Has anyone become isolated from social gatherings due to trigeminal neuralgia? I am more and more so. My family used to count on me being the life of our parties. Now if they see me, it’s just a good thing. I don’t like being there, but not being able to join in like I used to, so I avoid the gatherings more and more often.
Hey. I know how you feel. I am not a party person or good in entertaining. But I love socializing and just sitting along. But it seems I even got more quiet as before and since smiling and talking triggers pain I rather prefere to be quiet and listen. I enjoy this very much. But it seems I make the impression as if not so even though it is not my purpose. People not easily understand and assume you are grumpy. We lost a lot of social gathering people we used to meet but the phone calls came less and less.
I can also see the effect on my own family as they are often think I am angry because I try to hide the pain and still try to do as much as possible with them.
I guess it just needs time for everyone to accept a new me. But I refuse to start hiding away and make my home my prison. The world has so much lovely things to show us. What would we miss out if we hide at home? the warmth of the sun, the smile of our family, flowers, new places and new people. Perhaps we have to just present ourselves as a new person instead on grieving about the old us?
I feel you… This is the hell part when TN attacks me severely… people & colleagues don’t know why I changed & why I am acting like this! I wish if I can only talk & communicate with other… I wish if I can keep my job my daily life activities… This is my dream in life to live in peace!
I, too, isolate myself. I used to be more outgoing and loved anything outdoors.
I don’t like people to see me having an attack. It can be a scary for them. Sometimes they keep asking me what’s wrong or what can they do or how worried they are. I know they’re genuine, but I don’t like feeling helpless or making them feel helpless. I don’t want to wear them out.
I do try. I went to a girls dinner out a few weeks ago and ended up leaving within the hour. My one friend kept messaging she was worried about me. I try because I know how bad the isolation can be and humans need social interactions.
I wish I had a solution for you, but I’m in this boat myself. I’m trying to accept the woman I am now vs who I used to before TN. I think that’s the key perhaps to navigate through the isolation.
I think we all mourn the people we used to be.
I am 21 and in college and I spend most of my time at home. I used to be able to do so much before I got trigeminal neuralgia. My face hurts all the time so I really don’t like being out. I went to the movies about a month ago with my boyfriend for the first time in about a year. The noise hurt my face even more and it was awful. I just spend my time doing jigsaw puzzles lol. I used to go do so much and go to family events with my boyfriend all the time. But so much stuff sets off my face so I usually don’t take the chance. When I have really bad attacks I have usually been at home but a few weeks ago I was in ulta and had one in the store. When my face stopped twitching I noticed people just staring at me. Luckily I had my boyfriend there so it made it a little better but I kinda felt embarrassed. I had people looking at me and I know they don’t know what’s wrong with me. I know how hard it can be to not be able to do everything like we used to be able to do.
People don't understand. I don't understand. I hate this whole stupid thing. I have very little life beyond home. Fortunate for me I live in the middle of no where, have no neighbors, and live on 40 acres. I don't have to explain to anyone what I do or don't do, except my kids, they don't ask any more. I hate this whole stupid thing. One day at a time. God is in control. hugs~~
The isolation is the worst part of this disease. I cannot explain it to one more person, so I avoid social gatherings. My relapse this time is so awful that I become impatient with questions when I don’t really mean to. I cry easily because I am so frustrated. So…I feel crazy, sound and look crazy to people who don’t understand. Hence, the isolation. My people are here, and if I couldn’t come here where I recognize everyone by their words I would lose my mind. Staying calm is key. I get that now. Nevertheless it is hard when your day is spent coping with side effects from meds and crazy teeth and ear pain. I force myself to walk with my husband. My balance is off, but I walk. I’m not sure if it helps with the pain but it helps your state my mind. So yes, isolation is the hardest. Best wishes to all.
Warm weather helps settle my condition. I can actually get out more and enjoy more social life, but still have to avoid loud gatherings. If I find myself in one, then I pop on my sound cancellation device and cut back on my involvement. (less smiles, less horsing around, etc.) I definitely have battles with air conditioning. I keep a pair of snow pants, and a fleece hat in my basement where I do most of my crafting. Until my heaters warm it up, it can be intolerably unpleasant for my face, then suddenly, it’s okay, and I shed the winter stuff. Now, that is a huge LOL! Down there I have a shop light that produces both heat and bright light, plus a cute electric fireplace. I also have two east facing windows, and a miriad of lights that face my work station. What a light feast for my creative self - if I was motivated (darn the drugs and pain). Instead, I “snack craft” down there, if you catch my drift. Hang in there my friends. Together, we are isolated, but in our hearts, we are not alone. Imagine all the things we are doing if you add them up together.
Notafraid said:
Warm weather helps settle my condition. I can actually get out more and enjoy more social life, but still have to avoid loud gatherings. If I find myself in one, then I pop on my sound cancellation device and cut back on my involvement. (less smiles, less horsing around, etc.) I definitely have battles with air conditioning. I keep a pair of snow pants, and a fleece hat in my basement where I do most of my crafting. Until my heaters warm it up, it can be intolerably unpleasant for my face, then suddenly, it's okay, and I shed the winter stuff. Now, that is a huge LOL! Down there I have a shop light that produces both heat and bright light, plus a cute electric fireplace. I also have two east facing windows, and a miriad of lights that face my work station. What a light feast for my creative self - if I was motivated (darn the drugs and pain). Instead, I "snack craft" down there, if you catch my drift. Hang in there my friends. Together, we are isolated, but in our hearts, we are not alone. Imagine all the things we are doing if you add them up together.
I had to laugh when I read the “snack craft” line. I have random silk roses I made for my granddaughter, bracelets half finished, random bags of beeds and flowers in Michael’s bags. I guess we will have to call them our, “bags of hope”, the promise of things to come. Hey, putting myself together and stumbling through the craft aisles was the challenge for the day. I now have a violin that I am trying to teach myself to play. Oh, the things we do.
I feel like someone was reading my mind . I also used to b the fun girl after 15 yrs n major surg I’ve become unreliable no fun just like the depression commercial where u c the puppy w the leash n the mom looks like a sad state of affairs I used to love life love swimming dancing having friends having a good marriage now I feel like everyone’s dissapointment
Hi Not Afraid, Thankyou for the opportunity to whine a little. Yes my quality of life has changed completely. Smiling, laughing, talking, eating, etc etc make everything worse. The meds wipe me out, the pain wipes me out, the pain from yesterday wipes me out. I feel like I use all of me just to go to work and get home. I used to be so sociable and now I am so unreliable. I can not commit to any gathering or outing with friends because I dont know how bad it will be that day. Will I be able to drag my butt out and fake it or will I fail miserabley trying and need to go home after an hour. I feel like a shell of my former self. I understand that this is the way it is and that hopefully it will get better but I feel like I am wasting so much of my life. Sigh… (I went to the pain anesthesioligist today and did not get good news --too much history of infection makes for bad odds)
Also… My sisters house is LOUD. And sometimes the loud vibrations hurt. I feel isolated because I can’t be the hands in lovey aunt I have been. Breaks my heart.
Sadly TN can be very isolating…especially when you’re pain is unmanaged and your quality of life has changed so much.
I can tell you from my own experience that it’s been a huge adjustment…for the past 3 yrs I’ve been home. Life changed overnight.
I too was very social and lived a busy life.
Not afraid, it’s important to be selective on what you participate in…and constantly try to not become completely isolated. Reach out via text, phone, email and here to maintain a sense of connection.
We, along with our family & friends need to adapt. There’s a learning curve involved.
I can tell you that instead of going out for coffee with a friend, my friends now come to my house to visit. Sometimes I’m in pyjamas and have a heating pad pressed to my face, other times I’m dressed and ok. I’m cautious of how much I talk. As talking can be a trigger for me.
Birthday gatherings, dinner parties, events out , I’ve missed more than what I’ve attended, but when I am able to go out, it’s for limited times…
Most people now know that I can’t commit to anything…I only know the day of whether or not I’ll be able to do anything, sometimes only hours before…
I hate it. But I’m grateful that my friends and family for the most part understand it.
It’s easy to stay cocooned in our pain. I’ve been guilty of it many a time…and sometimes a little isolation is good for the soul. We just have to be conscious of when our isolation is overwhelming…it is then up to us to reach out .
I think it’s par for the course that we feel less than because we can’t do or be everything we want…but we must remind ourselves we have worth, and seek affirmation from our loved ones occasionally to remind us if we can’t see it ourselves.
((( hugs ))) Mimi
PS. See the attached image/quote…
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At my worst, i volunteered just a couple of hours per week, at hospice.
I was toooo locked in the house.
I felt appreciated and useful if only for a short while.
I proudly wore my lidocaine face patch…so i could get thru the shift with little pain. I was also distracted, and felt that i was not going to worry about my pain when there was so much family suffering down the halls. I made fresh flowers, got snacks out, greeted families at the door.
It wasn’t easy , but i had to get out of my own misery… However there are lotttts of types of volunteerism!
Reading ur coment sounded like u were describing me n how come we never here so n so the ax murderer has t n n were not going to treat him I in hospital now I have a tumor behind eye n sinus infection so after MRI n ctscan they say infection was lingering for so long it’s gotten into bone. N I have shingles in my mouth. U can I manage how kissable I am plus pain makes me ugly. I guess I need to stop feeling sorry for myself. Good luck to u
Liligirl said:
Hi Not Afraid, Thankyou for the opportunity to whine a little. Yes my quality of life has changed completely. Smiling, laughing, talking, eating, etc etc make everything worse. The meds wipe me out, the pain wipes me out, the pain from yesterday wipes me out. I feel like I use all of me just to go to work and get home. I used to be so sociable and now I am so unreliable. I can not commit to any gathering or outing with friends because I dont know how bad it will be that day. Will I be able to drag my butt out and fake it or will I fail miserabley trying and need to go home after an hour. I feel like a shell of my former self. I understand that this is the way it is and that hopefully it will get better but I feel like I am wasting so much of my life. Sigh… (I went to the pain anesthesioligist today and did not get good news --too much history of infection makes for bad odds)
I know exactly hoc u feel if sucks I do used to b cool aunt Toni now I just sick aunt toni
Lisa (iamrite) said:
Also… My sisters house is LOUD. And sometimes the loud vibrations hurt. I feel isolated because I can’t be the hands in lovey aunt I have been. Breaks my heart.
I know exactly hoc u feel if sucks I do used to b cool aunt Toni now I just sick aunt toni
Lisa (iamrite) said:
Also… My sisters house is LOUD. And sometimes the loud vibrations hurt. I feel isolated because I can’t be the hands in lovey aunt I have been. Breaks my heart.