Diagnosis of Atypical Odontalgia/Facial Pain-I still have difficulty accepting it

21

"Cherry I for one would like to know how that MRI went and if it was indeed negative, as I am sure are others, if of course you will be comfortable sharing that in the next few days..."


I don't mind sharing at all, I like sharing, I need to. My family is fed up with listening, and I understand more than they know. Okay MRI... drumroll, nothing, negative, nadda. SIGH Well, at least they did not find MS, that's a good thing. She also said my neck was fine as I have been having some weakness and tremors in my arms that we were concerned about. She suggested an EMG but I declined that at this point lol Had one on my leg last year after a dropped foot, NO WAY. I made my Neuro crack up when she saw my reaction to those three letters lol. I also had a longer visit today as I had questions for her that I have posted about and she was more than willing to answer them and reassure me. Yes, she does have other TN patients and No, she did not want to "label" my TN. She doesn't want me focused like that she explained and she explained the different types of pains we get and simply put, something is wrong with my trigeminal nerves. Thus far we have found nothing else to explain the problem so, she is labeling it "idiopathic" and will follow my lead. I told her I am not ready for a surgeon, I'm just not at that point and so we are seeing how far I go this type without a huge flare. She wants me to see a rhum doc (I have an elevated RH factor) and reassess in 2 mths. Oh, and she is ordering a facial cream for me from a formulator as she does have a couple patients that use this. It does puzzle her as she thinks like me (it's internal, how does that help?? lol) But she is willing to do what will help, within reason of course. So, that's where I stand.... Oh, I brought my Striking Back book with me to show her and she was interested in it and she recognized Dr Casey's name ;)

22

Hi, Obsidian

Do I trust them - not one bit, really...The supervising physician of the clinic I go to always has a silly clown smile on his face like I am talking about candyfloss and Disneyland, - not the illness that took away the last remaining quality of life..It's one of those nasty grinning smiles - not your typical sympathetic smile - and I know the difference....For 2 weeks they couldn't find my MRI report because they couldn't read it properly that it was indeed a FINAL report and not preliminary one...that to me said it all.. The first doctor I saw in that clinic - I had to explain to her the difference between anesthesia and paresthesia, although she is a wonderful person who helped me great deal. Doesn't work there anymore unfortunately....

Epstein Barr Huh? Never even thought of this possibility. How did they diagnose you with it - was it a routine blood test that they had to do or did they have to get more invasive?

...I've lost a total of over 40 pounds. To be more exact (I am used to kilos) I went from 112 to 92 kilos and recently I lost another 2 kilos...How much of it was due to quitting amitriptyline and how much due to whatever else it is I have - I will never know...When I complained about rapidly losing weight to the supervising doc I mentioned - he said "Congratulations".. My problem wasn't that I minded looking slimmer and sexier LOL...but the fact that it happened so quick without me even trying...

Obsidian said:

Hello Moribund,

I'm not a doctor, but just a thought about the other symptoms you described - swollen lymph nodes, nausea, weight loss, intermittent night sweats, etc. I was very sick 15 years ago with what turned out to be the Epstein Barr virus. I lost at least 25 lbs at the time. It left me with chronic fatigue for months afterwards. Even now I still have bouts of chronic fatigue if I get rundown. The symptoms you mentioned seemed similar.

Do you trust the doctors you've seen so far? It sounds like you're dealing with a lot of physical symptoms plus the TN. Have you been tested for autoimmune disorders, vitamin deficiencies, food allergies? Before I saw the neurologist who diagnosed my atypical TN, my regular doctor did blood tests for everything I've listed, also for Lyme disease. The results were all negative, but at least it ruled those things out.

I hope you find relief from all this soon ... wishing you pain-free, healthy days ahead.

23

Hi Moribund,

There's a blood test for the EB virus. Simple, nothing invasive.

Your description of the supervising physician with the "silly clown smile" sounds familiar ... I had similar treatment from several doctors I saw last year. Have you considered looking for new doctors?

It took 17 months of hell but the neurologist I ended up with was concerned, kind and knowledgable.

I hope you get answers soon.


Moribund said:

Hi, Obsidian

Do I trust them - not one bit, really...The supervising physician of the clinic I go to always has a silly clown smile on his face like I am talking about candyfloss and Disneyland, - not the illness that took away the last remaining quality of life..It's one of those nasty grinning smiles - not your typical sympathetic smile - and I know the difference....For 2 weeks they couldn't find my MRI report because they couldn't read it properly that it was indeed a FINAL report and not preliminary one...that to me said it all.. The first doctor I saw in that clinic - I had to explain to her the difference between anesthesia and paresthesia, although she is a wonderful person who helped me great deal. Doesn't work there anymore unfortunately....

Epstein Barr Huh? Never even thought of this possibility. How did they diagnose you with it - was it a routine blood test that they had to do or did they have to get more invasive?

...I've lost a total of over 40 pounds. To be more exact (I am used to kilos) I went from 112 to 92 kilos and recently I lost another 2 kilos...How much of it was due to quitting amitriptyline and how much due to whatever else it is I have - I will never know...When I complained about rapidly losing weight to the supervising doc I mentioned - he said "Congratulations".. My problem wasn't that I minded looking slimmer and sexier LOL...but the fact that it happened so quick without me even trying...

Obsidian said:

Hello Moribund,

I'm not a doctor, but just a thought about the other symptoms you described - swollen lymph nodes, nausea, weight loss, intermittent night sweats, etc. I was very sick 15 years ago with what turned out to be the Epstein Barr virus. I lost at least 25 lbs at the time. It left me with chronic fatigue for months afterwards. Even now I still have bouts of chronic fatigue if I get rundown. The symptoms you mentioned seemed similar.

Do you trust the doctors you've seen so far? It sounds like you're dealing with a lot of physical symptoms plus the TN. Have you been tested for autoimmune disorders, vitamin deficiencies, food allergies? Before I saw the neurologist who diagnosed my atypical TN, my regular doctor did blood tests for everything I've listed, also for Lyme disease. The results were all negative, but at least it ruled those things out.

I hope you find relief from all this soon ... wishing you pain-free, healthy days ahead.

24

We find we have to do more research on our own rare crap.

Can you get a rheumatologist???? That is one way to slash the list of many oddities.

I don't know how your systems work for health care.

Google - or call pharmacist and see if any of your meds are making you lose weight.

Weird story -- My son age 20

took Restless Leg Syndrome meds

for about a year --- it was in the last eight weeks that I realized he had dropped about 30 lbs and only ate once per day, no snacks, stopped pop

I called the pharmacist and ran down the list of all his meds -- and this little freaking medicine has a 5% chance of anorexia !!!! Who Knew???

Psychiatrist? Never mentioned it..... I don't blame him at all --- it was only

5% chance my baby would stop eating !

Just like the microscopic chance of getting TN.

Keep researching - get top docs - come to the states --- whatever you have to do!!!

25

http://www.livingwithtn.org/forum/topics/everyone-with-tn-should-re…

Really great link that gives one of the best descriptions I’ve read of TN…



I’d like to write more but my vision isn’t cooperating… />

(Try again tomorrow)

Mimi (fellow Canadian )

26

I understand your what you are saying….finding yourself in pain is not an easy journey….

I have learned many things on this journey and the most important lesson I learned is that it does not matter what I am diagnosed with just what treatments work...

My pain started in the dentist chair but prior to sitting down my life was stressful, my job did not have a computer terminal that was easy on the neck and I talked on the phone with out a head set. I also did too much physical activity and put too much pressure on my body. Result=explosion of pain

My first diagnosis was it was a tooth problem, 3 root canals and 2 teeth removed later I was diagnosed with MS and trigeminal neuralgia, wrong again….then atypical facial pain, then Eagle Syndrome (got one right), then TMJ and now I just say I have atypical facial pain…..

It seemed like my body was shutting down….I had symptoms nausea, throwing up, itchy rashy skin and I felt like life was not worth living….but slowly I learned about nutrition and gave up gluten which lessened my inflammation, I read books like Michael Singers The Unteathered Soul and I had treatment for Eagle Syndrome and a bit plate for TMJ….but the pain persisted but changed…..I then found a clinic that focuses on tight muscles and found that my jaw, I am sure from that first dentist appointment, my back and pecks from talking on the phone and that crummy computer and overworking were like rocks….now that I have had treatment my life is much better…..it is called my kinesthetic massage…..now I can move my head, even type on a computer for 20 minutes and talk…..a very nice change….

I would suggest you look at your overall health and try to find everything you can do to get healthy and keep looking for the treatment that will work for you...

Good luck on your journey

27

Hi Moribund,

Some of your story is somewhat like mine and many other people who had recently undergone dental treatments before their pain began:

November 2012: Had old failed root-canaled right bottom molar removed, oral surgeon remarked that it was quite infected after extraction...(had a long-standing low-level infection in that tooth that would not respond to additional treatments, and was on heavy -duty antibiotic therapy before and after the extraction)

February/March/April/May 2013: Feeling extremely tired all the time, irritable. Experiencing some light "phantom" pains on and off at the extraction site. Consulted with the oral surgeon about it....he assured me that I had healed with no complications. He never mentioned that the pains could be the start of something like TN.

June/July August 2013: Insomnia...sleeping maybe 3 hours each night. It was the first time in my life I could not sleep and it was horrible. Went to the ER 3X from August through October 2013. CBC normal EXCEPT my potassium was always very low: 3.2. I was given potassium, instructed to eat bananas (as if they are the best source....NOT)

Late August through September: 2013:Severe abdominal pains on and off (mostly on) 15 minutes after eating any type of solid food. I became wary of eating, so I lost 21 pounds in 7 weeks during this period. A hot water bottle sometimes helped with the pain which began under the ribs in the center of my abdomen and after a few weeks became localized around the center and then moves to the lower right side. CT Scan NORMAL, Upper Endoscopy NORMAL, Colonoscopy revealed Moderate Diverticulosis (Not Diverticulitis) and a Benign 2cm. Liver Cyst in the Doma of the Right Lobe.

Late August: Experienced a severe Lightning- Bolt Type Pain in the bottom part of my skull on the right side. The force of this strike was so that it seemed to travel to my knees. I fell down. I felt stunned for a few seconds, got up and then there was no pain.

Early September: Experienced a second severe Lightning-Bolt Type Pain in my right jaw. It woke me up from a deep sleep. Couldn't open my jaw up for about 5 minutes, too painful. Went to the ER had my heart checked out. Potassium was low, 3.2 again. Next day, the dentist told me it must be TMJ Dysfunction, rest jaw, hot compress helped.

4 Days Later: A third Lightning-Bolt Type Pain through my Right Eye as I was sitting watching television. The force was so strong I almost fell off my chair. My right eyelid twitched relentlessly for 2 months and still does on and off.

Then NO PAIN until January 20th, 2014 a few hours after a Chiropractic Adjustment.... and I have been experiencing pain on and off everyday since. My pain is bilateral now, but began only on the right side and the worst of my pain is right- sided.

My Neurologist initially diagnosed Fibromyalgia and prescribed Pamelor and Lyrica. I felt incredibly jittery on Pamelor and could not sleep at all, so I just took Lyrica. Had a few terrible pain episodes in February, so he added Tegretol. I take a pill every 6 hours but still have breakthrough pain. Pain is right-sided for a while, could be in my teeth and gums, my cheek or around my eye....it moves around all day long. Then it switches to the left side....completely random in its action. Talking, chewing and cold weather are all triggers. I even have two triggers in my scalp...found out when brushing my hair one day.

Consulted with a Neurosurgeon at John's Hopkins Facial Pain Center in Baltimore last Friday. He told me although I have many Classic TN1 characteristics, I also display Atypical Trigeminal Neuralgia symptoms, therefore in his opinion, the cause of my TN is COMPLEX. That, in a nutshell, means that this type of TN is much harder to manage than Classic TN1. I told him that I had a lower back molar removed several months before all of this began and I feel that it is quite possible that is the cause of my TN. He told me that dental procedures do not cause TN....hard for me to believe, since almost everyone I hear about had their first TN symptoms AFTER a root canal, deep filling or extraction procedure.

Because this is such a RARE condition, there has been almost ZERO interest in finding a cure within the medical community in the past (other than the famous Dr. Janetta and his MVD surgical procedure) but the TN Association headquartered in Gainesville, Florida is making some inroads into finding out why some people develop nerve pain syndromes while other people with the same nerve injury do not go on to develop pain. They think the answer lies in our genes. To date, there is no cure for nerve pain of any kind that I can find. So it has to be MANAGED with drug therapy. I have been reading everything I can get my paws on to better understand what I am up against, and the literature is murky at best. It is a matter of trial and error for all TN sufferers. If you are extremely lucky, you have TN1 and are cured with MVD surgery. That is not the case for most TN sufferers, however. "Atypicals" have a lifelong road to hoe it seems. I am trying to come to terms with my diagnosis as well, so I know exactly how you are feeling right now.My emotions are all over the board as well.

I am also experiencing the usual side effects from the anti-epileptic drugs I am on to quell the nerves so that they do not "misfire" as often to cause pain. I had to close my business recently and I cannot drive until my body gets used to the drug side effects. Eight months ago I was running around like a 25 year old and now....well I spend my days reading and trying in desperation to figure my way out of this nightmare.

You are correct. Pain changes a person." Life will not be the same for me." That is the statement I am struggling with the most. But I also know this: I loved life before this pain began and although I am in pain as I write this, I acknowledge that I still love life. I CHOOSE LIFE. I am going to fight this disease/disorder with everything I have....with my will and my intellect, with every resource I can find.When I am feeling low, I you tube Michael J. Fox and others living with "incurable" diseases/disorders. You can be a victim or a hero in your own life. Hero's have so much more.... "Swagger!"

Complimentary Procedures to try:

Upper Cervical Care (Orthogonal Chiropractic)

Capsaicin Cream: Apply 4-5 times daily...don't get in eyes!!! After 4 weeks a number of TN patients have been able to reduce or get off their medications!

Botox: There are several ways to approach the administration of Botox, but small doses initially, work better.

Acupuncture: Chinese Acupuncture....NOT Western Acupuncture. The Neurosurgeon at Hopkins strongly recommended I try it.

Facial Pain Clinics: Some Dental Facial Pain Specialists around the country utilize mouth splints, ultrasound therapy and TENS. Dr. Ira Klemmons, DMD, in South Amboy, NJ is one of these docs. People come from all over the globe to be treated by this doctor. Google: Facial Pain Dentists.

Dr. Terry Wahls new book: The Wahls Protocol...I wrote a piece on this amazing doctor and posted it today on the Discussion Board....please take a look!

LLLT Therapy: Helps to heal damaged nerve tissue.

Read: Striking Back

Read: Facing Facial Pain

There are many other CAM approaches to take to lessen your pain, and remember there ARE many TN patients that have gone into remission...some for many years. Please friend me and I will write to you daily.

Adele :)

28


I would have to agree with you. The head,is the most innervated part of the body. Hence the probability of damaging a nerve via IM injection is much higher there than almost anywhere else in the body. Moreover - materials dentists use for root canal (like Sodium Hypochlorite) have been implicated in damage to the alveolar nerve manifesting in aesthesias, hyperesthesias and neuralgias of oral localization in some individuals. Every time anything invasive is done to your body - there is a small chance something will go wrong. Arterial injections are not as uncommon either. I read that 0.5 - 1.5% of long term hospital patients can expect this to happen with varying consequences.
Cleo said:a

I have trigeminal nerve damage caused by anesthetic injection gone wrong by a dentist 13 years ago. It felt like my entire right side of my mouth and face had been electrocuted instantly. Its not a theory. Its a known risk associated with injections. Just as overfilled root canals is a known risk that happens. The degree of the damage to the nerve usually coincides with the level of nerve pain one will experience.

29

What you sounds oddly familiar . Mine progressed very similar in similar substances. I do as well and know of another that have limp nod pain . I also have fibromyalgia and my neurologist says that the severed of my pain in the right side of my face triggered a pain syndrome on my left side of my face . That the nerves produce chemicals when there is intense pain and they can effect surrounding nerve branches . To ease the pain syndrome she put me on a powerful anti inflammatory the doesn’t do much for the inital tn attack but it does help with the syndrome and on the tn side it helps with veins that pretrude from my face reduce in swollening and some of the after shock pain I like to call it I hope this is helpful . I also take gabapentin and anytripoline . but not everything works the same . different things work for different people .once they get your right combination of meds it well get easier . make sure you have a good doctor that “listens” write things done . also read your meds side effects those are real . trust me . good luck :slight_smile:

30


Hi Cleo!

Interesting you listed a dental cause...my own problems began after a botched root canal...almost immediately in fact...however - the root canal was done on bottom left tooth (and I have pain that began in top right pre-molar so I would say that in my case - the "dental hypothesis" is highly improbable...unless...here I go:

Basically - the root was way too long Just over 25 mm. The anesthetic didn't work at all. I was on the verge of passing out from pain. The dentist had to really drive the needle in and swirl around with it after that - he injected me directly into the nerve through the cavity. When my tooth continued to hurt I came back and he discovered the root was longer than he first thought (and he tried to blame it on me for not biting down on the photographic plate hard enough so it didn't show the whole root - a ridiculous explanation -because if what you think to be the end of the root coincides with the end of the photographed area - you RE-TAKE the photo again!!)

So again I go through the same thing. Again I nearly pass out. The same night I found the taste of the medication in my mouth - it leaked all over from the tooth and I couldn't get rid of the nasty taste for a week after. More importantly - the very next day after being filled - the tooth fell apart. That same day I began experiencing light bright pains in the left bottom jaw area - around that molar. It is as if though they ran across the jaw and were short and fleeting. Interestingly the pain in my upper right jaw portion and teeth there also began with same odd pains and then intensified...

Also - what's interesting...after that visit I began experiencing disabling arthritis-like pains in my knees, ankles and toes...I never had arthritis before this and am just a little to young to develop it. Those strong arthritis pains never returned again. But then my upper right teeth began to hurt and I started experiencing that odd pressure in my face...so:

In both our cases (if in fact the "dental hypothesis" is correct), because the symptoms seem to be systemic rather than localized, - this would indicate infection with a bacteria or virus. Injection route has an incredibly low probability because the needles they use are disposable (at least I believe they are). Which leaves us with dental tools not having been properly sterilized. I would hate that to be true...The locale of your pain may or may not suggest liver involvement. Liver itself cannot hurt but the sack of neural tissue around it can - which means that the liver is expanding. Which begs the question, - have you checked yourself for hepatitis B/C. They can manifest as slowly progressing infections and abdominal pain and loss of weight is one common symptom. Hep C also affects the nerves so...

It may appear that I am jumping to conclusions here - but deductive reasoning demands elimination of alternative hypotheses in order to find the most parsimonious explanation, so if you did undergo testing for hepatitis and it was negative - that eliminates one type of infectious agent.

Another possible scenario may be that the infection from your tooth made it into alveolar space and beyond. Because infections which inhabit alveolar space are anaerobes, - if this is true - you would need a prolonged antibiotic treatment with an antibiotic that is used to target anaerobic infections - like Clindomycin...

Now as far as Acupuncture, - I am very wary of treatments which have not been demonstrated to work at above placebo levels, the details of which have not been published in a peer-reviewed journal, like acupuncture or homeopathy. Especially when one isn't 100% convinced that one doesn't have a serious illness that requires conventional treatment..

I've never seen a Chi meridian just like I've never seen a Geographical meridian :-) While Geographical meridians are abstractions we use for convenience, Chi meridians have never been measured by an instrument. As far as I know - they are just drawings from some old book. People have come up with weirder artifacts - which despite their outward complexity are utterly nonsensical like the Voynich Manuscript.

I did at one point try Chinese acupuncture as a treatment for my back problem, because I was pressured by my relatives. Nothing good came out of it. I am sure if I believed in it I would at least have experienced the Positive Placebo Effect LOL

Hi Moribund,

Some of your story is somewhat like mine and many other people who had recently undergone dental treatments before their pain began:

November 2012: Had old failed root-canaled right bottom molar removed, oral surgeon remarked that it was quite infected after extraction...(had a long-standing low-level infection in that tooth that would not respond to additional treatments, and was on heavy -duty antibiotic therapy before and after the extraction)

February/March/April/May 2013: Feeling extremely tired all the time, irritable. Experiencing some light "phantom" pains on and off at the extraction site. Consulted with the oral surgeon about it....he assured me that I had healed with no complications. He never mentioned that the pains could be the start of something like TN.

June/July August 2013: Insomnia...sleeping maybe 3 hours each night. It was the first time in my life I could not sleep and it was horrible. Went to the ER 3X from August through October 2013. CBC normal EXCEPT my potassium was always very low: 3.2. I was given potassium, instructed to eat bananas (as if they are the best source....NOT)

Late August through September: 2013:Severe abdominal pains on and off (mostly on) 15 minutes after eating any type of solid food. I became wary of eating, so I lost 21 pounds in 7 weeks during this period. A hot water bottle sometimes helped with the pain which began under the ribs in the center of my abdomen and after a few weeks became localized around the center and then moves to the lower right side. CT Scan NORMAL, Upper Endoscopy NORMAL, Colonoscopy revealed Moderate Diverticulosis (Not Diverticulitis) and a Benign 2cm. Liver Cyst in the Doma of the Right Lobe.

Late August: Experienced a severe Lightning- Bolt Type Pain in the bottom part of my skull on the right side. The force of this strike was so that it seemed to travel to my knees. I fell down. I felt stunned for a few seconds, got up and then there was no pain.

Early September: Experienced a second severe Lightning-Bolt Type Pain in my right jaw. It woke me up from a deep sleep. Couldn't open my jaw up for about 5 minutes, too painful. Went to the ER had my heart checked out. Potassium was low, 3.2 again. Next day, the dentist told me it must be TMJ Dysfunction, rest jaw, hot compress helped.

4 Days Later: A third Lightning-Bolt Type Pain through my Right Eye as I was sitting watching television. The force was so strong I almost fell off my chair. My right eyelid twitched relentlessly for 2 months and still does on and off.

Then NO PAIN until January 20th, 2014 a few hours after a Chiropractic Adjustment.... and I have been experiencing pain on and off everyday since. My pain is bilateral now, but began only on the right side and the worst of my pain is right- sided.

My Neurologist initially diagnosed Fibromyalgia and prescribed Pamelor and Lyrica. I felt incredibly jittery on Pamelor and could not sleep at all, so I just took Lyrica. Had a few terrible pain episodes in February, so he added Tegretol. I take a pill every 6 hours but still have breakthrough pain. Pain is right-sided for a while, could be in my teeth and gums, my cheek or around my eye....it moves around all day long. Then it switches to the left side....completely random in its action. Talking, chewing and cold weather are all triggers. I even have two triggers in my scalp...found out when brushing my hair one day.

Consulted with a Neurosurgeon at John's Hopkins Facial Pain Center in Baltimore last Friday. He told me although I have many Classic TN1 characteristics, I also display Atypical Trigeminal Neuralgia symptoms, therefore in his opinion, the cause of my TN is COMPLEX. That, in a nutshell, means that this type of TN is much harder to manage than Classic TN1. I told him that I had a lower back molar removed several months before all of this began and I feel that it is quite possible that is the cause of my TN. He told me that dental procedures do not cause TN....hard for me to believe, since almost everyone I hear about had their first TN symptoms AFTER a root canal, deep filling or extraction procedure.

Because this is such a RARE condition, there has been almost ZERO interest in finding a cure within the medical community in the past (other than the famous Dr. Janetta and his MVD surgical procedure) but the TN Association headquartered in Gainesville, Florida is making some inroads into finding out why some people develop nerve pain syndromes while other people with the same nerve injury do not go on to develop pain. They think the answer lies in our genes. To date, there is no cure for nerve pain of any kind that I can find. So it has to be MANAGED with drug therapy. I have been reading everything I can get my paws on to better understand what I am up against, and the literature is murky at best. It is a matter of trial and error for all TN sufferers. If you are extremely lucky, you have TN1 and are cured with MVD surgery. That is not the case for most TN sufferers, however. "Atypicals" have a lifelong road to hoe it seems. I am trying to come to terms with my diagnosis as well, so I know exactly how you are feeling right now.My emotions are all over the board as well.

I am also experiencing the usual side effects from the anti-epileptic drugs I am on to quell the nerves so that they do not "misfire" as often to cause pain. I had to close my business recently and I cannot drive until my body gets used to the drug side effects. Eight months ago I was running around like a 25 year old and now....well I spend my days reading and trying in desperation to figure my way out of this nightmare.

You are correct. Pain changes a person." Life will not be the same for me." That is the statement I am struggling with the most. But I also know this: I loved life before this pain began and although I am in pain as I write this, I acknowledge that I still love life. I CHOOSE LIFE. I am going to fight this disease/disorder with everything I have....with my will and my intellect, with every resource I can find.When I am feeling low, I you tube Michael J. Fox and others living with "incurable" diseases/disorders. You can be a victim or a hero in your own life. Hero's have so much more.... "Swagger!"

Complimentary Procedures to try:

Upper Cervical Care (Orthogonal Chiropractic)

Capsaicin Cream: Apply 4-5 times daily...don't get in eyes!!! After 4 weeks a number of TN patients have been able to reduce or get off their medications!

Botox: There are several ways to approach the administration of Botox, but small doses initially, work better.

Acupuncture: Chinese Acupuncture....NOT Western Acupuncture. The Neurosurgeon at Hopkins strongly recommended I try it.

Facial Pain Clinics: Some Dental Facial Pain Specialists around the country utilize mouth splints, ultrasound therapy and TENS. Dr. Ira Klemmons, DMD, in South Amboy, NJ is one of these docs. People come from all over the globe to be treated by this doctor. Google: Facial Pain Dentists.

Dr. Terry Wahls new book: The Wahls Protocol...I wrote a piece on this amazing doctor and posted it today on the Discussion Board....please take a look!

LLLT Therapy: Helps to heal damaged nerve tissue.

Read: Striking Back

Read: Facing Facial Pain

There are many other CAM approaches to take to lessen your pain, and remember there ARE many TN patients that have gone into remission...some for many years. Please friend me and I will write to you daily.

Adele :)

31

You know...I dread the day they find the real cause. I wish I could learn to live accepting the whole symptom (trigeminal neuralgia) as diagnosis. And you know what...if they could make my pain go away I just might be able to ignore reality until it smacks me in the face (pun intended). But you know, I'm making myself crazy...and maybe my doctor too. Wish I could get out of the cycle of pain and fear. I feel ya...it seems to me they aren't trying hard enough to find the cause. I guess even in a day like today science has it's limits...or something.

Hope we all have relief soon. As I said, if I didn't have the pain, I think I would not have the crazy that I feel like I've turned into.

32

Another Dental story of thousands here for you:

Have had 3-4 back teeth removed over the years --- 20+ fillings - 5 root canals- teeth capped - one implanted tooth - so no stranger to the chair. My parents both had horrible teeth - I could barely eek out the bills for these over the years while in college for 10years LOL.

SO - revisited a local famous fat cat Oral Surgeon - who has his office set up like a big semi-circle - to pull as many teeth per day as possible--saw him years ago - pulled a tooth - fine and costly.

BUT - October 2010, he shot me up and pulled a back LEFTSIDE bad molar. Him and my good dentist both told me the LEFT SIDED wisdom tooth behind that - was embedded, backwards, sideways and was going to be hell if I didn't get it out.

So I sauntered out, spent a couple hundred and left. Knowing he warned me I better come in the same month and get the monster tooth out. Later that day, eating out, I had little teeeeny zaps in my bottom gum line - far from the "area problem"... this was weird and not painful but uncomfortable. Got in the next day... he sees xrays, sees nothing, will be fine , but get in here and get that WISDOM tooth behind, OUT!

I show up like a good sheep, and bring my $500 and my dad. I'm still pointing and tingling on the RIGHT SIDE! He says

It will heal soon, but we are going to have to put you under.....Propophonal - the Michal Jackson Drug.... to give me twilight sleep..... he says will have to grab some of the jaw bone - and all will be well.

I woke up with blood dripping down my arm, and the assistant is looking ghostly white and pale..... I'm so druggy... he looks at me, she cleans me up, and they send me out the exit door to my dad.

I get home, and I call my fiancé, and tell him , call the SOB because there are tazers ON my RIGHT Cheekbone ---- opposite side the "surgery".

He calls in drugs that don't work, I go to the ER, they give me narcotics IV, barely helps. I call the office the next day, still getting shocks on the RIGHT.... I go in for xray.... he knows then, he doesn't have any human affect - and says you need a CAT scan.... then we can rule out stuff....but says probably Tic Delaroux...... see a neurologist ASAP...... DONE with me.

I go home and google this fancy name and see the words Suicide Disease. I'm thinking my career is over, I should not get married and there is no hope.

I call the only Dental Lawyer in the metro area, he says, you have no chance to sue him. The last lady he did this to, well.... his lawyer made her look psychotic.... there was no evidence..... He's a millionaire and you can't touch him. Unless you can get his peers to get on your side.

The grieving process won't kick start - I'm mad as hell..... I call the TOP DOG of the Chair of the Dental University here...... ask can this be caused in a dental chair???? Noooooo. I didn't even mentioned the idiots name. They stick together like doctors.

So I get my med, and it works!!! but I am having to leave my new job.... actually I tried three meds in 2 months, trying to hold on to my job..... but my supervisor said I was not well enough to help the foster kids.... I was on Lyrica and it was like being drunk... I tried Gabapentin, it made me too dizzy to drive, so I went back to the one med that took my IQ and went home. No pain, only shame, fear, shock,,,, you know the drill.

So when I got here on this site, I read all I could,

I asked my great neurologist if I could have Ritalin

so I could focus for my research project = Find Best MVD Surgeon in the Country

In my research - I found that the idiot probably wrenched my neck into a whiplash type state - whiplash can cause TN to have your biology set to trigger. Many have compressions all their life, and never trigger pulled. This is a guess, this is what I settle on. I had to forgive the idiot so I wouldn't drag him around after I had a YEAR LONG pity party.

got married on a great beach all drugged up LOL 8 year engagement - LOL

Got on antidepressant, Booked Dr. Casey, and flew from Missouri to Michigan.

Had lunch in Canada - Just to say I did it! I ACTUALLY had my MVD while in remission - but I know it was progressive and there I was - ready to try.

.

It took 2 years to get off and on and off meds,

get off my BEST FRIEND Lidociane Face Patches---- which I still travel with - just in case.

No pain - 2 years 5 months.

I come here almost daily since 2010 - when this site saved my life. When people / strangers, from all over the world,

here carried the torch for me in a dim, dark, cave, and lead the way for me..... I felt less doomed.

I was not doing MVD lightly---- biggest FEAR - I was afraid of general anesthetic..... trusted the doctor, hoped I woke up....

it was terrification! I had a few anti anxiety pills the days up to the surgery. Okay, a few anxiety pills, in the 6 weeks waiting period.

The doctor emailed me personally back and forth until I saw him - I watched videos on him, read his book, and there was no turning back.

My remission now could end tomorrow, a fall, a car wreck, when I go to get all my teeth out and get dentures??? No needles!

OR I could get 10+ years of peace until something better comes along. I already have my next MVD guru picked when Dr. Casey retires.....

In those two years, I changed. The whole experience. PTSD still if I feel a twinge in the freezer isle at groceries. I lost friends that I'm not going to get back. There was a high price I had to pay.....and now,

I have a new friend, I have a therapy job I LOVEEEE.

then.... I had a baby itty bitty stroke this summer - I'm 90% back to whatever normal is --- stroke only stole 10% of off and on random memory issues - that I will hope to overcome with time and retraining my brain.

I have a purpose, I have my clients,

I have family that loves me, my grown kids, new hubby, 5 pets, many things were not taken from me.

My sense of humor came back!!! I thought it was lost forever. I found it in the bottom of a chocolate martini glass ; )

Going out Dancing, and also traveling to the Caribbean keeps me sane, and lets me not be the "patient", it gets old being the "patient"

Make your own path to healthier----- wherever you need it to go..... that is the moral of my story....

My local neurologist was surprised I had three meds and done -

12 months of TN and I was on an operating table across the states.... he said that I was really proactive..... with TN you HAVE to be that.... and if you can't , find somebody who can be your cheerleader!

And I will advocate for myself and others till my last breath - I will stomp over medical staff that don't share my vision. I will study, read, learn, drive as far as I have to get the best health care I can afford. I wish this for all who are in pain.

33

My conclusion of whiplash is because the hellish pain

on top right cheek i had…
is opposite side of the face where he worked

Bottom left

34

Moribund...your story and symptoms are so similar and familiar to me....I am on Lyrica right now-just 4 weeks into it and up to 100mg 2x day. It was helping a lot until last night and today. I took a tramadol at 2am last night and another 1 hour ago. I am newly diagnosed and already so sick of this. I was at the peak of health, great energy, positive outlook on life, life of the party, cheerful, always smiling, etc. etc. and this affliction has knocked me to my knees....my personality has changed, not much to smile about...ATN sucks big time....it's good you found this group!

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Well said....I totally agree with what you have said..
Purple74 said:

You know...I dread the day they find the real cause. I wish I could learn to live accepting the whole symptom (trigeminal neuralgia) as diagnosis. And you know what...if they could make my pain go away I just might be able to ignore reality until it smacks me in the face (pun intended). But you know, I'm making myself crazy...and maybe my doctor too. Wish I could get out of the cycle of pain and fear. I feel ya...it seems to me they aren't trying hard enough to find the cause. I guess even in a day like today science has it's limits...or something.

Hope we all have relief soon. As I said, if I didn't have the pain, I think I would not have the crazy that I feel like I've turned into.

36


Nothing. it was already filled, he told pulling it would be difficult, need surgery, decides to leave the root there...Sodium Hypochlorite actually DISSOLVES any remains of nerve tissue in the dental canal so it's not surprising that it may have caused nerve damage in my case. ...As far as disinfecting agents like formaldehyde - I find that dubious. Formaldehyde is incredibly common in industry products and detergents, contained even in cigarette smoke..Besides - the nerve damage symptoms (if that is what it indeed it is - were too local for F. I should have felt incredibly sick within only hours of the tooth leaking (if I indeed swallowed toxic amount of F).

On a more humorous note: I am sure since both my parents smoked and I am a smoker I would have been far more likely to suffer from its poisonous terratogenic and neurotoxic effects via being born and later - through inhalation, then I am to have suffered the same from minuscule amount of formaldehyde in a dental detergent so at least in my case I can put that hypothesis to rest... It could be true for someone who is extremely sensitive to formaldehyde though...there are people who are extremely sensitive to fluoride for example and get severe muscle pains and other issues when subjected to fluoride gel treatment...

Great peer-review article, listing a number of peer reviewed animal experiments on formaldehyde toxicity - that and its list of references to studies will reveal exactly what it does, how it does it and in what doses...as well as recommendations by the WHO http://anatomidernegi.com/belge/The%20Toxic%20Effects%20of%20Formal...

Now that I think of it - this dentist was really something: - Every time he washes off the remains of mercury filling and his assistant is sucking it in he goes: -Don't swallow, don't swallow!

Eventually I get tired of this so I lecture him: - Doctor! Swallowing is an involuntary response mediated by the brain stem in response to sensation of liquid near the wind pipe. I can't "not swallow" regardless of how badly I try to resist. Do you not know that?! -I know, I know, says he and 5 minutes down the road - again: - Don't swallow... don't swallow...

(My swallowing reflex won't do anything if the assistant is quick enough to pick up water and debris with dental vacuum which she should be)

I thought to myself, gee doc..for a Bachelor of Science (on his business card) you don't sound very sober minded... and what was that science degree really in? Aeronautical engineering perhaps? LOL

I am not a doctor, my degree only offers the very basic knowledge of neurophysiology and anatomy, - but this is very basic stuff...you surely should expect a doctor to know the basics? Or not?

I know it's not really his fault the tooth fell apart - it was mostly filling, little of original dentin left. But that monkeying around with X-ray slide and then trying to blame it on me? I had an alarm bell ringing in my head at that point. I wouldn't be surprised now if his assistant also monkeys around with an autoclave and under-sterilizes the tools and that's what got me into this mess :-(

Gosh my jaw and teeth are really bothering me...I need to watch some movie or documentary to take my mind off the pain at least for the little while...


Cleo said:

So the tooth fell apart and then what did the dentist do next? Disenfecting agents containing formaldehyde are more lethal to oral tissue/nerves than sodium hypochlorite. Its really in your best interest to know exactly what was used. Especially since tasting and swallowing it for a week!

37

Did your level of pain go down at all after the neurolysis I wonder?

You know...I did initially think overfill...but so far 3 other dentists (including one who is a good friend of my family - did our teeth without an incident for 15 years) have x-rayed it and found nothing extraordinary about the way it was filled..

I may have misunderstood you when you stressed the Formaldehyde part of it... Because we inhale minute amounts of formaldehyde every day and not only inhale but produce it as a natural part of human cellular activity and generally have adequate defenses against its neurotoxic effects. So as far as formaldehyde itself is unlikely to cause neurological symptoms in an average individual in such minute amounts

Cresol (solvent part of Formocresol) is also generally regarded as safe when used properly and there is some good clinical data to show that Formocresol is safe to use even in pediatric dentistry: https://www.cda-adc.ca/jcda/vol-72/issue-3/247.pdf

But in an overfill scenario...yeah..it will just continue to irritate alveolar nerve with all the usual consequences and symptoms of nerve damage (and by usual I mean usual to us - not to the medical community in general).

So unless it IS a clear case of overfill where Formocresol or Sodium Hypochlorite gets into alveolar space and continues to irritate the nerve, - those lawyers should have a real tough time convincing the judge...

Bottom line is - I don't know exactly what happened. Even if in theory such damage and symptoms from Formocresol or even Guttapercha filler paste simply leaking into my mouth were entirely possible, - there is NO WAY to know for sure that this is what happened to me and so no way to demonstrate it to court beyond reasonable doubt. If it were an overfill - at least I could show an x-ray photo as material evidence...

In case that he really did infect me with something (a more likely explanation due to systemic symptoms common with infections) - I am not so sure that I would have any chance to prove it either. On one hand - I do not share needles or use IV drugs period, have no piercings or tattoos, don't share razor blades with anyone, but what good does it do? It's a case of "he said, she said" is it not?...If it is indeed a blood borne infection, - I will know (just for myself) that it must have been the dentist, but good luck proving that in court. It's not like they are going to raid his lab and test every dental tool for that particular strain all based on my accusation :-)

Realistically - my only hope of a legal settlement in such case would be if there were a precedent - like complaints or lawsuits launched against that same dentist by other individuals...

But right now the legal side of the issue is not my top priority. Much more importantly - I first want to find out exactly what happened if that is indeed possible - it may be the longest but the surest route to treating my condition. I have already excluded a number of things like TMD (TMJ) or Sinusitis...And the fact that my thing occurred after a dental visit - may simply be coincidental. After all, I see dentists often, plus the fact that it's the other side of the mouth, opposite to one that was worked on...so jumping to conclusions and blaming the dentist wouldn't be fair either.

I submitted blood for cancer assay on Wednesday. Which may or may not show anemia, liver involvement or other things associated with Lymphoma. I am also waiting to be called in about my ultrasound and ENT appointments. If all is negative - they will have to puncture my cervical lymph node to check for Lymphoma type cancer directly - it isn't always apparent from blood assay.

I am going to have to shop around for a good family physician. I have no history of Hypochondriasis (in case you're unfamiliar - a psychological condition in which an individual falsely believes he/she has multiple life-threatening medical issues and it's something new every time). I never once went to my GP afraid for my life before this, so I see absolutely no reason why he would be thinking that I am overreacting. Even this time around - until my symptoms worsened, and multiple antibiotics failed to work, - I didn't think there was anything dangerous occurring to me...The tests that I ask for are PERFECTLY REASONABLE dammit...sorry just venting off....



Cleo said:

My damage is due to needle penetration through the bone into the lingual nerve canal. Due to agonizing continuous torture, an OMFS went in 9 months later and did an external neurolysis removing the foreign object and cleaning up the scar tissue.

Sargenti paste and formecresol also DISSOLVE nerve tissue in the root canal. In the event of an overfill of SP or F? Anyone might want legal advice on what to do next. They really don't buy the AOP, ATN terms.

http://toothattorney.com/didyouknow6.php

Of this is not saying either was used on you but it sure puts dubious in perspective view. .

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39


Thanks... I saved it... It generally talks about typical TN though (shock like paroxysmal periodical pain. I don't have that though. At least not yet I hope, because it's all I need in addition to what I already have. Mine is different -like a non stop current going through my jaw and teeth that gets stronger towards the evening. It's quite the opposite - I have short periods when pain disappears altogether for 20 minutes to an hour contrasted against hours of pain. When it subsides - I can fall asleep. Never bothers me at night and I wake up without pain. In 30 minutes after I wake up - the pain follows suit and becomes stronger as day goes by.

Just under 2 months of Lyrica and the pain is beginning to return

It's pressure-like followed by rolling constant wave of electricity as it gains strength and I feel it's slowly but surely beginning to settle on the upper right teeth again...

Had to go to the dentist to get an incisor in that region filled after an earlier root canal. Again - he injects the anesthetic - all my teeth and gums on the top right are numb, - completely out - he is great with anesthetic this guy. And yet - inexplicably I still feel this pressure pain as if it's above and deeper in the skull than the teeth - it's like the anesthetic can reach there...

I complain to the dentist and he goes: it's possibly another tooth? But all my logic is compelled to say NO - it always takes very little anesthetic to numb my toothache. Not to mention this guy recently took another 12 x-rays and 8 magnified camera photos of my mouth and has them right in front of him magnified on the computer screen...all normal I can tell he is good - he studied every x-ray for a long time in large magnification just to make sure he didn't miss anything, right in front of me...

All my scholarly logic tells me - it's not the teeth...and yet when they hurt I can swear - it's the teeth. Or even one particular tooth (and of course it isn't the same one every time...it migrated many times back and forth...And yet it's human nature I can't help but wonder - is there perhaps a hidden infection they all missed...even when similar pain occurred on the right (albeit wasn't that strong)...

Sorry I know I make little sense...so tired...


Mimi said:

http://www.livingwithtn.org/forum/topics/everyone-with-tn-should-re...
Really great link that gives one of the best descriptions I've read of TN..

I'd like to write more but my vision isn't cooperating.. />
(Try again tomorrow)
Mimi (fellow Canadian )
40

I sure can relate. Really depressing when they tell you there's nothing wrong, no cause for what you're feeling. Then you have to pay them hard earned money for that lovely wisdom......all the while in agony. Being honest I think people like us are fucked. Especially if you can't take tricyclics. That's been the most help for me along with time release opiates, not the quick acting stuff. I'm disabled without it.

Various doctors have referred to it as various terms, atypical TN, neuropathic TN, atypical face pain, as well as idiopathic pain.

Edit:: as to other involvement, I have a burning/tingle down my the back of my arm to my pinky/ring finger on the same side as the face pain, nortriptyline took it away completely though. Also a burning pain in the side of my ribcage on same side.

Also I have chronic cysts on my back (tailbone and spine by shoulders) which is a lot like what my face feels like but the only inflammation they saw on an MRI was deep in the cavernous sinus and went away with steroids. Like if there was a cyst in my jaw pissing everything off that seems similar to what I feel.

I'm 30 and was in perfect shape before pain started more than 2 years ago.