I was diagnosis with TN last July and CK in October but the pain has come back. I have felt so alone until my sister's friend (lives in Ohio - I live in Alabama) who know also has TN were introduced and she told me about this website.
My question is does anyone else have a problem with their family and friends truly understanding what is going on? I have tried to explain how I feel and I know they love me and support me but I don't think they really get it. How do you get them it understand?
Does anyone else still have to eat soft food on the right? Had to change the way you kiss? Does talking make it worse? Does anyone teach for a living? (by the end of the day the left side of my face hurts soooo bad)
There are so many questions I have and thoughts running through my head. I am so happy I was told about this site and now know I am not alone!
Yes,yes,And yes.You definately are in the right place as we all know exactly how you feel.My wife didn't truly get it until she saw me have a bad attack.Still,only us that suffer or have suffered can truly understand.How you can teach i have no idea.Talking has sometimes been impossible for me.Lots of info and good people here.Welcome.Don
Thank you. I am thinking that I am have to change jobs. I had taken off the last half of last school year because in between all this they all found a brain tumor. I started back this fall and each day is getting harder and harder. Do you also find it hard to brush your teeth sometimes?
Don said:
Yes,yes,And yes.You definately are in the right place as we all know exactly how you feel.My wife didn't truly get it until she saw me have a bad attack.Still,only us that suffer or have suffered can truly understand.How you can teach i have no idea.Talking has sometimes been impossible for me.Lots of info and good people here.Welcome.Don
Yep,it was in my teeth a lot.It's hard to deal with.I never tried it,but some have used Lidocaine rinse and patches for help.I used warm diluted Hydrogen peroxide to at least not feel so funky.My wife has taught for 30 years.God bless you.D
Ginger yes that is one of the very frustrating parts of TN. No one other then a TN patient truly understands your pain. Welcome you will find friends here. I suffered with TN pain for 8 years and the only one who really understood the pain I was in was my wife.Today, 30 yrs since my MVD and end of my pain, it has affected her more then me. She tells me how many a night . when I was late from work, she would sit worrying that I wasnt coming home and how would she raise 2 kids by herself. There is really no way to get others to understand other then educating those close to you. Good luck and we are here for you
I truly do appreciate y'all. God has been so good to me and now He has given me a whole new family. There are so many things I was thinking was only happening to me, but after reading posting on this site, I am beginning to see I am not a "freak." I have had a hard time finding a doctor who understand how I feel. I think it's time to move to the "big city," - right now I live 2nd cow to the left! haha I try to keep laughing - crying makes the TN worse.
Ed said:
Ginger yes that is one of the very frustrating parts of TN. No one other then a TN patient truly understands your pain. Welcome you will find friends here. I suffered with TN pain for 8 years and the only one who really understood the pain I was in was my wife.Today, 30 yrs since my MVD and end of my pain, it has affected her more then me. She tells me how many a night . when I was late from work, she would sit worrying that I wasnt coming home and how would she raise 2 kids by herself. There is really no way to get others to understand other then educating those close to you. Good luck and we are here for you
Honestly I do not know where I would be without this group. In addition to the wonderful emotional support from all of you I have learnt so much about this illness here. TN is not know very well in my country and even among doctors there are many misconceptions. Because of this site I have gained so much self confidence in dealing with this when it comes to talking to doctors, friends, family and colleagues. Yes,we are very sick - no, we are neither hypersensitive nor pessimistic - what we have achieved in living with this and dealing with this is amazing and brave!
I'm lucky in a way that my husband is a stay at home Dad. I depend on him to change the baby's diapers, check the kids' homework and so much more. Thanks to carbamazopin, my landlord called and the hubs had to talk to him. But you are not alone- the pain is excruciating- enough that I'd take meds that knock me out half of the day to avoid it. What are you doing to control it?
Welcome ginger to the tn support site and I’m so glad you found us:D I can begging to tell you how many times people could see some type of viable thing that went with tn as well, but that’s not possible. So to explain family and friends can be tough. So will try to understand others not so much. One thing you might want to try is called the spoon theroy. It’s fantastic. You might have some better success of explaining how tn affects if use it. You can find this by googling the spoon theroy or click below for the link. Feel free to ask away on anything and yes since the start of my journey with tn I have changed.
Do you know anyone who teaches school and has this? By the end of the day the left side of my face is hurting so bad. I think it is from talking so much.
I am happy to hear that your husband is able to stay home and help out. I don't know if I could do it with small kids, I kids are grown. The dr wants to put me on cymbalta and i have never heard of anyone taking the med before. Have you taken this? if so, how did it work for you?
divinedimension said:
I'm lucky in a way that my husband is a stay at home Dad. I depend on him to change the baby's diapers, check the kids' homework and so much more. Thanks to carbamazopin, my landlord called and the hubs had to talk to him. But you are not alone- the pain is excruciating- enough that I'd take meds that knock me out half of the day to avoid it. What are you doing to control it?
I am so excited to have found this group. I really appreciate your words of support. I wish I could tell you that it is just dr in your country who do not know a lot about this but I have meet some who are not very knowledgeable.
Deanna said:
Honestly I do not know where I would be without this group. In addition to the wonderful emotional support from all of you I have learnt so much about this illness here. TN is not know very well in my country and even among doctors there are many misconceptions. Because of this site I have gained so much self confidence in dealing with this when it comes to talking to doctors, friends, family and colleagues. Yes,we are very sick - no, we are neither hypersensitive nor pessimistic - what we have achieved in living with this and dealing with this is amazing and brave!
Welcome Ginger! You are not alone, many people here feel the same way you do. I know there are a couple teachers on the site, you might want to start a new discussion asking if there are any teachers out there in the title. I am a therapist and spend most of my day teaching, just one on one rather than a whole classroom, I imagine that is MUCH harder!! i think someone said they went into Special Ed to decrease the # of students they work with. Good luck to you!!br/>
Ginger said:
Do you know anyone who teaches school and has this? By the end of the day the left side of my face is hurting so bad. I think it is from talking so much.
Do you know who the teachers are? I would love to talk them and see how they deal with it. This has been such a weird experience and a day-by-day learning curve. I keep looking for something that will JUST work! I am not sure what to do most of the time. I am grateful to God for finding this site.
Kathy said:
Welcome Ginger! You are not alone, many people here feel the same way you do. I know there are a couple teachers on the site, you might want to start a new discussion asking if there are any teachers out there in the title. I am a therapist and spend most of my day teaching, just one on one rather than a whole classroom, I imagine that is MUCH harder!! i think someone said they went into Special Ed to decrease the # of students they work with. Good luck to you!!br/>
Ginger said:
Do you know anyone who teaches school and has this? By the end of the day the left side of my face is hurting so bad. I think it is from talking so much.
Hi there, I’m sorry you’re having a hard time being understood. I know how hard that part of this is. I’m lucky that I have a good support system but even as wonderful as my family and friends are I still feel like I’ve exhausted everyone with this. I try so hard to act normal or pretend it doesn’t hurt. I try so hard to ignore it but it’s always there and it shows. I’ve been eating mostly with my nutribullet because I have to chew on my left side always but even smoothies hurt…sucking through a straw, temperature or even the smallest piece of food getting stuck by my gums sends me into a panic. I too have had to adjust the way I kiss and that makes me sad, I hate to have to pull away. My husband has had such a hard time with this and I feel terrible when I have to adjust how he can be close to me. I’m a chatter box if you can’t tell by my long response and sometimes I hate that talking or laughing or even smiling hurts so I seem like I’m unhappy even when I’m not. There is no real way for the people that love you to fully understand without feeling it themselves but hopefully they can be empathetic and supportive. I have been so grateful for this place, I’m reading and posting on it almost everyday because I know people here do understand and I don’t have to worry about sounding like I’m crazy here, Even though I still might Hang in there and I hope you can at least take comfort in knowing you’re not alone. That alone has helped me a great deal. Good luck and feel free to message me. I was just diagnosed this year but have been suffering since 2010 so I’m still trying to figure stuff out as well. Sorry for the long reply but I hope it helps.
I too love to talk and hate that I can't type as fast as I talk. I have had a lot support from my family but I feel like that everyone is sick of hear the same old thing from me. I have gotten to the point where I when ask, "how are you?" I reply, with a true southern answer, "everything is fine!" Thank you for taking the time to respond. I hope all goes well for you.
Yup. I just say "Fine" because it's too much to discuss. When people ask "what is wrong"? I just say I'm not well. If they continue I just say I have a chronic, painful disease. No sense telling them which disease...it's only more talking and more questions. I tried to explain it to someone at church a few days ago and she left with the impression that I had dental trauma and would be better soon....lol. I don't know how that came across.
Ginger said:
I too love to talk and hate that I can't type as fast as I talk. I have had a lot support from my family but I feel like that everyone is sick of hear the same old thing from me. I have gotten to the point where I when ask, "how are you?" I reply, with a true southern answer, "everything is fine!" Thank you for taking the time to respond. I hope all goes well for you.
Hang in there and I hope you can at least take comfort in knowing you’re not alone. That alone has helped me a great deal. Good luck and feel free to message me. I was just diagnosed this year but have been suffering since 2010 so I’m still trying to figure stuff out as well. Sorry for the long reply but I hope it helps.