Trigeminal Neuralgia

Woodinville, WA(Zone 8b)

Anybody out there had experience with this?

I think I may have had very minor "episodes" in the past, but thought they were just toothaches. I am, I hope, just finishing up with what is my second real bout of this. It usually lasts about 3 days. Over the counter medications help somewhat but don't really get the pain when it's in full force. I slept with an ice bag on my face last night and that seems to have helped.

I'm 49, just short of the age when this tends to start to affect people.

Los Alamos, NM(Zone 5a)

This sounds like a bummer! Good think they can do things for it!

Woodinville, WA(Zone 8b)

Well, the side effects of some of these medications aren't so great. And the over-the-counter stuff doesn't really even touch the pain.

I think I have a fairly localized problem and it's been excruciatingly painful for me. I can't even begin to imagine what people who have widespread pain do.

I have my fingers crossed that it doesn't become a chronic problem for me . . .

Hillsborough, NC(Zone 7b)

I had a patient years ago that had to go to a pain clinic. He described it as a shooting 'shock' into his face. He said it was 1000 more times painful than shingles and actually his came after he had shingles on his face. It is a terrible condition without much resolution via meds. I am sorry you are having to deal with it. I hope you never have to deal with it again.

Woodinville, WA(Zone 8b)

Thank you for the sympathy. I appreciate it. ^_^

I'm actually thinking about getting one of those facial ice packs to wear to see if I can't bring down any inflammation with it, in case it's being caused by a swollen blood vessel or something internally . It sure would be nice to know what caused it.

I can see how something like this would really make a person jump for the brain surgery option, no matter how scary!

Hillsborough, NC(Zone 7b)

I don't remember much about what he told me - but he avoided temperature like the plague not just outdoors (walking in the frigid weather etc.) but he would not put anything in his mouth that was not room temp. Also he did not like to laugh (so sad) he said it triggered it for him.

Los Alamos, NM(Zone 5a)

I hope it doesn't become a chronic problem for you either, but if you have to go to the pain clinic, don't worry. I had to do that for my back and it was a great help for me.

Los Alamos, NM(Zone 5a)

Have you seen a doctor about it? A doctor might have some idea what is causing it.

Woodinville, WA(Zone 8b)

If it continues, I definitely will go to the doctor. At this point, I've been banking on it going away before I can get an appointment.

I would rather try acupuncture, acupressure, massage, even injections before I'd try medications. But then again, if it got as bad as they say it can get, I'm sure I'd be desperate to try more.

I can see how using your face could trigger it, and I can see how temperature could trigger it, too. I haven't wanted to smile or blow my nose in the last couple of days. And it's been depressing because the pain wakes me from sleep.

I haven't yet figured out any big triggers. I may keep a little journal when these episodes come along and then see if anything comes out of that.

Thanks again. It surely helps to be able to "talk" about it with someone.

Los Alamos, NM(Zone 5a)

You seem to be in a great deal of pain. You don't know for sure what you even have. Maybe you should go to a doctor to see what it really is. Are you sure it isn't a tooth or gum problem? An ear problem? I would get a professional to diagnose the problem, at a minimum.

Woodinville, WA(Zone 8b)

It's pretty specifically nerve pain right next to my nose that radiates into one spot of my gum. No ear pain, sinus pain or generalized gum pain. It's hard to explain, but it's a different kind of pain than those are.

You are, of course, right. I should go to the doctor and I will if this doesn't resolve itself in the next few days. The last time, that's what happened.

If it does resolve itself, then I'll just add it to the list of things to bring it up at my next regular visit. It usually takes me awhile to get myself to go see anyone. I come from one of those "walk it off" families. And I don't think that was helped by the responses I got from doctors in my first 40 years of visits, which were, "Hmmmmm. Don't know. Let's keep an eye on it and see what happens." So I tend to follow that approach myself.

Northeast, LA(Zone 8a)

I have had atipical trigeminal neuralgia since 2001. Atipical because my pain never goes completely away. I have the excruciating pain when something causes the nerve to fire. The nerve ending for me is from the ear to the inside of my mouth. It feels like the worse toothache you can ever imagine. I have had numerous MRI's but they can find nothing pressing on the nerve. As you have probably read the most common reason for this is a blood vessel pressing on the nerve. The surgery for that is pretty successful. This disease is so unbearable painful that it is called the Suicide Disease. Lyrica and percocet is the only things that have ever helped. I also use a lidocaine type cream inside my mouth at the ending of the nerve. I have tried more than 50 different drugs most in combination with each other to stop the pain. I have also gone through many visits to the pain clinic and rehab. I can assure you if I had hope that a surgery would help I would definitely go for it. You need to see a neurosurgeon to get test made.
If you need to talk dmail me and I will give you my number. Cindy

I was also just shy of 50 when this struck me. One reason it took so long to pinpoint what mine was is I had just had some major dental work done. I kept having more work done to stop the pain, including major gum reconstructions. Nothing ever helped

This message was edited Mar 13, 2009 7:49 PM

Woodinville, WA(Zone 8b)

Cindy - thank you for responding. I can't even imagine what this must be like for you. And I can totally see why they call it the Suicide Disease. Have you tried acupuncture at all?

Northeast, LA(Zone 8a)

You have mail

Waterman, IL(Zone 5a)

My mother's had it for many years. Because of her age, 82, they didn't recommend the usual surgery for TN. There is a painless procedure called "gama knife surgery" which she had done last February in Chicago. She was painless for about a year. A couple weeks ago the pain started back again in her tooth. The surgeon said it may return, but a second procedure usually takes care of it. The only medication that works for her is Carbitrol. She takes it 3 times a day and it keeps the pain in check. Most local neurosurgeons have no experience with Trigeminal Neuralgia. You need to find a doctor in a large metropolitan hospital. I can give you the name of my mother's surgeon in Chicago. He may be able to give you the name of a surgeon in your area. The hospital has to have this huge piece of equipment to perform Gama Knife surgery. It looks like a giant MRI type machine. They shoot gama rays precisely at the nerve. Mom's pain was gone in a couple days. Unfortunately sometimes the nerve grows back as in my mom's case. You're young enough to have the more invasive surgery that gets rid of it permanently.
Don't put off seeing a doctor. TN will rule your life if you don't.

Woodinville, WA(Zone 8b)

Thank you, pastime, for sharing your mother's experience. How unfair to have that at 82!

The tooth pain from this episode is almost gone now. If I press on the nerve, it still feels uncomfortable, but otherwise it's gone. One thing I've noticed with this episode and the last one is that on the last couple days of the pain, my face is slightly swollen above the nerve ending. The swelling is slight enough that nobody else notices it. And when I woke up yesterday morning, I had a very small purple bruise on my upper cheek, as well. The bruise disappeared after I had been up for a couple of hours.

That seems to indicate that I had some sort of swollen blood vessel involved.

I'm documenting this and will share it with my doctor at my next visit. It's so good to hear about what treatments and medications work so I know what the next steps might be.

Hillsborough, NC(Zone 7b)

Katie - could the bruise have been from you pressing on your cheek?

Woodinville, WA(Zone 8b)

Thanks, Missingrosie. Good question. The first time I had this, I did press on the nerve some as it seemed to suppress the pain a little. But the second time, the pain was enough that I didn't press on my face at all. Even holding the icepack up to it was done very gingerly.

Interestingly, the pain was right next to the bottom of my nose. The subsequent swelling was above that, closer to my eye. And the bruising was out toward the side of face from that, more under my eye.

And the fact that the bruise lasted for such a short period of time seems to me like it was more free-floating blood from a small burst blood vessel. This would all make more sense to me if the swelling and bruising were below the sensitive nerve, rather than above. Then it would figure that it was gravity that played a role in determining where the tissue was swelling.

It does really seem like a swollen blood vessel is likely to be the culprit. I'll report back on that and share what the doctor thinks.

Hillsborough, NC(Zone 7b)

I wonder if he will send you to a dentist
you may end up with a root canal

wouldn't it be great if it were something along those lines as opposed to something with the cranial nerves.

Woodinville, WA(Zone 8b)

From what I've read, there have been many root canals done from mis-diagnosis of the ilness, so I'll for sure get a second opinion if he recommends that. LOL

But a simple solution or different diagnosis altogether would be great, no doubt. Regardless, I have great sympathy for those who deal with this in full force!! It's pretty humbling.

Hillsborough, NC(Zone 7b)

yes chronic pain is life changing

thank goodness more and more attention is being paid to pain in our medical schools and clinics.

Woodinville, WA(Zone 8b)

No kidding.

The last time I was recovering from surgery, I think I was asked, no fewer than 10 times, "On a scale from one to ten, what is your pain like?"

Of course, for me, at the time, what I really wanted them to ask was, "On a scale from one to ten, what's your nausea like?" But that's a story for a different day.

Hillsborough, NC(Zone 7b)


I hear you!

that pain scale questioning....that's the joint commission grading them --they got to show the proof! I don't think that came out of the medical schools or new awareness!

(Arlene) Southold, NY(Zone 7a)

Katie - I was a victim of TN from May of 1990 to 12/12/2001 when I finally had the operation - Microvascular Decompression. It's the fifth cranial nerve (blood vessels pound on the nerve and that's what causes the pain) and generally occurs only on one side of the face and "usually" goes from the ear down to the center of the jaw. The pain is horrific. I couldn't even drive with the window open or the breeze caused unbelievable pain.

I was on 26 pain pills daily and got no relief.

All the dentists had diagnosed it as TMJ but my own dentist said he did his thesis on TN and he felt that was what I had.

Most people won't believe the diagnosis for whatever reason and end up getting a tooth pulled because the pain is so acute it seems it HAS to be the tooth - it isn't. Of course, being human, I had a tooth pulled!

I changed doctors (neurologists) and when the new doctor saw me and I was unable to even speak he made an appointment with the neurosurgeon. The rest is history and I haven't had a pain since the operation. As I entered the hospital I told my husband I didn't care if I died since this was no way to live.

My best advice is to call your doctor, get a referral to a neurologist and get a diagnosis.

I wish you all the best of luck and the best of doctors.

Woodinville, WA(Zone 8b)

Wow. So there are at least two good treatments here it sounds like. And pain medications are not helpful enough in the long term to be the solution for most people.

Thank you for sharing this!!

Hannibal, NY(Zone 6a)

Katie, I just wanted to tell you about something I have going on. Pirl and I spoke about this. I have a pain in my left jaw, that goes into my ear. It feels like a horrible toothache, and lasts for about 3 days at a time. My lower and upper jaw ache and it's up to my ear.

The pain however, only lasts about three days, and then goes away, only to come back later, and lasts another three days.

It is not the horrible pain Pirl describes, but it does feel like a really, really bad toothache.

My daughter is a dentist, and at first we were thinking TMJ. But after doing a series of xrays she found a small crack on one tooth that goes into the roots. She thinks the first episode of pain I had was when the tooth cracked. After the second episode of pain, we took a subsequent xray, and found the crack was a little bigger, and she feels the second episode was caused by the tooth cracking more, maybe when I bit down on something hard, and so on. I have decided against a root canal, as she said most possibly the tooth will break, and I'll have to have it out.

But I just wanted to say, do check this out with your dentist, too.

Again, the pain I had for the three days was bad, and pain medicine didn't really touch it, but it was not nearly what Pirl describes as the ongoing severe pain.

Just cover all your bases. .

Oh, and I just wanted to add that when this happens, my face swells. The first time it was bruised also.

This message was edited Mar 17, 2009 12:11 AM

Woodinville, WA(Zone 8b)

Wow, pollyk, to be honest, I would have had to hear this specifially from someone who had this going on to even consider this to be a dental issue. Early on, I did think this was due to an eye tooth that shows a small crack, probably due to braces when I was younger.

What made me change my mind about it was that 1. the pain comes for three days and then leaves, 2. my face, not by my teeth, but up higher swells at the end of the episode, and 3. I can press on a nerve right by my nose that is THE nerve that's acting up. Right now, the tooth pain is gone, but that nerve is still tender to the touch. And this last time, as it was reversing itself, the pain migrated a tiny bit toward the back of my upper gum.

I realize that referred pain does a lot of strange stuff and so it's hard to determine the root cause (no pun intended) without diagnostic equipment.

TN, they say online, typically comes and goes, although I hear from at least two of you that it can be constant.

It still seems to me (back seat physician that I am - and my doctor does give me a hard time about that) it probably is some form of irritation to the tip of the Trigeminal Nerve, rather than something going on with my tooth. But I am going to make a point to mention this to my dentist, as well, and to see what he has to say about it.

Thank you SO much for chiming in. This group has been so much more helpful that any other resource I could imagine. You are all fantastic for sharing so much information. And, to those of you still in pain, my heart goes out to you.

(Arlene) Southold, NY(Zone 7a)

As I just told Katie in a Dmail, my TN began when I was 47 and I never knew until this thread that the late 40's is the common time for it to start.

There were many periods of time when I'd have no pain for months and then it would come back in full force - all seasons. Many people said winter was worse, or summer but it struck any time of year. The best I could describe it would be a stiletto taken from boiling hot water and plunged into the side of my face repeatedly - about 60 times a minute.

I never had bruising or swelling.

Perhaps you could do some online searches, while you wait for a doctor's appointment for an MRI (which is ESSENTIAL - the neurologist would be the one to order it), to learn more about nerves in the area of your face that give you the pain.

Please keep us informed as to what's happening and how you're feeling.

Hannibal, NY(Zone 6a)

Yes, please do keep us informed, and good luck with finding an answer quickly.

Waterman, IL(Zone 5a)

There's a lot of research being done at some of the big hospitals out east. It's either Mass General or John Hopkins, and the Mayo Clinic also. There's a lot of info in the web about the surgery for TN. My mom gets a newsletter from a TN group also

My mom always pushes a spot on her face when she's in pain. She won't eat when it's acting up and gets dehydrated and weak and ends up in the hospital on an IV. We went through this 4 times in less than 2 months before she got the gamma knife surgery. My DD, sister and I each spent weeks living at her house to make sure she ate or didn't fall down. I wish she was young enough to get Microvascular Decompression surgery. There were times when I thought she may overdose on her meds on purpose to end it all. She was seeing a local neurologist for over 10 years. He was as helpful as a wart. She could have had relief 10 years ago when she was young enough to withstand the surgery.

I hope you find relief soon. The longer you have TN the episodes become more frequent and last longer. The slightest wind hitting her face would bring on the electric shocks. My mom was at the point where it never stopped.

(Arlene) Southold, NY(Zone 7a)

Even the breeze from a room fan at my friend's house had me in tears. The simple act of taking a shower was indescribable pain as the water hit my face and a bath was no better since my hair still had to be washed and the water still had to hit my face.

Edvard Munch's painting, "The Scream", is the used as a poster by some TN organizations to communicate the horrors of the pain.

Pastime - The neurologist that treated me with pills for two years was THE head of Stony Brook University's Pain Clinic and he was not the doctor I needed (or wanted) so there are good and bad in all fields. I bless the neurosurgeon every day of my life.

Thumbnail by pirl
Waterman, IL(Zone 5a)

That's wonderful. Talked to mom this morning, she's not in pain today, but she's taking her Carbitrol again which depletes the salts in her metabolism. It's not something she can fix by eating salty foods either. It's a trade off for her. How about brushing teeth? That 's one of the most painful jobs for her to do.

Woodinville, WA(Zone 8b)

Oh, yeah. That's no fun.

I'm sure you're concerned that it's dangerous (especially for the elderly) to have metabolic changes like that. Are the docs supplementing her to make up for it?

Waterman, IL(Zone 5a)

She see her regular doctor quite often. Besides her blood pressure meds, he has her taking fish oil and potasium supplements. I don't think she told him last week that she was back on the Carbitrol.

Northeast, LA(Zone 8a)

Katie just wondering about your pain. Is it still recurring?

Woodinville, WA(Zone 8b)

Hi -

Thanks for asking. I told my doctor about the pain and we elected to wait until the next (what would have been the third serious) occurrence. I stopped touching the spot, now knowing what it was.

For several months, I just had a spot at the base of my nose that would react with an odd (not quite painful) sensation when touched. Then the sensitivity migrated down from my nose to a spot at the top of my gum. I now have a lump under the lip at the top of the gum where I think my eye tooth nerve probably ends. It seems like a ganglion cyst, similar to what I used to get at the base of my finger.

Anyway, that thing is a little sensitive, but I've not had an occurrence anything like what I had before. When I next go to the dentist I'm going to ask him about this and whether it can be removed.

So far I'm considering myself pretty fortunate. How has your pain been, Cindy?

Northeast, LA(Zone 8a)

My pain has been bearable. I had the decompression surgery last spring. The nerve was damaged after 10 years of being strangled. It has been mostly dead due to the surgery but the feeling is coming back.We will try the Gamma knife next when it gets unbearable.

Woodinville, WA(Zone 8b)

Sorry for all the questions, but I'm not sure how this works.

So the nerve was "strangled"? Was it by a cyst or something or do they know? Is the decompression surgery supposed to leave it it numb or is it good when you say the feeling is coming back. When you say the feeling is coming back, you mean that the pain is coming back, too?

They can put a man on the moon - why can't they figure this out?

I'm glad that you've gotten some measure of relief, though. This is definitely a crazy kind of pain and I know now that what I experienced was but a fraction of what other people go through . . .

(Arlene) Southold, NY(Zone 7a)

I realize you were asking Riverland but, based on my own experience with MVD, the nerve and the offending blood vessels are blocked from touching (that's what causes the pain) by a small piece of Teflon.

I woke up from the procedure pain free on 12/12/01 and have remained pain free ever since from the hideous TN.

Woodinville, WA(Zone 8b)

Pirl, that's so great.

So nobody knows why they are sending out "bad" signals, just that they are? Sounds like there are likely to be multiple reasons for it.

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