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General General TN & GPN (Old Site)
1

Im still in denial, sort of. Last 6 months, or maybe a year, sensitivity on right side when I drink cold, warm foods… Then this weekend the pain sent me over the edge. Went to er, dr gave TN dx and sent me to neuro. Neuro confirmed, sent for MRI. I also had one previously in April, went to a tmj specialist who said it was tmj and then sounded like an infomercial to get me to purchase a very expensive mouth guard but my pain was minimal at that time and dentist said I needed to keep using the special toothpaste. Primary dr gave me the name of a psych and sent me for the MRI and said “let’s hope this is not TN!” I was so happy went the tmj dr said it was not, but after this past weekend, the pain that made me want to die, and reading posts here, I guess it’s TN. Now I have to believe it won’t come around often…

The neuro gave me prednisone, tregretol (200mg 3x/day) hydro codon, and valcyte. I could barely function, so I stopped the hydro, cut back on tregretol and felt only a dull ache this am am a little spacey for the rest of today.

I have an appt for recheck w neuro to review latest MRI on nov 26.

The last 6 months have been very stressful… I have to believe that once I find a way to let the stress go, this TN will not come back. Am I dreaming?

2

It will likely come back i'm sorry to say and i hope im wrong.It's a terrible condition but there is hope and there is help.Stress does affect it so stay chilly. ( :

3

Oh Debbie:( Hugs to you. I know what you are going thru as I'm sure all of us on this board do. Unfortunately, the pain will most likely return, I'm so sorry to say. I still don't have a definite diagnosis but I found myself going thru the five stages of grieving the loss of my "normal" life, denial ,anger, bargaining, depression and acceptance. Try not to stress, that makes it worse:)

4

Don and lake girl,
But with all the meds, the laser light surgery, open brain surg and gamma knife, surely something has to work, right?



Don said:

It will likely come back i'm sorry to say and i hope im wrong.It's a terrible condition but there is hope and there is help.Stress does affect it so stay chilly. ( :

5

How long before it came back for you?




lakegirl said:

Oh Debbie:( Hugs to you. I know what you are going thru as I’m sure all of us on this board do. Unfortunately, the pain will most likely return, I’m so sorry to say. I still don’t have a definite diagnosis but I found myself going thru the five stages of grieving the loss of my “normal” life, denial ,anger, bargaining, depression and acceptance. Try not to stress, that makes it worse:)

6

Deb, I haven't found an answer to my pain yet but I live in hope that one day I will:)

7

It never left. I've been in pain everyday since March.

8

EVERYDAY!!! 8-0

Do you mean like shots of pain from drinking or eating foods or drinks that are not the perfect temperature? Or the pain that you are getting no relief from? What have you tried? What helps? How did it all start??



lakegirl said:

It never left. I've been in pain everyday since March.

9

No shooting pains, just a terrible pain that feels like a hot abscessed lower last right molar or behind gum/jaw behind and under it. Started in March, ended up at Mayo having surgery for nonhealing extraction site which I don't think was causing the pain because it is the still the same. I've had over eighteen thousand dollars of MRI's and CT scans which the Mayo neurologists say isn't TN. Mayo oral surgery says there is nothing more they can do for me. I take 600 mg of gabapentin and ibuprofen. Rest when I can, try to get as much sleep as possible, heating pad helps sometimes so does exercise. I have two children who are highly competitive athletes so I need to be up at 4;30 am five days a week. They also do the online school. I try to focus on other things.

10

You are here at one of THE best place - to learn about chronic TN pain. You have a good start on meds, and yes we all started with grieving eventually..... there is no cure. BUT THERE IS HOPE! Your best hope is to LEARN as much as you can - on this site - and this book most of us read "Striking Back" by Dr. Ken Casey

I'm gonna give you a short cut - I got it at age 47, in October 2010 -- 1 year later to the month I had MVD surgery - I am at year 2 now after MVD (cranial not brain surgery) and am pain free and med free. 90%+ will stay away for me, in remission possibly for years.... nobody knows. 2 days in hospital, 3 weeks laid in bed.

1. Because I went to one of THEEEE top TN surgeon on the planet earth--- Dr. Casey above....

There was no such surgeon here in KC or near it. I read everything I could read about it here and in the book. MVD those who are pain free, or less pain, don't come here anymore!

2. If you get MVD within first 3 years your % can be high 90% / if you do NOT have Gamma/Lazer / Cyber BEFORE MVD, your surgery stays in WAY top percent. MOST of us have never had our compression-nerve on an MRI - they have to go in and find it. Fiesta MRI is hard to find, but if its in your location - that would most likely show your compression(s)

3. Immediately get the doctor to just call in for you - LIDOCAINE patches for your face - no appt. necessary. Can help up to 12 hours - and keep your meds dose lower!!!! Lidocaine mouthwash if needed for inside!

So - I just wanted to show you what a good outcome can look like -- most in history - have not been on the right meds , did not get the diagnose for years, dentists pulled all their teeth, or gave them TMJ script, or many root canals.....or tried to get cured by chiropractic and quackery.

So you are at a good crossroad---AND if you see the doctors tab above - good MVD guru's --TN neurosurgeons that only do TN/MVD......

in NY and John Hopkins- Baltimore

The more you Ask / Read / Learn / Repeat --- your chances of having better outcomes can be okay.....

Sometimes, you can do alllll the right things,

best doc, best meds, best family, best anatomy.....and STILL the TN dragon won't let go..... but the more you grab it by the horns, .....you can have a hand in your own destiny, not just a passive patient - that is the Last Thing to be!

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

This is for your grieving I wrote on here---- also search box - for Spoon Theory - that helps

and you must know that you have to let go of WHAT gave you TN--- now its only a matter of what you do for yourself!

I think mine came from many whiplashes over the years, then a BAD oral surgeon yanked my neck while I was out if it.... but I wasted too much time - to give too much time of the why --- some kids get this! - babies! -- there no known absolute researched of the WHY TN - WHEN TN - HOW TN --- let it blow off your shoulder and be in the present, let go of the yesterday. Its okay!

11

Beautiful post KC

12

I know what it takes to be proactive. I fought for my son’s life (see video)

http://youtu.be/y7BNDJC_-kM

and I am ready and willing to grab this monster by the horns. Going to order that book right now. Thank you, KC!



Kc Dancer Kc said:

You are here at one of THE best place - to learn about chronic TN pain. You have a good start on meds, and yes we all started with grieving eventually..... there is no cure. BUT THERE IS HOPE! Your best hope is to LEARN as much as you can - on this site - and this book most of us read "Striking Back" by Dr. Ken Casey

I'm gonna give you a short cut - I got it at age 47, in October 2010 -- 1 year later to the month I had MVD surgery - I am at year 2 now after MVD (cranial not brain surgery) and am pain free and med free. 90%+ will stay away for me, in remission possibly for years.... nobody knows. 2 days in hospital, 3 weeks laid in bed.

1. Because I went to one of THEEEE top TN surgeon on the planet earth--- Dr. Casey above....

There was no such surgeon here in KC or near it. I read everything I could read about it here and in the book. MVD those who are pain free, or less pain, don't come here anymore!

2. If you get MVD within first 3 years your % can be high 90% / if you do NOT have Gamma/Lazer / Cyber BEFORE MVD, your surgery stays in WAY top percent. MOST of us have never had our compression-nerve on an MRI - they have to go in and find it. Fiesta MRI is hard to find, but if its in your location - that would most likely show your compression(s)

3. Immediately get the doctor to just call in for you - LIDOCAINE patches for your face - no appt. necessary. Can help up to 12 hours - and keep your meds dose lower!!!! Lidocaine mouthwash if needed for inside!

So - I just wanted to show you what a good outcome can look like -- most in history - have not been on the right meds , did not get the diagnose for years, dentists pulled all their teeth, or gave them TMJ script, or many root canals.....or tried to get cured by chiropractic and quackery.

So you are at a good crossroad---AND if you see the doctors tab above - good MVD guru's --TN neurosurgeons that only do TN/MVD......

in NY and John Hopkins- Baltimore

The more you Ask / Read / Learn / Repeat --- your chances of having better outcomes can be okay.....

Sometimes, you can do alllll the right things,

best doc, best meds, best family, best anatomy.....and STILL the TN dragon won't let go..... but the more you grab it by the horns, .....you can have a hand in your own destiny, not just a passive patient - that is the Last Thing to be!

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

This is for your grieving I wrote on here---- also search box - for Spoon Theory - that helps

and you must know that you have to let go of WHAT gave you TN--- now its only a matter of what you do for yourself!

I think mine came from many whiplashes over the years, then a BAD oral surgeon yanked my neck while I was out if it.... but I wasted too much time - to give too much time of the why --- some kids get this! - babies! -- there no known absolute researched of the WHY TN - WHEN TN - HOW TN --- let it blow off your shoulder and be in the present, let go of the yesterday. Its okay!

13

Wow Debbie....Yours and Gabes story is truly amazing!!It really touched my heart.Thank you for sharing..God bless you and your family.I know one thing for sure.YOU are way tougher than TN.

14

hey debbie--

I was diagnosed in june and went on the epitol (generic tegretol). It stopped the pain within a week and it hasn't come back. I have weaned off the meds. There are a lot of people who manage tn without surgery or anything else for many many years. Some people have had YEARS of remission. So I am not sure I would jump into the surgery idea too quickly. Some people have had negative outcomes from the surgery as well. There are no guarentees!! Don't panic--take a breath--and relax...wait and see what you are really dealing with... I would say that you should take the tegretol because that is most effective at shutting down the pesky nerve. I think starting you at 200 three times a day--was pretty high! You usually start lower and increase the dose every few days/weeks. My doc started me on 100 twice a day -- just to get me used to it.. I even felt tired and a bit drunk at that level... We caught mine early after the first flare so I think that is why it settled quickly- anyway-- from what I have come to understand from my reading-- you take the meds until you are fairly painfree for a few months --then slowly wean off to see if you are in a remission... the key is stopping the nerve from firing by using the meds!! Hope this helps! I know how upsetting the diagnosis is-- but it is often manageable for many many people! blessings-- cindy