[Donna1980]

Hello everyone!!

I hope you are all ok?!

I've recently been diagnosed with TN and hoping to learn as much as possible as i can about this blasted disease! the pain is driving me nuts

if there's any tips you guys and girls can give me on making life easier then please help xx

Thanks and i look forward to catching up with you all soooooooon.

DONNA XXXXX

[Burntmarshmallow]

Donna I am sorry you are here for T.N. but I am gald you found your way here. Welcome
The first thing that would be very helpful is for you to read the stickies up at the top of this forum .
I would also learn what your triggers are and then avoid them.Like wind is pretty common trigger for us so many of us use face mask when we HAVE TO be outside in the wind , there is much info in the stickies caring for one with t.n. and the useful websites etc...
Also the t.n. bible Striking Back book is extremely helpful .
Are you on meds I think I read you were on one and had reaction now you are on another and adjusting to it ?? take your meds as prescribed give body time to get used to it . and like i see you did if any reaction happens call doc a.s.a.p. or go to e.r.
Stress also bring the pain levels up so find ways to relax like mediation or warm bath , calm music aroma therapy... try not to worry to much if that is possible.
also coming here and having contact with others who understand what it is like dealing with t.n. is a comfort . we are like a family and help each other , sharing info, tips, a hug just listening...your not alone and I am glad you found us.
If you have questions or just wanna chat we are here.
I do so hope the new meds are helping !
Low Pain wishes to you, let us know how things are going for you..we care!
PEACE
BMW

[supermoo]

Hi Donna, I'm not a million miles from you hun. So sorry you have this horrable TN I have found now that I cant take Tegratol eather it affects my breathing like the pregablin did Pm me anytime hun. xxxxxxxx

[Donna1980]

brilliant thanks Burntmarshmallow, for all that advice that's wonderful and it is so easy to get stressed with it all

I also have IIH which is idiopathic Intracranial Hypertension so find day to day life hard as you can imagine, but i still manage at the moment to keep going to work and holding down my full time job .

I am due to see the surgeons to talk about surgery for my IIH soon too so that it looming by, do you know if IIH and trigeminal Neuralgia are linked in anyway?!

[Burntmarshmallow]

I do not think there is a link but I do know many who have M.S. seem to get T.N.
thought not vice verse people with t.n. dont get M.S. as far as i know anyhow it is usual M.S. folks getting T.N.
I will have to research IIH get the drift it is stress and blood pressure but will find out how far off I am ..goggle is so helpful
Low pain and I hope your Apt goes extra smooth.
remember we are here for ya anytime for anything.
Sunshine and stress free rest of week to you
PEACE
BMW

[Donna1980]

IIH is a build up of the spinal fluid which collects in the skull causing pressure on the brain causing daily headaches, and pressure in the back of the eyes on the optic nerves, I have Lumbar punctures every few months to drain off the excess fluid and lower the pressure, but it's very hard to deal with, it causes fatigue and generally makes life difficult.

Then topped with TN life is pretty nasty as you can imagine!

[Burntmarshmallow]

wow (((((Donna)))))))) that for sure stinks ! I read up on idiopathic Intracranial Hypertension . I learned about it... that eye pain and blurred vision and or double vision, wooshing sound in ears and one huge head ache are just some of the things ruling your every move .
add T.N. and dang girl if I had a pail of magic dust I would toss some on you .
but all i can do is give you a and send prayers and positive thoughts low pain. what type of surgery would you have done?? would it be near any of your nerves?? I am saying prayers for you and your family.

I find soaking my feet in warm/hot water helps me. sometimes it is just relaxing and sometimes it kinda distracts my brain for a tiny bit form the t.n. pain. I understand the nerve in our big toe runs all the way from our brain to big toe. maybe that is why who knows I just know for me having feet in very warm/hot water seems to help take the edge off it doesn't make it go away tho.

mmkay I may be an odd ball here heck I know I am !! but the fact I was very very depressed at one point suicidal . I talk to pain doc and he shared some ways to distract my brain for constant t.n. pain things that would not be considered self harm. One of them was my feet hot water for a bit then cold water for a bit then back in hot water. I know it is weird but it works for me. sometimes I walk across the hot cement I live in Fla so in summer the parking lots and side walks the road gets toasty . I am not proud sharing this about me I will say that I had resorted to burning my arm with iron

I ALWAYS know when I share about how it was for me share about myself..I know I am going to freak others out scare them and I want everyone to know that is NOT what I want to do that it is hard to look back and share .
I do not burn or anything I am not depressed it has been a long long long road from back there to right here. and I am here praying and hoping to help just one other person no matter how big or how small just help someone. I wouldn't even shared so much about me except I wanted to tell you about soaking feet . DO NOT burn with iron like I had !!!!! I have to say that cus I dont want this post to trigger any unhealthy ideas or methods to this room or any one who might read this. a pain doctor can teach you things like this. coping skills.
okay okay
I am off to lurk and hoping I haven't freaked everyone out .
PEACE
BMW

[supermoo]

You help us by being here for us hun.

[Donna1980]

Hey BMW i hear what your saying and understand every word so you didn't freak me out my dear !!

And you live in Florida you lucky devil that place is soooooooo wonderful, I went there in 2007 and stayed in Kissimmee and it is such a beautiful place! XX

Thank you for your help and i am so glad i've found you BMW and you too supermoo

[joan.of.art]

Originally Posted by Donna1980

Hello everyone!!

I hope you are all ok?!

I've recently been diagnosed with TN and hoping to learn as much as possible as i can about this blasted disease! the pain is driving me nuts

if there's any tips you guys and girls can give me on making life easier then please help xx

Thanks and i look forward to catching up with you all soooooooon.

DONNA XXXXX

Donna I will post the best help I got from the best doctor ever!! he is the one who treated me and was a great help. he is in Portland and his name is Kim Burchiel. good luck !! I did not have to resort to surgery as my TN was atypical and with Tegretol and a couple months of time, it went to remission. It could come back but that was in 2004 and so far so good! I still have OC but I can control that. The TN made me suicidal so I promised my sons I would try the best doctor I could find before I offed myself ...this guy helped me out! go to him! Believe me I feel your pain!