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Old 08-10-2012, 08:49 AM #1
erins1026 erins1026 is offline
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erins1026 erins1026 is offline
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Join Date: Aug 2012
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10 yr Member
Default Help me talk to my doctors!!

Hi all, I have not been diagnosed with TN but after obsessively Googling my symptoms for several days now, ATN is the only thing I can find that really describes my symptoms. I feel like my doctors aren't taking me seriously and think that I'm exaggerating the severity of my pain because they can't see anything wrong.

I am 22 years old, in good health, and have been experiencing facial pain on the right side of my face that usually presents as a nearly constant aching/throbbing pain ranging from a mild ache to an unbearable throbbing/burning pain sensation. It is occasionally accompanied a sudden shocking/stabbing pain. The only triggers that I have found so far is eating/drinking something very cold (a bowl of ice cream can bring me to tears), touching my gums or lips, or accidentally tugging a strand of hair on the right side of my head. Often the "attacks" occur with no apparent trigger. I have been popping Advil like candy and I don't really think they're doing anything. In the past few weeks, I have taken multiple days off from work, given up running (I'm an avid runner), stopped going out and socializing, and stopped writing because of my pain. Essentially, this pain is keeping me from functioning and living my life.

It feels as though the pain is originating from one of my right front teeth and I originally thought it was a dental issue. My first stop was the dentist who could find nothing wrong and told me I was probably grinding my teeth at night and recommended a mouth guard. Unfortunately, the guard sits on my second right front tooth which seems to be a trigger point for me and so putting the mouth guard on does nothing but cause more pain. I tried to fight through it, hoping that it would help, but it has gotten to the point where I cannot even bear to put it on so I gave up.

After seeing my GP, who had no idea what was wrong with me, I went to an ENT who checked out my teeth, ears, sinuses and the whole shebang. Everything is completely normal. After hearing all of my symptoms, he agreed with my dentist that I am probably grinding my teeth and therefore having a musculoskeletal problem. He prescribed me cyclobenzaprine (a muscle relaxer) to prevent me from grinding and Naproxen (an anti-inflammatory). These medications are doing nothing for me - I spent all night last night lying awake in agony. My ENT isn't scheduled to follow up with me for another 3 weeks and I just don't know how I'm going to last that long with no defense against this pain.

I am not a doctor, but I really am starting to think this is a nerve issue and not musculoskeletal. The whole time I was talking to my ENT, I felt as though he wasn't taking me seriously and thought I was exaggerating my pain because there is nothing visibly wrong with me. Regardless, I am at my wits end with this pain and don't want to wait another 3 weeks to see him and get a referral to a neurologist. Where do I go from here? I've even been considering going to the Walk-In clinic to see if I can get the ball rolling on my treatment but I don't know if that's a good idea.

Sorry for the length of this post but I'm just so frustrated.
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Old 08-13-2012, 02:41 AM #2
BethO2L BethO2L is offline
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BethO2L BethO2L is offline
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Never apologize to us,,we have all been there.

I would think that because you are so young they are not considering TN as an option,,it "usually" hits people who are older,,, however if you read through any of these threads you will find many people who are young who are effected with TN.

As well,, many MD's never see a case of TN,, EVER,, so don't assume that it is completely because they are not listening..

It sounds like TN but don't jump on the ATN diagnosis until you have seen a Neurologist,,which is your next step.

Contact your GP and tell them the truth,, that you have been in extreme pain (if it is interfering with your daily life that much and you have missed that much work ,,it constitutes as extreme or severe) and you have been researching your symptoms and you STRONGLY believe that you may have TN and you would like a referral to a Neurologist and can he/she recommend a good one in your local area.

Call immediately,, do not wait for your ENT,,if you have TN you won't need that follow up appointment anyway.. If you have to push for the referral do it,, They can't judge your pain,,only you can,, so don't let anyone try and diminish what you are feeling...

When you get your appointment with a Neuro,, write down everything you are feeling,,in fact if you can start keeping a pain journal,,do it... when your pain is worst , what sets it off,, where it is,,how it feels..
Also write down every question you have before you go in....trust me, we all forget when we get in that appointment,,,I've had ATN for 10 years and I still write all my questions down ahead of time...

A good Neuro will examine you and then ask you about your pain,, that's why having a journal is such a good idea...then he should give you a chance to ask anything you need to,, but stay open to the possibility that it is not TN,,there are still many things it could be.
They should order an MRI/MVA ( the contrast part of the MRI) to rule out other issues not to rule in TN.. Then they should put you on a low dose of Tegretol and tell you to call back in a few days to see if it helps with the pain. If you have any pain relief,,, well that's how they diagnosis TN...
from there it becomes a delicate balance of finding out if they can find a dose of Tegretol that you can tolerate and that controls your pain otherwise they will try a variety of other meds that all work the same way but react to everyone's system differently...There is probably a med that will help manage your pain (not completely relieve it) that you will also be able to manage the side effects....

So.. that's a quick run down of what to expect...if you need more help feel free to private message me and maybe we can work out a time to talk...

Whatever the diagnosis,, come back and let us know..OK??? Hang in there,, you can get the treatment you need you just may have to push a little to get it,,,,because in the end,, what does your MD have to loose by giving you a referral??? nothing.. So if you have to push,,push,, but really it shouldn't be that difficult if you explain to your MD what's happening to you as clearly as you've explained it here....you can do this...good luck.....
Beth
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