Introduction.....
 

I am new to this new server, but have been a member here (braintalk) since 2000. I thought I would take a few moments to introduce myself and I hope you all will do the same :)

Where to start .....At the beginning I guess ;)

At 14 I suffered severe pains in right side of face from temple to jaw.
I went to many dentist, and had 4 teeth removed.
This didn't help, and I was referred to a neurologist..
Diagnosed with TMJ.
Pain let up after about 8 to 9 months
I have also suffered from intense "migraines" all my life

In Jan 2000 I had the worse pains I have ever had to date
I thought I had a tumor and was going blind.. and sure I was going to die!
This started my roller coaster of Diagnoses
Stress
Migraines
MS
Lyme
Cluster headaches and on and on
As normal, pain got worse

March 2000 after seeing several Neurologists, I was Diagnosed with
TN with ATN tendencies.

May 8, 2000 I was put on disability. My doctors filled out most of my
paperwork.

Series of meds
Tegretol-allergic
Gabritril
Dilitan
baclofen
Amitriptyline
Depakote
Phenobarb
Neurontin
Lamictal
Methadone
Morphine
I am sure I am missing some...

I also try many other things to help
Acupressure
acupuncture
electric acupuncture
yoga
meditate
riaki
chiropractor
physical therapy
many herbal medicines
Pain clinics..
I even go to a Shaman
go on "journeys"
fire walks
and oh yea we can't forget my totem..
Turtles
So I buy a box turtle
I name her Mazie...you know hoping she will help me threw the maze of this disease. She didn’t help much but I sure did love her. She passed away last year….we now have 2 new box turtles, Scooter and Hitch.

Pain continues to get worse
PAIN ALL day Everyday...
Thinking of taking my life..

Aug. 9, 2000
Have MVD surgery
helped for about 5 weeks,
then back with a vengeance.
continue trying new meds,
and trying to just survive each day

Oct 2000
Now have TN on left side as well :eek:

Dec 5, 2000
Go to Rhode Island(I live in NH)
For my first of 3 Gamma Knife surgeries...
This can take up to 3 to 6 months to work.
It DIDN'T.

I continue to struggle everyday.
My MS "like" symptoms continue to get worse as well.
Pain on left as bad as right...
I am a prisoner to my pain..
I continue to seek new help....
new doctors... After much searching I find, and still have a wonderful team of doctors
By the grace of God I am still alive...

Another Gamma Knife surgery
Sept. 10th and 11th 2001
This time for both sides....
Failed as well.

All the surgeries and damage done to my nerves
Have left me with Anesthesia Dolorosa. I now have
This pain every day , 24 hours a day.
Wishing I never had the surgeries. But knowing if I had
It to do all over again, I would. We will do anything to try to
End the pain.

2004, I lost the only baby I was to have. She died , I never
got the chance to even hold her :(

My husband of 23 years, Lynn, is diagnosed with Alsheimer's Disease:eek:

In 05 out of the blue I developed Occipital neuralgia.
I am starting up another series of nerve blocks to the back of
My skull and neck at the end of this month.

My neurological issues with my arms and legs still flare, but to
date they have no name for what is causing the weakness,
numbness and tingles.

March 06, I have the first of many TIA (mini) Strokes.
These leave me partially and temporarily paralyzed for
extended periods of time, but I have always had good
recoveries, for this I am grateful!

Life is a battle. TN is a daily battle. Through the years, I have come
to accept my pain. I even now feel it is a gift. I have learned so much
from living with this pain, it has taken me places I am sure I never would
have gone, it has made me a better, more compassionate person.
So yes, it is a battle, but...........I have won the war!! :)

Peace on your journeys, Nikki

Hi Nikki. You and I have met on another forum so I wanted to be the first to welcome you to this one.

I've had Trigeminal Neuralgia with MS, so I know how you must have suffered.

I also feel your pain with the loss of your baby. I lost 4, but I did eventually have one live birth. I know that nothing can ever take that pain away Nikki. I certainly understand how you must feel.

You have been through way too much. Come here and get a giant hug......:grouphug:

I hope you'll feel at home in whatever forum you choose.

HI Koala:hug:

I hope today is a good day for you and thank you for your welcome:)

Hi nikki,

You brang tears to my eyes, i am so sorry to hear of everything you have been through! i really hope that the doctors will find something to cure tn but i guess it will be a long time before it happens! i feel for you and your husband! it sounds like you are a fighter!! keep fighting Nikki :hug:

Melina
:hug::hug::hug:

I'm so sorry for your losses Koala. I had two miscarriages as well...it doesn't get easier does it.

I didn't know you had MS, how are you doing? If you don't mind me asking.

So far I like all the forums I have visited. There are many things I am dealing with, so it is nice to have an outlet for some of them. thanks for being here :hug:Nikki

No Nikki it doesn't gets easier, and you never forget.

The MS is so-so. I gave up work last year (I was an RN) because of a combination of MS and major surgery for cancer.

I now walk with a cane, but other wise I do OK between relapses.

This week has been a bit hard for me, but I think you already know about my brother dying. My DH is now home from hospital, so things hopefully should now start to improve.

wow we have somethings in common in our T.N. path we have been on Nik-key. the meds and the meds and the meds lol. and also you mentioned you have done reiki.. that is like healing touch which I started doing/having last year. I think it is ??? I need to write my post on words and have spell check cus got lots to chat back to you with and need the time to write stop come back and all that jazz.
It is really good to meet you and get to know you and see how much we have in common . I am sorry to see how much you have been put threw and
your struggles but so dang happy you kept on going no matter what and that you are here right now!! :winner_first_h4h:. You are a pretty damn strong extrodinary person and I am lucky and blessed to meet and get to know you!
I will post more soon. AND THANKS SO MUCH FOR SHARING!!!!!!!!:grouphug:
PEACE
BMW...Tina

Koala, I do hope you are doing better. Again I am just so sorry for your loss.
You have been through more than your share and my heart goes out to you:hug: It is clear you too are fighter. I wish we didn't have ti fight so hard sometimes! I am very glad to hear your MS is not causing too many major complications. I know what a struggle it can be. Wishing you all the best:hug:

Thanks Tina:hug: I think you are pretty amazing too!!
If you don't mind, could you tell me how your nerve got severed. I remember you had an accident, but I can't recall if that is what caused it.
Its good to meet new friends and share. Take care :hug:

sure I will tell how I got this ugly horrible monster sewen to my face..lol
I was in accident with a 18 wheeler semi. I was on way to pick up oldest from 3ed grade. I had youngest with me she in safety seat in back and me buckled in drivers seat. we were stopped behind 3 other cars as xing gaurd was in middle of highway and moms and kids xing...school let out.
then I woke up in hosp like 6 days later .even though I have seen pic and been told a trailer truck slammed into me from behind it is hard to believe cus i dont remeber a thing about that day I even have a relapse or memory loss of like that whole year just about.Had broken nose ,couldnt feel feet or legs had cut on forhead and also a head inury and ... my jaw was broken on each side lower.
I was wired up for 16 weeks. the first time when doc took off wires he didnt give me any sleepy or novacaine or numbing gel like for teething. he just yanked and tuged away..I personaly think thats what snapped/severed my nerve..not the accident but will never know that for sure. anyways I was unwired went for 3 months couldnt eat horrible pain ... went to dentist cus need lots of mouth and teeth work. he took xrays found my jaw still broken.. found a great oral doc who put my plates in to hold each side of lower jaw together God Bless Him .ohh I could actuly bite and chew and swallow ... a heaven let me say. anyways the pain just grew bigger then was on the meds merry-go-round.Allergic to anti sezurie meds ...bla bla...
tests at Shand hosp here in Gainsevill like 5 times for diffrent things..one to "prove" it wasnt in my head and another to show my head,mind was "okay"
got refered to a awesome pain mannagement doc. who gave me 2 options .one to try morhine drip pum and another med called zana flex and two to be one of the first to try a neuro stimulator for face pain. they did mri saw my plates saw my nerve snapped/servered at least that what they told me. so tryed the meds and morpihne drip...no help good buzz zombie mom hated that. want to be me ... want to end things cus i cant be me...
so did trial for neuro stimulator it worked right off the bat and even thoguht my leads have slipped a bit ...I am so happy with it. yup the leads have slipped but I can still snake the leads and hold on the happy spot. it has given me part of my life back. I can be me again be a mom .It dose not take way all the pain but the bad nasty pain is controlled with my stimulator.
I still get bad days and have flare ups but I am at least in a state where I can live and look back and wonder how the heck I made it. and feel so blessed to have done so.I have had to learn coping skills and you mentioned fire walking my pain doc gave me list of things to help distract from pain 24-7 one of the things I do is walk on hot hot cement then come home and wash feet in cold cold water. odd I know but it helps. and I also have found healing touch to be one of the best things I have done..maybe not for the pain of t.n. but for healing and relaxing ..maybe more spiritual then pain relieveing but so helpful to me to be able to accept things and be comfortable with myself. I am going sunday for H.T. it is something like reiki? I think? You mentioned that also did you find that helped you at all?
well high five to us :highfive:
i have met some amazing t.n. people i must confess ...you are one of them.
I hope things get better for you soon with this a.d. maybe a stimulator an option for you? look into it and know i have you in my prayers for nothing but the very best of the best!:hug: :hug:
PEACE
BMW...Tina