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Living With Facial Pain

Will this chronic face pain last forever?


#1

Hiya, I’m Elaine and have a question. Does anyone have any idea how long this chronic facial pain will go on for. I’ve had it for 12 years now and am losing hope of it ever going away. I take 600mgs Lyrica (Pregabalin) a day and sometimes Ibuprofen and Codeine in between.


#2

Hi Elaine
If I knew I could be Elaine here-I would be.I am Elaine ,too-but chose Ellen cause I figured all the Elaine’s were taken.
Lucky you!
I don’t know.Not sure what you are diagnosed as.
I just find this site such a God-send.No one else gets it.
I am new to the torment.You are amazing.12 years.
Wow.
I hope some of the more senior members can help.
But if you have done 12 years with the drugs that you have then maybe a tweak would tide you over for a bit longer.I have only had my stuff for a year(still no firm diagnosis!) and am running out of meds to try.
Good luck
The Other Elaine


#3

And I meant " diagnosed with".
I think I was going to say "diagnosed as having"but lost my train of thought.
I am so tired of the drugs.
I experimented with Sudoko’s yesterday.before my nightly dose of gabapentin I was able to get about half of the harder puzzles.After-the squares were empty aside from all the little cheat numbers.
War on drugs should start at doctors offices.But only after they fix the problem


#4

Hello ellen5 (Elaine)

Many thanks for responding to my post.

I have seen a few neurologists during the past 12 years including Professor Zakrzewska from the Eastman Dental Institute and the only diagnosis I have had is “facial neuropathy”. I have tried Gabapentin but they make me so drowsy. I have also been prescribed anti-depressants but they just make me even more drowsy so can’t take them.

It all started with the right half my tongue becoming numb, then a constant throbbing pain in my right temple and numbness that spread all over the right side of my face and head. One day it feels like tooth-ache and the next it feels like ear-ache. What are your symptoms and have you ever been given a specific diagnosis? Also, what meds have you tried?

It’s really strange but when I visited my dentist before Christmas the receptionist there told me she has the same facial pain as myself. She said she wanted to give me a hug as it was so rare to meet someone who understood what the pain really feels like. (She didn’t give me a hug though as she had an awful cold at the time):relieved:

Best Wishes, Elaine


#5

Hi Elaine
I am so new to this-you are a veteran.
If you have not gone to new introductions-maybe if you start there some of the other veterans can give you advice.
For me-mine is like a burning tooth ache in one tooth which is a 24/7 thing.I had 5 teeth pulled last year.Two of them were for sure good ,but the pain was surreal,and then the pain would jump to another tooth -all on the lower right side.Sometimes the tooth seems to expand and take up my whole head.And I have the electrical jolts only if the gum at the front is touched.I have a transitory deep ear ache that is so hard to explain.I just want to jab a knitting needle down my ear and kill it once and for all.
Mine started after some dental fillings during sleep dentistry,so I don’t know if neck positioning during the procedure pre-empted this-or a needle stick,or it was gonna happen anyways.
I wish all dentists and student doctors needed to review this web site and write a report on facial pain.People here have way more info.The only problem is they don’t have prescription pads!
Some of the alternative info is.Vitamin B12,hot pepper cream,vitamin D.If you have not browsed that please take a look.I am pretty sure some of the senior members will respond to you soon.Sometimes weekends are slow-and I just find that there is hope here for people and don’t want new people to wait.I am like a welcome puppy.
I really hope we find out what we have.I have a new specialist dentist next week and some of my nurse sisters will be going with me.I have had enough and I don’t think they quite get it because I am usually the healthy one.
Anyways-we will stay in touch.
Have a good day
Hugs
Elaine
Have you tried clonazepam?It is good for burning


#6

Hi Elaine
I also have a sort of numbness on the right side of my face.It feels like I
have a skin tightener on it.Also-the very painful right side of my face
has few wrinkles-the left normal side is all wrinkled like is normal.It
looks like I have Nanoblur on the right side of my face.I ask all the
doctors if they could do the same to the left side without the pain.I
swear,I am pick-up material on the right side.Then I smile my toothless old
hag smile and they all go a running


#7

I too fell victim to a dentist having to back teeth prepped for crowns, and my life changed. I’m at 3+ years in. I’ve seen countless dental professionals and doctors. Teeth removed, brain surgery, and all alternative methods. I’ve tried everything. I take Neurontin, Vimpat, 2 BP meds, Zoloft, Clonazepam and here is what I know, for me anyway…there is no fix. There are good days and horrible days. The good days aren’t that good. I really only have good moments now. If I’m asleep I don’t feel a thing. I love sleep now. As far as meds go, it is a yo-yo game. Changes, changes, and more changes. I build up a tolerance to drugs, like most people. Hence, the need for regular changes. Neuropathies are not easy to treat. - speaking from my experience only.


#8

I am thinking there could be another category on this site-dental treatment
followed by neuralgia.Maybe we could find a connection some where.The
doctors don’t seem to want to dig further-I guess legal stuff.But really-if
I was a dentist I would want to know what can happen and what to do.
I am so sorry that things are so sucky for you and hoping for a permanent
remission for you.Hoping for permanent remissions for all of us.
Now if I could just have a diagnosis that makes sense,instead of doctors
picking and choosing from my symptoms to fit the category of neuralgia that
they know.


#9

When I did demographics analysis on the member profiles here a few years ago, I found that over 450 patient records indicated that the first doctor seen was a dentist, out of 1800 or so records analyzed. Dentists are regrettably not well educated in neuropathy or neurology. So I wasn’t surprised by learning that only 125 or so of the patients who saw a dentist had their facial neuropathy recognized promptly, and referred to a neurologist or other medical professional. Many had useless dental procedures performed, and some had multiple extractions as the pain seemed to “move around”.

Regards, Red


#10

Elaine: Describe the type of pain. Is it sharp, electrical jolts followed by no pain and then another? If so, this is TN-1 which can be very receptive to MVD surgery. I had one , years ago, pain stopped immediately. However, in my case, pain returned in 4 years. On meds until about 10-11 years ago and went into remission. A few minor break throughs but still pain and drug free now. Attribute this to large doses of VB-12 I take daily , sublingually. No proof but three others in my Support Group (I am the leader in the Sacramento, Ca area) are also in remission and take this vitamin.


#11

Hi Elaine,
I’m a veteran like you. 23 years, but mine goes into remission for months at a time. That has been my life saver, but when the pain comes back after a remission, it seems twice as traumatic because I know what’s coming next. I personally believe there will be new remedies that will help us. I won’t do the MVD brain surgery because I don’t think a compressed nerve is the cause of my face pain. I read an article about a microchip that can be implanted under your cheekbone, and you have a hand held device that you wave over your face, and it turns on the microchip to send signals to your brain that stop the pain sensation. Much safer than brain surgery. It is now just being used for cluster headaches, they have yet to test it for TN and other cranial neuropathies. I also heard of a new treatment from Canada for TN related to Multiple Sclerosis, using stem cells. Also there are about 60 different combinations of meds that can be tried. If your medicine isn’t working for you, you can try a combination of others. Many of my TN friends have an anti-seizure med, a muscle relaxant, a pain medication and an anti-anxiety med. Not because this is related to anxiety, but because anti-anxiety meds seem to calm the overactive nerve endings that are causing the pain. There are many different brands in each of those categories. If one is not working, you can try another brand until you find what works for you. For sure it does take patience to keep trying different things. I hope you will get a remission SOON! Here is the cheek implant I mentioned earlier. (https://www.youtube.com/watch?v=Yg0cHz8M2_Y The device is described at 2:15 there.


#12

Ellen5 (Elaine), could you possibly change your name here to Elaine5 or Elaine with some number, or is that not possible?


#13

Hello,

I’m just behind you at 8 years or so.
Every Doctor and article has always told me that it’s a chronic, progressive condition. It’s not like a broken arm where the bone heals itself.
The pain symptoms can be treated, and many people have 100% success. Since the source of the pain is usually damage done to the nerve. With the compression, it can be padded, protected from the vein, or burned or cut. But the pain symptoms do have a slight chance of reoccurring. I have heard of a temporary type of TN that is caused by a long term viral infection. This has a better chance of disappearing. Each case is usually so unique, and each patient has individual circumstances, that there is not a “cure” that works for everyone.
I hope that I don’t sound like a Debbie Downer, but that’s what I’ve been able to conclude.
That’s why we don’t give up…! there are so many TN Warriors who have had success! We just don’t hear from them very much, as they are able to stop focusing on the pain and the fight.
After my MVD, I was 100 percent pain and pill free for 13 glorious months. It did return, and it’s been almost 3 years of the routine, pills, MRI, and dr.
I am still holding out for another surgery, I will keep fighting… :muscle:t2:
There are advances in stem cell, and nerve regeneration that would actually heal the damage… this is what I am hoping for the next generations. Maybe even a few of us. :pray:t3:


#14

I’ve had this for 4 years with no remission. In my case, it was after the extraction of an infected wisdom tooth. There are doctors who admit that there is a causal relationship between dental procedures and chronic facial pain. This is the website of our local neurosurgeon:
http://drhoney.org/dental-neuralgia/

There are different degrees of nerve damage. The most serious ones injuring the major branches of the nerve will result in permanent numbness. Injuries to smaller nerve fibers may not lead to numbness, but can still cause parethesia (tingling) and pain.

Right now, there appears to be no cure. It’s best to think of it as a chronic condition that needs to be managed, such as diabetes and high blood pressure.


#15

Hi Tiffanie, this is very interesting. Can you tell me where you read this, or do you have a link to articles or comments relating to it? Thanks, Chancery


#16

My wife has had TN for a number of years. She had MVD, but the pain returned after 8 months. We currently are exploring the viral idea. There seems to be a lot of anecdotal evidence that, in her case, there is a link. The healthier she keeps her immune system, and the lower her stress, the better she does.

Also, she received a treatment about three months ago in Rhode Island from Dr D’Amato called Calmare therapy. Since that treatment, she has been in remission. With TN it is often difficult to know what is cause/effect, but we saw enough that if the pain comes back one of the first things we will do is go back for a second round of that treatment. John Hopkins and BYU have both done research papers, and noted that, while not 100% effective, there are also zero side effects. In fact John Hopkins now uses it for pain treatment. The concept behind that therapy is to retrain the brain that the signal coming from the nerve is not “pain”, but “everythings ok here”. It was pretty remarkable to go into a treatment in a very high level of pain, and moments later that pain was down to a 1-2.

Lastly, there seems to potentially be a link between TMJ and her TN. Again, the lower the stress in her life, the less she grinds her jaw at night, and the less her pain. The Trigeminal nerve passes right through that joint, so it does seem plausible there would be a strong link between joint inflammation and nerve compression. I often wonder if “Type 2 TN” is actually TN+TMJ.

Anyway, there are a lot of things to explore out there besides medication. My wife has also decided there is a certain amount of pain she is willing to live with. On very bad days she’ll take medication, but she tries to keep that down. This helps prevent her from building up a tolerance, but it also helps make sure any side effects are minimized.

I’ve also got to say that, for us, faith has been a huge help in calming calm heads, being patient, and realizing that there is still a great deal about life to have joy in!


#17

Hi Sean
Thanks for your post.I have something undiagnosed as yet-but I am wondering if somewhere in the TMJ the nerve is being compressed.Beause my jaw started clicking about a month after the pain started after dental treatment.
I am having a hard time finding a good picture of how the trigeminal nerve gets to the face.I have had doctors deny that it comes from the same area.If you could provide me a link that would be awesome.Also have to look up calmare therapy.It makes sense.I have tried telling my brain to just ignore the pain but then the tooth it is mostly confined to grows bigger than my head and throbs away-telling me I don’t know what I am talking about.For sure I would do it.
I have a specialty dentist appointment on Monday so if you have any info as to where I can get a pic that shows the path of the nerve before then I would be very happy.
Hugs to you and your wife.


#18

TN probably does not have any one cause for every person. For some, compression is quite likely the issue. For others it could be viral. For another something else. Any damage or ‘attack’ on the trigeminal nerve can be the cause. I’m far from an expert, by my understanding is the Trigimenal nerve does pass through the joint. One thing I have come to realize as we’ve gone through this journey, don’t just take a doctors word for anything. They are often guessing just as much as anyone else.

Regarding calmare, here’s a link: http://cprcenters.com/ We live in Florida, but felt it was worth the trip to RI based on our research indicating that Dr D’Amato was the most experienced one out there for this treatment. One other thing we’ve learned, going to an inexperienced doctor can actually make things worse in a hurry. Please be aware, it is expensive and insurance will very likely not cover it. When it works, it works. It can be disappointing when it does not. If you go through the treatment it’s important to be very frank; if you don’t feel the pain dramatically decreasing, then they need to work at it more. The issue with TN sufferers is that they are accustomed to such a high level of pain that even a small reduction seems to be ok; but the treatment is meant to take pain all the way to a 2, 1, or even 0. For many TN patients, they get down to a 7 or 8 and call it good. Also, plan on the first treatment taking 2 weeks. Very often the pain comes back at some point, and follow up treatments are required. Follow ups are usually 2-4 days. Overtime, the follow ups required tend to reduce. Also, for my wife, by the time we left RI her pain was down to a 2-3. We had hoped for a 0. They told us once we returned home it would likely continue to improve. That did turn out to be the case with her.

As i mentioned, if my wifes pain comes back, a follow up treatment is one of the first things we’ll do. If it works again, we’ll feel much more confident that it was in fact the treatment that did it the first time, and not something else.

Hope this helps. Keep trying. The solution is out there, and it will very likely be a TN patient, not a doctor, who finds it.


#19

Their web site says they are opening a new place in Bonita Springs FL


#20

I once attended a presentation by the local brain surgeon, regarding surgery for TGN victims. There were about 50 attendees. He asked, “How many of you have received unnecessary dental procedures while searching for the correct diagnosis.” More than half the hands went up.

It prompted me to write to the American Dental Assoc, suggesting more coverage of this issue in the dental schools. Mostly the answer danced around the issue, and said in essence, each school decides what to teach.

Bummer!