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 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!! . 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!!!!!!!!
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 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

Thanks Tina 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

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
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!
PEACE
BMW...Tina

wanted to add also that because it was not my fault and the trucking company would not compensation fairly I has to sue so ...from 6-8-99 (date of accident) until the end of 2002 I was followed... video taped, phone tapped .. 'they' because of having head injury went ALL the way back into history to elementry school . and I had really hard time in highschool cus of my situation then... anyways I went to trial by jury ...1 to get a fair settlement first and for most!! and second to get neuro stimulator as a way to controll my pain over them morphine drip and meth patch as at the time it was considered a voodoo remedy and I dont believe even today if it is approved by the gov for treatment of face pain.??? Still in trail stage but I do see it being offered more so .... forwards march is what I say. I will take a neuro stimulator over any medication or drug hands down!!!!!!!!!
Sorry i vented off a little just cus it is growing close to aniv of my accident. but i should look at it a a reason to celebrate cus I am still around to bug you all. lol . hugs and thanks
PEACE
BMW

Hi there Tina.
I did remember it was an awful accident, but I didn't know you had gone through so much in recovering. What a trooper
Since Dad past my memory is just awful....so I can't recall what type of stimulator you had.

I do know my pain doctor is talking about a stimulator for my ON, but it it placed just under the skin. So not too traumatic.

A couple years ago I did discuss with my neuro team the option of a stimulator for my bilateral TN pain, I was told I would need the motor cortex stimulator or the deep brain stimulator. Both scared the bajibbers out of me I have had the MVD and gamma knives, but these seemed way more invasive.

I believe you said you did not have to have one of these 2. What one do you have then? Would you mind explaining the procedure to me. I have seen the other ones at medtronics, but I didn't think they were for TN....but if you have found any relief I would greatly like to hear about it!

Thanks again Tina Nikki