A Fix Until There is A CURE, Please! Appointment Monday!

Archive Blogs (Read Only)
1

Hello, friends!

Let me begin by saying that I am blessed to be one of the most successfully treated Atypical TN patients that I know.

But, it hasn't come easy . . . . .

I've beat on every door and traveled so many roads to get to anywhere near where I am today. I want better relief for all of us who suffer.

For years, since 2003, I have fought to either treat this horrible illness by one means or another. It has come down to a combination of medications that I need to be almost as I was before, functional, and for the most part, pain free!

What a miracle for a person with Atypical, Type II Trigeminal Neuralgia, right?

I feel I have many to thank for your prayers. I need specific medication. I know my own body best. I've tried a chiropractor, physical therapy, psychiatry, diets, and a plethora of medications.

This last visit with my PM doc was quite fruitful, but I still have approx. 2 flair ups per day of perhaps Lvl 7 pain.

This could be vanquished fairly easily! I know the medication I need. If not, I need one bump higher of the medication I'm on, just until I can find the person who will prescribe me again, the only thing that has freed me from this nightmare!

I am a woman of modest means caring for two girls, and I would like to get back to work or school. I will not marry my fiance until I can accomplish this.

On Monday, I need your prayers. I wish I could give to you all the relief I have found recently. I wish all healthcare professionals were as compassionate as the doctor at the pain management clinic I currently see. I had felt better this past month than I have IN YEARS!!!!

I am so close to be living proof that a person with Atypical Trigeminal Neuralgia which had gone way too far before being treated, can make a come back!!!

They are closer than they ever have been to getting my treatment exactly right, for me, at least.

My girls need me to make more of myself than a laid off ex-mortgage professional with a chronic pain condition. They have already lost their father. I need to come back full force!!!

This doctor could choose to give me that . . . . . until there is a cure for ATN, and I believe there will be. We have to keep hope in this, that the people who fund research will listen to our cries for help!

2

Hi Steph,

Is this a follow up with the same NP you saw last and already knew? I hope so and that they are going to continue to work with you till you feel you have accomplished a level that will keep you wear you need to be. Your such a strong girl and I am happy to have you as my friend.

love, hugs and prayers

Tracy

(spell check disclaimer)

3

Oh, Tracy!

It is good to hear from you!

Yes, it is. I am to see them monthly now for my scripts. We had a good relationship at the last clinic I went to for care. The level of caring at that clinic kind of went south after she left. I think she saw it headed in that direction. Perhaps, it was one of her factors in deciding to leave, or so it was hinted at by one of the members of the staff I spoke with at her new clinic.

The last time, the doctor, whom my NP works with, was great. He is the first doc I've ever dealt with who seemed to understand Atypical TN. It was refreshing. But, due to mistreatment at the other clinic, I am shell shocked. I always get nervous when I'm about to have a PM appt. The hold my well being, and thus my whole house's well being in their hands.

You are one of the strongest people I know. Thanks so much for caring and replying. I am lucky to have you as a friend, as well.

A lot of love, hugs back at you! Prayers for you sent too!

Stef

(yes, as always spell check disclaimer button on) :)

4

It’s good you had the will to be an advocate in your health. If I left it up to my neurologist, I would just keep popping pills until my liver waste away. Your strength is a testament to what can be achieved. Keep pushing the envelope.

5

Hi, Bobbie!

Yes, that's the spirit. The harder we push that capitalize on the subject of ATN, the more likely we are to get noticed. At one point, a marketer was here from one of the major research institutions. They know about TN, but not ATN. They call it Atypical Facial Pain, and that could be any number of facial pain syndromes.

LOL! At least the pills I have to pop to stay somewhat normal, little necessary evils, are, at least, more the more helpful ones.

Thanks! You sound like a really strong spirit yourself.

It is criminal, all of the the APAP ( Acetaminophen) , one of the worst possible things for your liver, that the put in Hydrocodone and Oxycodone. That is the "baddest boy on the block" to watch out for, as far as liver health is concerned, I've read.

6

Hi Stef

Just like you, I have tried many things and nothing is working. I am trying Cranial Osteopathy now. Lets see what happens. I wish something would work, its driving me mad. Gotta keep trying though otherwise we will lose hope.

Lots of hugs

Nat xx

7

Dear Nat,

I have not heard of "Crainial Osteoopathy" . I will have to google that. I've never been offered any surgeries by any doctor I've seen. I am looking for a Neuro who deals specifically with facial pain patients, or who specializes in ATN, to get a second opinion, and get a more thorough and appropriate type of MRI, if there is one to be found.

I certainly hope you get some relief very soon. My prayers are with you, certainly.

((HUGS))

Stef

8

Hi Stef,

I did have an MVD which has made no difference at all. Face pain is a complicated thing to have, thats for sure. I hope you find a decent neuro. Its helps if they have some knowledge :) but many do Wish you all the best.

Nat xx.