I'm so sorry to hear that you are in so much pain. I too have TN from trauma. I fell and broke my eyeball socket and have been told a nerve was pinched when they put the implant in to bring the bone back together. I have burning pain (as if there is a burning hot iron placed in the corner between my eye and nose. I fortunately do not start to get the burning ssensation until around 1PM and then it keeps getting hotter as the day wears on. It is terrible to live live like this knowing what is going to happen each day. I think it has to have something to do with using my facial muscles or nerves. I was considering a radio frequency rhizotomy, however I do read about people having problems with that. I've been trying upper cervical adjustment. It did seen to help at 1st but not at all taking away the pain.I'm going to stay with it awhile longer to give it more of a chance. Hope it does kick in. There have been some good results with this treatment.....Good Lick..
I have had ATN for 12 years now and am absolutely convinced it was caused by me having brain surgery for epilepsy 14 years ago twice. The pain gradually started to occur about 2 years after surgery and is now incredibly terrible 24/7 to the point that I couldn't handle being alive for any period of time without medication. It obviously affects every single aspect of your life in an indescribable way. I have gone to at least 12 doctors by now- neurologists and neurosurgeons and so far not a single one will touch the thought of brain surgery to try to fix it. I'm like you, I can only dream of the day that I might be free of this disease that dis-allows me to have a career and kids. I'm afraid I haven't heard more than a half dozen success stories for ATN, but we need to be optimistic and focus on the positives of what we do have available to us. You know, most other parts of our body function just fine and so thats a big plus. All in all I just always tell myself I could be in a worse situation, (even though they call it the suicide disease and worst pain condition known to man).
Stephanie
I’m so sorry that you have lost a career you love and that you feel alone. TN can leave us feeling so disconnected
I started out with piercing pain four years ago and over the course of a year “progressed” to all the searing/ burning hells within a year. I curled up like something that had been deep fried.
Three months ago I had an MVD for both fifth and seventh nerves. Today I shopped til I dropped. Tonight I can’t talk but it’s okay. I’m up and standing tall. Friends and family can’t believe the difference, and it’s only now they’re realizing how bad it was for me. I don’t know how long this freedom will last. But I just wanted to let you know that change in this condition is possible. I still take 3,600 mg gabapentin/day for the time being and my brain has more or less adjusted to it after a long struggle. I also take 75 mg tramadol/day at around 12:30. It wards off the 1:00 pm wind up and gives me enough energy to sail through the afternoon. The timing of the tramadol is really important. If I get off track and take it later I never really make it up for the rest of the day. It works as some kind of boost to the gabapentin. Have you given it a try?
Please believe that the surgery you’re going to have in February will make a difference. Surround yourself with family and friends. Tell the people you love that they need to show up for you. This will help you show up for yourself. In the meantime reach out for whatever will help bridge the waiting time. For me it was Shaitsu massage. The cells in our bodies need encouragement! Space for healing to happen. Even if it’s a manicure, or asking someone to rub your feet. Even if you simply do something like that for yourself.
Keep Heart
Bellalarke
You all are so beautiful. When I joined here and saw everyone talking about remission and being pain free with meds I thought I was the only one on here with drugs and surgery still had pain. I’m sorry you are all suffering but it does help me realize I’m not crazy. I already at 07:30 have a headache ugh goes from my eye straight back.
I pray for all of us all the time that God will give a dr a gift to find a cure. I do have tons of hope I just get down. When this first happened I had the thought of I can’t live like this. Thank God I don’t have that thought anymore. I have so much to live for I just needed people like you who get this. I had to post what TN is on fb so people could see what I live with and it’s real!
Have you tried to add Trileptal to your meds. It really helps me. There is a generic.
Oh Stephanie my heart goes out to you. Your last 2 sentences says it all for me. Not working and having that wonderful feeling that comes from a job well done and working among people you care and respect. Is difficult enough and then to be in such horrible pain. I am pretty much in the same situation and can understand from that aspect. You never know that having the mandible joint replacement done might help free up the nerve that is giving you so much trouble (you can always hope) and also anytime I have been put under anesthesia, it has been like hitting a reset button on my pain and it backs off for a few days - so hopefully you will get that too. I imagine the surgery will be on the painful side... so my thoughts are with you and remember there are plenty more drugs out there that help with nerve pain and you may not have found the one that works for you.
I think my TN was caused by a very, very heavy facial called I believe Thermage. I bought a dermtologist's assistant's story that this would help my looks. Don't get facial treatments if you want to be sure to avoid TN. It's been four years and I've tried all the meds. I was finally in remission and feeling so cocky that I had a massage. The masseuse lightly worked on my cheek. Ka-bam! It set off the lightning. And I spent a month getting back to another remission. Lord, will I never learn?
I am currently on Tegretol (with a standing order for sodium blood test) and 60 mg. Cymbalta at night. Fingers crossed. Thank goodness for this website.
Kathigil I am going to the dr on thurs I will ask him about that drug thanks.
GailC I’m having joint replacemtn in both sides. My break was really bad. I do hope it helps but I also have a fear of getting it on my left side. I won’t give up my hope that’s for sure.
so sorry you are suffering from this horrible pain! remission is basically in the classic form of this not the atypical.
i also have atn unknown origin although i have had some traumas, head and neck when young. i remember having "headaches: when five yrs old. Know there are lots of kind and compassion people here you are not alone! we hear what you are saying.
i am on gabapentin, lortab, anti inflammatory when needed and have a right sided motor cortex stimulator implant on right side of dura under skull for left sided atn. it has helped so much!
there is also a peripheral nerve stimulator they can place directly in area or on nerve now too. don't know too much about this one.
i lose my job in 2004 and closed my business i carefully built over 25 yrs so i could have something for myself when kids were out of college. but i do water color paint now even sold a few pieces.
so do not give up keep in touch and know we are here for you!!
hugs and blessings for pain free days for us all!
So I guess I don’t have ATN I know the fall that broke my jaw caused this.
Julie I have ta spinal cord stim it has helped with the burning but not the pain. I was hoping I could go without drugs but I haven’t been able to stop them. My stim doesn’t cover all of the burning.
I’m so happy to have all these response. I love that everyone has shared so much with me. I can go to the dr and ask more questions. I think I was in denial for so long that I haven’t really questioned enough.
Stephanie,
I hope today has less pain for you than yesterday, and tomorrow than today.
I too suffer from what has been dubbed by at least one surgeon as "Atypical" or "Myofascial" pain.
I to began to suffer this pain following an injury, mine was too my jaw.
The pain is with me most days, It is far more of the intermittent "stabbing" type but there are volleys of constant pain.
Gabapentin Helps. Amityptaline Helps. Codeine Helps. None cure it altogether but will allow me to regain some level of function.
You have sisters, and brothers here who are all like you, asking the same questions. Why me? What can I do? How/When will I get better? Who can help me?
I can talk to normal pain free people, describe what my pain feels like, give them a fuzzy notion of But they will never feel your pain. That's why having a place like this is vital. We speak the language of pain and can relate intimately to what you describe through first hand experience.
I think my head pain at the moment is the worst. Not knowing when it will strike is scary. The fact that it is it on a few fairly isolated regions on my head, even though the pain is severe, makes me hopeful that some therapy will be able localize it's source and treat it/block it off.
The following are very promising treatments for this type of pain:
- Accupuncture/Trigger point therapy/injections
- Lidocaine Patches/Cream
- Capcaicin therapy
I've not tried any of them yet and wont give up until I have. Even if they don't work, there are still more treatments being developed all the time.
We're here whenever you need us to be. We can't make you hurt less. But we can share in your hurt together. I hope that can be of help to you.
Have a Pain Free Christmas and a comfortable new year.
I am sitting here now with lidocaine patches on my face. I’ve had those and have been on gabapentin Percocet for 3 yrs. in July I had a spinal cord stimulator put in. I am still looking for something to help. Even though I have all these things I still have pain. Mine pain is from my scalp to my lower check the side of my nose all on the right side.
I am thankful for all of the suggestions everyone is giving.
Stephanie I'm so sorry to hear that these things haven't helped and of your constant pain.
Yesterday evening I took 20 mg of Amitryptaline, some of it I let the tablet get wet and swished it around the inside of my mouth and toungue - it tasted horrid but it seemed to leave some of the areas of the mouth numb and did improve my sleep and the level of pain today.
Sorry Stephanie if you have already tried this as it must be frustrating being suggested things that you have already tried, but did you even try to add Amitryptaline (Or Nortryptaline) along with your Gabapentin? I have heard good things about this combination and I think I will slowly increase my Amitrypaline if I continue to get pain. Another drug which I don't know if you tried is Carbamazepine (Tegretol) or Oxcarbamazepine ?
Sometimes TN/ATN can be made worse when the teeth are touching, I imagine that because there is a lot of electrical activity from the nerve impulses when they touch. That's why sometimes having a bite guard (I have had a 'permissive' one made that fits over the roof of my mouth and lets my lower teeth rest against it) can be of help.
I have also read that if Lidocaine patches don't work, then Intravenous Lidocaine (Especially with Magnesium) can treat otherwise intractable cases. A specialist neurologist can also do diagnostic nerve blocks which can help locate which branch/sub-branch of the nerve is affected and then physically cut the nerve if it is needed.
Stephanie we are here for you in whatever way we can be and please keep letting us know how you are getting on. Things will get better.
I distract mmyself at night,put on ear buds and listen to quite music or listen to rosary. .anything, just relax
I pray for all of you. My 3 year old son has this kind of pain, I think, all I know for sure is it is HORRIFIC to watch my little boy hurting as he is now. Flair up started right before thanksgiving and has been tearing him down ever since. He has had it since he was 4 months old. So we are no strangers to this monster. My hero Daniel ( my son), had a triple organ transplant at 1 yr old . Ha, we thought that was serious. Had we known what was to come next. Made his transplant look like a freaking cake walk. My prayers are with you all.
My prayers are with you too
Poor baby! I'm so sorry. My prayers for him and you that must watch him suffer!!!!
Blake Harville said:
I pray for all of you. My 3 year old son has this kind of pain, I think, all I know for sure is it is HORRIFIC to watch my little boy hurting as he is now. Flair up started right before thanksgiving and has been tearing him down ever since. He has had it since he was 4 months old. So we are no strangers to this monster. My hero Daniel ( my son), had a triple organ transplant at 1 yr old . Ha, we thought that was serious. Had we known what was to come next. Made his transplant look like a freaking cake walk. My prayers are with you all.
did the TN follow directly after the trauma you experienced ? ... i was a passenger on a motorcyle when i was 18 years old ... a drunk driver hit us head on ... the impact knocked my helmet off ... there was truama to my head and whole body ... thing is, my TN didnt show up til many years later ... unless there is a delayed reaction, i have no clue to what caused my TN
Best wishes to all,
Rebecca
It showed up after the trauma yes. I didn’t realize it til my jaw was healed. I was wired shut for 12 wks and after the wires came off I was still having awful pain and burning. The oral surgeon sent me to a pain dr at that time. I was in denial until I have the trial for the spinal cord stimulator. When they did the trial the burning was instantly gone. Even after they did the surgery for perm implant I did pretty well. The past 2 months though I’m having a lot of break through pain.
I can’t imagine my babies having to go through this! I am so sorry Blake!