I’ve only had TN for a few months and already it’s horrible and makes me feel miserable. Whenever you look up facts about it, you see how it mostly occurs with people that are 50 years or older, well I’m 24 and have it. I’ve had quite a few medical problems and I always seem to get the “but you’re too young to have that,” and now it’s another one to add to the list. Anyways, how do you guys get through the particularly painful and hard days? I’m still in college and I’ll be trying to work on a paper or take an exam and it can be pretty distracting when my face is in pain, or when the pain is numbed out from the medication and my face is just tingling (that feeling makes me want to crawl out of my own skin sometimes). I’m on medication to help, but it only helps, it doesn’t fix it. I don’t want to keep dealing with this, the medication is helping compared to how it was, but compared to how the pain was a few months ago, it’s getting much worse. I hate the constant pain or tingling.
I don’t want to have constant pain or tingling for the rest of my life.
I’ve tried talking to some of my friends about TN but none of them know what it is, and after explaining what it is, they’ll say how it sounds horrible and such and then it seems like that’s the end of the conversation about it. No one around me really understands what it’s like dealing with it and I wish there was at least one person because there’s no one to ever talk to about it during the hard times.
Hi Opal7, I understand what you are describing. I know when you must keep going with your planned activities for the day, it is especially hard, so not all of these will be helpful, but you will find what works for you. My main ways of “dealing with it” beyond the medication on especially hard/painful days are one or more of these: lay down (even for a short amount of time) and do deep breathing/relaxation breathing (and even nap if I can), get into a hot tub and then stand outside in the cold for a minute or two (maybe works to massage and then constrict blood vessels or something), and the most helpful thing has been a TENS machine. I strongly suggest you get one. You can use it while you are writing a paper. My TENS has been a HUGE help to me. Best wishes!
I’m so sorry you are suffering. My constant crushing/aching ATN pain began when I was 24 as well. It was a rough, rough time.
Now at 6 years in I have found some things that help but I’m not gonna lie, it is still hard and I don’t have any perfect answers.
I had to accept after about a year that the medications were not helping me enough for me to keep my full time job, and pushing myself to get through was burning me out and not sustainable. I got on here and read about people who had been on disability for years or who had quit their jobs and finally accepted that I needed to do less because this was a big hard thing and I wasn’t the only one that had to find ways to do less and rest more. I quit my job and moved back in with my parents. I now only work part time jobs for 6-8 months then I usually have to take a month off to recharge. I make sure I rest everyday and get enough sleep whenever I can. Being short of sleep always makes my pain worse. My husband has to make most our money because I am limited, but I do as much as I can around the house and try and keep part time jobs as long as I can stand to do them. I am still searching for a job that pays enough to make ends meet and doesn’t slowly burn me out. The unicorn job has to be out there somewhere.
Things that have helped me on days I hurt bad and can’t do less are: Lidocaine cream and patches. They don’t work for everyone, but they can be found at most pharmacies or grocery stores, in the US at least. I use Aspercream brand and I cut the patches down and glue them on my face with eyelash glue around the edges so they stay on longer. I personally color the patches with eyeshadow to make them.look less medical and match my outfits.
Kratom power, it isn’t available everywhere as some places consider it a drug similar to cannabis. But I put half a teaspoon into an orange juice and tang mix and drink it down when pain is really bad. I was surprised how well it lowered my pain and didn’t make me feel high as that is a low dose. I buy a specific for TN blend of strains from a website called Sabai Sabai. You can see on their website where they will ship to.
Managing air flow and temperature. For the longest time I didn’t think I had triggers like they talk about with TN. My face hurt constantly and it got worse sometimes but it never seemed tied to anything. Eventually I learned that my triggers take time. It isn’t an instant increase it may take 10-20 minutes after I do something to trigger for the pain to ramp up. Once I started taking that time into account I learned that any breeze on my face increased pain, temperature changes around my face like going outside in the cold after being in a warm house, or opening the oven and having hot air blast me were triggers. I avoid those as much as possible, and wrap my face in scarves when going out.
I got an under cut, shaved the side of my head really short on my ATN side. Not having the weight of the hair there did a lot to relieve some of the pain in my ear and temple area.
Then the last thing was just to keep pushing my doctors to try new things, and when they wouldn’t or couldn’t, to find new doctors. I’ve tried 11 medications, nerve block injections, chiropractor, acupuncture, TENZ treatments, and next month I am having Gamma knife surgery. I sometimes take breaks from looking for answers because I am just tired and broke, but I always start trying again.
I thought my life was over when I first had this pain and had to give up a job I loved, but I met and married my husband because I moved home, and we have a hard but wonderful life together and I have worked some fun odd jobs and still met many of my goals it just takes longer, and I rest more, but that is ok.
Hang in there. With time we all get better at managing pain and learning what works for us. It still REALLY sucks some days. But there are still great days too.
If you want to know more about my story I have a blog at www.maskingthepain.wordpress com, or I am on social media and YouTube as MaskingATNpain
I have ATN on both sides, so no sharp stabbing pains, but intense burning face pain and tooth pain all day long. Ice packs have helped on those unbearable days and actually wearing a mouth guard. I buy them at Walmart. They are blue and only have the bite on the back of the teeth and are adjustable. For some reason I can’t find them online right now to tell you the brand. But it helps to relax my jaw and significantly lessens my pain on the left side. Not so much on the right. I got the tip from a TN sufferer. I currently cope without medication, but do take it on bad days, but like you, it just numbs the pain. I’m so sorry you’re dealing with this so young. My pain started at 37. I’m going on three years come April. It sucks, but every day I wake up hopeful that maybe today my healing will come. Don’t ever give up hope!
I’m so happy to hear that you’ve married and are finding joy in the less painful days. I’ve read your story and posts many times and I’ve cried with you and been inspired by your strength.
Thanks so much, I obsessively put my story out in order to reach and help people so it is always nice to hear it actually works occasionally. 
Writing and painting my pain helps me figure out my mental health. So I won’t be quitting anytime soon. Hi e you find some happy days ASAP!
I’m sorry you are so young to suffer this. Being on this site will help you to understand how you can help yourself more. If I’m able I make crafts if not I try to meditate. I live in hope they will find a cure one day. If not for me (I’m 60) but for young people like yourself. Take care of yourself. x
I was diagnosed with TN approximately 12 years ago. I tried numerous therapies and medications throughout the years. Approximately 3 years ago, I decided to have MVD surgery. Nothing was working anymore and I did not want to go on disability, but performing my stressful healthcare job was getting very difficult. I did a lot of research to find a center of excellence for cranial surgery. I chose Dr. Raymond Sekula, UPMC, Pittsburgh, PA. I traveled to PA from IL. My MVD surgery was very successful. Approximately 10 weeks after surgery, I was pain and medication free and I still am today. My only regret was that I did not pursue surgery years earlier.
Hi Opal.
I was just diagnosed a few months ago and I know exactly what you’re going through. I’ve had several breakdowns in 2 months because I try to explain to people what I’m going through and I get the same response. The medications and the pain has altered my life in a major way. I went from being a JOYOUS person to someone that’s experiencing brief bouts of depression.
I’m praying I found the right medication dosage that will help me cope.
Hang in there, you are not alone. Some days you’ve just got to accept the pain. Some days you can fight it. I’ve lived with this for over 15 years now, but I’m older. You do have my sympathies, which will not relieve the pain I know. Sounds trite, but acceptance of the pain, and (attempting ) to live in the moment, the “Now” helps… some days!!
Best wishes. Craig.
All of these posts helped me too. Thank you. I just started this in November 2020. Been a crazy few months.