I have this horrendous sting in my bottom lip constantly due to mental nerve damage from jaw surgery. This pain makes me cry with a full feeling. I constantly think of this because the agony. What can I do to get my mind off this. I take my klonopin. Do any of you have coping skills where I don’t slump down to far in the dump and wish my life was over or why I even survived this surgery. I often wonder this.
I always do best when I am really preoccupied with something interesting and relaxing. Recently I raised a batch of chicks, and just watching them was so fascinating, the pain went into the background. I also recently went on a kayak trip and didn’t think about my mouth the entire time.
When the pain is at a lower level, it is easier to dial it out. I know that once it gets a bit higher, it is pretty much impossible to do that. Looking for answers and having hope, taking care of myself as much as possible, and dreaming about a pain free day, that is what keeps me going.
If there is a time when you have little or no pain (for me it is when I first wake up, lying in bed) find ways to maximize that time for as long as possible. That respite is precious.
Thanks for the response. I sing. Yes my mouth hurts but I’ve always loved it. My best time is first waking up. It’s all nice and tight and numb as the day progresses it gets worse by afternoon I’m in a lit of pain. I did well with the tegretol it took down the pain a lot, they are working on a replacement
When my pain is very high I try to do something I love…play my piano, go for a walk, adult coloring books. My mornings also are the least painful of my day. Mouth hurts as day goes on. I also take klonipin and just started Bachlofen. Hugs to you
Hi, 27 year old, 3 years of ATN. Before I got diagnosed when my pain was unbearable and I was sleeping less than 4 hours a night. I watched a terrible amount of reality TV, america’s next top model, hoarders, home renovation shows, cooking shows, etc. I often say “it was the closest I could get to turning off my brain” since I couldn’t sleep at all until I passed out from exhaustion, I needed a way to vedge out. Now that I am more functional and have some pain relief or at least pain reduction, I try to keep busy with simple tasks. Sewing projects, helping my husband solve video game puzzles, writing my blog, answering questions on this and other pain forums, reading, or listening to audio books, playing puzzle games on my phone, doing dishes while watching Netflix. I am almost never still and quiet anymore, because still and quiet leaves room for pain. I need some distraction constantly, even when falling asleep with pain I play soft piano music, otherwise I just lay awake until I start crying. Good luck finding what works for you!
Thank you. I sing it hurts but releases happy dopamines. I have a coloring book and make jewelry. The day before yesterday I was watching Disney yeah I’m 33 find it soothing almost fell asleep awoke to FaceTime for my cute niece. Couldn’t enjoy her. It hurt that much. They are taking away my 50 mg of tegretol. I have elevated liver enzymes but found out my elavil could do that. Thank you for taking the time to write to me. It means so much. I have all those hobbies and lidocaine I forget about when it hurts so bad I want to puke
Try different anti depressant since there are so few nerve pain options like Tegretol. Good luck! I used Cymbalta easily with Konopin, Lyric, Tegretol and occasionally, Baclefen in bed at night. It '/ too influencing on balance to walk or drive on Baclefen.
I’m sorry for your pain . I have geniculate neuralgia, it sucks too. There’s no escape from the pain . When I’m really depressed about it , and crying a lot I smoke a ton of weed. It doesn’t help with the pain necessarily but i think it helps with depression . Maybe makes it easier to zone out on projects .
Thank you. I was switched to pamelor. Cymbalta did nothing for me except made my weight go up. I’ve noticed on here triliptal and pamelor are a good mix for my type. Trying it out. I did use pamelor 50 mg for a headaches but I got urinary retention but I’m replacing this with the elavil so it’s only 30 mg. The elavil at 50 mg caused the urinary thing so I was able to play w it. 30 mg helps w the pain and my bladder to function normally.
I have hope this will work
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I think at the end of the day I may end up getting a medical marijuana card and take it in pill form. Smoking will kill my singing voice. Through all the pain I sing. It hurts to sing but the dopamines flood my body.