ‘All fixed’ I was told, by my symptoms were 10 fold and the headaches are just NASTY, so my PCP sent me to all sorts of specialists and the last neurologist I saw gave me the TN diagnosis. He administered multiple Botox treatments, to no avail. I was trialled on all sorts of meds, nothing seemed to be my key. I tried acupuncture, didn’t help etc, etc. If someone suggested it, I tried it. But trying to get a direct answer on cause/effect from a Dr.???.. …near on impossible. Lots of ‘Well, it could be…’ or 'it might be… 'or ‘there is a possibility, but…’ nobody would commit to a direct answer.
I hope you have better luck than I.
Merl from the Moderator Support Team
In my opinion linking psychological health to physical health is often an overlooked issue and vice versa.
I have been suffering many strange and underlying symptoms since childhood. Unfortunately my nurturing wasn’t strong enough to spot/link my symptoms and struggled when enquiring about family history. I have been misdiagnosed, undiagnosed and I began to believe depression was driving my symptoms. In fact, I believe it was the other way around.
I started to get neck issues as a result of the head pain and started to focus on this being the cause. Over time I knew that my anger management was also becoming an issue and it was slowly destroying all of my relationships. Mr Hyde was taking over.
I am now a firm believer that my father has this and has failed to find a solution too. It took for me to be in 2 years of torturous pain to finally see a neurologist and I am currently going through the diagnosis stage. The medications have currently reduced my pain from a suicidal 9.9999 but the doses are too high to sustain for long periods so alternatives will be required. I currently am scheduled for my 1st occipital nerve block in two days, so fingers crossed.
I know I have depression and I know I now have PTSD; and although the thought of being alone with no support greatly upsets me, it brings me relief to know that I have not inflicted my pain and suffering to anyone else.
I cannot say I accept the situation; as no one deserves to be in pain, living in suffering; with having little, if no quality of life. So, try to hold on to the moments that bring you joy as you may need them on the dark days. Also, accept that this is not your fault and you know what feels normal, so when thoughts of a Mr/Ms Hyde nature start to cross your mind, be mindful and don’t do anything rash.
I suffered with TN1 and TN2 for 9 years during which I tried many types of therapies with varying degrees of relieve. After much research, I found an excellent neurosurgeon at UPMC, Dr. Raymond Sekula, to perform endoscopic MVD surgery. I traveled from the Chicago area to Pittsburgh for the surgery in Feb 2018. The surgery went very well and after approximately 6 weeks I was totally pain and medication free. This was my last resort. TN was interfering with my ability to work and live. It has been appropriately 2.5 years and I am still pain free. I hope this information is helpful to someone. I will gladly answer any questions.
Hi! My pain started after a dentist suit and took years to diagnose. Not one medication worked for me and about 6 years in I happened to be booted out of a doctor office and sent to a new doctor. With fresh ears and eyes he found the source of my facial pain with was Eagle Syndrome. A bone was pressing into my nerve causing 10plus pain which is why the medication did not work. I am now treated for ATN and TMJ. I let go of my anger early on but not of my sadness that I was no longer me. Now 10 years later I have a god life. Still have restrictions to my head movement and always have to life my life around my pain. It I smile everyday. I am even happy being stuck in my house under quarantine. I try to focus not on what I no longer have but the happiness I can find each day. Keep looking for a solution to manage your pain, there is hope.
I had high pain level misdiagnosed by a couple dentists resulting in costly expensive dental work to no avail. Probably over a 1 year period. Then I was referred to a facial pain specialist and he knew immediately what the problem was. Trigeminal neuralgia. Confirmed it with a brain scan, prescribed Gabapentin and I was virtually pain free withing a week or two. That was approximately 20 years ago. I can almost forget that I even have this condition 99.9 percent of the time. No question - I was one of the lucky ones! /s/ Arnold
I’m sure it is different for everyone. For me it was about a year or year and a half. Thought six years in I have hard days, and days where I’m like ‘why me?!’ But it def gets easier.
I’ve had atypical for 10 years. I had a MVD after 2 years that helped temporarily but eventually the pain came back, but then it gradually improved over years and there were periods with no pain.
I was originally diagnosed with Tolosa-Hunt syndrome on an MRI, but the pain never went away after the treatment. It can damage the TN and various other nerves in a really bad spot. But then I went to a different hospital and they said it wasn’t THS, it was atypical TN, they eventually did an MVD that temporarily helped, but eventually just kicked me to a pain clinic when the pain returned, and the clinic gave me a pamphlet called “living with pain” that said “learn to live with it”, and pumped me up with a ton of venlafaxine (450mg) and nortriptyline, it was a miserable state to be in.
The medications actually made it worse for me in the long run. In the short term they provided relief, but then I’d adjust to them rapidly and the pain cranks up off the charts until I raise the dose. Eventually you can’t raise the dose anymore, and you’re in agony. After cycling through a dozen meds to the max, I quit everything and eventually the pain normalized to a constant 5/10, then 4/10, then 3/10, over a year or more. 10 years later I’m at a 3/10 baseline, but its distracting and sometimes I just want to off myself when it flares up. I don’t even have a neurologist anymore, I moved states and I spent so much money to end up no better off I’m just riding it out as long as I can.
I recently went to an oral surgeon to get an extra tooth removed because I have pain where it is but she promises me its not causing the pain and I absolutely shouldn’t do it, and after reading stories on here I’m inclined to believe her.
Are you still taking the gabapentin?
Accepting TN2 was like excepting at first my life was over. Took time for a neurosurgeon to diagnose me. TN2 caused by a dentist and damage to my D3 and D4 nerve. I had surgery, nerve blocks , but was declared disabled and could no longer Teach within 1 year.
I went to pain management to learn how to manage my pain.taking one day at a time, Doing what I had to do to cope like we all do. My day was get up and do thing before 1:00 pm. After that the burning, face pain, electrical shocks and fall on your knee pain would Carry me through the night. Drugs an ice and prayers were my pain cycle. I accepted it one night when I was ready to give up. Not sure if anyone should believe me, but this is my story. I was awaken by a image standing by my bedroom door. It said “be still and trust in the Lord” my pain continued for years after that night, but some how my stress was better, how I looked at it was different. My thoughts changed from Why me Lord, to why not me. I wouldn’t give this pain to anyone! If I had to walk through this them help me. 5 years of pain, then one day it was a little less pain, then again and again I would have less. My pain doctor says I’m in remission. He’s not sure why, or how the nerve stopping firing and said it could come back as fast as it came. For now I’m 4 years in to remission and I consider it my miraculous miracle. Praying for all who suffer from TN
Hi, I was diagnosed 2010, MVD 2013. Supportive hubby, and 3 elementary school aged kiddos. I remember my limited physical and mental time was used to research the “why’s” and search out options for me. I couldn’t spend a lot of time looking back. This was Probally a blessing for me.
I focus on forward thinking. I was fortunate fi find a stellar Neuro. And my pain is mostly under control. So it’s easier to think. The Neuro recommended that I see someone specializing in “resiliency training” turned out to be a therapist who specializes in chronic pain patients. I found it beneficial, giving myself credit for challenges won. And recognizing that my thought process could be controlled. I went about 8 times. There really is a mind-body connection.
All my best, Warrior friend!
Hello there, for me it took 8 years.
Now, I’m doing pretty well, amitriptyline, hemp facial cream, and eating healthier…
I’ve gotten so much better.
I even went off the. Amitrip. For a year, but recently had to go back on it.
Due to stress!
It’s ok to be sad, as long as you do one thing a day… it’ll work out… be patient with yourself.
Having a good support system helps, for those particularly bad days.
Best wishes to you! Sending virtual hugs!