I apologize for this taking so long and for it being sooo long and for it's lack of eloquence and for all the spelling errors. I'm trying to hurry but I want to do a good job of explaining things and I don't want to leave anything that may be important out.  Lyme has affected my mind.  Words used to be my "thing" and now I have a hard time thinking of the words I need and putting them together so that they sound good. I want to do a good job because TN is such a horrible thing. It is difficult for me to think of anyone suffering the way I did.  If you believe in God I would ask you to pray before you read this, that he may be able to help you to understand what I am trying to say and let you know in your mind and in your heart what is true and pertains to your situation. 

 I can think of nothing worse in the world than TN.  For a long time there was nothing I feared more than TN.  I know those seem like strong words but if you have TN you understand.  

WHAT I BELIEVE and DON'T BELIEVE and why

1. I believe there is a cure for everything. Just because one person doesn't know what it is doesn't' mean someone else doesn't, God knows everything. 

2. I do not believe TN is caused by a vein wrapped around a nerve. Autopsies have been done on cadavers with veins wrapped around their trigeminal nerve and they don't have TN. We have veins and nerves intertwined throughout our bodies but we only get TN pain in one spot.  Wouldn't a vein wrapped around a nerve in our hand or leg be more likely to rub off the myelin sheath? Often people have TN as a result of a whiplash injury or neck injury. When our neck is injured that spot behind our ear doesn't move that much, not much changes in that area, it however would affect our c spine a lot. People with TN often notice their pain is worse after sitting in a cushiony chair. MVD does not have a very good success rate.

3. TN is caused by a bulging disc that doesn't show up on x-ray and sometimes by inflammation and an altering of our spine that impinges and puts pressure on a nerve in our neck, the pain is then referred to different parts of our head and face.  Similar to when my husband hurt his lower back and the pain was referred to his big toe. People with TN have a forward head posture.

4. There are different kinds of TN pain.  The unbearable intense pain is caused by a bulging disc.  The other facial pain referred to as atypical is from inflammation putting pressure on the nerves in the neck.

5. You can fix TN different ways. A.  Anything that re-aligns the spine and takes pressure off the nerves (McKenzie therapy, chiropractic, whatever it's called that the guy that wrote the book "what time Tuesday" did I think it's called atlas or something. I believe it worked for him because by aligning his spine he took pressure off the nerve. also Egoscue exercises I think would work great, I do think chiropractic has the potential to do more harm because it is more forceful and done by someone who can't feel what we are feeling.  B. anything that pushes the disc back into place, C.anything that gets rid of the inflammation can make the pain better. There is a Dr. can't remember his name but he was an ER dr. for like 28 years then started just taking care of TN type patients, he said his patients did better when they changed their diet, got rid of wheat and sugar. this would make sense because this would bring down the inflammation. I do think Mckenzie is the best way to go because no one has to touch you and it pushes the disc back into place.

MY EXPERIENCE

I will start briefly with my experience because When I was looking for answers and still as I look for answers, I look for people with the same symptoms and similar experiences as my own. 

 I woke up one morning with what I thought was the worst tooth ache ever in my left back molar.  I got into our dentist that day. He told me there was nothing wrong with the tooth and that I had TMJ. So I went home and read about TMJ. It made sense to me because I had started having grinding in my jaw. Something else I should add, a few days before the "tooth ache" I remember waking up and feeling like something just wasn't right with my body, like everything was "off". I thought I had just slept wrong.

So in reading about TMJ, it sounded pretty painful and there was no cure. but I would just get a mouth guard and everything would be ok. Later that day I was walking back to my bedroom when a jolt of pain hit my face, my back lower jaw on the left side. It was indescribable. I went down to my knees and just held my face.  My youngest daughter, 8 at the time. hurried quickly over to me and asked me if I was ok.   I said I was ok and then in my mind I will never forget the thought I had and how it shocked me, I thought "if there is no cure for this TMJ thing then there is only one answer."  I felt ashamed at that thought and wasn't sure where it came from.  

I only got a few of the bad jolts. The pain would come and go instantly with what seemed like no rhyme or reason. It felt like there was a large serrated butcher knife embedded in my jaw and every once in a while someone would hit it with a hammer.  It got more constant over the course of a few weeks until it was 24/7 unbearable pain. 

During the first few weeks I did a lot of reading and research. I suspected that something more was going on than TMJ.  I could trace my pain down my lower jaw line. I looked at an anatomy chart and saw the trigeminal nerve. so I googled "problems with trigeminal nerve". When I read about trigeminal neuralgia, especially the part that said "some patients experience pain in their left index finger"I figured that was what I had. ( I had had pain in my left index finger for several months and it was the same electric jolt like pain). I was actually somewhat excited at the time because I had finally figured out what I had! so I could fix it right?

My husband got home from work that night, it was very late as usual. He is a Physician assistant and works in the ER. He climbed into bed and I was excited to show him what I had figured out. When I told him, he was somewhat hesitant. But said we would make an appointment with a neurologist and find out.  I know now that was what he was suspecting all along but didn't want it to be true. He knew what I was in for. I didn't.

The neurologist prescribed seizure meds. and an anti-depressant that was supposed to dull nerves. The meds made me into a zombie. they didn't take the pain all the way away. I tried to talk to the neurologist about other options, I had read about some other things to do. I felt like His attitude was "there is no cure, just shut up and take your meds". Never did I accept there was no cure. I couldn't, I knew if I did I wouldn't be able to live anymore.

 It got to the point where I couldn't even stand for air to blow on my face or anything or anyone to touch my face because it would cause the pain to increase. My kids could not hug or kiss me. I was constantly hyper aware of vents and fans. I couldn't go outside, I couldn't go on our boat, I seldom went anywhere.  I often times would sit and cry with the door shut and rock back and forth like you see the crazy people in the movies. I read about people who had TN for over 20 years. I felt like people with terminal illnesses were lucky, at least there was an end of suffering in sight for them.  I had gotten to a point where I couldn't believe how easy suicide would be.  I thought of it from a completely different paradigm than ever before. It would take such little effort on my part.  Sometimes my husband would take the kids out so that I could rest. I remember one night he kept insisting I stay home and get some much needed rest and I kept demanding to go. I couldn't tell him, if he left me home alone, I would probably not be there when he got back. I was starting to think that surely God understood what I was going through and it would be ok if I did, I could still go to heaven. That is probably why my answer came when it did.

I researched constantly. Usually laying in bed with my iPad(which now i know made it worse). I joined a TN group, asked a lot of questions and did a lot of searching.  I also prayed a lot.  The group was very helpful but the moderators censored a lot of the material if it was anything not in line with mainstream medicine saying it was dangerous. In fact the moderator would get pretty mean if anyone mentioned cure.  I believe I searched the database for "cure", that's when I ran across a post by a lady named Kathy. Her post had been deleted but it was attached to the bottom of the moderators reply to her. She said she had gone to a clinic in San Antonio texas. I couldn't find out what clinic because Kathy was long gone. The moderator had been what I would call mean to her and she had left the group. The things she said made so much sense to me and were things I had suspected all along.  The Lord works in mysterious ways.  My husband texted me from work and wanted me to look at a place he had found online. It was a clinic in San Antonio! 

I need to add, dr. Holt pushed on the facet joints in the back of my neck, they were very tender,I was unaware that they were until she pushed on them.

WHAT I DID

We went to the headache institute in San Antonio, Texas. My appointment was with a Doctor Holt, M.D. (my husband is not too keen on alternative medicine) She works with a physical therapist, Dr. Turner.  Dr. Holt was wonderful, very kind and knowledgeable. Dr. Turner who is the one who figured out how to fix the problem, tried to evaluate me but my nerves were so sensitive that when he tried to touch my head to move it, my nerves in my face would fire and my whole face would hurt. It was hard for him to isolate the pain.  He said that was common and that I needed to be on an anti-inflammatory and muscle relaxant for a couple of weeks before starting treatment.  He was able to isolate the pain and move it around somewhat. It was enough to convince my husband. My husband is very smart and very scientifically minded. He said he would not have believed it if he handn't seen it. As Dr. Turner moved my head into different positions he could move the pain further back on my face/jaw. He helped me to find my "sweet spot" it was a position I could hold my head in and there was very minimal in that small spot.  It was unbelievable. 

I knew these doctors were good people and had the truth because their attitude was so positive and hopeful.  Also because they told me that the drive would lengthen my healing time. So it would be better to go to someone closer to my home.  They looked up some Mckenzie therapists in my area and sent me home with their numbers. I could pick one, explain my situation and see if they could help me.  If not, Dr. Holt and Dr. Turner would have me come back to San Antonio and stay for a week and they would fit all the appointments I would need into a week. They cared more about helping me than making money.  

So they sent me home with a muscle relaxant, anti- inflammatory, and I was to hold my head in one position, I could not look down for two weeks and then start treatment. I found the closest Mckenzie therapist. He was not as experienced or knowledgeable as Dr. Turner. He was also significantly less expensive. At my first appointment I explained that I had Trigeminal Neuralgia, He did not know what it was, but he said it didn't matter, the way Mckenzie works you just have to watch the person move and go from there. He evaluated me and gave me an exercise to do. A simple retract and extend back neck exercise. He wanted to see me in two days and he didn't want me to pay him until he knew if he could help me. He had me do a few of the exercises there in the office and I did't want to get my hopes up but I definitely felt something different.  On the way home I had a weird like anxiety attack thing happen and I started to hyperventilate.  My husband gets kind of annoyed with things like that because he just expects people to buck up and deal with it. I tried to explain to him it couldn't be an anxiety attack because i wasn't' feeling anxious about anything,that it had to be something physical. Later I found a book called Egoscue Pain Free which would explain what happened to my body that day in the car. So don't be alarmed if you try the treatment once and have an experience like that. It is just because the body reacts when something has been physically one way for so long and then it changes. I'm not doing  a very good job of explaining this. Feel free to ask questions.

So anyway I did the exercises several times a day and after the second appointment it was obvious it was working!!! I can't explain how grateful I felt to my Heavenly Father and those people who had been instruments in his hands. I did the exercises for 4 weeks and my TN pain was gone! I still had pain in my ear and side of my neck (it was nothing compared to the TN) but I kept going for two more weeks.  My therapist didn't quite know how to fix it.  And I think i was overdoing the exercises because I started having problems with pain in my hyoid bone. That could also have been because I think that is when my thyroid started having problems. I still have the ear pain  only sometimes. I think it is from inflammation putting pressure on some nerve in my neck.

I know now that the whole thing was probably brought on by Lyme disease. Still figuring that out. 

I sure hope this helps and you find relief for yourselves and your family. Feel free to ask any questions and share your thoughts. 

Shawna