My name is Dawn and I’ve been living with facial pain for 20 years. I can’t even believe that as I write it. I’ve gone through ups and downs over the years with big pushes to find answers and relief, then retreating back when ultimately things didn’t work. I’m sure you can relate.
I’ve tried most of the standard medicines and some not so standard ones. So many that I can’t recall all of their names (thank goodness for a large copy of medical records to remind me). I had several nerve blocks done, and those gave me some relief for the hours they were in effect, but even doing those weekly or sometimes even 2 or 3 times a week didn’t produce any lasting effect.
At the moment, I’m feeling like I need to start in an upswing of effort to try to figure out some way to make daily life a little more bearable. My pain isn’t shooting or electric pain of TN, it’s more pressure and weight in my hard palate, nose, and it refers pain to my sinus areas (sinus issues long ruled out). It is constant, ever present and unrelenting. So if I could get even four hours a day of relief, I’d be absolutely thrilled, but I’m always hopeful for complete remission.
I’m looking forward to chatting with you and hearing your experiences with chronic facial pain. I’m a mom of a kindergartener, married to a wonderful guy, and I own my own business. My wish for the new year is to finally get some relief and be able to find my happy outgoing self again. It’s about time.
Thanks for taking the time to read this! Happy New Year and I wish all of us more relief in 2018!
Dawn,
Welcome to the facial pain forum, hope you can find a few answers here. That’s a long time to deal with facial pain! Have you had any remissions at all?
The two things that come to mind first are a lidocaine spray that goes up the nose, or lidocaine patches that you could put alongside your nose. Have you tried either of those? I use lidocaine patches along my nose, and it works pretty well for me, but my pain is more dental in location.
Have you had any luck with capsaicin, or chewing gum?
Have you also tried keeping a journal of when the pain is worse, and when it is better? I have found that certain things–alcohol, OTC painkillers, stress, talking, etc…make my pain much worse. By avoiding these and making positive lifestyle changes I’ve gotten the pain to a fairly manageable level.
Thanks for taking the time to offer a few recommend. I’m always looking for new things to try. I will try to summarize in bullet points, because stories can be hard to follow (especially with the pain that we suffer):
Only one day of spontaneous relief (2006-ish)
Nerve blocks from mandible (needle + fluoroscopy) and dental (between upper gum and lip bilaterally into cheek area) several of each provided relief for a few hours.
no one has ever offered me lidocaine spray that can go up the nose! That sounds wonderful - I need to look into that. Thanks!
I have tried the lidocaine patches, but since my pain is more deep inside the head, they don’t work. Also not practical, if you need to leave the house for work.
My hard palate is very sensitive to hot and cold (but sometimes I use ice or hot tea to change the pain sensations, because the constant hum/pressure/burning is so miserable.) I also run hot showers over my face for as long as I can stand.
I was reading on this forum about capsaicin, that’s new to me and is definitely worth trying. I need to find out more about it. Are you saying that the capcaicin can be in gum form?
I have tried to journal in the early years, but since my pain is so consistent, it wasn’t of much use. My days usually go from 7-6 on the pain scale. Overnight I always get congested (which is common with sphenopalatine neuralgia, I recently learned). So it takes an hour or two for that to subside. My pain can be changed by the positioning of my head, which I find encouraging. Tilting my head back is the best position. I imagine it like a bag of wet sand suspended in the middle of my head near the top of my nose and the bag hits right behind my nose. Tilting my head back seems to make the “bag of sand” come off the tissue and give me about 10%-20% relief. Side to side also changes the pain to make it worse on the downside and better on the upside. I assume this is from the shrinking and swelling of the turbinates in my nose, which act like that inherently.
I know it’s time to try again and I’m looking forward to trying some new things.
If your pain responds well to “distractions”, you may get a bit of relief from gum. I used to chew either peppermint (Doublemint) or cinnamon (Big Red) gum pretty much constantly. Fortunately I rarely find that necessary now.
You could also try applying lidocaine and/or capsaicin with a Q-tip to the top of your palate. I used to make a mix of 1/4 capsaicin cream (Capzasin-HP) with 3/4 lidocaine gel, and often threw in a Valium for good measure (worked well for burning sensations). I found the full-strength capsaicin at .1% to be a bit much for me, .025% was much more comfortable.
I’m curious if you have ever tried those springy things that you stick on your nose for congestion, sorry I can’t recall the name. They seem pretty effective for colds and snoring.
I recently started a trial of the CBD oil and had a bit of a break through - then no luck for two days after that. I’d say the first day I got 30% pain relief for about 4 hours. Unfortunately, I cannot calculate the amount of mg CBD that it took to get me that partial relief because I vaped part of the intake. So I have to start at square one again, and I’m not happy about having to be patient enough to get back to some relief. It’s really pretty close to miraculous that I got ANY relief at all. So I’m eager to recreate those results and see if it can get better. Pain is slightly worse now and I’m still coughing and have a sore throat from the few minutes of vaping I did, so I’m just sticking with the sublingual oil. Though this sounds gross I’m tempted to dribble some in my nose. (I used Ponaris Oil for awhile and it was definitely soothing and enjoyable as sort of a soothing distraction.)
Interestingly enough, I have tried those nose strips back years ago. Didn’t change any of the pain or pressure. The nerve runs through the turbinates (shelf structures in the nose - three on each side) into the soft palate, hard palate and somewhat into the top teeth. It’s deep pain so it seems untouchable by topical methods. I did have a compound pharmacy make a prescription for me with an upper plate mouth tray that was suppose numb the roof of my mouth, but no effect and it made me gag.
I’ve read a few of your posts about the gum, but it’s good to know that it’s just regular gum. It sounds painful to me, but I’ll try it.
I had an intake appt with a new PCP because my other one moved to another state. After a nurse and two nurse practicioners I didn’t actually get to meet the doctor. I did asked about the lidocaine spray and the capsaicin. They added that the oxygen treatment might be worth considering. (I need to do some research on that as they didn’t really describe it to me.) SpenoCath is another possibility.
It’s depressing to have to start all over again with a new primary doc. So much history lost and so much trust (both sides) lost. Lots of those basic questions, and they want me to relive everything I’ve ever tried. I hate starting over again, but I don’t have any choice.
