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Old 10-13-2009, 04:08 PM   #1
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Atypical Face Pain - Atypical Odontalgia

All,

I have atypical face pain from having too much dental work done (7 root canals, wisdom teeth out etc) and am now taking 100mg Elavil ( Amitriptyline) and 2700 mg Gabapentin. Both drugs dont do much regarding pain relief.
My pain is constant and in the left side only. It feels like a toothache and then some pulling, tingling and cold sensation in the cheek. I dont have the shocks like trigeminal neuralgia but the pain is just constant.

Can please pleaaaase anyone with atypical face pain, facial neuralgia etc. tell me what meds they take and what worked best for them?


thank you so much
I am soo desparate!!

 
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Old 10-18-2009, 04:07 PM   #2
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Re: Atypical Face Pain - Atypical Odontalgia

I also have intermittent facial pain that I thought was related to a tooth (it is not) but did not meet the classic criteria for Trigeminal neuralgia. There are atypical form of this condition, however, that manifest themselves in different ways. You are clearly on meds to cover nerve pain. As am I. I take Lyrica. When the pain is bad I find that only Percocet relieves it. If your pain is constant, you may want to consider an appt with a pain-management specialist if you are not already seeing one. If Percocet works for you, then the long-acting version of this is Oxycotin. I know that this opens up a dicey can of worms but, speakng for myself, this is what helps.

 
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Old 10-19-2009, 07:37 AM   #3
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Re: Atypical Face Pain - Atypical Odontalgia

Birgit81 ... no meds. The onset of the TN I suffer was shocking, like being struck by lightening. Since then (8 years or so ago) the pain no longer was shocking but more like an ear ache.

That being said, I was able to control the TN with visits to my chiropractor who did some adjustments on the cranial area to relax the area around the trigeminal nerve. By the time I 'finally' got my appointment to see a neurologist (who did oodles of tests) the chiropractic adjustments (2 of them) had alleviated the pain and I was no longer suffering. The neurologist diagnosed me as having TN that responded favorably to chiropractic treatment and sent me on my way with no treatment, suggestions or medication.

I have occasional back up adjustments whenever I feel the tingling feeling along my face (it feels as though a spider is crawling along my face) and that is enough to keep the horrid pain away. I referred another TN suffer to chiropractic (my doctor who was extremely familiar with this condition) and after many years of suffering they too have obtained relief from this debilitating condition. FYI.

Quote:
Originally Posted by birgit81 View Post
All,
<snipped> Can please pleaaaase anyone with atypical face pain, facial neuralgia etc. tell me what meds they take and what worked best for them?
thank you so much
I am soo desparate!!
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Old 10-21-2009, 02:01 AM   #4
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Re: Atypical Face Pain - Atypical Odontalgia

I have the same pain and it was diagnosed as TN and was told that the decompression operation was the only cure. After the surgery I still have the same amount of pain so still have to take the 2000mg Gabapentin and strong pain killers every day but I am now completely and permanently deaf in my right ear and am unable to stand due to the nerve that controls balance being damaged as well my tongue and mouth are numb and tingle all the time. I have gone from being an active and healthy woman who lived with a severe pain to someone who has no life anymore. I am sorry to hear of your pain but oh how I wish I was back to where you are now. Please don't ever grasp at anything that might be offered to you as a cure.

 
Old 10-21-2009, 06:08 AM   #5
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Re: Atypical Face Pain - Atypical Odontalgia

I am so sorry that the surgery did not work. My sister had it several years ago but she had it at the clinic that invented the procedure in Pittsburgh. Absolutely excellent results.

 
Old 12-28-2009, 05:34 AM   #6
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Re: Atypical Face Pain - Atypical Odontalgia

I suffer from the exact same condition. Mine was caused by a pair of sinus surgeries. I experience burning aching pain in all my teeth and sinus on the right side. It is properly called Trigeminal Neuralgie, Type II.

Here is what I found worked for me:
1. Duragesic pain patch (I tried all the opioids, this is the best. To get it you have to "fail" the orthers first.) Lowers pain AND increases pain tolerance level. A nice combo. Least side effects of all the opioids and you only put on a patch every 48 hours. No pill popping. The down side: very expensive.
2. Upper Cervical Chiropractic treatment. This removed the crushing compenent of the pain. These are very specialized chiropracters that focus on the neck and atlas in your neck.
3. Maintaining a "cuddle Buddy" since I am single being able to cuddle with a friend occasionally really helps.
4. Managing depression. Uncontrolled depression makes our perception of pain much stronger and causes pain meds to be far less effective. People with TN are often depressed, and rightly so. Their life just turned into hell.
5. Physical therapy to correct related posture issues. feldincrist physical therapy is recommended
6. Attending a pain program to teach you me to manage and work with chronic pain.
7. Read the book "Managing Pain Before It Manages You." It really helps.
8. Make friends with the pain. This is a critical and life changing step.
9. Staying busy with things I enjoy. This helped me a lot.
10. Fighting for social security disabilty. It took my three years, but now that I have it finacial worry is gone and I get medicare. You don't need a lawyer. Just persistence and an appointment before an Administrative Law Judge who can approve your claim after explaining just how debilitating it is.

This is a long term condition and you will have to learn to work with it. I tried over 50 different therapies to find this set that works for me. You may have to do the same. Don't be afraid to try different meds. Try only one at a time to results are not confused.

What is ABSOLUTELY CRITICAL is working with a chronic pain doc who understands and beleive that trigeminal neualgia is real and extremely debilitating. Find a highly competent doctor whom you like; both an excellent pain management doc and your primary care doc. Females in their 30s to 40s make excellent docs. Males in ther 50s+ are often grumpy and want to be right all the time. Unless they are really good, be wary of aging male doctors with ego issues!

According to Dr Kim Burchiel, the doctor who developed the vascular decompression surgery, when the pain is constant all the time, there is only a 30% change of improvement from the surgery and all the risks. He did not recommend it for me because of my pain profile. The damage was done. But you can go see him at OHSU.

The patches saved my life. I only use name brand Duragesic. The Mylan generic are terrible. Generic opioids have 20% less drug in them as allowed by the 1985 Hatch-Waxman act. Note: Methadone really worked well on the pain, but I could not tolerate the side effects.

Good luck my dear. I hope this is helpful.

 
Old 12-29-2009, 04:18 AM   #7
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Re: Atypical Face Pain - Atypical Odontalgia

Thank you for taking the time and trouble to help me. I have an appointment at the pain clinic in febuary, there is always a long waiting list but at least here in England its free. I did see the same doc at the start of all this in2007 he was very kind and I have faith in him. As well as hoping that he will find some other way of helping with the pain I realy need some one to listen to me, my family and friends have been very good but like me are so tired of me being ill. Thanks again

 
Old 12-30-2009, 08:46 PM   #8
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Re: Atypical Face Pain - Atypical Odontalgia

The best thing you can do is become a strong advocate for yourself. You must be able and willing to advocate on your behalf. You may have to push for things you what to try but the doc my not be familiar with. Be persistent.

It is also critically important to be professional with your docs. Even though I know your life is shot to hell, you're miserable and all your dreams and plans are on hold, you've gotta stay professional. I don't mean holding back tears or anything like that. I mean really avoid yelling at any doc or anything. This is a quick way to loose their interest - pain docs have a hard job and often receive little in the way of satisfied customers and feeling good about an outcome.

Studies have shown that females do not get the same kind of response and respect as male patients do. I hate this truth, but it is the way it is. Females in pain often get dismissed for all kinds of reasons. Having a male "co-conspiritor" who is also well educated about TN who can also advocate for you. When the doc starts to write you off, they can step in and curb them with more questions that the doc did not ask or respond to adequately. Having another person at an appoitment can help with points you forget to mention.

Yyou need to be really educated about this disease. Docs know almost nothing about it, and what they do know quite often is wrong our outdated.

< edited >

When you go into your doctors appointments, bring a list with you with everything you need to say or cover. I sometimes just hand the list to the doc, they read it and get to work. This saves valuable minutes in the appointment that can now be used for treatment rather than collecting information.

So roll up your sleeves and start trying things. As it suggests in "Managing the pain before it manages you" keep a pain journal to study and understand hidden triggers. Be gentle and rest when you need it. Sometimes not pushing makes a huge difference. Acceptance of the pain and stop fighting with it is also critical. As long as you fight it and treat it as an enemy, things will not go well.

I also find help in meditation. I forgot to mention that! Its no natural I forget that it is actually part of my treatment plan. < edited > Meditation is a good way to sooth and relax the whole system. The nervous system gets all keyed up and wired and stays that way and this doesn't help us cope with the pain. Meditation can bring it down several notches. Especially when done over time. And it can be done laying comfortably on your back. Feet apart, palms up.

Finally, while I am so thankful for the patch, avoid a narcotic solution if you can. Even though the promise of the hope of no pain, or less pain, they also promise a life of opioid depenenace which is something not to take lightly. These medications can save your life, but being dependent in this way can cause problems, especially since one's tolerance always goes up and you'll need more and more over the years to maintain. Opioid dependence, while not nearly a bad as TN is a certainly a major issue with many problems.

I hope this may be helpful. There is a solution out there for you. Keep digging into modern and ancient medical systems (acupuncture was also helpful in keeping me together while I looked for a solution though it did not directly help with the pain) and try different things until you find a combination of things that help.

I doubt there will be one silver bullet. Rather for most of us, it is a combination of things that helped a little, and all together the make for tolerable pain levels.

Good luck!

Last edited by hb-mod; 12-31-2009 at 01:08 AM. Reason: Please don't post disallowed websites as per Posting Policy. Thanks.

 
Old 12-31-2009, 03:24 AM   #9
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Re: Atypical Face Pain - Atypical Odontalgia

I have a list already, as I have seen this doc before and know that he is not one to talk down to women, and god knows I have met a few of them in the past 2 years!! The resting when needed is something I have to do but take today, the pain is raging and I have fallen 3 times but all our friends have arranged a lunch instead of celebrating the new year tonight as we have done each year for the last 20 years, they have done this for me, so I will go and pray that I don't make a scene by falling of my chair. Thank you again. And I hope that you have a good and less painful new year.

 
Old 01-03-2010, 10:10 PM   #10
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Re: Atypical Face Pain - Atypical Odontalgia

I too have been having a burning ache around #5 and # 6 implants. It all started 3 years ago with a filling between the two teeth that needed to be replaced, the nightmare begins. Ended with a root canal on #5 which failed than had two apico's that also failed. The tooth was removed and I was fitted with a bridge. I continued having problems along the gums and my dentist told me to "tough it out".......Needless to say I was in search of another dentist. Found one that said I now needed a root canal in #6 so I did and still was in pain. After 12 dentists, oral surgeons, periodontist and yes, Dr Kim Burciel at OHSU I found dentist #14 who said that #6 needed to be pulled and I needed implants. Ok, Had the tooth pulled and it ended up with a crack under the gum line and the bridge was too thick and had inflamation under it. Had the implants placed healing was painful and slow but much better and finally pain free until Nov 12 09. The prosothodonist put the temp crowns on and the pain was horrible, he had to numb me to finish torgueing them on. Very very sore for 2 weeks and than alas no pain. Well, that was short lived, it's been 2 weeks now and I have this constant burning ache except when I sleep. Been to the oral surgeon and the prosodontist and x-rays look good. Now I'm so depressed thinking here I go again. I'm so frustrated I don't know where to turn, I too live in Portland Oregon who do you suggest??

 
Old 01-07-2010, 05:11 PM   #11
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Re: Atypical Face Pain - Atypical Odontalgia

Have you tried acupuncture yet? Some folks report significant relief from it.

Your symptoms are not typical for TN (which is the good news.) Type II trigeminal neuralgia (TN) usually does not give any periods of complete relief. That said, your trigeminal nerve has been significantly assaulted and obviously there is something going on with it if no infection is present (have you done a wide spectrum antibiotic for it yet? Did they change the pain?)

Another possibility is that your neck got badly wrenched during the various dental procedures, something that is common enough. Problems in the neck have been implicated in trigeminal nerve and facial pain since the nerve comes out in that area. A visit to Dr. Illo (as in I EL EL Oh.) may help. His work relieved the "crushing" component of my pain and also resolved the terrible back pain I was also suffering from. He is an upper cervical chiropracter who specializes in the neck and is able to put the atlas back where it belongs (though he does the whole back as well.) His partner Dr Fisher is good as well and doesn't have the long wait. He's in the Portland phone book. I highly recommend him, especially if you have any feelings of pain, tension, soreness in the neck, shoulder or upper back. Note, he is very popular and you may have to wait weeks. He is very good.

Thirdly, I would practice excellent self care at this time. Falling into depression or allowing existing depression to go untreated very often makes our perception of pain much worse, or even create pain in otherwise healthy tissue given how the body stores emotional trauma and suffering. Being extremely frustrated makes everything worse. I know it seems impossible NOT to be! Leaning some simple relaxation exercises and meditations will help hold you together until a more long term solution is discovered. This is where Dr. Philip Shapiro may help.

I have heard good things about Dr. Philip Shapiro MD. He is based in Portland and has a clinic with programs. The Northwest Institute for Healing Power. He has a book out titled: "Healing Power: Ten Steps To Pain Management and Spiritual Evolution." I was unable to go to his clinic, but I did find his book extremely beneficial and helpful to me.

What did Dr Kim Burchiel report?

I am not a doctor, just well educated about TN as a patient. It could be that it will simply take time for your trigeminal nerve to settle down. Of course there is also the fact that things can go wrong after a lot of heavy dental work and they do not know (yet) what causes people such pain. There could be something wrong, but has yet to be discovered my medical science, If this is the case, then I would recommend working with a highly recommended pain clinic (I can't recommend one as I was not terribly pleased with the OHSU or Kaiser Perm pain cinics.)



Physical pain can be a profound spiritual teacher. For when we hurt, our previously "great" lives fall apart and we are faced with the honest truth of worldly existance. It sucks and everything ends up in suffering. This caused me to wonder if there is a cause and if there is a way to be free of suffering. (Note: pain is mandatory. Suffering is optional...) For me, the Buddha's teachings have proven incredibly helpful. They allowed me to turn my pain into a part of my overall spiritual path to the degree that, if I had a choice to do it again, I would not change anything. And I went through/go through a lot of pain!

I hope this is helpful. These are a few possible leads to follow.

Good luck

 
Old 07-28-2010, 10:03 AM   #12
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Re: Atypical Face Pain - Atypical Odontalgia

Quote:
Originally Posted by birgit81 View Post
All,

I have atypical face pain from having too much dental work done (7 root canals, wisdom teeth out etc) and am now taking 100mg Elavil ( Amitriptyline) and 2700 mg Gabapentin. Both drugs dont do much regarding pain relief.
My pain is constant and in the left side only. It feels like a toothache and then some pulling, tingling and cold sensation in the cheek. I dont have the shocks like trigeminal neuralgia but the pain is just constant.

Can please pleaaaase anyone with atypical face pain, facial neuralgia etc. tell me what meds they take and what worked best for them?


thank you so much
I am soo desparate!!
I have had atypical trigeminal neuralgia for about 4 years now, and I take Lyrica and Cymbalta together and they work pretty good. It makes the pain bearable.

 
Old 09-22-2010, 12:06 PM   #13
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Re: Atypical Face Pain - Atypical Odontalgia

Quote:
Originally Posted by birgit81 View Post
All,

I have atypical face pain from having too much dental work done (7 root canals, wisdom teeth out etc) and am now taking 100mg Elavil ( Amitriptyline) and 2700 mg Gabapentin. Both drugs dont do much regarding pain relief.
My pain is constant and in the left side only. It feels like a toothache and then some pulling, tingling and cold sensation in the cheek. I dont have the shocks like trigeminal neuralgia but the pain is just constant.

Can please pleaaaase anyone with atypical face pain, facial neuralgia etc. tell me what meds they take and what worked best for them?


thank you so much
I am soo desparate!!
I am diagnosed with Trigeminal Neuralgia. I too have had about 9 root canals. I am certain that is the cause of the pain issue. I am now taking 600 mg AM & PM Neuriontin and 100 mg Tegretol. I am still having pain (stabbing) every 5 days. it is a bit milder. I don't want to live with this pain. It stkries every 4 to 5 days. It lasts sometimes off and on for an hour or two. sometimes it will be off and on for the day. Also hot food, chewing on my left side or sometimes doing nothing. Cold food or liquids seems to help at the time of the pain.
I think the pain is less severe but I want it to go away. I don't think taking the meds is good but what else to do? Of they helped, that would be another thing.

 
Old 09-22-2010, 12:09 PM   #14
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Re: Atypical Face Pain - Atypical Odontalgia

I am diagnosed with Trigeminal Neuralgia. I too have had about 9 root canals. I am certain that is the cause of the pain issue. I am now taking 600 mg AM & PM Neuriontin and 100 mg Tegretol. I am still having pain (stabbing) every 5 days. it is a bit milder. I don't want to live with this pain. It stkries every 4 to 5 days. It lasts sometimes off and on for an hour or two. sometimes it will be off and on for the day. Also hot food, chewing on my left side or sometimes doing nothing. Cold food or liquids seems to help at the time of the pain.
I think the pain is less severe but I want it to go away. I don't think taking the meds is good but what else to do? Of they helped, that would be another thing.

 
Old 09-23-2010, 06:23 PM   #15
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Re: Atypical Face Pain - Atypical Odontalgia

Dear RothML,

I'm sorry your having such a rough time. Such pain is exceedingly frustrating. I had middling pain before surgery, and after two sinus surgeries to remove a harmless cyst I was in horrific pain and living off Percocet until my liver started having problems. The pain remained after I "healer." Then came the morphinre, oxycodone, oxycontin, methadone and finally Fentynal. All the while I was also trying all the non-opiate meds they or I could think of plus many alternative therapies. It is a long process of finding what will work for you.

Jump five years... I am now just finishing up tapering off the Fenynal. Be WARNED: opiate pail killers start out seeming like they offer wonderful relief from pain, even if it is only partial. But it goes downhill from there until your life revolves around taking pills to manage the physical dependence. You'll need more and more to get the same relief and to keep withdrawals at bay. In my case Fentynal was not doing anything at all and now that I am off, my pain is virtually unchanged. The Fentyal and other opiates were like training wheels that blunted the pain at first, then slowly over a period of many months to a few years they slowly let more and more of the pain through to the point I had learned how to live with the full pain without any analgesia. I recommend opiates only as a tool to help you learn to live with the pain. It will NOT make it go away and the physical dependence or even addiction if it develops (and it can develope easily) will become a big problem after a few years. Getting off is a very slow painful process. Finding a medical team that you trust and feel good about is critical to long term success as is becoming an expert about your condition and the treatments.

When I was at my worst my pain was perceived (and perception is a huge piece of this process) as so bad that taking my life was a valid treatment option. I understand completely just how bad it gets. I used the narcotics, antidepressants, some therapy, tons of cuddling with my cuddle buddy, acupuncture, chiropractic, meditation and relaxation to learn to live with the pain. Building kayaks as a hobby business and listening to lots of music from my subscription to Rapsody allowed me to have a lot of fun. This 2.5 year period of fun went a long way to finding my way to 'rehabilitation.' Finding something you enjoy and engaging in it daily is critical to working through the pain. Taking time to help others helped me too. The joy of helping offered some relief as well.

In my experience, it is fighting the pain that is really the problem. To heal we need to embrace it and make friends with it, as strange at it sounds. We all experience pain. But what we do with it mentally and emotionally - the story we build around it - is what turns pain into suffering. Raw miserable suffering. The key becomes to disentangle pain from suffering. Somehow through my process I have been able to make friends with the pain. It still hurts, at times really bad, but it really is okay. The alarm bells don't go off anymore.

There is no magic cure to this and don't expect pills to fix everything to make it all like it used to be. Meds can help, but making friends with our experience is the key. For once we become friends with the pain we no longer make it worse through the chronic stress and depression that results. Unmanaged stress and depression greatly increase our pain and reduce our ability to cope. It is our perceptions that drive our experience, not the other way around. There are many books about this. Explore what they offer. A TN group helps a lot to, as friends who understand go a long way. Don't let your friends get away.

When I was so desperate I had two surgeries I didn't need because I was unwilling to feel the pain and I fought it. Desperation makes for poor choices, so be very careful and do your research. Get help in it if needed.

I hope this is not to long. There is so much more I have learned. I would be happy to continue to talk with you, either on or off the forum. This is a really hard journey. But it can also be a profound teacher that helps us greatly deepen our spiritual life. If we don't have one, it can help us find it, in whatever from we need it to be in. Only through knowing hardship can we truly know joy.

All that said, this is just my opinion and I am only one person. This is what works for me. Everyone is different. With courage we need to find what works for each of us through being strong advocates for our care and standing up for what we need.

Last edited by thatmonk; 09-23-2010 at 06:25 PM.

 
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