Depression After TN Diagnosis

General General TN & GPN (Old Site)
1

Hello,

I am writing to discuss what TN patients like myself can do to minimize feelings of depression after diagnosis is confirmed for TN. I cried like a baby for two days that triggered a bout of terrible pain that made me afraid to cry. So I started writing. That's what I did for a living before this happened and so it comes naturally to me. I wrote out all of my feelings: Anger, Fear, Grief, Disbelief. Why did this happen to me? This went on and on for a few months. And then I hit bottom. No more tears left. I felt numb.

I think I went through a period of tremendous grief. For the loss of my active and productive life before TN. I stopped working because of pain, anxiety and side effects of multiple medications.One morning I sat up in bed thinking, "what now?"

And so I got on with the business of living with TN. I found Ben's Friends and talking with everyone on the Forum has been so helpful. My emotional healing is just beginning. I feel hopeful now for the first time since my diagnosis.

WHAT CAN WE DO TO EASE DEPRESSION after diagnosis? I have found the following self-help measures a life saver for me and I hope for others as well.

JOURNAL: write out your feelings. Fears, hopes, angry feelings...all of it. It may seem silly, but it saved my life! It helped me to see things in a different light and I began to realize that I still possessed so many blessings in my life. I decided to focus on those blessings. Now I have more good days than bad ones.

GET OUT OF THE HOUSE: Even when I didn't want to, I made myself go out into the world, even if it was just to pick up my medicines at the drugstore.Trying to keep some sort of social interaction going helped me to feel more normal and I sometimes could forget about TN at least for a short time.

GET THE RIGHT MEDICINE FOR YOU: Find a neurologist that will work with you to make sure you get the right medicines at the right dosages. Of course this takes time and you will have to have patience, it is a process.

LAUGH AGAIN: No matter how bad things are, when something is really funny, most people can laugh. My mother always believed that laughter is the "best medicine." And it works for me. I Google You Tube Stand Up Comedy and put the volume on low as I lay down to go to sleep for the night. I fall asleep giggling to the comedy routines of Phyllis Diller, Don Rickels, Gabriel Iglesias, Robin Williams, etc. There is some "funny someone" out there for everyone!

What do you do to ease your depression? I would love to talk to you!

Blessings,

Adele :)

2

Good post, Adele. Thanks for sharing it!

3

Thanks DancerMom!

I feel that Depression After TN Diagnosis is something that most of us go through and it can become overwhelming for some. There is strength in numbers and when people reach out to help one another, magic sometimes happens.

Adele :)

dancermom said:

Good post, Adele. Thanks for sharing it!

4

Hi Adele,

Thank you for starting this discussion. For me, this post brought tears to my eyes. (Like you, I've learned not to cry because an attack will follow). Depression after TN diagnosis - I could write a novel, but I'll try to keep this somewhat brief.

Your suggestion of a keeping a journal - yes! I started mine last year when I felt like I had fallen into an abyss. I called it my "Journal of Pain". Physical pain, emotional pain, spiritual pain .. whatever pain I needed to write about on any given day. The journal has been immensely helpful to me. I've always enjoyed writing, so it feels like a natural extension of myself - my private outlet for dealing with TN. I decided to start the journal because my family and friends did not, could not understand and were getting fed up with the "new" person I'd become. I needed to vent, or go insane, so the journal has become my verbal dumping ground.

Laughing is important too. I've learned to laugh again, thankfully. I think my sense of humor finally returned a few months ago :)

I began thinking for myself again. For months, well meaning family and friends were bombarding me with "helpful" advice. Tips such as - be thankful, there's worse diseases out there. Or another favorite - try not to dwell on it, then the pain will go away. I think I'd lost all sense of self for a while - I was drifting in a surreal world everyday, mourning the person I'd been who had vanished and hating the miserable person I'd become. The "old" me was someone who was busy all the time, happy, spontaneous, adventurous and social. When I got diagnosed with atypical TN, I believed I was destined to live out a life sentence in a prison and the prison was my body. I also felt such a huge sense of profound loss, I just didn't want to be here anymore. I hated what my body had done to me, it had turned against me, betrayed me! Then I wondered if I'd deserved this ... I reviewed my life over and over looking for clues. Maybe I was being punished for something? Basically I felt irrational and completely nuts for a while. Grieving is a process of course. Next came the anger. Eventually I reached a place where I decided it was time to make my own rules on how to live with this, and stop listening to the majority i.e.. those that cannot understand.

Finding this group Living with TN was a turning point for me. I still have occasional days and nights when I go through feelings of panic and isolation when the pain escalates for no apparent reason. The unpredictability of this condition creates fear, at least it does for me. I have found it extremely comforting to read what others have to say here - their thoughts, questions, worries, fears. So when I need calming down, I come here.

Keeping busy. Busy for me for years was working full time, evenings out, concerts, day trips - a normal life. Busy has been redefined. I go out most days even if it's just to the grocery store. I pick up my grandson from school 3 days a week. I try not to engage too much in conversations because talking can be a problem on some days but at least I'm not housebound. I love to read, so I have books piled up all over the house. A new book is always something I look forward to. I'd like to find a part time job one day .. but I've had to accept that maybe that won't happen. I'm not reliable these days. My husband, thankfully, has become very understanding and supportive about this.

Prayer. I've never been particularly religious, but I find myself praying everyday. Sometimes a lot. I'm vague about it, sometimes I'll ask God for strength, or my grandmother for help, or if there's an angel around that's got nothing better to do .. but I hold these daily conversations and believe in my heart someone is listening. I just can't do this alone, it's too exhausting.

Anyway, I've realized that this isn't going to destroy me. For a while I wasn't too sure. I'm not the same, but I'm still here. I am always genuinely thankful for the good days now. I lead a simple life these days and there are blessings everyday. On the bad days, I have to believe a good day will come around again, and I try not to lose hope anymore.

Thanks for listening :)

5

Hi Obsidian,

Thank you for your heartfelt reply. Your journey has been so very similar to my own. I had tears in my eyes reading your account. I read, re-read and read your account again. This is such a difficult diagnosis to accept. It seems that we are being forced to learn new life skills. New coping skills.

I notice that when I look backward, to the life I had and the person I was before TN, I immediately become agitated, anxious and grief stricken... all I can see is loss. And when I look to what the future might hold, the same reaction occurs; all I can see is uncertainty. But when I keep my mind in "the now" I am able to have better days. I believe this practice is called "mindfulness." For me, this is a totally new life skill, so I am not an expert by any stretch. It's a hard thing, but I know I must not look backward or forward. The past is gone, the future has not happened, we only have TODAY. Right now. Thankfully, I don't hurt right now, in fact, today was a great day...only a few painful moments caught my attention. I am learning to live again. I am coming to acceptance. But I will fight with all of my intellect to figure my way out of pain for good.

TN has taught me that I must slow down, develop patience and trust in myself and a higher power. I too, find myself turning to God. I know I cannot bear the brunt of this diagnosis on my own. I am hopeful I'll find a way out of this pain one day soon and I remind myself daily how fortunate I am, even though I have TN right now.

I am an avid reader as well. It's what has helped me through the toughest days. What types of books do you read? Right now, I am reading and taking notes on The New Orthomolecular Nutrition, Facing Facial Pain and Striking Back.... reading anything I can get my hands on with regard to health, nutrition and TN. I used to read medical thrillers....ironic I should succumb to a rare disorder. But I think I am figuring out the "why" in my case....very low B12, (internist says I have pernicious anemia) a difficult lower right, second molar extraction and big problems with my neck, all many months to more than one year before TN began. I think it all adds up to the "perfect storm" because all of those problems can cause or trigger TN.

We should start a Ben's Friends Book Club, What do you think? I am serious. I love reading and I am sure many members do as well. What should we read first???

Adele :)

Obsidian said:

Hi Adele,

Thank you for starting this discussion. For me, this post brought tears to my eyes. (Like you, I've learned not to cry because an attack will follow). Depression after TN diagnosis - I could write a novel, but I'll try to keep this somewhat brief.

Your suggestion of a keeping a journal - yes! I started mine last year when I felt like I had fallen into an abyss. I called it my "Journal of Pain". Physical pain, emotional pain, spiritual pain .. whatever pain I needed to write about on any given day. The journal has been immensely helpful to me. I've always enjoyed writing, so it feels like a natural extension of myself - my private outlet for dealing with TN. I decided to start the journal because my family and friends did not, could not understand and were getting fed up with the "new" person I'd become. I needed to vent, or go insane, so the journal has become my verbal dumping ground.

Laughing is important too. I've learned to laugh again, thankfully. I think my sense of humor finally returned a few months ago :)

I began thinking for myself again. For months, well meaning family and friends were bombarding me with "helpful" advice. Tips such as - be thankful, there's worse diseases out there. Or another favorite - try not to dwell on it, then the pain will go away. I think I'd lost all sense of self for a while - I was drifting in a surreal world everyday, mourning the person I'd been who had vanished and hating the miserable person I'd become. The "old" me was someone who was busy all the time, happy, spontaneous, adventurous and social. When I got diagnosed with atypical TN, I believed I was destined to live out a life sentence in a prison and the prison was my body. I also felt such a huge sense of profound loss, I just didn't want to be here anymore. I hated what my body had done to me, it had turned against me, betrayed me! Then I wondered if I'd deserved this ... I reviewed my life over and over looking for clues. Maybe I was being punished for something? Basically I felt irrational and completely nuts for a while. Grieving is a process of course. Next came the anger. Eventually I reached a place where I decided it was time to make my own rules on how to live with this, and stop listening to the majority i.e.. those that cannot understand.

Finding this group Living with TN was a turning point for me. I still have occasional days and nights when I go through feelings of panic and isolation when the pain escalates for no apparent reason. The unpredictability of this condition creates fear, at least it does for me. I have found it extremely comforting to read what others have to say here - their thoughts, questions, worries, fears. So when I need calming down, I come here.

Keeping busy. Busy for me for years was working full time, evenings out, concerts, day trips - a normal life. Busy has been redefined. I go out most days even if it's just to the grocery store. I pick up my grandson from school 3 days a week. I try not to engage too much in conversations because talking can be a problem on some days but at least I'm not housebound. I love to read, so I have books piled up all over the house. A new book is always something I look forward to. I'd like to find a part time job one day .. but I've had to accept that maybe that won't happen. I'm not reliable these days. My husband, thankfully, has become very understanding and supportive about this.

Prayer. I've never been particularly religious, but I find myself praying everyday. Sometimes a lot. I'm vague about it, sometimes I'll ask God for strength, or my grandmother for help, or if there's an angel around that's got nothing better to do .. but I hold these daily conversations and believe in my heart someone is listening. I just can't do this alone, it's too exhausting.

Anyway, I've realized that this isn't going to destroy me. For a while I wasn't too sure. I'm not the same, but I'm still here. I am always genuinely thankful for the good days now. I lead a simple life these days and there are blessings everyday. On the bad days, I have to believe a good day will come around again, and I try not to lose hope anymore.

Thanks for listening :)

6

Sorry for you… All of us went throug same grief why me why not a normal disease? … But no choice we must try do our best only to live normal !

7

It's so interesting that you posted this discussion, Adele. I've been really angry lately about this darned disorder, and it got me to thinking about TN and the stages of grief. It really is a grieving process, isn't it? I seem to have passed through the stage of denial ("We'll call it remission, but I never actually had TN"), and I'm fully ensconced in the anger phase. I am without health insurance, so I can't be cared for by a neurologist. I need a full time job in order to get insurance. I am afraid to go back to work full time because I'm useless a couple of days a week. And I can't afford Obamacare. So yeah, I'm angry.

That said, I'm profoundly grateful for everyone on this website. I refer to it sometimes multiple times a day. I've learned so much from Red and everyone else here.

But I wonder when the next stage of grief will hit?

Beth

8

Hi Beth,

I get angry all the time lately as well, but the rise in my blood pressure causes even more pain if you can believe it, so I have to curtail it. My emotions are all over the board, and it's hard to know from one day to another (or one hour to another some days) how I will feel physically and emotionally. I find myself "pushing myself" to do the simple things I once took for granted, like getting out to do the grocery shopping. I am extremely angered and frustrated that I cannot drive due to the medications right now, so my husband and daughter take me out several times a week and we get it all done together. (Thank God for my family!) I try to remember that there are many diseases/disorders that cause similar emotional turmoil. The main thing is to try and focus your attention on the good stuff (between bouts of pain when you can think straight)

I am lucky enough to have health insurance through my husband's work. I cannot work any longer because of TN and had to close the business I had built from the ground up for the last 5 years of my life... an example of another emotionally devastating hurdle I had to jump, but jump it I did. I am learning not to look back because it causes grief and sadness...all I can see is loss. And when I look to the future, all I see is uncertainty. So, I try to live day by day, a life skill that is totally new to me. I think it's called " Mindfulness" or living in the moment.

I hope you can find your way through the hurdles you will have to jump to get the care you need. I hope you can find someone knowledgeable in the area of health insurance to help you through it all. I hope you find the help you need.

I love Ben's Friends as well and I find myself talking to other members for advice several x's daily!

Sincerely,

Adele :)



Elivandersys said:

It's so interesting that you posted this discussion, Adele. I've been really angry lately about this darned disorder, and it got me to thinking about TN and the stages of grief. It really is a grieving process, isn't it? I seem to have passed through the stage of denial ("We'll call it remission, but I never actually had TN"), and I'm fully ensconced in the anger phase. I am without health insurance, so I can't be cared for by a neurologist. I need a full time job in order to get insurance. I am afraid to go back to work full time because I'm useless a couple of days a week. And I can't afford Obamacare. So yeah, I'm angry.

That said, I'm profoundly grateful for everyone on this website. I refer to it sometimes multiple times a day. I've learned so much from Red and everyone else here.

But I wonder when the next stage of grief will hit?

Beth

9

Adele,

Thank you for replying. I think it was important for me to hear about mindfulness. I get caught up in the what-ifs of the future, and it gets me into trouble. You're absolutely right about needing to focus on today. If I do that, I probably will more easily be able to deal with what I have to do to get through each day, rather than being overwhelmed with everything. My prevailing thought is, "How am I going to deal with all of this?!" Mindfulness, if I practice it, should help that stop.

Beth

10

Wow Adele what a great great discussion you have started and one long over due. My eyes too got teary when I read your words and Obsidians words. It seems although at times we feel so alone in this, so many of us go through the exact same questions and emotions.. On bad days I have thought to myself, what did I do to deserve this? am I a bad person? is this karma for some terrible thing I did in some past life or something? the feeling trapped in your own body...the anger... I chose the user name scared and angry gal when I first came on here because that is exactly how I felt at the time..This site has helped me so very very much. It has helped with the anger a lot. I have found for myself, the fears are harder to get rid of then the anger. I still have fear. But I too use mindfulness. Living in the Now is wonderful when you are painfree and then I have found that when I am having a lot of pain... then living in the Now is not so good, lol... so I use bible passages like, this to shall pass putting my focus on the future... Even though I have never been much of a religious person, I have turned to God in my times of great pain or anguish and He seems to help to my surprise and delight. I have found that God may not take this away from us but perhaps he can give us strength in dealing with this..The moderators on here have inspired me greatly , who are in pain themselves but choose to help others.. Plus the folks on here who had the MVD surgery and are now pain free but want to give back now because they remember how they felt. I have only been on this journey for one year now, and even as far as I have come, I still have short bouts of denial, and grief, and anger but it seems over time the bouts don't last as long. When I get depressed I think about all the folks who have it worse than me on here, or the poor young 11 year old girl that I read about having this because her mom became a member on here, then I go from depressed to thankful because atleast I lived a normal happy pain free life for 47 years while others may have not.. My cats and birds bring me joy. I have become a much more compassionate person to those who deserve compassion, much less judgemental , and much more assertive with doctors who speak nonsense or claim to know more than they really know. That is a great idea about listening to stand up comics and I think I will try that. Therapists have discovered recently how important two coping skills are, and they are mindfulness and ironically that is also a time and place for the coping mechanism of distraction as well... So , my motto is whatever works , do it :)... Thank you again for posting this wonderful and necessary discussion Adele, I feel lighter already :)

11

Hello Scared and Angry Gal,

I am so happy that the discussion post has helped you to feel lighter! I felt better immediately after writing it... for me, writing is the most powerful form of therapy for my mind. I believe that the mind and body talk to each other. "Mind" (that unseen force that animates us all) seems to influence the body to a small or sometimes great extent. Many years ago, doctors did not believe that stress could make a person sick. But science has proven otherwise. We process stress in our brain and the brain influences all systems in the body. But where do we FEEL stress or any other emotion/outside force? It seems to be in the mind first and then the body. I think that is why we feel better in mind and body when we journal and connect to one another for support. Thank goodness for this website!

I too have to keep reminding myself that many other people on this site and around the world are suffering much longer than myself. At 56, I have had this disorder for almost one year. And yes, I too have thought to myself, "Oh my, there are children suffering with this disorder!" I am thankful that I was able to live for 55 years TN free.

A past acquaintance and client of mine is a beautiful young woman now in her mid thirties, who, at 17 was hit by a train and lost her leg. She has struggled for more than half of her adult life with the daily rigors of the life of an amputee. But she overcame those obstacles. For the past 15 years, she has become an international role model in the amputee community. She went to school and learned to fit amputees for prosthetic legs and she is an athlete who mentors young amputees to overcome and do everything a "normal" person can do and then some! She is such an inspiration to me. You know, many amputees have phantom limb pain that can be debilitating at times...it's nerve pain, as is TN.

Being sick/disabled is no walk in the park no matter what disease/disorder you may be dealing with. In addition to the TN, I have struggled with grand mal seizure disorder since the age of 18...thank God it happened only sporadically, once a year or so, but especially after stressful times. Stress seemed to trigger most of my attacks back then. When I felt down about it, I reminded myself back then that some people have seizures everyday and some have them all the time. So, in the grand scheme of things, I was very lucky.

Thank you for sharing your story. You have touched my heart and I am so happy that you are coping well! We are very much alike. I have also slowed down and have become much more compassionate and much less judgmental of others. And just like you, boy do I ever advocate for myself with my doctors! Knowledge is power and the more we all learn about this disorder the better off we will be.

Peace,

Adele :)