I'm considering seeing a specialist at the hospital about this condition, but since I don't have insurance I want to see if my symptoms relate to anyone else's before I spend the money I don't have to see the doctor.

Here's what I have going on, and have had for about two years now:
Burning, relentless aching on the right side of my head just before my ear, running vertically along my head. The pain seems to radiate from this point and, in turn, causes stabbing, tingling, and aching in my right cheek, nasal cavity, and upper & lower jaw. I also get aching and burning in my frontal and rear temporal muscles. The pain last for 10-14 hours at a time and no medications (OTC) seem to help at all. There don't seem to be any specific triggers, and only rarely do I find these areas sensitive to touch. It's just non-stop ongoing terribly boring pain.

I've attached an image that indicates my pain.
Pink means aching, and a less severity while red means intense deep burning and high level of severity.


Please, any information will help; I don't know what to do and I can't keep dealing with this as it stands.
Thank you!

Attached Images

Gray784.png (151.8 KB, 4552 views)

Your description is spot on to what I've been feeling on the left side of my face. The burning began on the left side of my tongue 5 years ago when I was only 19, and has spread into my gums, jaw, ear, etc. The dentist kept shrugging it off as burning mouth syndrome, eventually I couldn’t take it anymore switched my dentist and was sent to an oral surgeon (same that removed my wisdom teeth 9-10 years ago). He found nothing and sent me to a neurologist, whom assumes it is Trigeminal Neuralgia. MRI and CAT scans came back clean, so we tested medicines for an entire year that all failed while my pain continued to increase. All the while I'm trying to do well in my college classes while working part time. Lyrica provided me some small relief which has since waned. With all the meds failing I was sent to a neurosurgeon to speak about MVD surgery, he changed my diagnosis to Atypical Trigeminal Neuralgia.

My surgery was scheduled for October 2011. Before surgery I appeared ill and eventually fainted after the IVs were connected. Surgery was cancelled and I was admitted to the hospital for a high blood count, after some tests they found I caught C Diff, a contagious stomach illness, during the pre-surgery examination. I was put into isolation and forced to spend a night at the hospital. It then took me about 2 months to finally completely get rid of C Diff. I had not gone to school that semester in hope of surgery and now had to choose yet again if I should skip another semester or have surgery. I chose school and finished up my sophomore year with hopes of surgery in early summer.

Right before finishing school I had some minor cavities filled on the right side of my mouth. When leaving the dentist she said in approximately a half hour the numbing effect would wear off. 10 hours later I’m considering going to the hospital because it still feels like I was just injected. I decided to sleep it off and the next morning the numbness was mostly gone. A faint numbness and bruise-like feeling lingered months after the procedure. I went back to the dentist three times; she even took free x-rays and couldn’t find anything wrong. My family doc believes she may have injected a nerve and he said some uncomfortable feeling could stay for some time, but it has now been 6 months and my right side is feeling similar to my left side, minus the constant burning (thank God). Both sides feel like there’s a shoe string going around my cheek bone and ear that is constantly being pulled tighter without ever releasing any slack. My cheeks at times tingle like they are asleep. At times putting an earplug in my left ear helps the sensitivity of my pain.

So anyway surgery has been delayed on the left side until both sides are checked out thoroughly by the chief oral surgeon at the hospital, who supposedly is good at determining if it is indeed trigeminal neuralgia. Of course because he is the chief of the department he was very booked up and I have to wait a month and a half to see him. Depending how long it all takes I’ll probably be forced with the dilemma of missing school again.
Sorry I typed so much I haven’t been on the site much since my last hospital stay. I’m sorry r0xmyface0ff this probably isn’t a story you want to hear, without insurance I don’t know what I would have done. I was without insurance the first year of my pain so never really got it checked out at the time. At this point I only have two years left on my mother’s plan so I’m hoping to get some major help before that time, although Obama’s plan may change some things. If you do decide to pay to see someone definitely make sure they are educated about ATN/TN or better yet specialize in it, I’ve seen a handful of doctors that know little about it and therefore are clueless or misdiagnose.

Not very good news to report. After finally seeing someone who knows a great deal about TN I've been told I should have never been a candidate for surgery. So in a way I'm told I'm lucky because I never had the MVD. The doc was baffled as to why the right side has become numb and thought of MS or fibromyalgia, although no signs of MS on last years MRI. Overall I’m more in the trigeminal neuropathy or atypical facial pain class and there isn’t much the doctors can do. An option is to seek treatment at a Pain Management Center. I’m sorry there isn’t much else to say, I was hoping on surgery to solve my problems so now I’m depressed. For those of you new to the site check out John Hopkins website and go to the Trigeminal Neuralgia Center page to get some information and view videos, including an hour long seminar by Dr. Lim on trigeminal neuralgia which at points touches the atypical pain as well. Dr. Lim does not recommend surgical procedures on most atypical patients that don’t have the symptoms of classic TN like the electric/stabbing episodic jolts.

So sorry to hear that you have been through do much with this,,,and being so young makes it even worse. I can understand the hard decision you are facing sine my daughter has CFS and because of misdiagnosis and trying to find someone who could treat her,, she too had to postpone her last year of college for about two years,,,

I can say very honestly that you are VERY lucky that you did not have the MVD. It would have only made it worse. I have Atypical TN and developed AD after having the MVD,,, you lucked out,,be grateful.

It may not be much help but don't give up hope,, it sounds SO easy when they give you the stats on the MVD and we ALL want a procedure or a pill that is going to make this horrible disorder go away,,,but it's just not that easy...

It may be a long shot but check out the thread on PNS,,,, I had mine implanted 6 months ago and it saved my life,, and I am completely serious about that.... perhaps since your pain is so difficult to treat you might be a candidate for it,,,, at least look into it.
Unluckily your regular MD or Neuro will not be able to advise you on this...this procedure is only (safely) being done at a few hospitals in the country....however you may be able to send your records to Cleveland and have them reviewed to see if you fit their profile..I would at least consider doing that,,,, and your insurance would cover the office visit because you are always allowed a second opinion...

Feel free to private message me if you would like and perhaps I can help a bit more,,I have been a support group leader for many years and might be able to help see if some lifestyle changes might help as well...I can also give you more info on the PNS since I have one....
the offer is there if you need me...Good Luck Beth

Hi Beth...
Can you please tell me what the PNS is that you had that saved your life? I have ATN and am at my wits ends with this friggen pain and my neuro telling me, "sorry, no surgery for ATN patients it can make it worse!"

Thanks,
Katie

So sorry,,I should be more specific with that.

PNS or Peripheral Neuro Stimulator is basically a neurostimulator that has be used to help chronic nerve pain in backs for years only it is being tried in an experimental capacity for TN.

If you google neuro stimulator you will get the basic idea of what it is and how it works,,or you can look at the thread here under TN that is listed as PNS,,, it probably has 35pages so I'd only read the last few there is plenty of info there to help you understand the procedure so I won't cover that here..

The bigger issue is are you a candidate (I have ATN and was lucky to respond well) and because it is still considered experimental for TN,, where to have it done. There are only a few places that have been doing it long enough to know what they are doing and where you can be confident of good results.
The other issue is programming...the Rep from the company that makes the unit is not qualified to program them for TN,, they haven't been trained to so even if you go to a great Surgeon and he does a great job if you don't have the proper programmer to back it up you've wasted the effort.

The other issue is insurance,,just because it's experimental doesn't mean that your company won't cover it especially if it comes from a clinic and an MD well known for doing these for TN and with good results..

I was lucky enough to go to the Cleveland Clinic and I'm biased but that's where I'd recommend,, yes because I had good results but more so because I have medicare because of my TN and other disabilities...and they are notorious for declining stuff like this and I had my approval back in two weeks...because it was from Cleveland and because of the MD...no question about it...

He said to me at my first visit ,,well we will be doing you in about 6 weeks and that's because of yhe holidays (I saw him the week before Thanksgiving) I thought he was crazy,,that there was no way it would be that fast,,my procedure was in mid-January and that's because I had to push it back because of travel arrangements......

I have no doubt that other insurance companies may be different but if MEDICARE approved it then most any insurance company will sooner or later...

There is a lot entailed with getting a PNS system and they are not perfect.the TN isn't gone it's another tool to help control thr pain but for many it can be a 60-80% reduction in pain....,,mine is somewhere about 70%...

If you want you can private message me as well and I can give you whatever help I can...I can also call you,,if possible,, and help explain or answer any questions..... FYI there is a hospital in Chicago but I don't care for the units they use I don't think they work as well for TN and a place in Colorado...there is probably someone who knows more about that one and recently a hospital in Tampa has begun doing them but I don't have much info on them yet...

Hope that helps....Beth

Hey there, im really sorry for all your pain.
Yes i strongly recommend you see a neurologist, of course i am not a doctor but i have ATN and 90 percent of what you describe is what i suffer from. Unlike classic TN which tends to be short sharp burst of very strong electrical pains etc, ATN can have that horrible deep knawing pain that for me, goes on for hours and hours, sometimes constantly with intermittent horrible stabbing sensations.

I understand you diagram fully, all of the hilighted areas cause bad pain but the degrees of pain and sensation of the pain feel different or worse in some spots, exactly what i have suffered from for years.

You should get evaluated as certain anti-epileptics (im on tegretol) can help to greatly reduce or 'calm' the level of pain for many.

Depending on the cause of TN surgical treatment can be helpful but only after explaining your pain history thoroughly to a neurologist can they guide you in the right direction.

It IS worth the money for even some relief at least, i lived in agony for a long time hoping for it to just 'go away' and i regret that very much, get some meds that might help ease the pain at least so you feel you can function. (for some lucky people, meds can make them virtually pain free)

Best of luck to you and if you need to chat anymore about it please let me know as this is extremely similar to what i go through, your not alone!!