Hello everyone, I have posted my story on here before (diagnosed with AO around 2006; finally pain free on imipramine in 2010 after trying anticonvulsants and Lyrica); pain free (with breakthrough pain only about 1 day every month or so) for 6 years. Pain came back a little over 2 years ago and a neurologist increased my imipramine, then tried other tricyclics and then Cymbalta and nothing helped. The neurologist gave up and so I went and saw an orofacial pain specialist down in Coral Springs and he couldn’t find anything to help me either (my pain is "centralized).
My question is, has anyone been able to get a doctor to medically induce a coma to try to help “reset” the pain signals??? I read a few papers on this helping people like me with medication resistant pain. I have pain EVERY day. The only time the pain seems to subside is when I am sleeping. NOTHING helps the pain at all (opiates, clonazepam, NSAIDS, capsaicin, nerve blocks, ketamine (low dose), kratom, CBD, and marijuana did absolutely nothing OR increased the pain). I am desperate for help and have no idea what to do or where to go next.
That movie line “sometimes dead is better” is pretty much summing up my life right now. ANY help would be appreciated. (Please read my full story in my other posts)
None of the meds I tried worked for me either. The only thing that worked was MVD surgery. The first one in 2012, worked for 7 yrs/4 mo.
I had surgery again in June this year and so far I have no pain at all. The neurologist said the pad the first neurologist used moved and the vein was touching the nerve again, so he separated it and cut and burnt the vein so it never grows back.
I am so sorry that nothing is working.I m in the same boat(sort of) with the pin in one tooth and my chin.
I have found that meditation sort of lowers the pain.
It is just even being able to meditate with the pain.
I know there is an online Mindful meditation course(for free)-might be worth just trying .
I know that walking by the lake when the waves are noisy sooths my face a bit.
I take marijuana oil at night (along with a whole slew of other stuff) to sleep.
Try and sleep as much as you can -I wish I could help you more.Big Hug
Hi ellen6,
I have tried Mindful meditation, but didn’t seem to help. Also, my job requires a lot of focus and observation, but even that doesn’t lower the pain. Marijuana made pain worse. I do get pretty good sleep at least! thanks for the reply!
I was at a retreat a few weeks ago and the teacher suggested to me to do TAPPING. or EFT if you look it up.
Not sure if it will help or not but look it up-it is free-do it yourself
I am going to do it
Hi -sorry
I don’t look at the site often enough after an issue a year or two ago. https://palousemindfulness.com/
I have not started this course yet.
Waiting for winter to come .
Please let me know if you try it.
It is totally free(or that is what they say-seeing I have not done it yet I can’t guaranty-but it would be sad if a mindful course that says is fee is a scam-so I do believe they are for real)
Hi, https://palousemindfulness.com/ is a completely valid Mindfulness-Base Stress Reduction (MBSR) online course - with no fee and no advertising. MBSR was developed for management of stress associated with chronic pain or chronic disease. The disadvantages of a self-directed course such as this are that it takes a lot of discipline to do it alone, and one loses out on the benefits of group learning and support. MBSR doesn’t promise to take the pain away. It may change our "relationship to the pain. It requires incorporating mindfulness practices into daily life.
Mindfulness-Based Cognitive Therapy (MBCT) is a program based on MBSR, developed as a relapse prevention program for people with a history of depression (also useful for anxiety & chronic pain…).
They are both evidence-based programs.
Just commenting on the mairijuana stuff-vaping makes my pain worse-but since I got to grow my own this year-the sugar leaves are much easier to vape.But I take THC for nite time sleeping in oil form.
Have you tried the oils?.CBD did nothing for me except drain the bank account.
Just tried BOTOX again today at a different place.
They said give it 10 days to work.
And also a script for 40%lidocaine in a base-have to get it compounded.that should be a bit better than swishing with 5%.
And for sur -definitely Flexeril stops the throbbing of the tooth .I did not take it one nite and paid the price.
I am so tired of feeling like an invalid.
Also for the course-I did not feel supported in the group I was in.odd duck out.So to each their own
Hi, I would love to try botox, but my orofacial specialist couldn’t find anyone who is able to do it inside the mouth (where I would need it). I have lidocaine oromucosal gel, but it does nothing (my pain wasn’t even lessened when they did multiple nerve blocks). My pain is now centralized, so even when the whole side of my face is completely numb, I still have the pain. Ridiculous. Nothing left for me to try and cannot live with the pain anymore.
There is a lady in one of the Canadian groups who has much the same type pain. she tried a stimulation technique and she found that helped.One of those new age things-she had someone in the family needing a patient for their paper and she got it for free-but she said it helped a lot.Do you want me to find out what it was?
And they tied you on narcoticslike a few different kinds.?Codeine works for me.Morphine knocks me out.percocets did zero-so it is not a linear line.
I agree.
Life in total pain every day is no life at all-especially if there is no baby in the family to remind one of better days.
Narcotics did nothing either. At this point absolutely nothing helps the pain even a little. What used to work now does nothing. Yes, please find out what they tried. I really appreciate it! I am willing to try absolutely anything! Not a believer in New age stuff, but I don’t think it will hurt (most of the regular medical stuff I had done actually made the pain even worse). Thank you
My cousin had TN back decades ago and she begged for one year without pain and then die.
It is a really sucky thing to have and hard to explain to other people.Just got out of meditation and tonite was dinner nite but people don’t get that I am not anti social .It is that my mouth is so sore and I need to go home and drug up.
Did you ever try medical grade marijuana oil?
How is your sleep?I know you have said all this but my brain is all fuzzy and the botox has aggravated things .But I know with the mj oil I will sleep soon.
Hi ellen6, I don’t have TN, I have atypical odontalgia. I have tried medical marijuana (both oil and plant) and it aggravated the pain a lot. I was on clonazepam along with desipramine and I had a few weeks of no pain, but the pain came back and increasing dosage did not help. If you remember, we “talked” before on this forum. I am the one who was pain free for 6 years when I was just on low dose imipramine, but it stopped working for me out of the blue and nothing has worked since. Both my neurologist and my orofacial pain specialist (who I traveled to go and see) gave up and have no clue how to help me. Out of options at this point. The only time I am not in pain is when I am sleeping. I sleep pretty good. Thank you for looking into that therapy! Has anyone ever tried TMS???
Matrix? I will look it up when I get home from work tonight. Thanks for the info! I asked if anyone has ever tried TMS therapy? I read several published papers on that being successful for both TN and AO. Trying to find someone to do it near me (there are a few TMS places near me, but they do it to treat depression and anxiety, so not sure they would do it for chronic pain).
I cannot believe that you are able yo work with all the pain.I am old so I do stuff to distract myself-like beach glass collect-but I could not imagine being responsible for things.
I have contacted Cynthia (article author) in the past. It was way back in like 2009 and at that time I was just being diagnosed. I think she is retired. I also have been in contact with the orofacial pain specialists up in NJ, but they didn’t have any new ideas for me.