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ATypical Facial Pain

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Posted 2/20/2011 9:31 AM (GMT 0)
I am suffering from ATypical facial pain. The pain is so severe nothing seems to help. My doctor suggest I have a simulatur placed in my face. This pain is affecting everything in my life.
Posted 2/20/2011 5:19 PM (GMT 0)
Hi Debbie~

I too would like to welcome you to HW and to the Chronic Pain family. I'm so sorry you are suffering like this and I can see how this would affect everything you do. Since I have never heard of this type of pain I found an explanation for myself and others. It's shown below.

Can you give share a bit more on how you got to this point in your treatment? Have you had more than one doctor suggest this treatment? How long have you been dealing with this? Have you tried other methods? If it were me I'd sure want to have exhausted all other options before having a stimulator implanted. But we have a lot of people on the forum who have stimulator for pain and it's changed their lives for the better.

There are lots of links and informative articles in the Chronic Pain 101 thread at the top of the page. One thing you might look at is the one on going to a university/teaching hospital. This is where most of the medical research is done and you can see doctors who are on the cutting edge of treatment. Might be something to consider.

Keep in touch...OK?
Chutz


What is Atypical Facial Pain?
Atypical Facial Pain is a pain disorder of the face which shares some features with trigeminal neuralgia. The pain may be different – most often longer in duration (minutes, hours, or continuous), and of a dull, aching, burning, sharp, squeezing, or crushing quality. Sometimes the pain may be precipitated by sinus surgery, dental work, or facial trauma. Atypical facial pain may also be caused by an injury to a small branch of one of the three divisions of the trigeminal nerve.

www.hopkinsmedicine.org/neurology_neurosurgery/conditions_main/atypical_facial_pain.html
Posted 2/20/2011 5:58 PM (GMT 0)
I'm very sorry you have to go through this, but I thank you for sharing. I really hope you find some help and feel better in any--even a tiny--way.

Facial pain to me has always seemed like the worst type of pain I can imagine. I had lingering facial pain after I had my wisdom teeth removed. It felt like someone was squeezing my cheeks and my jaw ached for a couple of months afterwards. It wasn't severe, but even then it was very hard to tolerate. It just seems so much more painful whenever anything is hurting on my face, so I can't imagine having that kind of pain for a prolonged period of time.

Anyhow!

I hope you find a good way to help this. Please keep up updated and feel free to post whatever you're going through.
Posted 2/21/2011 3:19 AM (GMT 0)
Hi Debbie,

I too suffer from atypical facial pain. My pain is located deep behind and surrounding my right eye. I have had it called many names, but suffice it to say, my condition is very rare and poorly known. I went though years of medications, nerve blocks, and other therapies, with little to no success. My neurologist first suggested a stimulator to me nearly two years ago now. She referred me to a well known neurosurgeon in the area, who has is known for the pioneering work that he has done with trigeminal neuralgia.

Anyways, the neurosurgeon looked me over & told me very frankly that my condition was very rare and unlike what he has dealt with in the past, however he believed that I might be a candidate for a stimulator, but he wanted to do more research. Well, he went off and did his research, and came back concluding that yes I was a candidate for a stimulator trial, although in all his research, he did not come up with a case similar to mine.

Anyways, I did my own research, and decided that I wanted to go ahead with the stimulator trial. We set up a date, but unfortunately my insurance denied it the day before. It ended up taking 6 mo and loads of appeals before I finally won my case.

I underwent the trial in July, followed by permanent implantation the following week. I am so thrilled with the results of my stimulator. It doesn't take away all the pain, but it usually helps reduce it by 30 - 70%. I still have my bad days/days where the stim doesn't seem to help, but they are much fewer than they were before the surgery.

I'd be happy to speak to you about any of this. It's probably best to communicate by email, just because I seem to be at a crazy stage in my life & don't always make it to check HW as often as I used to. My email is listed under my profile. I'd also be happy to share with you my own research into the use of peripheral nerve stimulators for facial pain.

My leads are located on the supraorbital and infraorbital branches of the trigeminal nerve (above and below the eye). As far as we know, this is the first time that this device has been used to treat chronic retrobulbar eye pain.

Skeye

Post Edited (skeye) : 2/20/2011 8:24:05 PM (GMT-7)

Posted 2/21/2011 4:52 AM (GMT 0)
Thank you for your kind replies. I have tried many different treatments...TMJ $2,500 tooth guard, Neurotin, Hydrocone, Topamax etc. I usually feel good when I wake up but the pain starts gradually and usually is debilitating at aound 5:00 pm. I know I am waiting for it to come so I think I get myself worked up which creates stress which leads me to more pain. It is a terrible cycle. I am excited about the stimulator because I believe I have run out of options. If the stimulator doesn't work, I am going to check myself into a pain clinic.

Thank you,

Debbie

Posted 3/31/2012 4:22 PM (GMT 0)
Hi, my name is Marina. I have been having horrible teeth pain about half a year. And nobody could tell me why. Nothing helped. I was desparate. One day I tried next thing. I make solution with Epsom salt with very hot water, I use a lot of Epsom salt. The water should as hot as u can tolerate, souk wash cloth in it and apply it to my face. Keep until gets cold. Apply again. Also ask u doctor prescribe shots, it is very important shots of B12 vitamin. Hope it will help.
Posted 3/23/2013 2:33 PM (GMT 0)
Hi I desperately would like to talk to the person who had a stimulator put into the infratrochlear and supratrochlear nerve brsnches!! I have been in agony behind and around my left eye for 18 months and have seen numerous eye and neuro consultants who all sayi have an atypical eye pain syndrome. I can't wear my glasses because of the pain and I need to wear them as I also have double vision and have a plastic prism inside the left lens which balances out the double vision. Please would this person contact me as I have never heard from anyone who seems do perfectly to match my condition. I am desperate. Thanks. Marie. Ps my email address is xxxx.

(I edited your e-mail out as I see Skeye has contacted you, thanks). --Tina

Post Edited By Moderator (Blessedx8) : 3/24/2013 10:31:41 AM (GMT-6)

Posted 3/24/2013 3:20 AM (GMT 0)
Hi Marie,

I believe that I am the one you wanted to talk to. I just sent you an email...

Skeye
Posted 3/24/2013 10:29 AM (GMT 0)
Hi Skye, thank you so much for your prompt reply. First of all, I'm so happy you found something to help your pain!!! It sounds like you went through he'll before the stimulator implant, and of all the cases I've read about online, yours send to match mine very well. Can I just ask a few questions regarding your symptoms? Where exactly around your eye did/do you get the pain? I get mine behind my left eye ( but closer to the nose side), down the left side of my nose and then just above the trochlear and up in a line up my forehead. The pain is always situated behind my eye but when I go outdoors it triggers up the infratrochlear and supratrochlear nerve pathways. The most devastating part of all this is the nerve pain is so intense that I simply cannot wear my glasses because it feels like the glass is digging deep into my bridge of my nose and behind my eye. I am shortsighted and also double visitation because I had a lump growing on the tendon of the superior oblique tendon which passes through the trochlear. The eye docs have removed the lump but the pain around this area is worse than ever. I lost my job through all of this and have been living a hell for 20 months now. I have visited numerous neurologists and neuro opthalmologists and they either say it is atypical facial pain, a pain syndrome or trigeminal neuropathy. I have been through all the main neurological psi. Killers eg carbamazepine, pregabslkn, gabapentin, nortryptaline and they all help in low dosages but seem to plateau when reach half of the maximum doseage. I live in England and yesterday I visited London moorfields eye hospital ( supposed to be one of the best in the world ) and they said there is no surgery for a pain syndrome in the eye and that I should remain under the pain clinic for pain management. However I don't remain confident about this. I have been under them did 12 months and have done nothing to help me. I am interested in your situation with the implant. Can you please tell me a big more about this snx whether you can relate to any of my case. His much does it cost? Are you in the USA? We cannt get it here on the NHS so if have to pay privately for it. Good to hear From you soon. Marie.
Posted 3/24/2013 4:32 PM (GMT 0)
Marie -

This is an old thread... so I'm locking it. Feel free to start a new thread, and welcome :)

--Tina
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