Friday, June 28, 2019

Acknowledgement

As I have mentioned before, I have trigeminal neuralgia (TN). TN is characterized by searing mouth pain usually caused from eroding of the myelin sheath around the trigeminal nerve. The pain has been described as the worst pain known to man or as the suicide disease because it has caused some to end their life rather than deal with it. I don't know if I would describe it that way, but you get the idea. It really hurts. No pain killers touch it whether they be ibuprofen or narcotics. However, in many cases it can be controlled by anti-seizure medications and that is true in my case.

But here's the problem--the side effects of the medicine. For me, even at low doses, the meds make me dizzy and sleepy making it hard to function effectively. So I am in a constant struggle to balance the pain control with the side effects of the medicine. During a recent trip to the doctor, he said that after years of trying with meds, maybe it's time to consider something else. There are several procedures that are used to treat TN including brain surgery. However, most of them only have a success rate of 50-60% and need to repeated every couple of years with sometimes permanent side effects. What to do? About a year ago, I was ready for the brain surgery because it has the highest success rate and the longest lasting results. But then I had a remission. Remission is a hallmark of the condition. It comes and goes for no apparent reason. I've never had long remissions like some have, but I do have them. And during remission, when I have no pain and am taking lower doses of the  meds, I think I am willing to put up with whatever side effects the meds have and take no risks.

But now I am having a flare up and I am once again considering the options available to me. While I'm trying to figure out if I want to change the course of treatment, I am trying to do positive self talk to lift my mood. When you're in pain, it's pretty easy to go to negative, self-pity places.

Which brings me to the point of this post. There are two basic kinds of self talk I do--that things could be worse or things are good in spite of the problem. They each work differently for me.

When I play the things could be worse game, it doesn't seem to help me a lot. For example, I say, "I could have a seizure disorder like my friend who requires high doses of medicine. I could have  mouth cancer like my neighbor with no hope to get better."

While I intellectually am truly thankful that I don't have more serious problems such as these, I still feel pretty negative about mine. I think that is because when I play the "things could be worse game," I'm not acknowledging my own difficulty. My pain is not the worst problem in the world, but my pain is a real and it's a problem for me.

So what I have learned, is that I need to acknowledge my problem and think about the positive things around it. For example, I say my mouth really hurts but I have about three hours in the middle of the day, when I seem to find a reasonable balance between the meds and pain. My mouth really hurts but I am able to go outside and work in the yard which seems to wake me up a little and helps forget  about my pain. My mouth really hurts, but I have an understanding, knowledgeable doctor who I work well with to treat it. My mouth really hurts, but it is not a threat to my life. When I think of things in those contexts, I do a much better job of keeping myself out of my negative world.

This may be another version of positive reinforcement works better than negative reinforcement. A concept that I have known about for a very long time, but just this morning in the shower, figured out how it applies to me in this situation. Another reason why my showers are so long sometimes. That is where I do some of my best thinking. :)

What works best for you when you are trying to pull yourself out of a depressed mood?*

*This is not for clinical, long lasting depression. You can't talk yourself out of that. Clinical depression needs the help of a professional.


18 comments:

  1. "It could be worse" thinking is denying your own pain. Yes, we could have had arms and legs amputated, but that does not help the pain we have. I have severe and continual lower back pain from several injuries and conditions. But, my face does not hurt, thankfully. I need surgery, but will suffer as long as I can to avoid surgery. Good luck.

    ReplyDelete
    Replies
    1. Thanks.

      I'm sorry about your back pain. I have a friend who is in a similar situation and is on a very high dose of pain medicine. However, she's not ready for surgery yet either. The odds of success are not high enough for her. We'll all do what we think what's right for our own body. In the meantime, I hoping there is some way you can cope.

      Delete
  2. I am so sorry for you. One of my old childhood neighbors has this condition and opted to have surgery years ago. She seems to have had much success with hers. I see her off and on when I am at Mom's and her only conditions right now seem to be age related things. (She and Mom are about the same age)
    I know decisions are hard and the side effects are real.

    ReplyDelete
    Replies
    1. While it's certainly not not heard of, TN is not a common problem so I'm always interested when I hear about someone with the condition. I'm glad your neighbor had success with her operation. What a relief for her. Basically, I'm scared of the surgery. There's about an 80% success rate with it which I'm not sure is high enough for me to take the risk. Also, they're not sure how long the effects will last. The one person in my neurologist office who had it, it lasted about 20 years. Now in her 80's she has started again with the meds.

      I'm going to start by looking into some other things.

      Delete
  3. As a dear friend said, "just because i have cancer doesn't mean it doesn't hurt when you stub your toe". yes it could be worse but it still affects you daily. Chronic pain can wear you out. I'm sorry you have to struggle with this and hope you find an answer.
    Susan

    ReplyDelete
    Replies
    1. Thanks, Susan. I will find an answer even if it is to keep things status quo. The next step is make more appointments to understand the details of the next things I'm considering. I shouldn't base my decisions on just what I read on the internet. :)

      Delete
  4. I am so sorry that you are experiencing such pain and the medications that help with the pain are having such terrible side effects. (((HUGS))) Can the doctor prescribe some additional medications to help with the side effects?

    Acknowledging the pain is good; you are validating what you are feeling. Affirming what you can do is very important, too, I think, as it keeps one from sliding into self-pity. My mother used to always tell me, "Don't feel sorry for yourself". When I start to feel down about things, I often say a prayer, asking for help for myself to get through whatever it is that is getting me down, and then, focus on my blessings. Doing needlework of some kind often helps, too, or gardening. (((HUGS)))

    ReplyDelete
    Replies
    1. I've asked about things to help with the side effects but they may aggravate my migraines, so my doctor doesn't want to use them. I think if I concentrate on other things, I may be able to live with the side effects better. You have set a good example for me.

      Delete
  5. There is a man in our church with TN--actually, after you mentioned it recently, it reminded me to check in with him and see how he is doing. He is on the anti-seizure meds and currently they are working well for him. I think I would share your concerns about surgery ... but asking for information from your physician is just that--it doesn't mean you have to act on it.

    Just out of curiosity, have you considered going to a pain clinic?

    I also have never found that thinking about other's misfortunes helps me feel better when I'm struggling with something. Your technique seems to be healthier--acknowledging the pain and then looking for the positives or doing an activity that you enjoy.

    I can't imagine the mental struggle it must be to live with chronic pain--for all you who are doing that, my hat is off to you.

    ReplyDelete
    Replies
    1. No one has ever suggested a pain clinic I assumed because this is atypical pain and doesn't respond to any of the standard treatments. I'll have to look into that after I explore some other options I'm considering. I can only concentrate effectively on one thing at a time. Glad that your friend is doing well. Many do.

      Delete
  6. I'm sorry to read this. Pain can wear a person out mentally and physically as I've discovered. I hope you have the help of a knowledgeable mental health professional and that you find something that helps more than harms.

    ReplyDelete
    Replies
    1. Thanks, e. I know that, unfortunately, you understand about chronic health problems all too well. This will all work out one way or another.

      Delete
  7. I’m sorry you go through this.

    Do you have help at home?

    ReplyDelete
    Replies
    1. Thanks, Akasha. I am lucky that I have a very supportive husband and son who live here.

      Delete
  8. I'm sorry to hear you have TN. That's the worst pain in the world to bear. You must be strong to endure that and be so positive in your posts I would never have thought. Sending you love from Oregon!

    ReplyDelete
    Replies
    1. Thanks, Strayer. I'm not a positive person by nature. It is something I've worked on for a while now including here on my blog. I'm glad that it is coming across. But sometimes, I have to be real and talk about things that aren't so good. However, a lot of the things that cause me grief involve other people, so I have to be very careful about what I share. So while I share negative things sometimes, they are limited.

      Delete
  9. I'm sorry to hear this. WIth all my illnesses, I often tell my husband jokingly (but true), God wants me on this earth for something because pretty much every body system, skeletal, urinary, etc it doesn't work correctly I just haven't figured what God's plan for me. I also think the same, things you do. It could be worse. I also remember all those who I know are muchworse off than me and some special people who have suffered from cancer or other debilitating disease before God called them. II have had many talks with God, angrily.

    But I hope this little quote from a priest when I was really low helps you somewhat. He told me our struggles on earth is a journey to heaven when God calls us. My husband often questions why do we have to struggle on earth. I don't have the answer except you just have to have Faith. I will be praying for you to get some comfort.

    ReplyDelete
    Replies
    1. Thank you for your encouraging words, Cajun. I know that you know as well as anyone else about struggles with your body. You have been very courageous and and patient as you are working through them.

      Delete

What do you think?