Trigemenal Neuralgia or Atypical facial pain
Posted , 5 users are following.
I have been told for 2 years that I have TN, now I have finally seen a neurosurgeon and he says it is not TN it is Atypical facial pain and he cant help me. I think I have both from the way he describes TN and A typical facial pain. Severe pain that comes and goes and only lasts for a minute - TN and pain all the time that never goes away but is not as strong of pain as TN. Anyone else have this . The neurosurgeon says he cant help me and that I am just to go back to my GP and start looking at more medication. Currently I take Tegretol. and ativan. It helps me balance between pain and side effects as I have severe side effects from tegretol but its the only drug I can almost tolerate as long as I dont take to much. I havent been to work in 2 years because of the daily pain and side effects, again trying to balance and eek out some form of life between the pain and side effects. anyone else have anything similiar to this. My Atypical facial pain as they call it is only on the left side of my face, it hurts my teeth, roof of mouth, eardrum, cheek bone and sinus area under my left eye, it does move around , feels like a vice grip on my cheek bone, when in my ear its like terrible ear ache, sinus area it burns, the all the while my face vibrates, is brought on worse by noise like motorcycles, and perssures pain .
need some advice. please please
1 like, 8 replies
wanganui cindy67932
Posted
janine34099 cindy67932
Posted
Sorry to read about your pain and recent change of diagnosis. Not sure if my story will help but after suffering with facial pain since 2011 and going through the usual dental procedures, I was finally diagnosed with TN in June last year. Like you my pain is all left sided. I was initially put on Tegetol but after a week was changed to Gabapentin. However like you I found all side affects horrendous so when the pain stopped in November last year, I stopped taking my medication. I was pain free until May this year and in June I was admitted into hospital and my put on a high dose of tegretol and pregabalin.
Without going into too much detail, I just wanted to say that during the last 12 months, I have also seen neuro consultants, had numerous mri scans and when I explained at my last consultation in July that my pain was 24/7 and excruciating, she too said my symptoms baffled her as they were not short sharp pains lasting seconds.
As far as I am aware atypical TN (TN2) is the same but pain is 24/7. However I may be wrong here so don't quote me.
It's very difficult to get any diagnosis. I did think MRIs were supposed to be useful, so I would ask if you have had one of these?
I am finding that I have learned more from these discussion forums that my neuro consultant. I am sure there are some good ones out there but I haven't much confidence in mine.
Good luck.
Janine
richardvilla cindy67932
Posted
Proxy cindy67932
Posted
Keep hope alive.. I'll reply later
~from Keila and James
wanganui Proxy
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Proxy wanganui
Posted
Hi, I was guided to an idea that tooth abcess can lead to ATN through anaerobic infection. Then more specifically root canal as a procedure that introduces even a tiny amount of bacteria deep into the tissue, and then it is covered-up and sealed. The bacteria become anaerobic and incubate, becoming established in the dead tooth tissue. what makes this different from a typical abcess is the time it takes to get established. By the time painful symptons are experienced, the bacteria will likely have become established elsewhere. At this point the pain might be acute, at this point the sufferer may be experiencing the migration and infection of new territory following the nerves. Toxins released directly will feel like electical stings, toxins at low level carried into surrounding tissue will feel like tingling.
I'm going to stick to compelling connections in the most up to date research and with a view that ATN is extremely rare, it is not the first association made. In fact let me suggest that ATN is a misnomer. Symptoms are much better described by Multiple Sclerosis. MS is now widely thought to involve anaerobic bacterial infection of the CNS, and the release of toxins. I will start putting links on my profile.
It is hard to avoid a connection and if one is to put ATN in that place, everything begins to make more sense. I suggest ATN is MS localised to the head. A key feature may be the commonality of visual problems, blurring, and transient meningeal symptoms. The meningeal symptoms include sudden sever headache and reddening of the face, but with so many things going on... just adds to the likelihood of delayed diagnosis.
so.. thus far let me put the following statements out there and see how it fits:
ATN - It is only connected to TN by the TN. The majority of symptoms are not existing with TN. Thus the nomenclature is unhelpful. Instead of 'misdiagnosis', I say 'misnomer'.
ATN is better modelled on MS. This is backed up by symptoms in common that are not seen associated elsewhere. Vision blur for example.
Anaerobic infection of deep tissue as the underlying cause of both.
Root canal or wisdom tooth extraction and cover-up being the original point of entry and assists incubation.
In the case of ATN, any combination of 9 bacterial strains could be introduced through root canal procedures
In MS the bacteria under scrutiny is Clostridium perfringens, and the associated Epsilon toxin,
Use of nerve pathways for bacterial migration, especially Trigeminal, leading to the colonisation of areas around the eye and ear
PAIN
Perhaps the pain itself is proof perfect. An auto-immune attack is not symmetrical with the pain levels, movement of pain and differing types. Sure there is an immune-system response, against pathogens that are using the nerve tissue as cover. This isn't necessarily an self immune attack response, it's simply 'friendly-fire'.
Burning nerve toxin in tissue type
Burning/crawling nerve toxin in tissue type
Painful burrowing
Tingling/Stinging
'Electricity'
Stabbing nerve toxin to demylenated nerves
Jolting nerve toxin suddenly to freshly demylenated nerve ending
There's too much to say but there's a start!
That's all great but to stop the pain. Now? This is why Botox could be key. Ironically a nerve toxin!
Gabapentin.. does it in fact have some anti-bacterial, antibiotic properties? You may not be aware that it is also known as GBL, a very effective paint-stripper/aphrodisiac/recreational drug. Taking a 1500mg dose every 1.5 hours as many addicts do may very well upset the bacterial environment..If we are going to get to grips, we need to throw out the rulebook.
The truth contains everything. Everything is true. When science 'discovers' a truth, it likes to class it as a fact, and everything is wrong. Nowadays that fact is monetized. And any competing truth is sidelined. THIS is why medicine has gone wrong. We abandoned the Hippocratic Oath. Perhaps the truth is that we were constructed much better than this by Zeus and co., but in tampering with trial and error science friction, we often did more harm than good.
The ideas above.. I accept no credit for the gods being correct, if helpful in discussion, hope or treatment, thank them.
wanganui Proxy
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Proxy wanganui
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One wonders that there is a link since these antibiotics target DNA replication.. mutating friendly bacteria into nerve munching pathogens
September 2013: FDA Warning: Fluoroquinolone Antibiotics May Cause Permanent Nerve Damage (including trigeminal neuralgia):
The US Food and Drug Administration (FDA) recently issued a warning that fluoroquinolone antibiotics, taken by mouth or injection, carry a risk for permanent peripheral neuropathy. The safety announcement states:1
"The U.S. Food and Drug Administration (FDA) has required the drug labels and Medication Guides for all fluoroquinolone antibacterial drugs be updated to better describe the serious side effect of peripheral neuropathy.
This serious nerve damage potentially caused by fluoroquinolones may occur soon after these drugs are taken and may be permanent... The topical formulations of fluoroquinolones, applied to the ears or eyes, are not known to be associated with this risk.