Discussions By Condition: I cannot get a diagnosis.

Trigeminal Neuralgia? Atypical facial pain? Infection?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • August 18, 2009
  • 06:24 AM

I'm doing this for my wife. She started experiencing migraines 2 weeks after MY first bout with viral meningitis 18 years ago but never tested positive herself. At age 34(3 years ago) she started having severe facial pain following the entire path of the left trigemic nerve (chin,cheek and forehead as well as down the left side of her neck). her symptoms match atypical facial pain but are constant with increases due to activity such as eating or talking. It got so bad that over a 7 month period, she couldn't eat enough and lost 60lbs. She has since gone on long term disability. She's seen specialist after specialist and no-one seems to know what's going on. They suggested trigeminal neuralgia ONLY after i asked about it.

Around the time it all started, she had all 4 wisdom teeth pulled in one sitting. unfortunately, the dentist missed the fact that one of them was still cemented to one of her molars and he actually pulled her jaw out of joint. Something else the dentist did was rip open a pea sized hole in the roof of her mouth exposing the palate ( i think as what was revealed was white as teeth)

She's had 2 mri's. The first showed what they called an incedental (can't for the life of me remember what it's called, but my e-research did not come up with it being something found on temporal lobes, but it was definately felt to be of no significance by the MRI tech. IF important i can find the report in a stack of medical reports i have somewhere) on one of her tempral lobes. none aparently show nerve damage. However both show fluid build up in her left mastiod. The second Mri showed the start of fluid build up in her right mastiod. She gets ear infections on a regular basis. As well as experiencing regular incidents of what she describes as fluid drainage from her ear. Something the Ear Nose Throat specialist said was "impossible" even though i'd witnessed it, sometimes it's clear, orange or even a greeny brown colour on occasion.

She was diagnosed positive for mono as well as some sort of swelling or lump on her thyroid. The lymph nodes in her neck were also swolen at times. However an oral surgeon has ruled out TMJ.

Since her extraction, a lump has formed in the soft palate of her mouth. Dr's have said it's been there most of her life regardless of how often i temm them there was no lump at all a few years ago. TRUST ME, I KNOW. Use your imagination and you can figure out how i KNOW.

The second MRI showed a herniated C7 disc.

Our family Dr has her on meds that do help significantly, however, she's one that suffers badly from whatever side effects her meds can cause. Analgisics did absolutely nothing. Anti-inflamitories did less. The ONLY thing that has worked in lessening her pain has been opiads. She started out with 10mg oxicodone 6 times/day and is now needing up to 30-40mg per dose. As well she's using a 100mg+25MG Fentanyl patch. amitryptiline (75 mg/day) helps, as does Lyrica (2x300mg/day). She does not experience any "roller coaster" effects in the pain. It does not get worse. The doseages have increased over the almost 3 years due to tolerances developed. She is "dependant" but not "addicted" and no longer experiences any of the "pleasurabe" effects of the narcotics.

Could this be due to an infection that may have spread from her mouth through the opening in the roof of her mouth?

The specialists in the Toronto area have been no help. Is there something more exotic or un-common someone could suggest looking at?

We're somewhat frustrated.

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3 Replies:

  • I'm doing this for my wife. She started experiencing migraines 2 weeks after MY first bout with viral meningitis 18 years ago but never tested positive herself. At age 34(3 years ago) she started having severe facial pain following the entire path of the left trigemic nerve (chin,cheek and forehead as well as down the left side of her neck). her symptoms match atypical facial pain but are constant with increases due to activity such as eating or talking. It got so bad that over a 7 month period, she couldn't eat enough and lost 60lbs. She has since gone on long term disability. She's seen specialist after specialist and no-one seems to know what's going on. They suggested trigeminal neuralgia ONLY after i asked about it. Around the time it all started, she had all 4 wisdom teeth pulled in one sitting. unfortunately, the dentist missed the fact that one of them was still cemented to one of her molars and he actually pulled her jaw out of joint. Something else the dentist did was rip open a pea sized hole in the roof of her mouth exposing the palate ( i think as what was revealed was white as teeth) She's had 2 mri's. The first showed what they called an incedental (can't for the life of me remember what it's called, but my e-research did not come up with it being something found on temporal lobes, but it was definately felt to be of no significance by the MRI tech. IF important i can find the report in a stack of medical reports i have somewhere) on one of her tempral lobes. none aparently show nerve damage. However both show fluid build up in her left mastiod. The second Mri showed the start of fluid build up in her right mastiod. She gets ear infections on a regular basis. As well as experiencing regular incidents of what she describes as fluid drainage from her ear. Something the Ear Nose Throat specialist said was "impossible" even though i'd witnessed it, sometimes it's clear, orange or even a greeny brown colour on occasion. She was diagnosed positive for mono as well as some sort of swelling or lump on her thyroid. The lymph nodes in her neck were also swolen at times. However an oral surgeon has ruled out TMJ. Since her extraction, a lump has formed in the soft palate of her mouth. Dr's have said it's been there most of her life regardless of how often i temm them there was no lump at all a few years ago. TRUST ME, I KNOW. Use your imagination and you can figure out how i KNOW. The second MRI showed a herniated C7 disc. Our family Dr has her on meds that do help significantly, however, she's one that suffers badly from whatever side effects her meds can cause. Analgisics did absolutely nothing. Anti-inflamitories did less. The ONLY thing that has worked in lessening her pain has been opiads. She started out with 10mg oxicodone 6 times/day and is now needing up to 30-40mg per dose. As well she's using a 100mg+25MG Fentanyl patch. amitryptiline (75 mg/day) helps, as does Lyrica (2x300mg/day). She does not experience any "roller coaster" effects in the pain. It does not get worse. The doseages have increased over the almost 3 years due to tolerances developed. She is "dependant" but not "addicted" and no longer experiences any of the "pleasurabe" effects of the narcotics. Could this be due to an infection that may have spread from her mouth through the opening in the roof of her mouth? The specialists in the Toronto area have been no help. Is there something more exotic or un-common someone could suggest looking at? We're somewhat frustrated.Look into jaw cavitation. Wisdom teeth removal along with root canals can lead to cavitation and infection.Here is a website pointing to similar findings: whattimetuesday.comLook into Upper Cervical Chiropractic treatments.Take Care - Peace be with you and your wife.
    Anonymous 42789 Replies
    • October 8, 2010
    • 10:46 PM
    • 0
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  • Look into jaw cavitation. Wisdom teeth removal along with root canals can lead to cavitation and infection.Here is a website pointing to similar findings: whattimetuesday.comLook into Upper Cervical Chiropractic treatments.Take Care - Peace be with you and your wife.THANK YOU VERY MUCH!!!!! that makes a LOT of sense.However, there's something new. In Feb 10 she had her first of 3(so far) bouts of what seems to be vilus related dilirium. She would be fluish for 3 days. Severe nausia completely prevented her from taking any of her meds (antidepresants and opioids). The delirium would last 3-3 1/2 days with improvement starting after about 36 hours. I'd describe the dilirium as a withdrawl based confusion and lack of cognitive function, yet she would go to the bathroom by herself successfully. The 2nd time, i got her to the Hospital while she was symptimatic but had started improving. They heard what meds she was on and went straight to treating her like a drug addict. They completely ignored ANYTHING that wasn't narcotic related. Since i'm on the same pain meds, i was a drug addict too and not worth believing (except for the fact that i take narcotics, they took my word on that real easily). Every test they did was related to her meds and they ALL came back contrary to what they expected, yet somehow matched everything i told them. The 3rd time, i made sure she took at least some of her med doses. This made absolutely no difference in her symptoms or the length of the delirium. She refuses to go to hospital because of the way she was treated. They focused solely on narcotic related causes even though the tests showed there were none in her system at the time. And 3 days after the delirium, when they finally looked at something other than drugs, her urine tests all came back "pristine".She does suffer from OAB. which was actually caused by a surgeon who "opened up" her eurithra which had to be closed back up almost completely eliminating her OAB. but this was all completed more than 14 months before the first instance.
    Anonymous 42789 Replies
    • December 6, 2010
    • 02:20 AM
    • 0
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  • It def sounds like TN, and as you may know by now, it does often get triggered right after dental work. I have been diagnosed with Bi-lateral Trigeminal Neuralgia for the last 8 yrs until Mayo clinic in MN. just eliminated that through extensive testing, and gave me a loose diagnosis of chronic daily migrine, but I've just learned that I have an even more rare condition called Eagle syndrome, which often gets misdiagnosed as both TN and chronic migraine so hopefully Im actually on my way to recovery... rather than on my way to heaven. Feel free to check out my story at www.patientsweb.org/Cameron . Good luck to your wife, I know my wife has truely struggled through this ordeal, but we are closer than ever from it. Sincerely Cameron (32yr m, Boulder, Colorado)
    Cameron9 3 Replies
    • November 29, 2011
    • 04:34 AM
    • 0
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