Add me to the bed next to you!!!!

I started with this last year and thought that I'd associated going out in the cold and wind with pain, which led to me not going out over Autumn or Winter. I was hoping that when the warm weather came I'd be out and about as usual. Yet here I am. Scared to leave the house. Nothing rational, apart from the fear that I'll get somewhere and be in too much pain to get back home.

I was in the process of talking myself around, but then I've had a run of bad pain days (a few of which were spent doped up to the eyeballs in bed praying for the pain to pass). I felt it building up while I was out with my partner and was so grateful I had him to rely on to get me home safely.

I've become so withdrawn from the world, but still keep fighting back. One tip is to keep a card in your purse/wallet so that if your having an attack you don't have to explain the situation to a stranger (my pain's constant but some days are worse than others). The Trigeminal Neuralgia Association provide members with a card to keep on them, but you could write out your own. Another think I've done (other than join Daily Strength) is to indulge myself in something I've always wanted but never had the time. I got a parrot to keep me company through the lonely Winter months when everybody goes about their own buisness. I now volunteer to safehouse parrots for a national charity. This keeps me in contact with the real world.

Still not taken that walk in the sunshine I know I need to do, so I've booked myself a doctors appointment (walking distance) at a time when nobody's around. That should make me do it!

I'm on anti-depressants too, and about to lose my job and my career.

Hi Pitmum,
This disease is the worst... I do get the feeling of being lonely. I lost a few friends.. I was always vibrant and spontaneous. We would go dancing and watch sports games. Since I was diagnosed.. I cant do these things... I still go to family functions.. thank God I have an extended family... 100 first cousins.. and much more second.. They keep me going... I try to get out to the stores... I talk to anyone who will listen.. I was out yesterday.. saw a woman taking a picture of a outdoor set I have.. I said, " excuse me.. I have that set I love it... created a conversation... I'm a people person.. this is how I get through... If you can get out... talk to anyone you see.. It will make you feel more connected... I see babies.. Love them.. how old are they... awww cute... go on from there... I'm chatty... I know may sound crazy.. but I need to feel connected...Titch.. I know what your going through.. you know I lost my job.. If you need to talk.. hit me up with an e-mail.. always here for you.... Pitmum... If you want to talk.. same applies...

Take care...Hugs

Dear Pitman,
don't ever give up. This is a strange condition that can spontaneously go into remission as mine has done twice already.
It is also related to stress so as much as you can, try and eliminate stress from your life.
It is not the worst disease, believe me. I'm living that one right now with my husband who has Alzheimer's disease.
Talk to your doctor. Make sure you are taking enough meds to keep pain at a minimum and don't give up hope.

Sorry I made a mess of your name. Sress!!

@ pitmum ~ I was just diagnosed in March '11 but have been living with TN since July '10. I know exactly how you feel. Anyone that knows me personally knows that I am a outgoing, go getting person that loves to talk and be around people. Not so much the case anymore. I've kind of secluded myself to my home and go out only when it's necessary in fear of having an attack. I've picked up my daughter from school (less than a mile away) and experienced an attack when driving (had to pull over) while my son is asking me what was happening (how do I explain that to my child when I am going through an attack?)

I have since made it through the side effects of Carbamazepine but my doctor has added Vicadine in the mix and is getting ready to switch me to Trileptol at the end of the month and has already told me that I would be experiencing a few days of severe pain while the Carbamazepine exits my system and the Trileptol is introduced.

Had my MRI done on Tues and the nurse called me the same afternoon and told me that it was clear of any cancer ~ leisons ~ and MS (great) my question was where do I go from here? She said that the doctor wanted me to continue on my medications but there was no reason why I could not go back to work ~~~ I just broke down crying and explained to her my fears and that I am terrified to leave my house because I may have an attack in public ~ have not been to work since Feb (fighting with short term disability) because I do not want to be on the phone with a customer and have an attack or sit in the lunchroom crying because I can't eat my lunch and people asking me what's wrong. Not sure why the nurse that I spoke to was not as undertanding about the condition being she works with the neurologist but she wasn't. I told my husband other than this group and researching online I really feel so alone with this disorder so I posted on here if there were other people in the eastern part of NC that would be interested in creating a local support group to where we could meet once a month at a park or something. Maybe start raising awareness to this disorder and know that you are not alone in this.

I sit here at night and get so depressed after my kids go to sleep (husband works nights ~ 3 minutes away) asking myself ~ why?? how did this happen to me? Hopefully ~ I will be able to get the answers I am looking for because I do not wish this on anyone ~ so I just wanted to let you know that you are not alone in feeling the way you feel.

l no how you feel its so hared to go out and like you seed wren you do go out and then you have attack and tray to explain it to someone that's do-sent under stand rot you are going fro its so hared. l feel better in side of my house but sometimes you have to go out with some one that's under stands rot you are going fro and yes you do feel like there is no ending but there is just tray to be more positive in your self and we all no its hard a lot of times but there is hope fore all of us at the end of this.

Sinky,

You always make me smile... Keep up the positive posts... :)

Thanks everyone for letting me know I'm not alone!

I've never been a 'social" person but I like to talk especially when I am around others that are into animals and dogs like I am. I LOVE all breeds of dogs and love going to dog shows and just taking in all the knowledge there.

One of my triggers (oddly enough) is talking. While I am talking I can feel my jaws tensing and trembling. It's hard to hold a conversation with someone when it looks like you are about to break into tears!

A few weekends ago I went to a dog show (by myself) because I couldn't get anyone to go with me. I was there 15 minutes and had to leave. By the time I got to my car I was in tears!

And not having a doctor/neurologist that understands what i am going through SUCKS!

Thanks all again!

Hi are you on antidepression meds sounds like maybe some would help or maybe a change,,The fear is real of going out and not know, and the people who don't understand and we have found Drs who know what it is but never has treated anyone...Don't know if you have insurance or use a clinic either way go back with your probelms they are real.. TN does go away after awhile but in many cases it comes back getting the right dose of meds and that takes awhile to help you lived though it all...My husband first attack was 2006 stay a few months and stop...in 2009 3yrs later here it was again stay all summer long going, it went away after we switch ot brand name Tegretol. Genrics are good but their is something in the brand name sometimes that just clicks and the pain was gone...It came back in late fall of 2011 went back ot Tegretol as they is the only drug that help him he has tried them all....by Dec 25/10 he was in real bad pain we went to ER they gave him a shot it only took him to a level where he could stand the pain did not stop it....He stay 3 days switch to TregretolXR it a extended time release so it last longer to fight the pain, he was send home with that and pain meds lasted 3 more days we were back in the ER he could not stand the pain another shot and they kept him a week in hospital trying to adjust the meds...He came home and that was Jan/11 that Dr said he would have to take meds for life....well that wasn't a good ideal as now the meds side effects caused short term memory loss, shakes of his hands and his feet were very unsteady,,,,We finally went to a Neurosurgeon who had had many casesof TN and does head surgery and he did a MVD in March.. There is a book called "Striking Back by Geoorge Weigel & Kenneth F. Casey MDS it a layman guide book to understand & treating TN what is often the called the Worlds worset pain..I bought ours on Amazon it isn't real cheap but you can buy a used one may even find in a library not sure...But it will answer all of your questions and help you to be better educated on this stuff. We did our home work long before my husband did his MVD surgery...He had in March and so far no pain... Sorry this is such a long post. Just don't give up keep fighting and go back to Drs. and try getting that book it will help you so much as most Drs didn't even suggets this, you have ot find the answers yourself...Peace & hugs,,,Lou

@pitnum
You are definitely not alone! Please hang in there and find a neurologist that understands TN and a doctor that can help you with the depression. This is horrible stuff and no one really understands the pain unless you actually experience it.

I used to be a social butterfly. Always invited to outings with my friends and just enjoying life. I have become a hermit. I've tried to venture out several times but I don't go far and not for long. I tend to only go to the people that know what I'm experiencing. Then I have people that want to know about TN and I try to explain but then I'm in extreme pain from talking.

I have found myself very "snappy" and aggravated all the time. A lot of times I just keep myself in the spare bedroom and don't talk to anyone. So see, it's not just you. Please stay strong and have faith. I will pray that God watches over you and helps guide you out of the darkness of depressions. Take care of you!!!

this is sooo common with this disease. you almost become reclusive because of all the factors. have you tired a low dose of cymbalta? it is so good for depression and nerve pain.
all of our lives have so changed, losing of friends, jobs, even mates. but know God will not leave you.
just do one day at a time.
when i can handle it i am out just driving in the sun if this is all i can handle it's okay.
i love that you love dogs. i have a fairly new dog. he is a toy aussie. he is 7lbs and has blue eyes and is a blue merle. check out the web site where we bought him from.
justa little aussie.
you will enjoy looking.
also i have to have a dog with me. it is such a gift to have a buddy hanging out with you no matter what is going on in your life. the unconditional love they bring helps my moods all the time. a pet is such a mood lifter.
i will try and post a couple of pix of roo.
jady

it makes me so happy to see how everyone supports each other and is so positive thanks so much. You have no idea how much it helps.

Dear Pitmum,

Yes, I have felt all the things that you are feelieng, and done most of the things that you are doing. I've never been that outgoing, so now I have an excuse. Talking is seldom a trigger for me, but I do get bolts of pain from the blue.
We enjoy eating out. My pain is under control most of the time. Eating can be a trigger, and if all the available food is hard, and thick, I have been known to have a panic attack in a restaurant and/or cry, right there in fear, before trying to eat.
Staff parties are OUT. The stress of being with work people, plus eating or drinking is too much. It's a fact. Oh well, there are worse things I could have.
Remember that remissions, where you are pain free for awhile are quite common in TN. I hope you will have one soon. Maybe when the pain reoccurs, it will be much more manageable.

Love, Dulcinea2

This is kind of sad, but I've had panic attacks for 12 years, so people are already used to be me being odd in public. I just was diagnosed with TN last month, but after thinking back through my life, I have had small episodes of this going back to when I was 16. I would get the blanket "ear infection w/no infection" diagnosis, because my pain typically starts in my jaw and radiates to my ear. This is a very strange disease, and I'm pretty sure mine's atypical, so it makes it even odder. I just try to put everything into prospective...you don't need to go to a psych ward. The pain is real, and when your triggers involve many of the things you would do while you are out, it makes sense to avoid them. Just be strong and be thankful for the people in your life who stand beside you....I've come to find that those people may be few, but they are the most wonderful people ever and worth more than a dozen acquaintances who run at the first sight of problems.

THANK YOU so much everyone! You can't imagine how it makes me feel to know others understand what I am feeling!

I am so happy I found this group.....without it I would be lost. I also joined a group on Facebook.