Don't worry, I'm not going to. But is there ever a point where you just want to give up?

1

I stress I'm not suicidal so don't worry about that. It's just I lkost the one thing I was great at and that was beaing anairdale weapons electronics technician. I'd probably(more than probably ne a chief by now. My career ended when retired at age 32 which I guss if you gotta go that's about the most you can ask for. One of my neuros was like with what you have and the severity of it I wouldn't do this to myself and even out of a naval mans mouth suggested I move out est where weed is legal. I wish, my anxiety would plummet and the wartm weather over there would help a lot.

I don't know, I turn 36 in 2 weeks and while I 've accomplished so much I still have a lot I wan't to do. It's like starting over. I'm totally afraid to live and too much of a coward to kill myself. They youthenizze animals, why can't they do it to suffering people. I'm so tired. Tons of women that like me but I just don't care. I'm tired of being in pain and all these damn doctors from the sand who don't know rheir ass from a hole in a wll. They make you just want to slap the for them belittle you. Oh, you look fine, OOOOh, don't get me started. Sorry about the vent. Hoe all works out.

2

Dear Matthew,

I am sorry for all the pain you are dealing with. I truely get it I am still trying to handle a large family I had handle till TN became part of my life and my Family's life as well. When my attacks are really bad I pretty much stay away from everyone by stayin upstairs in my bedroom. DH is on shore duty which I am so glad for that. Though even if he is on shore duty he still does not get home till after five pm or six pm by then I have dinner made the kids settled down.

The tired feeling I understand way to well. Living with TN is not easy and sometimes people look at you well you look like the same Gina I known for years. To only have them walk a day in our shoes ! I for sure know they would beg to be set free! My Hubby been really good with my pain its just being a Man ( military Man at that) he had to deal with " I cant fix it issue" my children well lets just say my three you old said he prayed that God would take his Mama's pain away :"( Out of the Mouth's of Babes.

I know one thing you need people in your life who support you and have read up on what you deal with. I do not think any one gets this Demon unless you live with it your self but I do know my family see it and they have broken hearts watching me dealing with pain. I had my days filled with pain then pain free days.

Not sure if you work out but for me it seems to be the only time I am pain free. I had this demon for three years and the work out part is the only time I am free of pain meds and have no attacks. I love my work out days.

Matthew I hope you will find something that works for you and a team of support. God Bless wishing you pain free days soon

Gina

3

Scott,

I am so sorry that you have been suffering this long and that your surgeries have been unsuccessful in the long term. I am new here and one of the first members to comment on one of my posts was "Jackie M". She has also had multiple surgeries and has TN for a very long time. Your story reminds me of her. I suggest you seek her out as a friend and ask how she get through it all. She seems to have a very positive attitude despite everything so something appears to work for her despite what she goes through.

If you haven't watched Dr. Casey's video (link on the main page) watch it. He focuses on MVD but does discuss other options on the video. Perhaps there is something on there that you or your Neurologist have not explored yet.

You are in my thoughts. Take care and hang in there.

Elaine

4

Hi Matthew,

I'm Jackie from Idaho, where we are having a really cold, windy normal winter. The weather this time of year is horrible for my TN and I seem to have more flares from November through March than at any other time of the year.

I have bilateral TN1, GPN and atypical trigeminal neuralgia. All of your thoughts about this disease are correct in some sense. It can be very isolating and it is definitely miserable. I was diagnosed in 2001. I have had multiple failed procedures - 2 MVD's, 2 surgeries for complications and the Gamma Knife, (all in 7 years), but I still believe there is something out there that is going to help us. I currently take a boatload of meds, from Neurontin to Dilantin to Amitryptilline and more and I'm not exactly sure how effective they are. I'm not going off them to find out. Last fall, I was told by the Mayo Clinic in Rochester, MN that "there is no treatment or procedure that will help this patient." That was a little devastating. However, I picked myself up, dusted myself off, went home and decided that TN is just an illness. It is not who I am.

I am, like you, full of life. I am medically retired, so free to pursue any other passion I choose. Last summer, I took a part-time job doing something I really liked and worked all the days that I could. The others . . . I called in sick. And, it was a blast! I knew it wasn't my lifetime career, so I was happy to be there. I helped with education and training of the two twenty-one year old employees and I contributed a great deal of knowledge to them.

This winter, I have busy doing projects inside my house because of the winter weather. I tackle everything from painting to cleaning. And I like it because it's also not my lifetime career.

I've learned with TN that TODAY is all I have. If I have a pain free or pain light day, today is the day I take on the world. With GPN, I lose my voice quite often. When I have a voice, I play "catch-up" with friends, family and co-workers I keep in touch with.

I have had to change the way I live my life, but I am still living it. TN only dictates which days are better than the others. And the better ones are filled to the brim with all the things I have ready to do. I have a good family and friend support network, but I am not a victim of this disease. I am a TN survivor.

I believe it is our responsibility to educate everyone who knows us about this rare and unusual disease. We are a limited group and most people don't know anything about it, not even the medical community. I even gave my Doctor a copy of the book "Striking Back - The Trigeminal Neuralgia Handbook". He couldn't believe there was so much information in one place.

Please let me know if I can help in any way. I would be glad to listen when you need someone to lend an ear.

With best wishes for a pain free or pain light day,

Jackie

5

Yes, Matthew.

I have.

All except for one doctor I have dealt with, who is unfortunately out of practice now, have been hard to deal with regarding treating my TN pain. I also relate with problems regarding the opposite sex. My TN interfered with my marriage, then I was widowed. Dating was hard because I never wanted to get out and do things. I am blessed with a fiance who understands and cares. But, I had to be honest with him up front that there was something wrong with me from the beginning. He was proud that I pounded the web and doctors until I knew what I was dealing with (and it was not TMJ, as I had been misdiagnosed with for years).

I am 38. I am raising two girls. My teenager is depressed by my illness, and sometimes bitter at me because of it. My mother believes that this is all in my head. THANK GOD FOR MY DAD!

I am unable to work due to my pain, so I hope I am a can find a resolution. I had a successful career as a Mortgage Processor. It may not sound like much, but I was happy with my accomplishments. My world has been turned upside down because of my bilateral atypical TN.

That is why people in the medical profession have a pet name for our illness, "The Suicide Disease/Disorder". However, I despise that term. It is archaic. There are so many options out there now. Even if your pain does not respond , the right combination of medications have been found by many people I have spoken with which make life almost as it was before.

It's true that we have something that, to varying degrees, will always make life more challenging for us than for others. That is why the site is called "Living with TN", and I like that phrase. Please do not think yourself a coward because you do not take your own life. (I will admit that, in weakness, at times, I have wondered why they did not show people the same kindness that they show animals). I believe, though, that it takes more guts to face the challenges coming your way and deal with them. Any form of TN is a big one. But, as others have said, hang in there, like you are . . . .sometimes success comes in the form of pain management, rather than a surgical cure.

Take care and keep your chin up, Matthew. I will be praying for you.

Stef

6

Matthew,

I completely understand what you're saying. It sucks when you're young and you feel on top of the world... you're doing what your good at and you're happy and then WHAM it's all taken away because of some stupid disease that you can't fix. If you're like me you're afraid of everything... afraid of anything that will set off another attack or worsen the one you're already having. I hate having to explain it to my friends why I can't hang out with them like I used to. They ask me what happened to the "old Amy" and I have to tell them she's gone... she doesn't exist anymore. Sometimes it is just TOO much.

But then I realized that while this thing does happen to control a lot of my life... it doesn't control ALL of it. Try doing anything... ANYTHING you can to enjoy yourself like you used to. For me... it's hanging out with my family and my puppy and watching movies. Or even just playing with my dog. I've only been part of this community for a couple weeks but this site has helped me in leaps and bounds over those couple weeks than anything else has in the past couple years so keep searching the site and find people that you connect with on here. They have great advice and will listen and understand you.

Good luck Matthew... I know it's hard but you'll make it through. I'm glad you have this site to vent to because we all need a place to vent once in awhile :)

*Amy

7

Thoughts of suicide, LOL! I''d jump out my 8th floor window and become paralyzed. Beside, I'll have a great view for the locust.

I, too, have tons of woman, both of them; )

Almost 4 years of Living with TN and oftentimes, 'it' feels like starting over. Sometimes I get tired of the PAIN, then I wake and start all over.

Sometimes, I vent. bob


8

HEY MATTHEW

AM SO SORRY U FEEL THAT WAY WHEN I FIRST GOT IT REAL BAD LIKE 2 YEARS AGO I TOLD MY HUSBAND TO HIT THAT DAM 18 WHEELER I WAS GOING NUTS I JUST GOT SOME MED FROM THE DOC IT HELP FOR A WHOLE YR ! BUT WHY DONT U SEE SOMEONE ELES IN TEXAS AND TELL THEM WHATS WRONG WAM HURTING AGAIN

BUT AM SCARED WHEN THE ATTACK MONSTER COME BACK AM SO SCARED I HAD THAT THIS OCT I DONT WONT IT NO MORE GOD BLESS YOU BROTHER!!! PS YOU TELL THEM DOC THAT YOU ARE NOT FINE BLESS YOUR HEART!!!

9

Matthew,

I read the subject of your post and it is the exact thought that goes through my mind every single day. I can relate a lot to your post. I am 21 years old and wish I had more control of the pain. Each day I think about how I "try and be normal" and then all the buts that occur after. I am trying to go to school and get my bachelors...but..what good will that do if I can't work constantly. I think, why bother? ya know?

this is horrible to say, but each time people say oh you look great, or you look fine. or give me a you are making this up attitude, I wish that I could give them just one hour of my each day. Yeah, looks do not say everything! I was diagnosed when I was 13 and went through HS, but had to miss months at a time. The rude and not understanding kids I went to school with thought such rude things..oh she is pregnant again..literally, that is what they said each time I an MVD and would be out for a month or whatever it had to be. It is just the face that people would judge without even knowing what was going on makes me so angry.

I am going on a tangent now, but I can relate to you 100 % and hope that there is hope for all of us in the future. Try and stay positive and keep yourself strong!

10

Hi Jackie,


I like the survivor bit. I've always thought of myself as a victim, not somene who is ill. I suppose it's what pops out the other side that counts i.e., I have survived the latest round of pain!!!

Nice one.

Jim


Jackie M said:

Hi Matthew,

I'm Jackie from Idaho, where we are having a really cold, windy normal winter. The weather this time of year is horrible for my TN and I seem to have more flares from November through March than at any other time of the year.

I have bilateral TN1, GPN and atypical trigeminal neuralgia. All of your thoughts about this disease are correct in some sense. It can be very isolating and it is definitely miserable. I was diagnosed in 2001. I have had multiple failed procedures - 2 MVD's, 2 surgeries for complications and the Gamma Knife, (all in 7 years), but I still believe there is something out there that is going to help us. I currently take a boatload of meds, from Neurontin to Dilantin to Amitryptilline and more and I'm not exactly sure how effective they are. I'm not going off them to find out. Last fall, I was told by the Mayo Clinic in Rochester, MN that "there is no treatment or procedure that will help this patient." That was a little devastating. However, I picked myself up, dusted myself off, went home and decided that TN is just an illness. It is not who I am.

I am, like you, full of life. I am medically retired, so free to pursue any other passion I choose. Last summer, I took a part-time job doing something I really liked and worked all the days that I could. The others . . . I called in sick. And, it was a blast! I knew it wasn't my lifetime career, so I was happy to be there. I helped with education and training of the two twenty-one year old employees and I contributed a great deal of knowledge to them.

This winter, I have busy doing projects inside my house because of the winter weather. I tackle everything from painting to cleaning. And I like it because it's also not my lifetime career.

I've learned with TN that TODAY is all I have. If I have a pain free or pain light day, today is the day I take on the world. With GPN, I lose my voice quite often. When I have a voice, I play "catch-up" with friends, family and co-workers I keep in touch with.

I have had to change the way I live my life, but I am still living it. TN only dictates which days are better than the others. And the better ones are filled to the brim with all the things I have ready to do. I have a good family and friend support network, but I am not a victim of this disease. I am a TN survivor.

I believe it is our responsibility to educate everyone who knows us about this rare and unusual disease. We are a limited group and most people don't know anything about it, not even the medical community. I even gave my Doctor a copy of the book "Striking Back - The Trigeminal Neuralgia Handbook". He couldn't believe there was so much information in one place.

Please let me know if I can help in any way. I would be glad to listen when you need someone to lend an ear.

With best wishes for a pain free or pain light day,

Jackie

11

Hi Matthew,

Sorry you're having such a hard time with TN. I think it would be fair to say that most of us do at some point. While taking no pleasure in other people's pain, it gives me some comfort knowing there are others' out there who understand exactly what I'm going through. That's why I think groups like this are so important; information and empathy. In my case, I would happily shoot myself (if I had a gun) when the pain is at its worst, but then I remember I have too much to lose. It's my family that have been rock solid throughout.There is nothing they can do for me, but it's a comfort knowing they are there when I get back to some semblance of normality. I've read Jackie M's reply and its all there for you. Its about being positive when you feel you can be.

I hope things get better.

Jim

http://killienutz.blogspot.com/
12

Permalink Reply by Matthew Tabb on January 4, 2011 at 4:28pm
Man, I was worked up when writing that. I usually don’t say much about anything but it happens I guess. I n a much better state now. I hope it lasts a little while. Thanks all!
You already responded

13

Matthew,

I am indeed in an opposite category, LOL!

My off the cuff, sometimes off the wall comments define me, as I am Living with TN.

It's all good...just not always THAT good. Take care, bob



Matthew Tabb said:

Well a sorry is in order. I pologize man. Getting mixed up is embarrassing . I forget myself. Thanks for calling me on it. Considering I feel horrible hopefully you are in the opposite catecory