Lucky

General General TN & GPN (Old Site)
1

I came on to this site because I feel alone, frustrated, sad, angry about having TN. Now I feel somewhat guilty for those feelings, though I know my experience is just as legitimate as any other.

I am going to tell my story because I think it is a “success” story. Though I didn’t think of it that way at the time.

I have always had sinus issues, so when the first pain arrived, I thought it was late fall sinus pain. But then it migrated to my lower jaw. There aren’t sinus cavities there, so I saw my dentist whose x-rays showed no problems. What to do?

I next went to my PA, but this was above her pay-grade. She had no idea what it was, prescribed antibiotics. No help. By the next weekend I was frantic. By this point I was having sharp stabbing episodes five or eight times a day… And I don’t know what the medical texts are talking about; these lasted two to twenty minutes. Eating or drinking anything was hellacious.

I ended up at the urgent care. The doctor there immediately recognized TN. And this is the lucky part: I was only two weeks in to serious symptoms, and the culprit was identified.

That doesn’t mean everything went smoothly from then on out. He did take me off the useless antibiotics and start a gabapentin build up, but the neurologists in town had months-long waits to see them. That was ridiculous. TN is simply NOT another neurological disorder, it’s torture and should be handled as an emergency.

Even with the gabapentin building in my system, I ended up in the emergency room the next weekend because the TN triggered a migraine which caused me to lose electrolytes (vomiting) until I lost control of the right side of my body. Scary.

Luck was here too: I ended up at an ER with an MRI machine. Unfortunately for me it showed… Nothing. No recourse, no fixes.

But they agreed with the urgent care doctor, provided support to his diagnosis and upped my dosage of the gabapentin, which turned off the symptoms like turning off a tap. Again lucky.

If that doctor at urgent care hadn’t been so well versed in nervous disorders it could have been months before diagnosis, screaming into towels in the bathroom so as not to frighten my kids.

If I hadn’t responded so well to the anti-convulsant medications, it might have been months testing out products in a depressing spiral of hope and disillusion.

I have a terrible disease. I hate it. It affects me every day… But I’m lucky.

Weird.

Sue

2

Always good to look on the bright side :)

3

Hi Sue, my story is quite similar. An ER doctor, loved by me for his kindness all the time, was observing me and my "toothache" while I was there and said "something isn't right here." He looked it up and came and told me, symptoms matched exactly that day, I was very lucky. I feel awful for those who have professionals miss this disorder and think it is all these other things. It takes so long for many to get actual treatment. :(

4

I totally agree, Cherri.

I am still shocked and horrified that neurologists in my area were completely oblivious to the need for speed in treatment.

I am, again, lucky to have a family who needs me, and good medical coverage, but to be told initial consultation would be months away…? This is called the suicide disease with reason! Without such connections I could understand fatal dispair. I think this website and other such resources offer much needed connections and information. And fast!

Anyone experiencing the symptoms of TN needs to be taken seriously and treated immediately!

Sue



Cherri said:

Hi Sue, my story is quite similar. An ER doctor, loved by me for his kindness all the time, was observing me and my "toothache" while I was there and said "something isn't right here." He looked it up and came and told me, symptoms matched exactly that day, I was very lucky. I feel awful for those who have professionals miss this disorder and think it is all these other things. It takes so long for many to get actual treatment. :(

5

Yes, you are having a good remission stage… And lucky to get help quick.

I too found the diagnosis soon, and a good med soon… Then it went to shit. Long story… But happy ending after much of research on my part.

But the more you dig, the more you find…



Meds get less effective, and remissions shorter… TN Is progressive… The link I’m going to give you …is hope



ALSO

Get the book, STRIKING BACK by dr ken casey.



Here and there learn alllll you can.

Read, ask , learn , repeat.



Since you have TN1

Within three to five years…

You stand a chance for

Having a longer term fix with MVD.

BUT ONLY choosing a top surgeon in the US

WITH 90% + success rate

IF you don’t try gamma or cyber procedures first.



here is the link for your feelings…and for family and friends



http://www.livingwithtn.org/forum/topics/an-important-reminder-for-…

6

What is MVD? I keep seeing that acronym, but no one spells it out.

I would have to say, having just tried to reduce/go off meds, that I am not in remission, just being covered by meds. I have never been in remission to my knowledge, and just keep hoping that I can switch effectively between anti-convulsants as the meds become ineffectual.

Please do respond about the MVD procedure, I would like to hear more… And I’ll do my homework and get the book.

Thanks for your information!



Kc Dancer Kc said:
Yes, you are having a good remission stage..... And lucky to get help quick.

I too found the diagnosis soon, and a good med soon.... Then it went to shit. Long story.... But happy ending after much of research on my part.


But the more you dig, the more you find....

Meds get less effective, and remissions shorter...... TN Is progressive..... The link I'm going to give you ....is hope

ALSO
Get the book, STRIKING BACK by dr ken casey.

Here and there learn alllll you can.
Read, ask , learn , repeat.

Since you have TN1
Within three to five years....
You stand a chance for
Having a longer term fix with MVD.
BUT ONLY choosing a top surgeon in the US
WITH 90% + success rate
IF you don't try gamma or cyber procedures first.

here is the link for your feelings......and for family and friends

http://www.livingwithtn.org/forum/topics/an-important-reminder-for-...
7

Did you read the link about all the stages of grief?

I will send you a friend request so I can put it in a personal mail about MVD : )

8

Hey Sue....I too was convinced that my pain stemmed form an infected sinus. (That was after I thought it was the teeth and went to 4 different dentists only to have negative x-rays). 2 root canals (on likely suspects) and a few fillings later not much changed....alas. Then the GP thought it was a chronic sinus infection and put me on antibiotics....

My neurologist believes it to be Atypical Orofacial Pain. But he is still not sure it's idiopathic because it is very rare to have it on both sides. I have pain above right mandible and in teeth right under the right sinus cavity including incisors but also a little bit on the left in same region. CT scan showed nothing unusual. MRI showed enlarged lymph nodes in left cervical region. I can feel them sometimes especially when I come in from the cold. Not sure if it's infection or Hodgkin's Lymphoma, etc.

I can totally understand where you are at...When this condition first started I was in terrible pain and I still am sometimes though Lyrica (pregabalin) did seem to take the edge off. My pain was maddening, nothing helped, not ibuprofen, not toradol, not even morphine and I am on 150 mg daily for pre-existing chronic pain condition with my lower back. Bringing the dose up had no effect other than making me itch all over. The pain NEVER woke me up from sleep but it was often very difficult to fall asleep with this pain...

It always becomes worse towards evening, first it's severe pressure where my sinuses are anatomically, like my head is going to explode. Then - my pre-molars on top right begin to hurt/ The pain jumps back and forth and then sometimes settles on front 2 incisors which don't even have nerves in them - they've been pulpectomied (root canaled) and crowned before...But the pain is very strong and frighteningly real - you could swear it's those teeth...Before Lyrica there were times when I fainted from pain....It is hard to imagine just how insensitive doctors at the ER can be. They assume you come there to get drugs to get high. At one point I got mad and slammed the big bottle of morphine I had on the table to show him that I am in no need of opiates...then they just assume you are crazy....I was at the ER twice and they refused to admit me both times....

Anyway, I am glad anticonvulsants are helping you, girl. Personally I found out that just knowing exactly which disorder you have is half the battle. Hang in there!

9

Forget the guilt. We have NO room for that emotion on our plate! Congrats for meeting up with good doctors. Today is St Patrick's day and I celebrate your luck Sue!

10


You are so on point Jackie for the pain getting worse in the evening.Our condition, all of us, is effected by the barometric pressure. Everyday around eve the dew starts forming and we feel it. Do you see in the morning when you go outside and the grass is wet from the overnight dew? My shift at the hospital was always 3-11 and we were always taught through in-services that patient pain will increase in eve and night. Just wanted to drop a note to further justify that we are not crazy! So sorry dear about all that probably unnecessary dental procedures you had to endure.Don't even want to get me started about those losers in the ER. I am not Irish...But I think today we all have a little green in us. So Happy St. Patrick's Day!

11

Can’t thank you enough for the support.

It is really hard to explain this to people who haven’t experienced it. My lovely, loving husband seemed almost impatient with it until I ended up in that ambulance. Then, for the first time since we had kids, he dropped everything to just sit with me and be sure I got the care I needed (kids were at a neighbor’s for the day).

So if even the people closest to us can be in the dark, imagine how clueless strangers are!

I do think it is unconscionable for people in the medical world to be so clueless. I remember this from having my first son: the nurses acted like I was being unreasonable, interrupting their conversations, or just inconvenient to their day. I felt awful when I wanted to just enjoy having my baby.

Empathy is not just useful in personal relationships, but needs to be required training for anyone in care fields.

Equally important, if one is in pain management, then one needs to know the names and symptoms of the syndromes most likely to present pain symptoms. TN may be rare, but it is pretty darn clearly distinguished from sinus and tooth problems. Why all the unnecessary diagnoses, treatments and medications. This is an issue of education.



Moribund said:

Hey Sue....I too was convinced that my pain stemmed form an infected sinus. (That was after I thought it was the teeth and went to 4 different dentists only to have negative x-rays). 2 root canals (on likely suspects) and a few fillings later not much changed....alas. Then the GP thought it was a chronic sinus infection and put me on antibiotics....

My neurologist believes it to be Atypical Orofacial Pain. But he is still not sure it's idiopathic because it is very rare to have it on both sides. I have pain above right mandible and in teeth right under the right sinus cavity including incisors but also a little bit on the left in same region. CT scan showed nothing unusual. MRI showed enlarged lymph nodes in left cervical region. I can feel them sometimes especially when I come in from the cold. Not sure if it's infection or Hodgkin's Lymphoma, etc.

I can totally understand where you are at...When this condition first started I was in terrible pain and I still am sometimes though Lyrica (pregabalin) did seem to take the edge off. My pain was maddening, nothing helped, not ibuprofen, not toradol, not even morphine and I am on 150 mg daily for pre-existing chronic pain condition with my lower back. Bringing the dose up had no effect other than making me itch all over. The pain NEVER woke me up from sleep but it was often very difficult to fall asleep with this pain...

It always becomes worse towards evening, first it's severe pressure where my sinuses are anatomically, like my head is going to explode. Then - my pre-molars on top right begin to hurt/ The pain jumps back and forth and then sometimes settles on front 2 incisors which don't even have nerves in them - they've been pulpectomied (root canaled) and crowned before...But the pain is very strong and frighteningly real - you could swear it's those teeth...Before Lyrica there were times when I fainted from pain....It is hard to imagine just how insensitive doctors at the ER can be. They assume you come there to get drugs to get high. At one point I got mad and slammed the big bottle of morphine I had on the table to show him that I am in no need of opiates...then they just assume you are crazy....I was at the ER twice and they refused to admit me both times....

Anyway, I am glad anticonvulsants are helping you, girl. Personally I found out that just knowing exactly which disorder you have is half the battle. Hang in there!

12

Welcome, Sue! Good news that your TN is controlled with a relatively low dose of a med. We share your joy that things are going well-- we are at all different stages in our TN journey, some of us doing well while others who feel like we are living in own daily Hell. Learning, as KC said, is power over this condition and your ability to control it. Don’t feel guilty either and if you were truly lucky, sweetie, you still wouldn’t even know what “Trigeminal Neurologia” is.

13

Mine also was blamed on botched root canal so the tooth was pulled and down hill from there. E.R. experience: take Tramadol and call your GP. I have atypical. 8 months before diaganoses. Been on Tegretol for 1 1/2 years. Trying Trileptal,4 weeks going back to Tegretol. Welcome to a group who supports you from near and far.

14

Sue:

First of all, I am glad you found us! This site is full of people who not only understand what you are going through, but can also empathise.

Most of us have been through the run around of doctors. I myself have had several mis-diagnoses.

I hope you find strength and support from the people on this forum. I know I did, and still do.

Smash