Aa
Undiagnosed & wondering - not TN, but maybe related?
I usually avoid consulting 'Dr Google' but pain has made me start to wonder if have TN.
2 yrs ago I had several months of facial pain & swelling. Initially, I was thought to have salivary gland stones due to the hard lumps to one side of my face. Eventually they decreased, but swelling appeared around my jaw & next. I had what I considered to be severe pain, and after months of increasingly stronger prescription pain meds, ended up in Emergency due to the ongoing pain in my ears, teeth upper mouth, temples, behind my eyes etc. Neither side of my head was favoured in this. I had an MRI & a biopsy which did not show anything concerning, although the night of the biopsy I had increased pain and swelling. My life was for some months severely affected by the pretty much constant pain and for about 2 weeks I was bedridden. The dentist had ruled out any tooth involvement early on. There was no evidence that I am a tooth grinder or clencher either. Somewhere during this time I experienced my first bout of vertigo. It was a woosy: the room span sideways for 6 hrs!
Eventually I was referred to an ENT specialist. After a long waiting time for the appt, the symptoms had eased. The ENT immediately dismissed any idea of tmj involvement, saying that swelling would not be involved. He diagnosed me with eczema of my ears, saying that would easily cause those pain levels. Drops were prescribed & I continued to have an easing of the symptoms.
Whenever my ears started to bother me, I would return to the drops & they largely worked - unless it turned out I had an ear infection.
Fast forward to 6 mths ago: I started to feel the tell tale signs of ear problems. Began using the drops again. Left ear continued to be a problem. Delayed seeing the Dr until I realised I probably had an infection. Months of treatment for infections & other ideas have followed. 4 wks ago I started to feel quite miserable with ear pain again. Had the same old feeling of tooth pain as well. Was again given all clear by dentist.
The thumping pain to my left ear, upper & lower jaw became constant. My ear canal although sensitive is not severely painful to touch, nor do I have any of the typical TN sensitivities of problems resulting from touch etc. 3 wks ago, it went up a notch. On top of the constant thumping pain has been something quite stronger. It is a cramping pain. Is it a stabbing pain as described in the diagnosis of TN, I don't think so? It can be intermittent, but also constant for decent stretches. But it is very very strong. I take my night time pain relief of oxycodone & feel 'relaxed' but still feel completely aware of the pain.
Life has been on hold for some weeks now. I gave a history of migraine. In the last 2 wks I have had 2 episodes of severe migraine like head pain & vomiting requiring medical assistance. The dr believes these were not actual migraines, but something triggered by the current situation.
An X-ray of the tmj has been done & I am awaiting those results & a referral to a maxillofacial specialist.
I feel I am heading back into another period - like I did 2 yrs - whereby I will get no closer to any answers & end up feeling a bit neurotic as if I dreamt the entire thing! Although I am not entirely afraid of experiencing pain, I am tired of passively lying about hoping that 'things' will get sorted!
Apologies for the long post & history...I threw it all in hoping to give a fuller picture. While I am not suggesting I have TN, I thought perhaps TN patients might have some ideas for me?
Thank you for listening!
AFA x
2 yrs ago I had several months of facial pain & swelling. Initially, I was thought to have salivary gland stones due to the hard lumps to one side of my face. Eventually they decreased, but swelling appeared around my jaw & next. I had what I considered to be severe pain, and after months of increasingly stronger prescription pain meds, ended up in Emergency due to the ongoing pain in my ears, teeth upper mouth, temples, behind my eyes etc. Neither side of my head was favoured in this. I had an MRI & a biopsy which did not show anything concerning, although the night of the biopsy I had increased pain and swelling. My life was for some months severely affected by the pretty much constant pain and for about 2 weeks I was bedridden. The dentist had ruled out any tooth involvement early on. There was no evidence that I am a tooth grinder or clencher either. Somewhere during this time I experienced my first bout of vertigo. It was a woosy: the room span sideways for 6 hrs!
Eventually I was referred to an ENT specialist. After a long waiting time for the appt, the symptoms had eased. The ENT immediately dismissed any idea of tmj involvement, saying that swelling would not be involved. He diagnosed me with eczema of my ears, saying that would easily cause those pain levels. Drops were prescribed & I continued to have an easing of the symptoms.
Whenever my ears started to bother me, I would return to the drops & they largely worked - unless it turned out I had an ear infection.
Fast forward to 6 mths ago: I started to feel the tell tale signs of ear problems. Began using the drops again. Left ear continued to be a problem. Delayed seeing the Dr until I realised I probably had an infection. Months of treatment for infections & other ideas have followed. 4 wks ago I started to feel quite miserable with ear pain again. Had the same old feeling of tooth pain as well. Was again given all clear by dentist.
The thumping pain to my left ear, upper & lower jaw became constant. My ear canal although sensitive is not severely painful to touch, nor do I have any of the typical TN sensitivities of problems resulting from touch etc. 3 wks ago, it went up a notch. On top of the constant thumping pain has been something quite stronger. It is a cramping pain. Is it a stabbing pain as described in the diagnosis of TN, I don't think so? It can be intermittent, but also constant for decent stretches. But it is very very strong. I take my night time pain relief of oxycodone & feel 'relaxed' but still feel completely aware of the pain.
Life has been on hold for some weeks now. I gave a history of migraine. In the last 2 wks I have had 2 episodes of severe migraine like head pain & vomiting requiring medical assistance. The dr believes these were not actual migraines, but something triggered by the current situation.
An X-ray of the tmj has been done & I am awaiting those results & a referral to a maxillofacial specialist.
I feel I am heading back into another period - like I did 2 yrs - whereby I will get no closer to any answers & end up feeling a bit neurotic as if I dreamt the entire thing! Although I am not entirely afraid of experiencing pain, I am tired of passively lying about hoping that 'things' will get sorted!
Apologies for the long post & history...I threw it all in hoping to give a fuller picture. While I am not suggesting I have TN, I thought perhaps TN patients might have some ideas for me?
Thank you for listening!
AFA x
I agree that it doesn't sound like TN. However the Trigeminal nerve and its branches affect so many parts of the face.
There are other facial neuralgias such as vaso-glossopharyngeal which affects the ear, throat, palate, and frontal neck; and geniculate neuralgia which feels like a ice pick in the ear.
During my own journey with TN, I went to five different doctors before I found number six, a facial pain specialist, and number seven, a neurosurgeon, both of whom worked together to help me become pain free.
I don't know much about the Australian medical system, so I don't know how easy or hard it is for you to search for additional medical resources. It may help if you are able to locate a facial pain specialist, someone who deals with facial pain on a daily basis.
A lot of these diseases, like TN, are considered rare and lots of doctors have no experience with them outside of the textbook.
Please let us know how you are doing. Sharing your story may help someone else.
There are other facial neuralgias such as vaso-glossopharyngeal which affects the ear, throat, palate, and frontal neck; and geniculate neuralgia which feels like a ice pick in the ear.
During my own journey with TN, I went to five different doctors before I found number six, a facial pain specialist, and number seven, a neurosurgeon, both of whom worked together to help me become pain free.
I don't know much about the Australian medical system, so I don't know how easy or hard it is for you to search for additional medical resources. It may help if you are able to locate a facial pain specialist, someone who deals with facial pain on a daily basis.
A lot of these diseases, like TN, are considered rare and lots of doctors have no experience with them outside of the textbook.
Please let us know how you are doing. Sharing your story may help someone else.
Sorry: did not mean
'I usually avoid consulting 'Dr Google' but pain has made me start to wonder if have TN. '
Meant to type:
I usually avoid consulting 'Dr Google' but pain has made me start to wonder if have a TN - related condition'
Sorry!
'I usually avoid consulting 'Dr Google' but pain has made me start to wonder if have TN. '
Meant to type:
I usually avoid consulting 'Dr Google' but pain has made me start to wonder if have a TN - related condition'
Sorry!
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