I'm realizing im still in denial about this dagnosis, and am scared, exhausted, blah blah- you know. Does anyone have a link or video on how to cope in a positive, healthy beautiful way?
Hi Sarah,
I don't know where to find information, I can only tell you my experience.
This is what I've learn overtime.
It is very difficult at the beginning. I have had TN for 6 years now. The first stage for me was denial, going from doctor to doctor trying to figure out what was happening and hoping it wasn't TN. Why you might ask? because my grandmother had it and I saw how she suffered. I felt... lost.
But things are different now. The arsenal of medicine available is broader ans we don't have to suffer as my grandmother did.
There are a couple of things from coping standpoint:
learn, accept, and take control.
Learn as much as you can about the condition. I don't think it's a disease. We are not invaded by any kind of bacteria or virus. Learn what triggers your pain, what increases the pain, what lowers it, what time of day, what season (for me winter is the worst time of the year), if stress increases it, etc. Learn as much as you can about the cause, the medications you take, other medications available. etc. The more you learn the better control you will take of the situation and whan you feel in control, you will feel emotionally stronger.
Define who are your support network: For me its my husband, he has seen my at my worst and knows I am not making this up. I also have a doctor that shares information with me. But it could be a friend, a sister, a mother, a coworker, and us at this website. This tends to be an invisible condition. We do not look sick in between episodes, so there are people who will remain oblivious to what is happening to you.
I was depressed after I had the mvd and it didn't work. I knew i was going to live with this for a long time. After some time I decided to accept that this is my pain, my load, and if i need to go anywhere I needed to carry it with me. No one is going to do it for me, some people will support me, but no one will carry it for me.
The medicine works, and you and the doctor need to find the best combination and doses that will work the best for you. There are many options. Some people cannot tolerate the meds I take, and I could not imagine taking the meds that others take. They work different for different people.
Trying as best as possible to make a normal life will help emotionally as well, and you will find yourself adapting some things. For example, I sleep on my left side, if I get kissed I turn my left cheek. I brush very slowly my right side of my teeth. I eat sandwiches with forks and knives ( I make jokes about it at work because it looks snob). I drive to work before i take my first pill in the morning. I noticed that if I eat after taking the medicine I get dizzy, so I have a light breakfast on the weekdays. There are many, many ways to adapt and keep doing the things you like.
The more we adapt and know, the better in control we feel and when we feel in control we realize we are coping with the situation... until we get it resolved.
Hope this helps a little.
Happy new year and be strong.
Carolina
Sarah,
I am going to look into things more for a video/song for you. I have had TN for 8.5 years, 4 MVD's and DREZ..still have bilateral pain. I am 21 years old now.
There is one thing that I can say for sure..that is that this really stinks! No, seriously this is not a fast acceptance kind of thing. I go through periods where I am in complete denial/think that I am crazy and then times where I am accepting of what my life is.
Some suggestions I have are to be pro-active and educate yourself. It is annoying that you have to almost do the research for the Dr.'s but I found that it helps. Don't hold things inside..I have found it very hard to actually talk to people about TN (family and friends) even if they are my supports holding me up. I have found it incredibly helpful to journal. I vent there, I cry, get pissed, and even say wow I am so happy that at that time I was ok.. I have had it for 8.5 years. And know that it is ok to cry and be angry that you have to live your life different. I don't say way me, but get frustrated.
Best of luck and I will find a song for you..
Ally, You are right.
We also need time to cry, to get pissed, to be upset and that is OK.
Carolina.
This is such good advice. Yes, I've been there with the denial. It's natural, I guess. Thank you for the encouragement considering medication. I'm praying I can control this without surgery. It must be devastating when the surgery fails. You are so wise. This really helped me. Thanks again.
Norma
Carolina Thatcher said:
Hi Sarah,
I don't know where to find information, I can only tell you my experience.
This is what I've learn overtime.
It is very difficult at the beginning. I have had TN for 6 years now. The first stage for me was denial, going from doctor to doctor trying to figure out what was happening and hoping it wasn't TN. Why you might ask? because my grandmother had it and I saw how she suffered. I felt... lost.
But things are different now. The arsenal of medicine available is broader ans we don't have to suffer as my grandmother did.
There are a couple of things from coping standpoint:
learn, accept, and take control.
Learn as much as you can about the condition. I don't think it's a disease. We are not invaded by any kind of bacteria or virus. Learn what triggers your pain, what increases the pain, what lowers it, what time of day, what season (for me winter is the worst time of the year), if stress increases it, etc. Learn as much as you can about the cause, the medications you take, other medications available. etc. The more you learn the better control you will take of the situation and whan you feel in control, you will feel emotionally stronger.
Define who are your support network: For me its my husband, he has seen my at my worst and knows I am not making this up. I also have a doctor that shares information with me. But it could be a friend, a sister, a mother, a coworker, and us at this website. This tends to be an invisible condition. We do not look sick in between episodes, so there are people who will remain oblivious to what is happening to you.
I was depressed after I had the mvd and it didn't work. I knew i was going to live with this for a long time. After some time I decided to accept that this is my pain, my load, and if i need to go anywhere I needed to carry it with me. No one is going to do it for me, some people will support me, but no one will carry it for me.
The medicine works, and you and the doctor need to find the best combination and doses that will work the best for you. There are many options. Some people cannot tolerate the meds I take, and I could not imagine taking the meds that others take. They work different for different people.
Trying as best as possible to make a normal life will help emotionally as well, and you will find yourself adapting some things. For example, I sleep on my left side, if I get kissed I turn my left cheek. I brush very slowly my right side of my teeth. I eat sandwiches with forks and knives ( I make jokes about it at work because it looks snob). I drive to work before i take my first pill in the morning. I noticed that if I eat after taking the medicine I get dizzy, so I have a light breakfast on the weekdays. There are many, many ways to adapt and keep doing the things you like.
The more we adapt and know, the better in control we feel and when we feel in control we realize we are coping with the situation... until we get it resolved.
Hope this helps a little.
Happy new year and be strong.
Carolina
Thank you so much Carolina, Norma and Ally. It means so much to me that you took the time to respond. I have much learning to do! I am thinking of writing down these things I need to do to keep things normal- and I’ve realized I have naturally been doing things to avoid pain. The hardest realization was playing with my nephew on my lap, and having to turn my right cheek to him so he wouldnt touch my left cheek. I was also bummed when I went to check out the snow last night and the snow flakes bothered my face! ACK!
Yes, I need to embrace this TN, and make it a positive expieriace where I can learn from and hopefully teach others about this.
Start painting and doing projects that are calming and creative. Right now, I’m in a rut, cabin fever and so used to being out of work, I’m nervous about getting back into real life, assuming the MVD works!
Thank you so much for your advice.