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Living With Facial Pain

Help to sleep


#1

Hello All,

I have been diagnosed with Atypical Facial Pain by Oral Consultant. He is not wanting to point the finger but pretty sure this was as a result of dental work. Pain is confined to right side of face and is felt at tooth extraction site and above. A CT scan showed nothing other than deviated septum which I have probably had all my life. I have been on Amitriptyline since Feb 10th and now on 40mg. Sadly 6 weeks now on I am seeing no difference as still feeling constant pain in that area. Unlike most people who are drowsy on this drug I seem to experience nightmare and vivid dreams. Out of interest is anyone on higher dose of Amitriptyaline and seen an improvement? I am also really sore when lying in bed so go to bed feeling v sore, perhaps aggravated by brushing teeth and if I wake up with dreams feel it and sadly wake up with pain so no getting away from it. Tooth extraction was upper back molar…does anyone wear guard at night and finds this helps?


#2

I was on amitryptiline for 35 years, so very familiar with it. In my case I do believe that withdrawal from this drug is what caused my ATN (or AFP, whatever you want to call it) in the first place (along with a dental abscess). I think after 6 weeks, if the drug was going to help, you would see some results by now, unfortunately. Perhaps give it just a bit longer, but taper down slowly, don’t just quit. I am also of the opinion that dental work doesn’t actually cause ATN, it is just the catalyst to bring on an underlying nerve weakness. Otherwise lots more people would have ATN.

A mouth guard is essential for me to sleep. It seems to calm the nerve down and keep it quiet all night. I even have a small inconspicuous one I often wear during the day. Have you also tried any of the topical anaesthetics such as lidocaine or benzocaine? How about capsaicin?

Try not to get discouraged as there are many medications, both oral and topical, that you can try. Sooner or later you will find a way to manage this.


#3

Thanks for your reply Ziggy. You kindly responded before when i posted. Surgeon wants me to stay on 3months but seem as well as getting vivid dreams and sleep disturbance I am also getting a red blushed face across side of face where pain is as well.

I think if no result he will taper me slowly off drug and then try anti-convulsant. I know a lot of people use combination of drugs but he seems to advocate one drug at time approach. I had asked him about topical drugs but didn’t really talk about that as drug saying that it had to be systemic or something like that.

How do you go about getting mouth guard for night and discreet one for daytime? Can you still speak/eat with it in? Sorry for so many questions

Have you found things that work for you?

Thanks so much for taking time to answet and sharing your experiences

Justine


#4

This is how mine started. I do agree with Ziggy. Dental work was a catalyst and not the cause. I was diagnosed with Atypical facial pain but it turns out I have a nerve compression. So who knows. Neurosurgeons say TN and neurologists say No. I take 40 mg of nortriptyline and 600 of f gabapentin. I also get botox. And wear a night guard that keeps me from clenching. This mixture has allowed me to enjoy life. Prior to this I was miserable. My pain started in the tooth extraction area and spread. Now I have no pain in my mouth. Just jaw shocks, occipital pain, temple pressure. The mouth piece was a God send. A dentist made it for me. The Botox took care of the pain in the back of my head. The medication did work. It took a while though - a few months. It never took my pain away completely. But the above combo keeps it at bay, for now at least.
Melanie


#5

I’ve been told that ATN always responds to trileptal – it may not take care of it completely but you should see some change in pain level immediately with ATN and trileptal. In fact, I was told that if I didn’t experience some sort of relief with the first dose to go back to the doctor as it probably wasn’t ATN and more investigation was needed.

Personally I started having relief within 45 mins of my first dose.

I agree that waiting 3 months to see if a med works is too long. With TN/ATN you should know if a med is working within 2-4 weeks. And I agree do not just stop! Taper off slowly.


#6

I’ve used several OTC “heat and bite” type mouth guards, but I"m much happier with the one that I ordered online (I believe the name of the company was J and S laboratories). It is a soft acrylic mouthguard. I’ve had the dentist make a hard acrylic mouthguard, but it was uncomfortable and my dog got ahold of it and hid it anyway. So they offered to make me one from a very soft, thin acrylic (called “bleach tray” material) that has been very good, I cut it down to the smallest area possible. I think it would also be super helpful if you had to talk a lot.

I mostly cope by using the mouthguards (I’m wearing the night one right now, after dinner), and using just a bit of topical lidocaine on a tooth pick. Things have gotten a bit better over time, but I’m getting frustrated again and would like to see more improvement, so time to work on more ideas.


#7

One thing I forgot to mention in terms of sleeping, I changed pillows about 10 years ago and found it helped enormously. I now use a side sleeper pillow. Here’s a link to one kind that I personally like…https://www.walmart.com/ip/Side-Sleeper-Contour-Pillow-by-Somerset-Home/873707324.

There’s Side Sleeper Contour Pillow by Somerset Home and one that’s basically the same by Bluestone. There’s something about the way it aligns my neck that helps with the ATN. It also seems to keep the pressure off my face when it’s flaring while still allowing me to sleep on that side – you know how hard it can be to sleep in a position you don’t usually use!

I have never, ever, had such a comfy pillow in my life and I would have never believed the reduction in pain overall. And of course I get better sleep and better sleep helps everything. It also helps me keep my CPAP mask on which also helps with sleep which also helps with pain… “the knee bone’s connected to the thigh bone, the thigh bone’s connected to the hip bone…”


#8

I have taken low dose amit. for years. If I take 30mg or less it helps me sleep. Any more and I also get nightmares and have difficulty falling asleep. I have been told it could be serotonin syndrome.

Apple


#9

I wear a mouth guard at night, and while it isn’t fun or appealing, it does help, especially if I’m having a nightmare. During a stressful sleep, I would grind my teeth, which doesn’t help anything. While this mouthguard isn’t exactly nice for the wife to deal with nor does it make those wonderful and important pre-sleep conversations with a loved one the most articulate, it is necessary.

What has really improved my sleep in the last week, though, was finally buying a new mattress. I had been sleeping on a cheap used mattress for years, and it seemed fine. But the past few months, I really noticed it was not supporting my body the way it needed to be, which was exacerbated by the fact that, like many of us, I can’t sleep on my ATN side. So I spend every night either on my right side or back. I just got a new mattress, and it has done wonders. My sleep is so much more restful.

I also have ATN, and I’ve also had a ton of dental work and several teeth removed from that area, I’ve also had several teeth removed on the opposite side. So for my case, the dental work have not been the cause. I can pretty much (though it seems for TN or ATN you can never be 100% certain of anything) say my cause has been several benign schwannoma tumors that were located behind my left eye that I’ve had removed. Unfortunately even though the largest of the tumors is gone, my face is still constantly swollen and my head hurts all day.

Lately I’ve been on a combination of 1800 mg gabapentin (Neurontin), 1500 mg of oxcarbazepine (Trileptal), and 60 mg of duloxetine (Cymbalta) with 20 mg of oxycodone. I just started the Cymbalta, and it seems to slowly be improving my situation a lot!

It took a long time to get to any improvement outside of opioids, and no one drug worked enough alone and nearly every one had side effects that took a while to get over. So while I personally strongly endorse an outlook that focuses on meditation and acceptance of the pain (John Kabit-Zinn has great secular guided meditations that focus on chronic pain and have been used in hospitals around the world, he’s on youtube for free), I also never want to stop looking for improvement. Hope you find some soon!


#10

Sport, gradually and daily,it is the best pain killer and moral energy,and the best medicine for sleep.

Physical job makes quality of life for poor people equal to rich people quality of life.

This is universe is perfectly designed,remember always, there is pain in things we think is good for us and parallely there is good thing in painful things.

Courage and patience…


#11

Hi Justine,

I take 70 mg of amitryptline daily and have for the last 5 years along with a bunch of other stuff. For me, no one can really say what started the ATN and my teeth don’t seem to be involved so it’s possible I’m reacting differently. I did have the nightmares for a while but for other reasons I started a nightly routine that includes meditating and journaling. It’s helping to resolve the nightmare and I haven’t had one in months now. To be fair I had the nightmares occasionally before but the meds seems to bring them more often.