Ha ha! Thanks, Cleo, I had much fun with this one. Reminds me of anatomy or neurophysiology lecture materials (except for the syringe part of course). In a way this one is almost a "do it yourself" crash course...Knowing me I might consider it one day because this just might be the only way to ascertain exactly which nerve or branch of nerves is hurting me. Inject and see approach LOL
According to the location of pain I only figured that it's the superior and anterior superior alveolar nerves and buccal branch may be involved too. Both superior and anterior branches go RIGHT THROUGH the bottom of the sinus. Now - Interestingly only a couple of years before I started getting this pain both of my molars on the top exactly opposite to one another left and right were extracted, one after unsuccessful root canal and one broke. After that the maxillary sinuses began to descend downward and expanded into where teeth were (which I was assured is normal). But I can't help but wonder if this is somehow related. The pressure that I experience in the face exactly matches location of sinuses - at first only maxillary sinuses were hurting especially one on right, now, it seems ethmoid and other sinuses have this pressure as well. Headache and toothache always follow this pressure worsening in evening.
But despite having been told by more than 3 doctors that what I am describing is a sinus infection possibly bacterial in nature - the CT and MRI showed clear sinuses. So of course off to the neurologist I was sent and out came "Atypical Orofacial Pain" explanation.
I am still waiting for ultrasound and ENT for endoscopy of sinuses. The first is only on 17th, the second - I haven't even received a call yet...And only then they want to do biopsy of lymph nodes which is a big if... My thinking is that if this is all indeed related and serious (considering other symptoms I have like weight loss, nausea and sweats) then by the time they do all these tests it will be too late and I will have something inoperable by which time they will send me home with a big bottle of painkillers and "Psychology of Death and Dying" handbook (which I am already very familiar with from school years :-()... ouch
But hey, on the bright side I wasn't in a lot of pain today... sometimes whatever this is gives me breaks... Once again - Great Find!!
Cleo said:
Yeah, idiopathic just means "unknown etiology (cause). Just a fancy name which makes the public think they have an explanation LOL Google "Nominal Fallacy"
I am amazed that opiates have an effect on your pain. For myself I noticed that the closer the pain is to its true source (the brain) - the less analgesia opiates provide. For example - ibuprofen (advil) in large doses was always far more effective for my normal toothache and headaches than percocet and morphine.This thing however isn't so far affected by either ...
But then again - with you it seems that it's not just the cranial nerves that are involved and you take nortriptyline in addition to morphine. Burning pain you are describing could also be a symptom of Shingles...but my guess is you probably tested for that already...
I can sort of relate to what you are saying - I often feel that the overall quality of pain in my jaw and teeth is similar to that in my lower back...for some reason it feels "wet" until it gets very strong and I experience its "electric-like" quality. I can exactly explain why I think that - it's an unusual description. But I have a neuropathy of the lower spine - perhaps etiology is similar there as well - who knows...
In Canada, where I live, healthcare is free (with a large number of exceptions). But that in turn only means that it's more likely to be sub-standard with huge waiting periods for treatment which is especially true because we have a deficit of doctors and the government politics involve denying the opportunity to foreign-educated doctors. :-(
Shindig said:
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.
Cleo… Can you make sense of why some of us leave the oral surg. And get TN on the opposite side of where the idiot worked on me? I felt it within 24 hours but trying to help others understand why is on opposite side. Thanks!
I'm going to have to study this better!
My LEFT bottom wisdom tooth/jawbone sawing
turned into taser lightning strikes in my top RIGHT cheek
Within 24 hours in the ER.
I need an anatomy 101 !!!
Maybe this little stroke I had unrelated this summer is making it harder for me to figure this out!
Thanks - still trying to grasp! : )
Thats what makes me think while i was out… Did he give me whiplash ? I have nothing else i can figure.
Hah. What you say about being remembered as the person you really are before the pain took over. Try having a nine year old, who is now 12 try to remember who you were before you got this. I always think of this. How she has to see me like this and her impression of me. This is what hurts the most. Taking her to the beach to swim with her friend and I want to scream because all I want to do is lie down. But I take her and get criticism for not swimming with her. I can hardly stand to walk my skull feels like it will crash through my spine! Eat a meal while we are out? No I starve until I get home hoping not to choke on my food and that is now soup always soup. Can’t chew anything. But I go to Dr and he says I need a distraction from the pain… Hope my daughter can remember something and soon when she is a little older I will make that decision…