I'm not talking about this disorder being associated with a psychosomatic disorder. I'm talking about the ordeal and the emotional side of finding out you have a life changing condition - finding out that you may have this for the rest of your life - finding out that you may be on meds for the rest of your life - finding out that you may have to alter your lifestyle to live with the side effects of the medication. The emotional side of this concerns me and prescribing yet another pill to deal with the anxiety and depression does not appeal to me. Why hasn't a single doctor recommended some sort of counseling to deal with this? Would love to know if anyone has sought counseling on their own, been advised to do so or thinks it would help? Maybe it would be a waste of money. I don't know, but just thinking about it.
That's a good question. I was already in counseling. I think that this disorder made me have to deal with issues that came up from my past. In other words I couldn't handle my past as well as this. Hence the counseling. I started with this in 05. It really started bothering me in 07 I started counseling in 09 and just finished up last week in fact. Peace, Min
D, you will find supportive counseling and therapy addressed in both the "Face Pain Info" articles and "Coping With Crisis", another sub-tab in our site menus. Supportive counseling is often useful for chronic pain patients of all types. Many find themselves dealing with issues that have a lot in common with post traumatic stress disorder. A key, of course -- which I am sure you recognize -- is not to be labled as a "head case" by some ignorant doctor who thereby messes up your medical insurance records and gets you denied treatment by medical means.
Regards and best,
Red
D all you have to do is ask ,i did been having it for the past 12 months it helps a big deal
i went for counsel last spring on my own because i felt there was no one to talk to that understood the day to day balancing of this disease and i didn't know if there were things i was missing that i could be doing for myself etc. it helped a lot. i mainly went because a relative told me it would be a good idea because it is all i talked about...., i just think this relative doesn't get how devastating of an illness this is and how much it changes how you live, hence the counselling. i didn't want disease to define who i am just learn to live the best life possible with it. counselor told me he is amazed how well i am doing with all i deal with and he also told me what to watch for like if i totally withdraw that would be a warning signal of too much depression, etc. he calmed some worries i had and encouraged me, even told me i should write a book about my life.
it was good to get an unbiased opinion and made me feel less alone. i think it is a great idea for anyone with this disease to make counselling an important tool to help you through it all.
i was diag. in 2004 and had the motor cortex stimulator implanted five yrs ago last fall. my tn is some weird form of atypical. this is such a long process to find help for each individual and to deal with everything else on top if it. so ask for everything you need. the worst you could be told is no. remember you are your own best advocate!
jule
Julie - Is the motor cortex working for you? I have been offered that, but thought it would not work. What weird kind of ATN do you have? What kind of counselor have you seen? I really don't know what kind of counselor to see. It has been suggested that a neuropsychiatrist can help, but I have trouble finding one where I am. My husband's cousin also got TN right after I did (weird coincidence) and she is totally immobilized at this point. My medication is working for now, today, but I have some good days and some really bad ones. I so appreciate any advice that you or anyone else can give me as I can tell this is really affecting me emotionally. I'm almost 60 yrs old and the thought of growing old in this kind of pain is very frightening. Most doctors tell me that I have a kind of "weird" ATN also and not much can be done other than trying to gain some control of the pain with meds.
I haven't been offered any... just prescribed prozac. So I joined here, which my Dr. thinks is a good idea.
hi all i have had this condition for about 15 yrs recently i was put on new medication as i didnt like the effects that Tegretol was having on my brain or my body dr, tried neurontin then introduced lyrica didnt work, so now im back on Tegretol while coming off one tab and introducing the other i had a slight overdose problem, blood pressure went quite high its been 2 weeks now & most of that time ive slept, walked crazy & talked the same , noone understands this illness unless you have it my Husband is great but still cannot understand the severity of the pain & ifeel very strong about counselling being provided
Hi D.
I think that counseling is an invaluable tool in helping all of us to find different and new ways to cope with TN. In addition to being able to share how you feel and to get support sometimes counselors can work with you to develop other coping strategies such as breathing exercises and creative visualization. I have benefitted from both of the above. Deep breathing for getting through pain attacks as it helps to relax me or to go to sleep if possible.
I have seen two different types of counselors: cognitive behavior therapy and also a counselor who specialized in working with people who suffer from chronic pain. I did a google search to find a therapist in my area who worked with those with chronic pain. Sometimes these counselors have dealt with and are dealing with pain themselves. I was fortunate to find one of these counselors. It made it easier to talk as she understood how I was feeling on a level that a non-pain sufferer cannot sometimes.
If you do see a counselor and you don't feel a connection with him/her you can always see somebody else. Sometimes, the first time around isn't the right fit. Give it a few sessions before you make that decision. I found somebody that fits with me and who is proactive yet empathetic. She's been my counselor for 12 plus years and I have also seen the chronic pain counselor at the same time, though counselors often want you to only see one counselor which keeps your therapy more of a constant.
I also suffer from anxiety and depression and have for most of my life. Having TN in the mix hasn't been very fun. However, I have learned many coping skills over time for anxiety/depression which have crossed over in helping with pain mgmt and coping.
I wish you the best of luck in finding a counselor who fits with you and is a place where you can be open and honest about your pain and all that comes with it. The best part about going to a counselor, for me, is that there is no judgement! Just a respect of who you are and how you can work in moving forward in life in a healthy way.
Best. Johanna
I think it's because there are so few counselors who have even the first clue how to counsel about chronic pain or illness. I do have a friend who does it on skype if you are interested, and is affordable and is really great and empathetic. He has had a very sick wife and parents and cared for them all until his parents passed. Contact me if you want info about this counselor. He is a psychologist.
Did you see my recent discussion addition on gratefulness? After reading your post, and being in a very high level of pain (it has not been this high for a very long time due to the botox injections I get every 6=8 weeks), my mind went directly to gratefulness for the people on this site. We all find our way through the maze of health challenges and some days are so much worse than others. Part of my reason for choosing gratefulness re: TN is because I have a very negative influence in my life and no matter what words I choose, they get squashed and the negative outlook gets put front and center by this person. Even to the detriment of my good health. In walking with gratefulness and acceptance (finally after 10 years!), I have a protection against this person's words about my situation. Even if he can prove there is nothing else left to do, I can be grateful for living in a time where there IS something I can do. I can choose to look to the joy of being me thus bringing down the power of his words about this problem. There are doctors like this as well that may say there is nothing left to do, but that may be partly correct. It may be that in his mind, he does not know what else to do. There may be another doc who will help you be better right where you are at in this journey. Take good care, Winnie.
(Edited by Administrator)
Winnie - one week ago I was almost where you are - told the same thing by a "referred" doctor. Add a complete sense of hopelessness to the pain, and you are devastated beyond belief. BUT, another doctor intervened, by God's grace as far as I'm concerned (and I am not a religious person). This doctor dispelled the hopelessness and changed all my medication. I have had the best week in as long as I could remember - not only because of the medicine change, but also because of the doctor's "attitude" change. Don't let anyone tell you anything in medicine is "hopeless". Every doctor is different - not all have the same knowledge, specialty, training and experience. Sometimes you may even have to go outside the box to find the best doctor for you. Everyone on this site has seen doctor after doctor after doctor. It is really hard to do this, but it is worth it.
Does your area have a local support group?
Counselor can be called PC, or LCSW - if you can get one that specializes in chronic pain that would be great
I am a social worker and have been the counselor. With TN I could not help myself - fell into depression because trileptal took everything I needed to feel whole.
Even if the counselor does not have TN experience - they do have training in grieving, sense of loss, inspiration, let us know!
This is a super question. I assume that anyone who receives such help is self-paying.