Trigeminal Neuralgia/Atypical Facial Pain Syndrome? Can't anyone help me?

[yonnie]

I'm a 28 yr old female w/ TN or maybe ATN?  The doctor's say TN, but also say that my symptoms aren't all typical.  I have always had chronic sinus problems. I assumed genetic--my dad suffers same problem--unusual number of sinus infections--allergy symptoms, taking o-t-c sinus-meds almost daily to ward off headaches and runny nose new PCP in 1/01 recomended I see an ENT. ENT said my sinus were deformed, that was why I kept getting infections, the problem would escalate over time-recommended surgery. 1st fix sinus openings, a few months to heal, then another to fix a deviated speptum.  After 1st op.(4/18/01) pain started around my right eye.  Near my tear duct, shooting along my cheekbone and eyebrow to my temple.  I complained to the surgeon, but he said it was scar tissue and would be fixed w/next op. Pain kept increasing, I went for 2nd opinion.(8/01)2nd, ENT looked at 1st CTs and new ones said yes to scar tissue, but said pain I was describing sounded more like neuralgia.  PAIN CONTINUES TO GET WORSE. Right side of face constantly feels hot, swollen, right eye feels swollen, sore, bulgeing. Can't stand glasses on face. reading gets difficult.In addition to constant dull, hot pain--jolting spasms hit corner of my eye, sometimes so bad they knock me to my knees.  By 10/01 can't work.  can't wear contacts now, reading brings spasms (why is eye so affected?), cold, talking.  I've seen three neurologists.  Tried standard drugs nothings worked.  Why no remission? Docs say not much left to try-prob perm. surgery prob not opt. since it was prob tirgger. Please help. Want to die

[yonnie]

We've tried: Neurontin, butalbital,tranxene,klonopin (I continue on this--am increasingly addicted, but the doctors feel it helps with the depression and painc disorder that I cannot deny having acquired as a result of this mess,carbitrol,keppra,baclofen,topomax,darvocet, nothing works.  Most just make me sleepy, zombie-like.  The mental confusion with the neurontin was so bad my doctor actually stopped talking to me and would only address my husband during one appointment.  The carbitrol landed me in the hospital with liver toxicity.  The keppra was the worst, it aggravated mood swings and panic attacks.  It was the weirdest feeling.  I was aware I wasn't behaving rationally, but couldn't seem to control it.
I'm allergic to codeine and morphine.

I grow increasingly frustrated because some of my symptoms seem so unusual.  Like the problem with reading.  I'm so myopic I can't even make out the eye chart without corrective lenses, and now I can't wear them, so I feel as if I'm blind, but if I hold a book or paper right up to my nose--or my face inches from the screen--I can read.  But after a while it triggers the spasms.  The first two doctors didn't seem to know why.  The third finally said it's just that my eye is the focus of it for me for whatever reason and when I read and my eyes move back and forth it irritates it.  I've asked them all if I should begin to learn to function without my sight, ie, reading braille, etc.  but they keep saying wait.  it's a pain thing not a vision thing.  Wait for what?  I'm trapped in this prison of pain.  Today has been a good day.  Every few days when the pain is tolerable, I force myself to look for answers for as long as I can.  I was so excited that I finally got to post a question to this site that I logged back onto the computer a second time.  I'm paying for it now.  So much pain.  Feels like My eye is going to pop out of my head.  

Thanks for all the good wishes.  I can't really give up.  The fact that I'm still typing through my tears is proof.  My doctor recommended I see someone for the depression and panic.  Took six weeks to find one who accepted my insurance and was accepting new patients.  My first appointment will be end of May.  Sometimes I do pray for death--I'm afraid if something doesn't change soon I'm going to end up looked up on the sixth floor of a hospital somewhere--but mostly I pray for the Grace to deal with this with dignity and grace.  

Here's some gallows humor--I was always considered the strong one among my family and friends, How arrogant we can be!  Here's something even worse, I was the kind of person who used to carry a book EVERYWHERE!

Yonnie

[CCF-Neuro-M.D.-JT]

Sorry to hear about your symptoms. Trigeminal neuralgia can be quite debilitating if the pain is not adequately controlled. Your symptoms do sound like they could be atypical trigeminal neuralgia (TN), but it's possible that there may be nerve damage from your prior sinus surgeries which is a bit different than TN. Be careful with repeat sinus surgery as there is a chance that it may make things worse.

One thing we always do in pts with TN is get an MRI to look for potential causes in the brain. If there is a small tumor (very rare), or abnormal blood vessel pushing on the trigeminal nerve (face nerve that provides sensation and pain fibers to your face as well as other functions) then neurosurgery to remove the offending agent may be helpful. I certainly do NOT mean to alarm you, but there is another important reason to get an MRI. In a young woman with trigeminal neuralgia, we always have to think of MS as a possibility.

In the meantime, pain relief is the primary goal. Not sure what you've tried but here's a list of suggestions: neurontin, gabatril, trileptal, baclofen, tegretol, dilantin, topomax, valium, elavil. I would shy away from narcotics due to its addictive potential. One thing that worked in the past before all of these fancy medications came out is having your neurologist put lidocaine or local anesthetic on the end of a sterile swab (long Qtip) and shoving it directly into you nostril on the side of the pain. This has helped many patients in the past and is thought to be due to direct anesthesia of the overstimulated pain fibers. Finally, consider a pain specialist to help you.Best of luck.

[Clarisse]

Hi Yonnie,

It's Clarisse again.  I really sympathize with your despair at not being able to read. Last year I had an eye operation with not so good results and couldn't read for a long time and glassed didn't help. Eventually the problem was resolved, but I discovered these magnifying sheets--about 8 1/2 x11--that I could lay on a book or newspaper. Cost about $1.50. It saved my sanity as I LOVED to read; my favorite pastime. I found them in a drugstore.

RE: the pain: You say you are allergic to codeine or morphine. Is that because you have to swallow it? In other words, does it cause problems when you ingest it? Maybe there are other ways you could take it that didn't go thru your GI system.

Gee, that ENT did you no favor. I'm not an MD--far from it--but have you had your eyes examined by an opthalmologist?  Is your optic nerve okay?

Please don't give up hope. Glad you're seeing someone about your panic attacks, etc.  Keep writing. You are not alone.

P.S.  I have yet to post with my own problems. Am awaiting results from an MRI. Again, try some pain sites and if there is a pain management clinic near you, wouldn't hurt to contact them.

[donsat]

A related discussion, Left side upper missing teeth pain was started.

[gingerfromtenn]

I know some of what you are going through.  Two years and 6 months ago I had maxillofacial surgery to correct my bite.  Severe pain on left side of face started 7 days later.  I went to many different types of doctors - finally diagonoised with damage to 5th cranial nerve, V2 path.  I've tried most of the usual medicines - they either did not touch the pain or the side effects kept me from functioning.  My boss is wanting me to go on long-term disability - I really cannot perform like before.  I don't know what to do.  The pain gets so bad and nothing seems to stop it.  I have had some temporary success with Dr Max King in Abilene, Tx, but he treats all pain like trigeminal neuralgia, not what I have.  But I have had alot more "good" days since seeing him.

[winky]

Hi there,
sounds like you know something i don't. My friend recently overdosed on mscontin due to chronic pain from cluster headaches and dealing with being disabled thus. Now docs say no more narcotics for pain and friend is "kickin" the morphine without any advice ...just klonopin from the psych doc.
We are hoping to get to a headache specialist within a week or two.
I'll go to the painfoundation.org and see what rights are given for chronic pain sufferers who overdose. this is a journey i wouldn't wish on anyone!!

regards,
winky

[s.mcm]

I have nerve damage due to shingles in my ear.  My left side of my face is paralysed and I have facial pain and severe headaches because of this for 14 years now.  (I am  45) All I can do is take pain killers.  I am also allergic to codeine and morphine.  For years I was on demerol and percoset.  I tried Stadol and became terribly addicted.  I am now on Toradol which is non- addictive and working great for the pain.  It is also an anti-inflamatory and helps my face.  Good luck.

[tena]

Hi Yonni,  I'm not a doctor but I sympathize with you. I had excruciating pain years ago on the right side of my head, temple, ear, face, cheek and also the back of my head, my scalp was so sore, I couldn't touch it. I wound up in the hospital in traction because a neuro claimed that I had herniated disks. Went to several more docs, no one could figure out what was wrong.  I finally found an ortho who diagnosed TMJ, checked my so called "herniated disks", my spine was fine, nothing wrong there.  Did you have your jaw checked out?  TMJ has all sorts of strange symptoms and they can be extremely severe. Don't give up, keep going to doctor after doctor until you find help, it's out there.  The doc who would only speak to your husband is very insensitive and I wouldn't bother with him/her again.  Find a large teaching hospital in a city......Good luck......Tena

[Clarisse]

Dear Yonnie,

I registered with this forum. I intended to do it sooner or later, but had to respond to you.

You mentioned trying all the standard drugs: What does this include? Neurontin? Tricycclic antidepressants? Opiates?

You are too young to suffer like this. DEMAND pain relief while the docs take their time figuring out what is wrong. They're not the ones who are hurting!

Try the painfoundation.org. Know your rights! It's an excellent site and was developed for people like you.

Keep trying!

Clarisse

[Skeeter D]

Dear Yonnie,
What meds were tried? In 1997 I suffered with TN for 4 months before a Doc diagnosed TN and prescribed Tegratol. Within two months I was totally pain free!
Good Luck and don't give up!
Skeeter D