FAQ/Help |
Calendar |
Search |
Today's Posts |
|
![]() |
#1 | |||
|
||||
Senior Member
|
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 ![]() 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 ![]() 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
__________________
******************************************** More Than One Soul Dies In A Suicide . ******************************************** . |
|||
![]() |
![]() |
"Thanks for this!" says: | Burntmarshmallow (05-16-2008) |
![]() |
#2 | |||
|
||||
Legendary
|
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...... ![]() I hope you'll feel at home in whatever forum you choose. ![]()
__________________
Eastern Australian Daylight Savings Time and my temperature . |
|||
![]() |
![]() |
"Thanks for this!" says: | Burntmarshmallow (05-16-2008), Nik-key (05-15-2008) |
![]() |
#3 | |||
|
||||
Senior Member
|
HI Koala
![]() I hope today is a good day for you and thank you for your welcome ![]()
__________________
******************************************** More Than One Soul Dies In A Suicide . ******************************************** . |
|||
![]() |
![]() |
"Thanks for this!" says: | Koala77 (05-15-2008) |
![]() |
#4 | ||
|
|||
Junior Member
|
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 ![]() Melina ![]() ![]() ![]() |
||
![]() |
![]() |
"Thanks for this!" says: | Burntmarshmallow (05-16-2008), Nik-key (05-15-2008) |
![]() |
#5 | |||
|
||||
Senior Member
|
Quote:
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 ![]()
__________________
******************************************** More Than One Soul Dies In A Suicide . ******************************************** . |
|||
![]() |
![]() |
![]() |
#6 | |||
|
||||
Legendary
|
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.
__________________
Eastern Australian Daylight Savings Time and my temperature . |
|||
![]() |
![]() |
"Thanks for this!" says: | Burntmarshmallow (05-16-2008), Nik-key (05-19-2008) |
![]() |
#7 | |||
|
||||
Grand Magnate
|
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!! ![]() I will post more soon. AND THANKS SO MUCH FOR SHARING!!!!!!!! ![]() PEACE BMW...Tina |
|||
![]() |
![]() |
"Thanks for this!" says: | Nik-key (05-19-2008) |
![]() |
#8 | |||
|
||||
Senior Member
|
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 ![]() ![]()
__________________
******************************************** More Than One Soul Dies In A Suicide . ******************************************** . |
|||
![]() |
![]() |
![]() |
#9 | |||
|
||||
Senior Member
|
Thanks Tina
![]() 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 ![]() Quote:
__________________
******************************************** More Than One Soul Dies In A Suicide . ******************************************** . |
|||
![]() |
![]() |
"Thanks for this!" says: | Burntmarshmallow (05-17-2008) |
Reply |
|
|
![]() |
||||
Thread | Forum | |||
Introduction | Trigeminal Neuralgia | |||
My Introduction | New Member Introductions | |||
Introduction | New Member Introductions | |||
An Introduction | New Member Introductions |