[booklass]

I am curious to know how often everyone's TN has occurred alone or if it traveled in a posse with some other illness? I have an autoimmune disease, and it is possible that if this is confirmed as TN, it is comorbid with that illness. Since this whole thing took me by surprise, I am trying to figure out HOW I came to be in such pain in the hopes I can understand a way out of it. Hopefully the Lyrica will kick in....

[Gregcool]

Well mine just turned on one day, i have it in the right side of my face and teath, likea very hot burning feeling, its there all day every day , but some days i get it on both sides of my face, bummer im on sodium valprate which at the moment , is doing ***** all. Very sad. But yes !! Mine just come on slowley for a few weeks, then more and more intence,

[booklass]

Gregcool, I just saw the neurologist yesterday. It is possible my TN has been brought on by my low thyroid. Makes me wonder what other conditions can do this. I know any sort of autoimmune disease will. I am sorry that yours has decided to find a home in you. TN is the kind of guest who may never leave and is definitely not wanted. I am getting quite a bit of relief, thus far, with the Lyrica. I hope yours continues to respond into treatment or, better yet, just leaves.

[Gregcool]

Hi booklass, funny how you say your low thiroid started yours of, i was told by my doc i have an underactive thiroid just before my tn started. I was given meds fir this, but i had crap side efects for the thiroid isue, so i stoped taking them. Didnt think of that causing my tn. Do you take thiroid tablets, do they help your TN IN ANY WAY.

[Gregcool]

Also what is this medication you r on , how good is it

[booklass]

I am on Levothyroxine, but I have heard others say that Armour was the better one to be on. The thyroid issue is more complex than I realized before, and this is all brand new, as of a week ago, to me. Too soon to tell if it will help, but I know for sure that I MUST take some sort of medication because there are some nasties waiting in the wings, including nerve damage, if I do not. Something, probably the Lyrica, is helping with the TN. Or it could be the thyroid meds and the Lyrica. I started them all about the same time. They will take me off the Lyrica down the road, like in a couple of months, to see if the TN is gone. THEN we will know it was thyroid. Hope you can find something that works for you!

[dennipatti]

It has been confirmed by consultants that a tooth filling was the initial cause, the dentist filled the root cavity which is never a procedure and usually leads to the patient having the tooth out the very next day as the pain is normally severe. Mine did not work like that, a few weeks later in February 2009 I started to feel light headed, dizzy, confused and with a headache. Many visits to the doctor and depression was diagnosed which was not right. September 2009 I started to get sharp and intense pain from the chin to my ear. Very sharp quick jolts like a thin knife being pushed through my jaw. These came in little clusters at first but by October I had to see the doctor as by this time I had developed shingles. I was warned at the time I may get Post Herpatic Neuralgia and sure enough, four weeks to the day at some time around 11 am it just went bang. I thought my head had been chopped off from the temple to the middle of my head. I tried to phone emergency, the doctor on their emergency line (who just told me to get off the line as I was not an emergency), ordinary doctor's line, my husband who was unavailable and finally my sister who was the only one able to understand who I was as I was not able to say much but she lives four hours drive away. In between I misdialled so many numbers.

December 2010 and at last having a brain scan, my neurologist thought I had TN which prompted the shingles. But in January 2011 I changed my dentist and asked for the tooth to be checked and the exray confirmed the tooth had been shattered and completely filled and it had to be removed as it was beyond repair or cap. Two dentists and one surgeon confirmed the tooth may be my TN cause. The extraction did not remove the PHN or the TN which I still have. I take meds which seem to change every few months due to side effects.

The shingles destroyed four tear ducts and two saliva glands to the right side of my face, it was later found that my eardrum had somehow dislodged itself but because I have no wax production the old eardrum attached itself to the new one and this caused iching, pain and severe intollerance to sounds. I lost part of my vision and also forgot to mention in January 2010 I noticed I had lost the use to the nerves on my face, so I even lost half of my smile. I am due to have two teeth removed as I can't have them capped.

I suffer with hot, cold and breeze or wind intollerance to my head, which is easier to deal with in winter as it is hot and uncomfortable in summer as it's the slightest of breeze which causes the most pain.

Anyway I am now 59 years old. Two years ago I did not think I would make it. But I have improved tremendously and enjoy all my new found abillities. And I have given up trying to do things I used to do but can't now. Acceptance and patience I think is the key.

I found that taking the prescibed meds for the neuralgia and some ordinary over the counter meds worked the best. But the pain should gradually ease. I was told that the brain heels in 3 monthly jumps and if you get an improvement (if only just a little) and you are not too old, the brain will be renewed completely in four years. So I have another two to go. But I probably will never be rid of the TN.

Too much information. Take care.

[EE03]

Originally Posted by dennipatti

It has been confirmed by consultants that a tooth filling was the initial cause, the dentist filled the root cavity which is never a procedure and usually leads to the patient having the tooth out the very next day as the pain is normally severe. Mine did not work like that, a few weeks later in February 2009 I started to feel light headed, dizzy, confused and with a headache. Many visits to the doctor and depression was diagnosed which was not right. September 2009 I started to get sharp and intense pain from the chin to my ear. Very sharp quick jolts like a thin knife being pushed through my jaw. These came in little clusters at first but by October I had to see the doctor as by this time I had developed shingles. I was warned at the time I may get Post Herpatic Neuralgia and sure enough, four weeks to the day at some time around 11 am it just went bang. I thought my head had been chopped off from the temple to the middle of my head. I tried to phone emergency, the doctor on their emergency line (who just told me to get off the line as I was not an emergency), ordinary doctor's line, my husband who was unavailable and finally my sister who was the only one able to understand who I was as I was not able to say much but she lives four hours drive away. In between I misdialled so many numbers.

December 2010 and at last having a brain scan, my neurologist thought I had TN which prompted the shingles. But in January 2011 I changed my dentist and asked for the tooth to be checked and the exray confirmed the tooth had been shattered and completely filled and it had to be removed as it was beyond repair or cap. Two dentists and one surgeon confirmed the tooth may be my TN cause. The extraction did not remove the PHN or the TN which I still have. I take meds which seem to change every few months due to side effects.

The shingles destroyed four tear ducts and two saliva glands to the right side of my face, it was later found that my eardrum had somehow dislodged itself but because I have no wax production the old eardrum attached itself to the new one and this caused iching, pain and severe intollerance to sounds. I lost part of my vision and also forgot to mention in January 2010 I noticed I had lost the use to the nerves on my face, so I even lost half of my smile. I am due to have two teeth removed as I can't have them capped.

I suffer with hot, cold and breeze or wind intollerance to my head, which is easier to deal with in winter as it is hot and uncomfortable in summer as it's the slightest of breeze which causes the most pain.

Anyway I am now 59 years old. Two years ago I did not think I would make it. But I have improved tremendously and enjoy all my new found abillities. And I have given up trying to do things I used to do but can't now. Acceptance and patience I think is the key.

I found that taking the prescibed meds for the neuralgia and some ordinary over the counter meds worked the best. But the pain should gradually ease. I was told that the brain heels in 3 monthly jumps and if you get an improvement (if only just a little) and you are not too old, the brain will be renewed completely in four years. So I have another two to go. But I probably will never be rid of the TN.

Too much information. Take care.

Thanks for sharing your story. My heart goes out to you.

[dennipatti]

Thank you.