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?Neuropathic Facial Pain

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Posted 10/18/2012 9:57 PM (GMT 0)
Hi All,

I added my first post in another thread and it was suggested I start a new one so I copied and pasted:

"This is my first EVER post on a forum/chat. I was Googling 'neuropathic facial pain' and stumbled upon your posts...they nearly described my pain exactly! I have had chronic head/face/neck pain for the best part of 25 years, becoming pretty well constant for the last 18 or so years (it's all a blurrrr)and then very severe the last 2 years (I am 49yo). I tried a lot of Chiropractic/Physio/Acupuncture/Homeopathy/Hormone Therapy/Naturopathy, etc etc, which seemed to help in the beginning (in amongst all the doctors who didn't know what to do with me). Then as the headaches/migraines/face pain got more intense I did about 10 years of orthodontic work (they found jaw joint damage and mal-occlusion), including dozens of 'teeth' splints and braces for 2.5 years. That seemed to help a bit for a while. Then the pain intensified again. I then tried another round of practitioners, complimentary and orthodox, to no avail. Then, one day I was on antibiotics for something else and the facial/maxillary/left frontal/ temporal pain seemed to ease...so I thought maybe it was chronic 'sinus' after all. Sooooo I went through about 8 different antibiotics (stuffed my stomach up)....the antibiotics seemed to help for 3-4 days, then the pain would come back. I saw another ENT specialist who said I had chronic infective rhinosinivitis (as demonstrated on endoscopic exam), then I saw another ENT who said everything was fine with my sinuses! Meanwhile the intense pain continued day and night. Last week a new GP I saw said 'it might be neuropathic or migraine-like face pain' and tried me on Lyrica. I was only on 1 x 75mg at night for three days and I slept like a baby! then the pain would creep back during the day. Unfortunately I couldn't bear the side effects. So as of today I'm trying a 'naturopathic approach to neuropathic pain' including sublingual B12, R-alpha lipoic acid, acetyl-carnitine and EPA/DHA (Fish oils)! I'm going to give that a go before reverting back to the 'big guns'!"

Now in addition to this, the last few nights in desperation, I cut down the electrode pads (carefully missing the wire!) to my TENS machine (I have used this for years for neuopathic/pudendal nerve pain in my pelvis) and placed them along the second division of the trigeminal nerve distribution (above TMJ and beside nose/on cheek). I used this setup for 2x 1 hour sessions the last two days, and last night I only woke twice with the pain and went back to sleep! (I am usually roaming the house for hours) So I am cautiously excited. I need to find some face electrodes now....
In the mean time I have started the supplements as described above. So we'll see....
Posted 10/19/2012 2:44 AM (GMT 0)
Lisk,

Welcome to the forum! This is a wonderful place for support and sharing information!

I myself am struggling tonight, so I'm going to keep this brief. But before I sign off for the night, I wanted to let you know that it is actually possible to implant a permanent stimulator (same device as a spinal cord stimulator, or scs) with leads tha go to the trigeminal nerve. I have such a device, but I use it for chronic eye pain. I'm not going to go into a whole lot of detail at the moment, but google "trigeminal nerve stimulator," or "peripheral nerve stimulator (pns)." There is a decent amount of info out there, as they are sometimes used to treat patients with trigeminal neuralgia. Of course this is something that you'd have to discuss with your doctor, and I don't even know if you'd be a candidate for a stimulator, but seeing as you are having some success with the tens unit, I thought that I should share this with you. I'm happy to share more with you when I'm feeling better, but right now I need to go crash.

Skeye
Posted 10/19/2012 6:45 AM (GMT 0)
Thanks Skeye, I'll look into it. Hope you bounce back quickly!
Lisk
Posted 10/19/2012 8:51 AM (GMT 0)
Welcome.... I am fairly new to HW myself but everyone is kind and helpful. I too have atypical face pain. I started with migraines at 12, started having TMJ problems in college (had lower jaw broken and shifted foward), and now have secondary atropic rhinitis, Empty Nose Syndrome, after 6 sinus surgeries. I have tried facial tens before and got small pads from metronic (20 years ago). I did get some relief but the next surgery ended that. I have tried many things from oral meds to a block I would do myself by placing a long cotton tipped applicator soaked in marcaine against the spheno-palentine node which is located at the back of your nasal cavity. I have an accupuncture appt this week. My PD daughter does it. Please let me know how your natural approach works.

Bad night..... I work this weekend, fri.,sat.,and sun and have not started on a power point talk I am giving our docs next Tues on non-invasive ventilation.

On top of this we took one of our maine coon cats to the vet with a flare of her mouth sores. In addition to antibiotics she too is on pain meds, buprenorphine aka buprenex, the vet says it works well in cats and all I need to do is get it in her mouth. In fact we both are waiting for meds to work.

Let us know how things go. wink
Posted 10/19/2012 2:55 PM (GMT 0)
 

      Good morning Lisk!...and welcome!

         We all are so sorry that you are suffering like this, and hope that you will find some sort of relief for it.

     I myself do not suffer from the same symptoms, but do have pain in my jaw..TMJ, and it can really get me down at times. I never thought about trying the Tens unit for TMJ...and may have to consider it in the future when I'm having a flair.

  Have you tried different sleeping positions? I have and found that laying on one side vrs. the other helps some with the TMJ problem.

     Sorry I could not be of more help here for you...but wanted to get in a warm welcome.

    Take care,

   SE

Posted 10/19/2012 4:21 PM (GMT 0)
Good morning Lisk

I am glad you started an intro post for yourself. So once again, welcome to our chronic pain forum.

Like I was saying, your story sounds much like mine. I have been suffering with 24/7 headache for more than 12 yrs now, also a tmj disorder but that is suppose to be corrected now. Like yourself I did tons of orthodontic work. On top of that my med list is quite long, which not one med helped my head pain. Also have don many types of treatments, seen all kinds of specialists, clinics, etc. Right now I am getting worked up for an occipital nerve stimulator. You could possibly benefit from this yourself so do a google search on the stim as there is a lot of info on the net. I have also found a fb group of those who have the stim or getting it and have read many encouraging and positive stories.

I hope you keep posting with us and let us know how you are doing.

Take care

Suzane

Posted 10/20/2012 12:04 AM (GMT 0)
Thanks for all your encouragement! It's nice to know you're not alone. I hate raving on to family/friends...it must be so boring for them, and I have to smile all day at work (only 3 days a week thank goodness).
The TENS is going really well so far. Its facial use is quite controversial on the net..some say don't use it at all on the face, but if you look at the TMJ/dental sites they talk like it's quite mainsteam! Anyway If you use it along the nerve on each side and not across the left/right side of the face I believe it's OK. Refer: www.site.lgmedsupply.com/ElectrodePlacementChart.pdf
www.pubmedcentralcanada.ca/pmcc/articles/PMC2175474/pdf/anesthprog00285-0040.pdf
www.han****egler.tripod.com/omfs/bush/bush09.pdf

A note on the supplements I described earlier...I had to stop acetyl-carnitine as it gave me an increased headache!!
Posted 10/20/2012 12:17 AM (GMT 0)
Oooh that last website was:
www.han****egler..tripod.com/omfs/bush/bush09.pdf
I don't know where the asterisks came from!
Posted 10/22/2012 6:20 AM (GMT 0)
Like the posters before me, I also suffer from facial pain. I had both sides of my TMJ replaced a few years ago due to bone fusion. The opening was getting down to the single digits and progressing very rapidly. The surgery was purely for function, not pain control. My surgeon required that I see a counselor prior to the TJR to make sure I understood the outcome. So-here I am a few years later and able to open enough to have a normal conversation and eat basic food. Last week my opening measured at 14mm. Pain-wise things are still pretty crazy. I have a great PM that I see for various medical reasons who is able to keep the pain liveable.

In addition to nerve medications, I have found dry needling to be very beneficial for facial pain. It is covered by my insurance, but it can be difficult to find a certified therapist. I go to PT twice a week and we start out with the needling. It is different than acupuncture in the way that the needles are used.
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