Atypical Facial Pain (anyone have any experience?)

Hello friends.

I am sorry I haven't been able to be around the forums much lately, but my wife has been very ill. We think it is what is known as Atypical Facial Pain, a variety of Trigeminal Neuralgia. It is supposedly the worst pain known to medical science. We are having trouble getting help from doctors. We have an appointment with a neurologist in Memphis on the fourteenth, but she has been suffering so badly that it has her almost worn out, I fear. The doctors here won't prescribe what she needs until more tests are done and we can't afford to have them done here and then repeated in Memphis if that is what is called for. The MRI we had done shows no abnormalities, but we need to have another done on her neck and base of the skull.

We have been to four different doctors in the town in which we live and can't get help. We are financially poor with no health insurance and have spent over $3000 already.

Even strong pain relievers do not help this pain (hydrocodone). What she takes now is ibuprofen, one and a half times the recommended dosage (3 tabs) every four hours, much more than 6 every 24 hrs (the recommended max), we also use purified Capsaicin cream (Zostrix HP) on her neck (it gets in her eyes if we put it on her forehead) which I discovered as a treatment by doing research online. I also give her tension tamer herbal tea made double strength which seems to soothe her somewhat.

This has been going on since September.

I almost feel like GOD has forsaken us, because a kinder heart or more faithful person you will not find.

What to do?

Is this that pain where if you move your jaw a certain way, you get a "god i wanna die" pain in your neck below the jaw or to the side of the jaw in the neck area? I get that sometimes, but only once in a while and Ive always wondered what the hell that is.

Hi Skyhn,

I think what you have in mind is TMJ, which I have at times too, but all I have to do is pop my jaw back in place and I'm okay again. TN/AFP has something to do with the nerve(s) that begin at the base of the skull or neck; my wife had a neck injury before we were married and I always expected something to come of it, but I had no idea it would be like this.

We are not sure this is the reason for the pain or even that AFP is what it is, but migraine medecines (imitrex) have no effect nor does anything else doctors have prescribed. We have not as yet been to a neurologist because the one here has a bad reputation, from what I have heard. We may wind up having to the hospital here before the fourteenth (our appointment date) but we are trying to avoid this circumstance if possible; we are already going to have a hard time getting to Memphis and paying for the doctor visit.

Our family doctor won't prescribe any "mind altering" drugs without more tests. The treatments for this type of thing are tricyclic antidepressant and/or anticonvulsants.

I can hardly bear watching her suffer so, she can barely eat and one of her eyes is messed up, can hardly see out of it; the eye doctor says he sees nothing wrong.

The problem is, nowadays doctors just want to make money. My grandmother was sick for many years. She has diabetes and had some kind of lung problem. She constantly had coughing/breathing problems(not TB) for over 4 years. She was told by doctors she had a certain kind of hernia up near the neck, and that it was impossible to fix, and gave her all kinds of medications. Finnaly she was going to get to a specialist who could take care of it. But before she could, it got worse. So they did more testing and she was told she had cancer on her thyroid. They got her into surgery and removed it, after it was over, it turned out it wasnt cancer.

So 4 years of wrong medications and diagnosis. I remember on TV a while ago there was an investigative thing about doctors and the #1 thing they make money from - unecessary diagonsis.

Also, in those 4 years she went to many different doctors. Some didnt even look at past medical history or charts. Several of them prescribered her medication that would have killed her because she had diabetes and they didnt know.

Yes, I'm not satisfied with the medical treatment or advice we have received from the doctors we have visited so far at all. I was never a person that went to the doctor till I contracted a South American fungus from handling wooden crates from SA (containing fruit, I was a produce man for years). Our family doctor was able to get this under control after fighting with specialists (hired by my employer) for my right to take the medicine he prescribed. I think he saved my life, but he is very old now and forgetful, he has not helped us; as he wants more tests done and I feel sure they will be duplicated in Memphis anyway. Between a rock and a hard place.

She has been resting a while now, will need massage and medicine soon. I just hope this continues to work until we can get real help; just praying the Memphis doctor will know what to do, but am afraid he will require more tests before trying any drugs, hoping he/she will give something a try before test results come back. The waiting is terrible.

I can understand what you're going through. Just remember one thing, above any medicine or treatment, you being there for her is probably the most important thing right now. Take care of her as well as you possibly can. As for the "money situation", I know this hand in hand. I even went as far as getting my girlfriend to "fake" the illness so her doctor could get medicine for her (Strep throat). If you would like, I can research some information on medical coverage that may be helpful to you. My girlfriend/fiancee last december had gullbladder stones that came within months of exploding her gull bladder. She now owes over $10,000 and can't do anything about it. So I can feel you on that part. If you want my help, I'll do what I can. I hope the best for you and your wife.

once you have a diagnosis, ask the doctor to refer her to any studies being carried out in the area. medical treatment is free, and first class, for people willing to participate in them.

if she gets the diagnosis you think shes going to, a pain specialist might well be in order as well.

just remember that most doctors are well aware of financial burdens for patients, and generally can refer you to low cost or free care if you ask for it.

Insurance is a bitch, no doubt about that. Sadly, you live in a nation that pays the most for any medical related product or service. You have now joined the rapidly growing group of people who discovered the hardships of capitalism at it's finest.

Heres a bit pulled from WebMD related to the problem:

angeln1_webmd: My daughter has atypical facial pain of the third branch of the trigeminal nerve. What can be done to help her?

Dr. Krames: That is a good one. To the user asking about atypical nerve pain of the face or atypical facial pain, I just want to say this is a very difficult pain problem. It is a neuropathic pain problem, and the treatment of neuropathic pain as stated previously from another user is the use of anticonvulsant medications and other membrane-stabilizing medications, such as tricyclic antidepressants (TCA). Narcotics sometimes are very effective in relieving this pain and may require higher doses than normal. There are, I would say, that many of these patients are depressed and anxious and need to be treated in an interdisciplinary manner. Their depression and anxiety could be addressed directly. They should participate in group therapy with other patients with the same problems so they understand they are not alone. There are some interventional therapies which work with trigeminal neuralgia of the third division that may work, including peripheral nerve spinal cord stimulators. If this is atypical facial pain, clearly radio frequency lesioning of the trigeminal nerve clearly is appropriate. I would recommend her to a practitioner of pain medicine.

Right now you said she's on Hydrocodone and Ibu. Those will do diddly-diddle-jack-shit for pain. I consider Vicodin (brand name Hydrocodone) to be an apology drug because its process, to me at least, is like "well, sorry to hear you're hurting, I can't do a damn thing about it, but I'll mess with your head to make you feel a little high!" The Ibu will work better to releave pain than the Vicodin, but keep in mind these are very low end painkillers. The RX Ibu (EDIT: now that I read it, I can't tell if she was prescribed it because by saying recommended dosage, I think you're refering to three 200mg tabs, but most doctors will prescribe Ibu 600 in addition to Vicodin) is the exact same thing as the over the counter stuff, just more of it.

So now you're at a crossroad.

Therepy is expensive. No doubt, having trained professionals dedicating their time to a single person on a daily basis is never cheap. They'll most likely conbine therepy with some other drugs, some minor pain killers like she's already getting and maybe some steroids (often used with therepy, though I don't know how much any kind of steroid will benefit the facial problems).

Or drugs.

Some doctors, out of pity (and the lack of money by the patient to go ahead with therepy) will just prescribe meds to minimize the pain, most likely Oxycodone or Morphine. Methadone, also used to keep heroin addicts out of withdrawl (Need a fix? Out of junk? Run into your local Methadone clinic today for your free highs!), is the cheapest high end pain killer you're gonna find with bad insurance. I filled a 150 count Methadone script today, patient had no insurance, and the cost was $26.96. Cheap as dirt. Hydrocodone will run ~$10 for 30 without insurance (in some cases, people with insurance will actually pay MORE than the cost of their drugs, where 30 Hydros would cost $10.34 and the patient's fixed copay is at $11.00, so 66 cents are added to the bill). But Methadone is heroin without the big 'hit' that junkies get when they inject the drug. Pretty much the same with Oxy, or any high level pain killer. Add some antidepressants and anticonvulsants and... well, let me explain this a little further. The pain killers will put her in a totally euphoric state of mind, the antidepressants will take away some anxiety and fear that psychologically elevates pain, and the anticonvulsants will completely relax all her muscles.

Oh yeah, the bad side.

High end pain killers are extremely addictive. Under the influence of them, your wife will be drowsy, unmotivated and inactive. People on these have a tendancy to completely zone out and just chill out on the couch watching TV. At higher doses, the antidepressants will, again, take away some of the anxiety and such, but it will also disable the chemicals in the brain that process happiness and love. Some of these meds, like Zoloft, can pretty much destroy emotion. Not good for a spousal relationship based on love (but sticking by your wife's side in sickness and in health shows your determination and commitment of love - be very proud of that). The muscle relaxers, well, I don't know much about those. Something like Clonazepam, probably the most common anticonvulsant, has a downer effect and causes some movement difficulty for the user. All these drugs combined would make any person an immobile, emotionless and euphoric zombie.

That, it should go without saying, is no way to live life.

Therepy is your best bet, but your money difficulties will prevent you from going along with this option. If your medical bills push you into the poverty level, you can always apply for Medical Assistance which is the government operated welfare-like insurance program. You pay no premium like you normally would with your job's program, and your copay cost differs from state to state. (Edit: I didn't see at first that you had no insurance, thought you said you had 'bad insurance, but hey its 2:00 AM)

So, some things you should look over:

- For the short term, get some better pain medications, the Hydrocodone isn't gonna cut it. From what I've read, this is very severe thing that hurts a lot and millions of Americans skip off with high level narcs with much much less pain.

- Look into the therepy programs and their costs. Check if your insurance will cover it (doubtful). Whatever company you're going through will most likely expect you to drug up your wife for the rest of her life at low cost to them instead of having to take care of the expensive therepy bills. Any fight against an insurance company is ****ing bullshit as far as I'm concerned, I deal with it every day and share as much hatred as any person who's been screwed over with prices. (Edit: Oh yeah, no insurance still)

- Check out your state requirements to apply for Medical Assistance. Is your wife out of work due to the problem? It's not that hard to get coverage on a single income that must support two people, especially when the non working spouse is unable to work due to medical conditions.

Good luck, dude.

Originally posted by The-AoD
As for the "money situation", I know this hand in hand. I even went as far as getting my girlfriend to "fake" the illness so her doctor could get medicine for her (Strep throat).

How in the world does someone fake strep throat? Culture test results are more trusted than the "OMFG YES I AM SICK" cry that doctors hear all too many times.

Originally posted by 9:35
How in the world does someone fake strep throat? Culture test results are more trusted than the "OMFG YES I AM SICK" cry that doctors hear all too many times.

Well using your doctors trust and a phone is one good way to do it. She lied to him for me, I figured it wouldn't work as well, but somehow she worked the magic and I got this "chalk in a bottle". It helped thank god. She never did tell him that it was actually for me...

Anyways that's not the point. About your idea on "Medical Assistance", that's all dependant on your income anymore. I suggest he calls about it as well, it couldn't hurt at all.

your wife wouldnt happen to be a veteran? or this problem, whatever it may turn out to be, caused in some way by her employment? those would both be good things.

Thanks for your input and sympathy folks,

It gives me something to think about and to check into (medical assistance etc.), but we have already tried for Medicaid and it seems my SSDI (Social Security Disability), our only income, puts us over the income level for that, hard to believe that we are too rich for it, we certainly have a hard enough time paying our bills and eating.

Up until she came down with whatever this is a few months ago, she was more taking care of me due to my own disability than the other way around, but I have been improving the last year or so, thank GOD for that. She also was taking care of her elderly mother, whom I now check on and do more for than I was, she lives only 100' away. I was mainly the heavy lifter etc., but now have a few more responsibilities which I don't mind, but it leaves me little time for the computer or other indulgences.

I do believe this disease process is akin to Trigeminal Neuralgia/Atypical Facial Pain because it is so intense and there is no fever or other symptoms to indicate another cause, at first we thought it was a severe sinus problem (antibiotics and saline/steroid sprays did not help, over a month) or migraine (Imitrex has no effect), but it has been so long lasting and intense (also the normal MRI) that it must be something like TN or AFP. I think Multiple Sclerosis sometimes has similar symptoms too.

I just hope we get lucky and this neurologist can identify the problem and knows the perfect treatment.

One thing that worries me a lot is that her left eye no longer works correctly, it points down and to the left. Earlier on it was pointing inward and causing double vision. The eye doctor examined her and said she doesn't have glaucoma or pressure on the optic nerve.

I love her more than life itself and she is so little, only five feet tall. She sure doesn't deserve this, but I realize that fairness has nothing to do with something like this.

Thankyou all.

P.S. Redwench, no she is not a veteran and she has not been employed for a long time. I was the "bread-winner" up until I was disabled and she has taken care of me when I could not.

We think this may stem from a neck injury before we were married (just friends then) 28 years ago; when she was turning a somersalt and someone (not me) held her feet from going over and her face was mashed into her chest.

The neurologist does not think this is a neuralgia, not sure exactly what he thinks. He lost me with his haphazard thinking and explaining. He is either a genius or doesn't know his *** from his elbow.

He prescribed Indocin, an old arthritis/gout drug and told us to call him in a week. I don't understand any of this.

I talked with an expert pharmaceutical chemist I know. I felt for you and your wife and wanted to know if there was anything that can be done.

Tegretol (Carbamazepine) - Used as an anticonvulsant for seizure disorder; and pain relief of trigeminal neuralgia.

I got that out of the drug book. I don't know what any of it means, but you can see if your doctor will try it out.

This pharmacist agreed that your wife's condition is very painful. And troublesome for doctors. Many of them don't know how to treat it properly. This was the only drug known by this person that might help this condition although it does go by other brand names.

Carbatrol
Epitol
Tegretol-XR