I'm out

Hi. I had MVD approx 8 months ago and it appeared to have worked. I was so happy. For the first time, no pain in 8 years. I did my first try at exercise on Sunday (swimming) and it has returned. I so admire everybody on these boards. Only you know what it's like. But I have to be very honest. I cannot go another round of this. I can't. I'm not being negative, just acknowledging my limitations. I don't have endless bounds of strength. I have limits. I am not prepared to "live" with this. Don't get me wrong. I'm as scared as anyone is to do die. But I cannot live with this again. My last hope was MVD. and no more pills. With that failing, there's nothing else. I have spent so much money on this crap. I can't even afford to see a Dr. I'm tapped out. Strangely though, a calm has come over my mind knowing that I don't have to live with this if I don't want to. With no family and few friends, there is not a lot to feel guilty about leaving. I'm sorry to write such a downer of a post. I guess what I'm saying is I really don't want to struggle to keep alive when all this pain makes me want to do is leave earth. I don't actually see the point of the struggle.

Please don't give up. Call a crisis line or go to the ER! I know this disease is very depressing and sucks the life out of you. Even if you don't have any family, you mean something to someone. Please seek help for this. I honestly believe everyone has a purpose here on Earth. I have been in your shoes but the love of my family keeps me going. If you need someone to talk to feel free to contact me.



Yes please go to the ER -- or call a crisis line - I wish we had one here!

I can tell this is tough for you. I feel for you, I truly do. But ending things is never the answer. The agony left behind will effect generations. I speak as the daughter of a man who’s mother ended her life. He never got over it. He was crying for her in his seventies, and she died when he was 5. It’s tough on us living our life withTN, but reach out, seek help. We need you here with us.

Hi there, I know this all must be very difficult to handle right now but please don’t give up x the ER may be your best option x pls speak to someone about this and don’t let it beat you x we are all here to talk and you won’t go through any of this alone x please seek help about how you are feeling and your TN, even go to the ER…xx your not alone in this we are all here for you xx

Here's an avenue to explore for assistance from a qualified medical professional who is herself a TN patient, Belau. Please avail yourself of it.

If you need assistance or support, please call 1-800-■■■■■■■■ or 352-■■■■■■■■ to speak to the TNA Coordinator of Patient Services.

Availability is Monday through Friday from 9:00 a.m. to 5:00 p.m. EST. Please leave a detailed message so that we can get back to you as soon as possible. To send email, click here.


Red Lawhern, Ph.D.

Resident Research Analyst, LWTN

Things will feel better for you i know this for SURE.There is a lot of JOY ahead in your life.Just reach out for help.

Hi Belau, I’m so sorry that your pain has returned. I’m still trying to come to terms with this awful disease. I can’t imagine what you are going thru. Please remember you are a child of God and if you go to him he will help you. Talk to him! God bless you.

((( Belau ))), I urge you to reach out to a crisis line, it’s free and just having someone to talk to anonymously can make a world of difference.
None of us are qualified to respond to your post in the way you need.

We DO know and understand your thoughts and feelings, because many of us have felt that desperation, and discouragement …and we know the pain of TN.
The horrific pain of TN, the meds, the side effects, the inconsistency of it all, the grief of things lost, the huge changes to our lives, the unpredictability of it all takes a toll…

you are stronger than you know!!
your pain may respond better to just a small amount of meds this time because of MVD…
It might disappear all on its own!!

I’m in a similar situation after MVD, ( mine was 9 months ago) so I do understand AND I care.
Please reach out…
Sending you peaceful positive thoughts and gentle ((( hugs ))), Mimi

Thank you all so very much. You can't know how much I appreciate it. Only all of you know what TN is like so I know you get it. :) I was wondering if "straining" could have brought it back. I was very nervous to be in the water and I held my neck and head up tight to keep my face out of the water. I could feel the pressure in my head. I thought that would be better than going back to weights. When it returned, I had the biggest gut cry I have had since the surgery. More straining and pressure in the head. Does anyone think that could be it? I can't imagine one swimming session could dislodge the teflon. I decided to go to work. After many jobs with loads of bullies, I've ended up in the most wonderful workplace, with the loveliest people ever. They have been terrific about it even if they can't quite get it (lucky things!) I apologise for sounding like such a drama queen in my first post but you know, I do not think I could go through it again. Sometimes I think that makes me weak when I see how strong you all are. But it's just no life. It is very quiet today at work (thank goodness for small mercies) and I have been as still as I can and have an easy day so far. When the pain comes I typically have a burning sensation around my lips, gum and cheek. I don't have the burn which led me to wonder if it was the straining that brought it back the last few days. I would really welcome your ideas on that one. Thank goodness for this support page. I'm not local to the US but you should know how important you all are. :)

Bel, I get that you are in a deep space of disparage and hopelessness...oh do I and so many others here are familiar with that space. You may think we are all strong, but we are a circle sharing energy to pick one of us up when they are feeling hopeless and see no positive projection. And we are here for you. At another time you will be there for someone else. I haven't had surgery so can't comment on what may be going on there, but I can comment on holding on for one more day, some how the corner will turn. My darkest day came n Feb 29,1012, I just couldn't handle the pain, the pills weren't working fast enough so I just kept taking them till I felt no more pain. Fortunately my boyfriend found me and was able to get me to ER... I was inches fro leaving, had to be intubated and quit breathing 2 times. During that time, I saw all my friends and family come to me one by one saying they love me, love you Auntie Gail, it was like a string of voice mails from everyone I knew, I realized after that, I am here for a reason, if not for me, obviously for them. Even though this condition doesn't seem to consider me, I have to consider everyone I have ever had contact with and what I meant (mean) to them, right down to my precious dog. I've been riding a rough road since then due to the pain and feelings of disparate, but some how, especially thru sites like this I realize that there is always tomorrow and always a chance things will change path. Vent, rant, cry what ever you need to do to gain that next breath of air, I promise you will always see things differently tomorrow. You are here for a reason and you are never Alone. Thank you for trusting us with your deepest darkest feelings.... it's an honor to know you choose to speak from your heart to people who understand and are willing to listen.

I know you have spent a lot of money, and I know you don't want another MVD -- I know somebody local to me = who did 3 of them...each one got better --- depending on the surgeon.

Go back to the book Striking Back - or maybe to a pain doctor, or new TN neurologist.... don't give up! Try new topical meds...just keep moving forward

I'm glad you have a job you like - it makes ALL the difference !!!

Keep Posting!

PS Many of us get this from Whiplash -- so maybe the Teflon did get loose, but nobody here will really know how to figure that one out here. IF so, its a matter of putting the Teflon back perhaps.

Belau, no need for apologies or explanations, although we appreciate them :) We are just glad you did not follow through. WE WANT YOU HERE WITH US, YOU ARE VALUED!

Hi Belau, this illness does feel like living in hell on earth at times and I understand your initial thoughts as I had similar thoughts when I was first diagnosed and prior to the meds kicking in! Don’t get me wrong, I didn’t think about doing anything I just thought I can’t live the rest of my life with this pain! I know what it’s like to have failed MVD’s as I’ve had 2 of them now however, during the past 2 1/2 years I’ve now got 3 beautiful grandchildren which I never expected, had I done anything early doors I would have missed this and I wouldn’t have wanted to miss out on this for the world, they all make me smile and keep me going. I know I don’t know anything about your personal life but what I’m trying to say is life often throws surprises when we least expect them and I like to think that they all happen for a reason.

It sounds like you have made some good friends at work = positive. You say you enjoy your work = positive, please try and concentrate on these and build on them, take advice from the others, contact support agencies, possibly try and engage in some therapy if it’s available free in your area, you’ll be surprised at how helpful and encouraging they can be…And continue to use this site, writing that post was extremely courageous and it kind of says to me that you are stronger than you yourself may think.

Take care and please keep everybody updated on you progress…as Jackie says, we are all here to listen and support you : )

Trust me if anyone knows how you feel it is US!!! for the first 6 months with this terrible disease I layed in bed wanting to die now im not a religious person at all I sadly knew It wasn't going to happen. I didn't want to be on pills either. Theres no way else to put it this shit sucks!! We are all living with this so don't feel alone...im crying as I write this because I truly understand my life is so different now. It haunts my dreams. I am on nortriptyline now which has helped me a lot with all the scary pains I have tn2 the med is also for anxiety and depression which in my case was also needed. Maybe if you havn't tried nortriptyline it is an option for you. Please write me if you need someone to talk to We can all help you through this.

I think that's the most succint way of saying it. This shit sucks. ! Well, it's true, isn't it. Seriously, what an inspiration everybody is here. That everyone here has somehow found a way to just keep going... it's amazing.

what would we do without this site?. I'm so grateful it is here. I'm so grateful all of YOU are here. Now I don't have any expert knowledge other than my own experience, but I think it may have had something to do with the exercise I tried on the weekend. Everyone's experience is different as is their recovery times. It seems to me that you only find out how much you can do until you do something. I did the swimming on Sunday and now it is Thursday. Today is the first day there's been no pain since the swimming (as you can tell I am much less hysterical with this post). Perhaps my head just isn't ready for the exercise yet. It's a bummer because I really want to swim. For those of you who are not here, Australia is getting cooked by the heat at the moment. The activity on Sunday is the only different thing I have done in 8 months and it's the first time I've had the pain since the surgery. I could be wrong. This thing is so unpredictable, you can never really know sometimes without just waiting it out. I really do not think I could live with that again and I was extremely lucky in that the person who did my MVD ONLY does this kind of surgery and has had many, many years of experience with it. In fact, I was worried that maybe the teflon got dislodged somehow. If that ended up being the case, I would have zero hesitation going back for a 2nd MVD and even a third if I had to.

I can't thank you enough for just being there. I got so carried away with the fear of another 8 years of this crap. You are all just so wonderful. :)


Just read your message. Everyone is here for you, you are a strength to all of us fellow sufferers, please keep posting, by being here for each other in times of need is a big part of how we cope with the pain. When I feel bad the old verse I think on helps me a lot, it says

No man is an island.

No man stands alone,

Each man's joy is joy to me,

Each man's grief is my own,

We need one another ,

So I will defend,

Each man as my brother,

Each man as my friend.

Sorry if I sound silly but I truely believe this and it may help in times of trial to read it to youself. Glad you are still here with us. We do all need each other.



Oh, you must have been told…my top guru…said none of it is all in the right place UNTIL

One year mark!

Even then , it got me in and out of remission for more than one, year two…life is good again! I would do it again …but don’t have to yet!

We all know exactly how you feel. It's so freaking hard. I know how absolutely horrifying it is to think that you might have to live with this the rest of your life and I've only been struggling for about 2 years compared to your 8. It's so scary but you have to remember that what you're seeking is relief with death, and by dying you won't be alive to even feel that relief. So dying is even more pointless then living through the pain. Remember you're not alone. 26% of those with TN with commit suicide - you don't need to be another statistic. I hope you're ok. Much love, Hannah

Just read the posts and so glad that today is better for you and yes this group truly is a life saver. I had a dark day last week, felt like giving in and giving up, but I know I can't do that. My disabled hubby needs me and my dear Saint Bernards and cats need me. I don't have family around, but believe we can make our own family! Having a job you love with good people is so wonderful! The past almost 4 years has been quite the journey for me, between TN my hubby was in hospital for 2 1/2 years, home for the past year, in a wheelchair, lost a leg, in kidney failure...really all this at 47, oh my! But I just have to believe there is always a plan for us, God knows it, we do not, and I have to say God must think I am a whole lot stronger than I do at times! I have learned there are days it consumes and overwhelms me, but like was said there is always tomorrow and with the meds I think the better days out number the bad. You are strong, we all are. It is a blessing we have each other. Saw how hot it is there, be safe and exercise can come in time. Be good to you and let us know how you are doing and know you have a family right here :)