Love life/social life

sooooooo....i know most of my friends have now ditched me & i do miss the social interaction of having alot of girlfriends & going to dinner without having a drink of wine affect some kind medicine lol. But before this struck me I was thinking...oh once my son starts headstart in the spring i can start working more & maybe start dating. Well, then this came into my life & knocked me down. I dont think I have it as bad as some people, but its bad for me. I have had a few small tingle like shocks, weird abnormal twitching feelings, alot of burning, alot of people inside of my face punching the crap out of me, but anyways, now, i feel like i will always be alone.

how can one even imagine to be kissed when you cant even open your mouth all the way or chew food! i totally invisioned a different life for me & my son & this was not included. Even though I'm poor as hell & struggling i thought i could get out of it. im losing hope. how does one work & focus on their job with this. i know im worrying alot of the future but i just can't help it.

i feel like im just going to grow old & have my son resent me & be alone with some cats or a dog. no offense to anyone but i have never been into animals. im scared out of my mind of dogs & cats are wickedly creepy. but honestly, lately i have wanted a dog but i can't go outside to even walk the damn thing. i know im complaining & whining, but i really have no one to talk to. im so alone.

*hugs* I can relate to how you feel. Having TN has pretty much made me a hermit. That being said...for me, with the help of drugs, i'm starting to learn to live again. If you haven't found a dr to help with this, please do. Please. Just a couple little tegretol and neurotin pills makes me almost pain free. Close enough for it to be managable to eat, talk, and kiss (sometimes)

Even so..there are still days when my husband can not kiss me. We press our cheeks together on the opposite side or just touch hands. It's hard sometimes, because i really liked kissing..but well, i just can't do that anymore. Luckily, my husband understands. He's watched me go through years of pain, so on the days that we have to touch cheeks, he understands how important and intimate that is for me.

As for your mention of a dog. ...i have to admit, on my bad days, my little dog brings me more comfort than anyone else. She's a very little chihuahua mix and she'll just lay down with me. Just the repetitive motion of petting her helps calm me down and helps me relax. Plus, she doesn't ask what's wrong when i'm crying or try to tell me it's going to be alright etc. So, maybe a dog wouldn't be such a terrible idea for you.

Focusing on the job...*sigh* Before the help of drugs, it was very very hard. I spent weeks at a time with a stone face not speaking to anyone, not smiling..putting bezocaine paste in my mouth every 30mins or so. Then after starting the meds, i felt like i was drunk all the time. I couldn't focus or pay attention, but after a few weeks that abated some. It's been about 6 months now, and for the most part, i can focus and actually do my job, most days. I still have bad days and have to call off and stay home crying in bed with the dog, but those are less than before. AND...i know it won't last forever. You have to have hope, if nothing else. HOPE.

I really hope you find some companionship and comfort. And keep coming back here for support....we all need it sometimes.

~Mistee

Hi Tiarre,

Many people with TN are able to lead “normal” lives, including work, dating, etc etc
It just takes time to find the magic potion that works for you.
Have hope, I agree with Mistee, hope and thoughts of better days are what keep most of us going. When I was first diagnosed, I had TN for 8-9 mths and then went into remission for 8 years!!! It can happen !
When my TN came back, once I got to 800mg Tegretol XR , I had no pain for 2 years and lived well. You can too, you just have to find your med and its therapeutic dose.

As for the dating…start “shopping” online…correspond with some nice guys and when you’re ready and able you can meet for a coffee or something.

I have a little dog,she doesn’t need to be walked daily, she gets out for walks maybe twice a week. She has been my saving grace this past year…she’s great company, snuggles with me, makes me laugh and just knows when my TN pain is bad , she comes right over and licks my hand and just lies down close to me. My Roxy has been a real comfort.

Kids are super resilient, your son will learn compassion and feel proud to help you. You will teach him strength and probably enjoy some extra cuddle time too. Don’t worry too much, I know it’s hard not too, but better days are ahead.
Take care of you and have hope,
(( hugs)) Mimi

I agree with the ladies above. The right meds can make alot of difference and annoyingly it can be a journey finding them for alot of us. Although i dont really suffer from triggers, when in pain i dont even want anyone near me and it can be hard and i resent myself in fact. I have a fiancee who is a diamond but i am very aware that being a dragon should be taken out on something else not him but as its hard to be social he gets the brunt of all my varying moods. AFter a recent caldwell luc operation then i know how u felt, i could not have anyone hug me with my face near them or kiss my cheek or sleep on that side at all and its bloody hard.

When the time comes and you are with someone they will surely know about the tn as it affects your life big time and some people are just lovely and they too have there own thing to deal with and constantly try to connect with you behind all your stress. They too just wanna be with a nice person and having tn does not doom everything though sometimes it feels that way. Just gotta find other ways to connect like perhaps a masage or holding hands or snuggling (not up to the face!).

Jobs..the job thing is a worry for many. I am a trained professional hairdresser and i work with advanced colouring and cutting etc. I was used to being in a busy salon dealing with the fussiest clients etc and i loved my job. Now tegretol has butchered my brain and i feel frustrated.

If there is one thing i have learnt from tn its that you have to be able to adapt your life as much as you can and think outside the box. Initially i have been thinknig, oh my god i can NEVER do my job again, i cant even remeber how to cut hair or anything i just draw a blank, all those years of experience, but then i thought, what is best for ME.

I need less stress, something that does not take masses of concentration that most people could do, then i thought of it, i will be a maid. Many people criticised but if they are stuck up that is there problem. I plan when i feel a little less exhausted to go for a job in a hotel as a maid..it will pay the bills be less stress, help me to use the rest of my body more as ive gotten rather weak and it just seems viable. I stopped feeling sorry about WANTING to work in my old job and just thought, oh well, such is life, any job is ok if it pays my bills and gets that stress off my mind.

Lastly you are not whining, being in pain and stuck at home allows for us to sit there and think t6he worst while we feel our worst, it happens to us all hun and thats ok, just gotta rewmind yourself what you life is and not what it seems or how you think it will be. You have the control not the tn, even if its only control of somethings you make certain decisions etc.

Dont beat yourself up with your unproven worries!!!Having tn doesnt make you a bad mother or an undesireable partner. If someone else was writing this post i am sure you would say the exact same thing to them. You can do this just take each day at a time when you feel its all too much and you can 'whine' here anytime you want because we all read and care about your feelings :) sorry for LOOOONG message

Well, I am married, but I can tell you this.........when I have been having attacks, even when it is in the process of calming down, there is NO KISSING. I can tell when the attacks are gone (mine usually go on for about a week or longer, then go away, then come back, etc...). I feel completely normal when they are gone (no tingles/burning, etc....). That is when I feel normal. So I told the hubby during the attack times, that if we do it, we have to do the "pretty woman" thing and NO KISSING, hahaha! So if you start dating and it gets to the kissing stage or even further, make sure they know about your disease. Make them read up on it and learn about it so they will understand about the attacks. Then they will understand that there is NO KISSING during these times. Best of luck!