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My wife has been diagnosed with Trigeminal neuralgia

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My wife has been diagnosed with Trigeminal neuralgia

Old 06-18-13, 09:58 AM
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My wife has been diagnosed with Trigeminal neuralgia

From wikipedia:

Trigeminal neuralgia (TN, or TGN), also known as prosopalgia,[1] suicide disease,[2] or Fothergill's disease[3] is a neuropathic disorder characterized by episodes of intense pain in the face, originating from the trigeminal nerve. The clinical association between TN and hemifacial spasm is the so-called tic douloureux.[4] It has been described as among the most painful conditions known to mankind.[5] It is estimated that 1 in 15,000 or 20,000 people suffer from TN, although the actual figure may be significantly higher due to frequent misdiagnosis. In a majority of cases, TN symptoms begin appearing more frequently over the age of 50, although there have been cases with patients being as young as three years of age. It is more common in females than males.[6]
The trigeminal nerve is a paired cranial nerve that has three major branches: the ophthalmic nerve (V1), the maxillary nerve (V2), and the mandibular nerve (V3). One, two, or all three branches of the nerve may be affected. 10-12% of cases are bilateral (occurring on both the left and right sides of the face). Trigeminal neuralgia most commonly involves the middle branch (the maxillary nerve or V2) and lower branch (mandibular nerve or V3) of the trigeminal nerve,[7] but the pain may be felt in the ear, eye, lips, nose, scalp, forehead, cheeks, teeth, or jaw and side of the face.
TN is not easily controlled but can be managed with a variety of treatment options.




Does anyone here have or know of anyone who has this ailment? I'm wondering what we can expect here. She went to the ER last week with a suspected brain aneurysm, and after a CT and an MRI, that was ruled out. Now they have officially diagnosed it as trigeminal neuralgia. The "suicide disease" part is kind of terrifying.
Old 06-18-13, 10:23 AM
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Re: My wife has been diagnosed with Trigeminal neuralgia

Sorry to hear about your wife. Have you been to a neurologist yet? Sounds like one of those chronic conditions where you just have to bear it, and enjoy the good days. Nerve pain is such a bitch. I have a chronically pinched ulnar nerve which can be quite miserable at times. That's just one main nerve. I can't imagine having all your facial nerves given off pain signals.
Old 06-18-13, 10:57 AM
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Re: My wife has been diagnosed with Trigeminal neuralgia

The next step will be to go to a neurologist if it doesn't improve in a few weeks. The onset of this was really sudden. She's only 30, it doesn't usually affect people that young.
Old 06-18-13, 11:43 AM
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Re: My wife has been diagnosed with Trigeminal neuralgia

She should definitely see a neurologist, if for no other reason than to get a second opinion. It sounds like they arrived at the diagnosis by exclusion. A neurologist can follow her over time, obtain some lab tests, and get a better idea of how accurate the ER diagnosis was.

What was her presenting symptom(s)? Severe headache? Temple/jaw pain? Was this her first time? Has she ever had Lyme disease or some other kind of infection?
Old 06-18-13, 12:28 PM
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Re: My wife has been diagnosed with Trigeminal neuralgia

Radiation therapy is an excellent treatment option for TGN. They basically ablate the nerve with radiation so the pain will cease. It's a fairly complicated procedure in the background, but relatively easily on the patient. Only takes a day.
Old 06-18-13, 12:33 PM
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Re: My wife has been diagnosed with Trigeminal neuralgia

Originally Posted by hahn View Post
She should definitely see a neurologist, if for no other reason than to get a second opinion. It sounds like they arrived at the diagnosis by exclusion. A neurologist can follow her over time, obtain some lab tests, and get a better idea of how accurate the ER diagnosis was.

What was her presenting symptom(s)? Severe headache? Temple/jaw pain? Was this her first time? Has she ever had Lyme disease or some other kind of infection?

Her presenting symptoms were pretty much all of the above. It was her first time, and no, she's never head Lyme disease.
Old 06-18-13, 01:21 PM
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Re: My wife has been diagnosed with Trigeminal neuralgia

Lyme disease was my first guess as well. You could try a Neurontin/Amitriptyline/(& sometimes Prozac) mix of drugs. Neurontin & Amitriptyline have low instance of side effects and do a nice job of controlling mild-to-moderate nerve pain.
Old 06-18-13, 01:30 PM
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Re: My wife has been diagnosed with Trigeminal neuralgia

Wife has it. Lives in pain pretty much all the time. Pain is intense to the point she almost cries. Tried lots of treatments, but nothing seems to work. For years she was pushed back and forth between her doctor and dentist as to what was causing the pain (teeth or jaw).Watching her try to eat after the pain has been strong for a few days is really hard. She has to eat, but every jaw movment is so painful.

My wife is hella tough cause I don't think I could take it. Sometimes it goes away for a few days, but never for long.

Your wife has my sympathy and I hope they find something that helps her.

PS Wife takes Neurontin. Might make ease the pain but hard to tell because it is still so bad.
Old 06-18-13, 01:32 PM
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Re: My wife has been diagnosed with Trigeminal neuralgia

Originally Posted by New-AgeOutlaw View Post
Wife has it. Lives in pain pretty much all the time. Pain is intense to the point she almost cries. Tried lots of treatments, but nothing seems to work. For years she was pushed back and forth between her doctor and dentist as to what was causing the pain (teeth or jaw).Watching her try to eat after the pain has been strong for a few days is really hard. She has to eat, but every jaw movment is so painful.

My wife is hella tough cause I don't think I could take it. Sometimes it goes away for a few days, but never for long.

Your wife has my sympathy and I hope they find something that helps her.
What has she tried? I'm wondering if a concentrated capsaicin cream would help.
Old 06-18-13, 01:33 PM
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Re: My wife has been diagnosed with Trigeminal neuralgia

Originally Posted by New-AgeOutlaw View Post
Wife has it. Lives in pain pretty much all the time. Pain is intense to the point she almost cries. Tried lots of treatments, but nothing seems to work. For years she was pushed back and forth between her doctor and dentist as to what was causing the pain (teeth or jaw).Watching her try to eat after the pain has been strong for a few days is really hard. She has to eat, but every jaw movment is so painful.

My wife is hella tough cause I don't think I could take it. Sometimes it goes away for a few days, but never for long.

Your wife has my sympathy and I hope they find something that helps her.

PS Wife takes Neurontin. Might make ease the pain but hard to tell because it is still so bad.
Has she never had a consult with a radiation oncologist? I'm surprised that if it's not managed via medication that nobody has considered RT.
Old 06-18-13, 01:47 PM
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Re: My wife has been diagnosed with Trigeminal neuralgia

They tried various types of pills. The main thing they tried was a device in her ear lobe that produces a shock or something (She said it felt like vibrating). She used this on for 2 weeks off for 2 weeks for about 9 months. The specialist had to attach it every time, so a visit and bill every month.

They want to try a surgery that they don't know if it will work. She has resisted so far, because the only guy close that does it is about 400 miles away and he insists on payment upfront (which we don't really have) and then us get reimbursed by insurance (which will only cover about half the expense)

We keep hoping my job will offer insurance soon, but not so far.
Although I don't like Obamacare (mandadtory and fines part) The new health care laws may end up helping to get this procedure done for her.
Old 06-18-13, 01:49 PM
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Re: My wife has been diagnosed with Trigeminal neuralgia

Try and supplement magnesium, it helps with so many things it's ridiculous (energy, mood, pain etc.).
Look for one that contains magnesiumcitrate and preferrably vitamine b6. Do not purchase a supplement containing magnesium-oxide, as it's hardly absorped (6%) and will give her diahrea.
You're looking for a maximum of 500mg magnesiumcitrate.

http://www.psychologytoday.com/blog/...um-pain-relief

Best wishes to your wife.
Old 06-18-13, 02:41 PM
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Re: My wife has been diagnosed with Trigeminal neuralgia

Originally Posted by New-AgeOutlaw View Post
They tried various types of pills. The main thing they tried was a device in her ear lobe that produces a shock or something (She said it felt like vibrating). She used this on for 2 weeks off for 2 weeks for about 9 months. The specialist had to attach it every time, so a visit and bill every month.

They want to try a surgery that they don't know if it will work. She has resisted so far, because the only guy close that does it is about 400 miles away and he insists on payment upfront (which we don't really have) and then us get reimbursed by insurance (which will only cover about half the expense)

We keep hoping my job will offer insurance soon, but not so far.
Although I don't like Obamacare (mandadtory and fines part) The new health care laws may end up helping to get this procedure done for her.
Sounds like they tried a TENS unit. Is the pain associated with just one side of the face? Maybe Hahn can provide a guess on if this could work or not, but maybe trying "mirror therapy" is an idea. It's sometimes called mirror-box therapy if you do do some Googling on it to try it at home.

Speaking as someone who happens to have two chronic nerve pain issues (phantom pain & neuropathy), you gotta do a shotgun approach and try different things.

Also, distractiondistractiondistration. She should have a smart phone while she's up and about, listening to a podcast as she's walking, and a laptop while she's watching TV. I trained myself to have ADD and find social and political causes I believe in so that I always have something going on in the back of my mind. When I was a kid I'd watch professional wrestling just so I could vividly create and choreograph matches in my head when I had to sit through Church. Even when I'm sitting still I'm chewing or picking at things... I read something once about how people are trained to compartmentalize things to resist torture. I suspect the two are similar.

A large part of any pain signal is subjective and requires active attention in order to process it. I know it sounds a bit odd, but the less you acknowledge the pain she is in the better. You still want to respond to her emotional needs and let her know how brave she is and how you admire everything she does despite the pain she's in, but give her something else to think about when she's experiencing acute pain.

At least that has been my experience. Pain is such a crazy thing. As I'm writing this the fingers in my left hand have curled so tightly that they have punctured my palm and are pushing out the back, and my forearm has a cold-burning feeling that feels like it's coming from inside the bone. These are all vivid feelings my brain is saying is real while my paralyzed limb just sits there. All this because I've divided part of my attention span to pain and my arm is going "Oh yeah... you mean this kind of pain?"

So I'm off to think about things elsewhere so that the pain wanders away.

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