My Story - Any insight is welcome

General General TN & GPN (Old Site)
1

Hello All,

I found this site amidst my hunt to figure out what is going on with my body. I've been to doctors, dentists, endodontists, ENTs, etc. with no luck so far. From what I've read so far, it seems you all have a lot of wisdom and knowledge and I was hoping I could gain some insight into what I may be experiencing.

To give you some background - I am a 25 year old female with a completely clean medical record up until this point. I'm a therapist in a rehab center, so I have a medical background and so it's especially hard for me to not understand what may have caused this or what may be going on.

My story: On November 19th, I had my first ever dental work done - two fillings on the left side, top and bottom molars. As far as I could tell, everything went pretty routinely except I could feel little "twinges" from the drilling. I went back on December 3rd to have a final filling done on my bottom right molar. My dentist asked me if I was experiencing any problems with the previous 2 fillings and I wasn't at that point. The next day, I noticed some sensitivity in the bottom left molar (the one done 2 weeks prior). It was sensitive to cold and pressure. At night, the tooth would throb and ache - typical toothache stuff, which then progressed into feeling like I had an ear infection. I went to an endodontist who determined I had irreversible pulpits and that I needed a root canal. This root canal made that tooth sore for about a week, but other than that, the tooth sensitivity was gone. But, my ear was still hurting and that should've taken care of that pain. Shortly after, sure enough, the molar above that tooth began to go through the same cycle. Then two weeks later, the last filling went through that cycle: tooth sensitivity, throbbing tooth pain, ear/jaw pain.) Long story short, all 3 had to have root canals. My endodontist did not "overfill" the canals because we looked at the radiograph directly after to RCT and you can clearly see that they look just as they should with no material passing the tip of the root. On all 3 teeth, he said that there was no infection present but that the inside of my tooth was "inflamed" which he would expect to see. Another odd thing - on December 7th, I went to the ER because I woke up in the middle of the night with severe chest pains. All tests came back clear. I still have these chest pains, although not as severe.

Now, my symptoms have progressed, just in the matter of weeks, into a continuous ache throughout all 3 trigeminal nerve branches on both side of my face (beginning with the left side, because that's the side I had dental work done on first, and then about 2 weeks later, the right side joined in). At night, the pain is worse - no medication helps. At night I get shooting pains that extend from my scalp all the way to the tips of my fingers. I see a facial pain specialist on February 4th, but I just feel as if it is impossible to wait that long.

My PCP initially threw out a TMD diagnosis, but I know in my heart that this is not right. I do not have any pain with cranking my jaw open. Nothing seems to trigger my pain, or relieve it. The only thing I've found to be helpful is ice packs. I am working full-time. The pain is manageable during the day (maybe I'm not as focused on it?) But some nights, I get so depressed because of the unrelenting pain and the pain seems to intensify. I am able to sleep (I'm utterly exhausted at the end of the day), but sometimes I wake up in the middle of the night because of the pain.

Things I've tried to date: 2 medrol dose packs (the first one helped tremendously, the second one (which I'm on day 4 of, not so much...), all kinds of pain killers, even a shot of dilaudid didn't touch the pain, an infraorbital nerve block (made my face numb, yet still had pain), and I started Tegretol yesterday with no change in symptoms (although I increase my dosage today). Still waiting to see the facial pain specialist, as well as a neurologist and anesthesiologist (per recommendation of my ENT to do a nerve block at the trigeminal ganglion).

Has anyone hear of/experienced anything like this? I know I have some features of ATN, but I just can't wrap my mind around how this happened. Thank you so much for hearing me out. I have faith that God will bring healing into my life and I have that faith for you all, as well.

2

Hi,

So sorry you are going through this. Your story sounds familiar with many on here. Many of us start off having dental procedures trying to rid ourselves of this pain. Reading your story, my first thought is that your pain was caused by the dental work. You didn't have any pain before these procedures. That would mean that you have suffered a nerve injury during one or more of these procedures. It is very difficult to pick apart the difference between ATN and nerve damage with timing. It could be coincidental timing or the cause of your problem. Many people have had some pain and ended up in more pain trying to fix the problem. This happened to me. I have ATN. Had it first when I was 29. When I was 37 it started in one tooth, I had a root canal trying to fix it and it got worse, not better.

A common trait with many of us is that we are pain free in the morning. The pain comes on during the day and it is the worst in the late afternoon or early evening. The other thing that rings true is that no medication helps with the pain--anti-inflammatories or pain killers. The first line of treatment for TN is usually Tegretol. It takes time to increase dosage slowly and for it to build up in your system, so be patient with it. Each dose takes about two weeks to build up. If it is not successful then often a tricyclic anti-depressant can help with ATN type pain, such as Nortriptyline, Amitriptyline or Lyrica.

BUT there are a couple of things here that don't match up. The chest pain. That has nothing at all to with TN. TN is caused by a compression on the trigeminal nerve so it cannot affect other nerves. But there are other causes there such as some type of peripheral neuropathy, possibly MS and I'm sure other things that I have no knowledge of. You need to have an MRI to rule out MS or a tumour. Also, while there are lots of us that have bilateral ATN (I do). From the stories I have read it doesn't usually progress so fast. If it was a nerve injury then it can only affect the branch, or branches, of the nerve where the dental work was done. That is my understanding.

The other thing that really pops into my head is anxiety. Obviously dealing with an unknown, worsening and invisible pain causes anxiety. It is probably safe to say that many of us here share that and have gone through that multiple times. Last year I went through a very difficult time in my life. My TN exploded. Stress and anxiety do exacerbate it terribly. But what also happened to me is that I started having chest pains and neuropathy (pins and needles) in my arms, hands, legs and feet. Then that made my anxiety even worse. It's a vicious cycle. Those added symptoms were ALL caused by anxiety. It is very, very unhealthy and it can very quickly manifest itself into physical symptoms and turn into outright panic attacks. Have you been under a lot of stress or have gone through something big in your life? I have worked very hard to deal with my anxiety. It is a long process.

Obviously, this is all just my take on what you had to say. No matter what is going on with you this is the right place for you to be. Everyone here is very supportive and we do have a world of knowledge between us. Other's will join in. Ask anything, learn as much as you can and keep pushing for help and answers.

The reason that it is important to investigate the difference between TN and neuropathy or nerve damage is with treatments. Medications are the same to treat them but the invasive procedures used to treat TN do not work for damage and can make it worse.

Jane

3

http://www.livingwithtn.org/forum/topics/anyone-else-experience-nueralgia-in-tn-and-other-nerves

here is another thread of someone going through something simular

4

Thank you so much for your response, Jane. I actually had one night that I remember specifically with the pins and needles going through my whole body. And I know anxiety definitely plays into this (I did not have bad anxiety prior, but obviously this whole situation has created some for me). But, the pains just feel like they start in my face and then travel all the way down my arms and/or chest. It just feels so specific. It has also woken me up in the middle of the night.

I feel very depressed about the fact that I have not been able to find relief and the pain is constant. I do not have relief in the mornings, as some do. But, I can definitely feel the increase in pain starting usually around 3 or 4 PM.

I know it probably takes a while for the Tegretol to kick in, but it feels like even one more day is just too much to bear.

5

I'm sorry you in so much pain. I know exactly how you feel when you say just one more day is too much. I know how debilitating and frightening it is. I have been in that place many times. Just being aware of the anxiety may help it a bit. And I do not suggest anxiety having a part in your situation to minimize or negate what you are going through. I have had it and know how sick it can make you.

I have pain down my left arm sometimes. It is sometimes present in conjunction with a TN attack. It is so far unexplained...after two years and two MRI/MRAs. Fibro is another disease that I see come up a lot in discussions here. Unfortunately it can be difficult to find answers. Everything is a waiting game...the Drs, the tests, the meds.

I really hope you get some answers. I hope you can see the neuro soon. Do you have an appointment already? Give the Tegretol some time. It can take weeks to start to see a difference. Is your pain unrelenting then? Like it is there all the time...with varying degrees of intensity? It sounds really horrible. Hang in there. You are on the right track.

If talking with people helps you there are some very active groups on Facebook too

6

If you have TN1 - you would have it feel like lightning bolts in your face

if you have a burning, aching, constant pain

it would be called ATN -

Atypical Trigeminal Neuralgia

Pain meds don't work

Anti-Epileptic meds is what helps/ like Tegretol--- however - it makes many feel dizzy, loss of memory, lose words... but its better than the pain.

You can call your primary in some lidocaine cream to rub on your face.

If you can't sleep/ Lidocaine face patches will help till tegretol kicks in.

I live in KC.

Are you seeing a face pain doctor that is listed in the doctors tabs? Need one that has SEVERAL TN patients if at all possible.

Let us know what the doctor says!!!!

Kimberly

7

People say pain meds don’t work but That is not necessarily accurate. Oxy combined with gabapentin works to dull the pain. It never goes completely away, but it makes it liveable.

I wonder if some are just prone to neuropathic pain. When my TN is active my sciatica and my fibro both flare up so bad.

8

To answer your questions: My pain is unrelenting. I am never without it no matter what I do. At night, I keep getting shooting pains down the back of my head, arms, into my chest. Definitely not along the trigeminal nerve distribution. It is very specifically in the back of my head, as well as all over my face, which I find strange. My face lights up like the fourth of July at night...It feels like I have the "lightning bolts" of pain, but also the aching constant pain all day and all night long. It's like constant background pain with the bolts mixed in that happen intermittently (like once every 10 seconds or so). Although I have no triggers.

I have not seen a neurologist yet, as I am waiting to get into one. We have Tricare so everything has to go through a referral process which really sucks.

I just am having a difficult time processing all of this. I just can't believe this could be caused by a routine dental procedure, but I also don't believe in coincidence. Never had any problems until I had those fillings and the pain followed a definite pattern - from the left side of my face that got worked on first to the right side.

Thanks for the recommendation of the lidocaine - had no idea that could help. I see my PCP again Friday and by then hopefully I'll have a neurology appt set up.

9

Also look up Occipital Neuralgia--that goes to the back of the head down to the base.

10

im so sorry, your story sounds so much like mine. Yes it can start from dentst procedure, I too had a filling, then it turned into root canal, then more root canals, and then last resort pulling teeth. Please stop with the dentist, any procedure you do only makes the nerve pain worst! Go to a neurologist and pain management specialist. I got TN2 from the dentist and have been suffering sense! I’m on pain medication, have had many procedure and surgery and was told there is no cure, but it can be managed with medications. Some times the nerve calms down and pain goes away. The quicker you seek help for the nerve pain the better the outcome. It’s been a long 2 years for me, learning to put the pain in the back seat, so you can be in front and live your life is a constant struggle but with prayers, faith, there is hope! And you are not alone, as I am finding out on this sight, there are so many people who are suffering! There has to be a cure soon. Ice packs helps me to freeze the nerve, so I can sleep. I lay on ice on and off through tour a day. I hope this will help you.

11

What baffles me is that I had this bad pain before I even got the root canals (but right after the fillings). It was just the fact that the root canals did not help the pain go away, like they should. I figured the chances of a simple filling causing ATN would be slim to none - if not impossible altogether.

I'm just struggling right now because I am playing the waiting game and I have no answers. I have been told by a few docs that the pain may just resolve on its own and they talked about putting me on Tegretol for 2 months or so and then weaning me off to see if that "calmed the nerve down." Still waiting to see a neurologist, though...

I appreciate everyones' words of wisdom.

12

Hi Faith-full

I have tn as well as occipital neuralgia which gives me pain up my neck and over my head. I get nerve blocks for th o.n which help moderately. The Tegretol takes a few days to begin to work. Certainly by a week you should feel some relief. There are many meds to use but one piece of advice I would give is that once you find a med that works ask for it in slow release. This helps minimize the ebb and flows and gives much better coverage. I take Carbamazepine and Baclofen. I wish you all the best with the journey. Hugsbr/>


Faith-full said:

To answer your questions: My pain is unrelenting. I am never without it no matter what I do. At night, I keep getting shooting pains down the back of my head, arms, into my chest. Definitely not along the trigeminal nerve distribution. It is very specifically in the back of my head, as well as all over my face, which I find strange. My face lights up like the fourth of July at night…It feels like I have the “lightning bolts” of pain, but also the aching constant pain all day and all night long. It’s like constant background pain with the bolts mixed in that happen intermittently (like once every 10 seconds or so). Although I have no triggers.

I have not seen a neurologist yet, as I am waiting to get into one. We have Tricare so everything has to go through a referral process which really sucks.

I just am having a difficult time processing all of this. I just can’t believe this could be caused by a routine dental procedure, but I also don’t believe in coincidence. Never had any problems until I had those fillings and the pain followed a definite pattern - from the left side of my face that got worked on first to the right side.

Thanks for the recommendation of the lidocaine - had no idea that could help. I see my PCP again Friday and by then hopefully I’ll have a neurology appt set up.

13

Hi Faith-full

I have tn as well as occipital neuralgia which gives me pain up my neck and over my head. I get nerve blocks for th o.n which help moderately. The Tegretol takes a few days to begin to work. Certainly by a week you should feel some relief. There are many meds to use but one piece of advice I would give is that once you find a med that works ask for it in slow release. This helps minimize the ebb and flows and gives much better coverage. I take Carbamazepine and Baclofen. I wish you all the best with the journey. Hugsbr/>


Faith-full said:

To answer your questions: My pain is unrelenting. I am never without it no matter what I do. At night, I keep getting shooting pains down the back of my head, arms, into my chest. Definitely not along the trigeminal nerve distribution. It is very specifically in the back of my head, as well as all over my face, which I find strange. My face lights up like the fourth of July at night…It feels like I have the “lightning bolts” of pain, but also the aching constant pain all day and all night long. It’s like constant background pain with the bolts mixed in that happen intermittently (like once every 10 seconds or so). Although I have no triggers.

I have not seen a neurologist yet, as I am waiting to get into one. We have Tricare so everything has to go through a referral process which really sucks.

I just am having a difficult time processing all of this. I just can’t believe this could be caused by a routine dental procedure, but I also don’t believe in coincidence. Never had any problems until I had those fillings and the pain followed a definite pattern - from the left side of my face that got worked on first to the right side.

Thanks for the recommendation of the lidocaine - had no idea that could help. I see my PCP again Friday and by then hopefully I’ll have a neurology appt set up.

14

There is no “typical” for atn. All of us came by it in very different ways. Nearly 20 years ago I was a battered wife who had full beer cans thrown at my face, a bat, and a fist swung at me on occasions. 12 years after the last injury, I had my first brush with tn. The cause is believed to me calcified tissue in my face hitting the nerve in several places in my right side.



TN is an awful disease that is not understood completely. I watched a documentary on it yesterday and it said that 130,000 are living with it today in the US… Out of 300 million. We do not stand to make a pharma company billions, so why study it?



Hang in there. Are you near a teaching hospital? Sometimes they are the best resource to figure things out.

15

You do not have a diagnosis. It seems to me that

of work you have done may be irrelevant. I am

suspicious about the dental procedures.

Go to the prime neurologist at a major hospital.

Individual. As a medical professional you can find the individual.

TN is only a part of your entire diagnostic procedure.

You need a neurological work up; cranial, neck, and

spine. You need pictures and a neurological

group to evaluate the findings. TN is not a mysterious

unknown . In my area Washington, DC it is treated very

successfully as neurologic disorder.

Sorry for being so overbearing. I have seen too many

patients going down the wrong path.

16

Yes, I understand. I am just desperately searching for answers to at least some pain management, at this point. Everything happens slow when you have to do it through the base. If it was up to me, I'd already be sitting in the neurologist's office.

I haven't felt a difference on the Tegretol, yet (day 5) and feel like I need a change in medication or dosage. But that is happening slow, as well.

I appreciate everyone's guidance. Even though I don't have a diagnosis yet, I am definitely having trigeminal nerve pain. Just need to figure out why and what I can do about it.

17

Did I miss something---- are you full time active duty or is your spouse? I saw you said when you are on a base nothing happens quickly.

18

Lisa,

My husband is active duty in the Air Force.

19

Oy. My sister’s husband is full time army. She has a chrinic condition and yeah, getting off base care takes time. Ugh. However this makes sense to me as to the confusing dx’s. She got so many different diagnosis before she was referred off base and the real problem was found. Hang in there.