Anger

[LyndaS]

I so concur, Stef & Bonnie. All of us have to rearrange our lives to fit TN when before we even knew about this problem, we arranged our life according to us. I guess I refuse to do my life according to TN, but choose to do this according to HIM. He is my LORD Jesus and He is not surprised at this at all. Most people get this or some other disease later in life, and sometimes they pull the fatal card. We, however, don't have a fatal diagnosis, but I will tell you for the years before acceptance, I felt dead inside—it felt like it was fatal to some parts of my life! My dreams died. My zest died. TN and the meds robbed me of my best self, and my best work, and my best ability to love my family and friends WELL. There is a good deal to be angry about here. I mean super angry. The prime of our lives, are you kidding me?

Now I try thinking in a different way. If God is really in control, and He really adores me, then the plan He has for me is a good plan, worthy of trust. And, since He is fully confident in my ability to walk through this as a winner—against the odds of TN and NOT having a happy life—then I will do well with His trust in me. This is a big one. This means that we will probably do half as much as we had planned before TN. So, where is the joy in doing only half of what we planned? I'm finding it in the solace of having the time to think through projects and duties for a good long time (on the couch on my heating pad) and then implementing a job the next day that is something in which I can really be proud. I split the work into a pie shape and do one or two pieces a day. By the end of the week, the pie is sometimes completed, sometimes not. But I am my best friend now through this, so instead of getting down on myself for a job that cannot be done by a person with TN, I am a cheerleader for myself for accomplishing SOMETHING — and I am more proud of myself and more in love with Jesus for His help in causing me to think for a good long time BEFORE the thing is executed. It has actually been a better way to do my work as my mind is always on the go (kind of ADD), and with dyslexia, I see things backwards when I read or approach a problem. But the good thing about working from the end to the beginning, is that I do a much more thorough job (it was something I had on my list to grow into anyway). Now TN has forced me to grow!

It is still hard though. Anger is part of the loss of our old self. If we were going from a caterpillar to a butterfly, then we would all be jumping for joy once our wings were developed. But in the dying stage it goes through, there is no joy. It is cold, dark and lonely. No one knows but us and God all of the things we are dying to. He knows and holds our dreams as a precious treasure. If we take God out of this picture, we can still see what He has built in humans everywhere…a tenacity that will not quit and a perseverance that causes us to master problems…even though it will take a good amount of time.

Bonnie, Stef, all of my friends here on LwTN, I wish you the best life has to offer…right now in this moment—with TN acting up and the meds holding us hostage. I hope you can find a little tiny smile (that doesn't cause pain :-) in knowing that we all will make the best of the lemons on our table. I'm so glad to have friends here who KNOW what it's like to have TN.

Sincerely,

LyndaS

Stef said:

Hi, Bonnie.

After being diagnosed for three years now, and hitting denial stage, I'm only now hitting the "anger" stage.

I haven't looked at your profile, so I don't know if you're type I, or II. Being Type II means that MVD, and procedures, are probably useless. Once I realized this, I'm angry. Why me? What now? I'm too young. What about my family? Why?

I wish I had advice, and I hope that we both come to where Jackie is, sooner or later. I guess it's grieving your former, well self. I guess it's normal. But, I empathize. This is hard to accept, especially for "go getter" with a "lust for life".

One thing that helps me is finding peace in the small things. When I focus on something small, a small accomplishment, or task, I find my day goes by faster, and I'm not as angry.

Best wishes to you,

Stef

[Bullitbaby]

Thank you for this encouragement, I agree wholeheartedly

LyndaS said:

I so concur, Stef & Bonnie. All of us have to rearrange our lives to fit TN when before we even knew about this problem, we arranged our life according to us. I guess I refuse to do my life according to TN, but choose to do this according to HIM. He is my LORD Jesus and He is not surprised at this at all. Most people get this or some other disease later in life, and sometimes they pull the fatal card. We, however, don't have a fatal diagnosis, but I will tell you for the years before acceptance, I felt dead inside—it felt like it was fatal to some parts of my life! My dreams died. My zest died. TN and the meds robbed me of my best self, and my best work, and my best ability to love my family and friends WELL. There is a good deal to be angry about here. I mean super angry. The prime of our lives, are you kidding me?

Now I try thinking in a different way. If God is really in control, and He really adores me, then the plan He has for me is a good plan, worthy of trust. And, since He is fully confident in my ability to walk through this as a winner—against the odds of TN and NOT having a happy life—then I will do well with His trust in me. This is a big one. This means that we will probably do half as much as we had planned before TN. So, where is the joy in doing only half of what we planned? I'm finding it in the solace of having the time to think through projects and duties for a good long time (on the couch on my heating pad) and then implementing a job the next day that is something in which I can really be proud. I split the work into a pie shape and do one or two pieces a day. By the end of the week, the pie is sometimes completed, sometimes not. But I am my best friend now through this, so instead of getting down on myself for a job that cannot be done by a person with TN, I am a cheerleader for myself for accomplishing SOMETHING — and I am more proud of myself and more in love with Jesus for His help in causing me to think for a good long time BEFORE the thing is executed. It has actually been a better way to do my work as my mind is always on the go (kind of ADD), and with dyslexia, I see things backwards when I read or approach a problem. But the good thing about working from the end to the beginning, is that I do a much more thorough job (it was something I had on my list to grow into anyway). Now TN has forced me to grow!

It is still hard though. Anger is part of the loss of our old self. If we were going from a caterpillar to a butterfly, then we would all be jumping for joy once our wings were developed. But in the dying stage it goes through, there is no joy. It is cold, dark and lonely. No one knows but us and God all of the things we are dying to. He knows and holds our dreams as a precious treasure. If we take God out of this picture, we can still see what He has built in humans everywhere…a tenacity that will not quit and a perseverance that causes us to master problems…even though it will take a good amount of time.

Bonnie, Stef, all of my friends here on LwTN, I wish you the best life has to offer…right now in this moment—with TN acting up and the meds holding us hostage. I hope you can find a little tiny smile (that doesn't cause pain :-) in knowing that we all will make the best of the lemons on our table. I'm so glad to have friends here who KNOW what it's like to have TN.

Sincerely,

LyndaS

Stef said:

Hi, Bonnie.

After being diagnosed for three years now, and hitting denial stage, I'm only now hitting the "anger" stage.

I haven't looked at your profile, so I don't know if you're type I, or II. Being Type II means that MVD, and procedures, are probably useless. Once I realized this, I'm angry. Why me? What now? I'm too young. What about my family? Why?

I wish I had advice, and I hope that we both come to where Jackie is, sooner or later. I guess it's grieving your former, well self. I guess it's normal. But, I empathize. This is hard to accept, especially for "go getter" with a "lust for life".

One thing that helps me is finding peace in the small things. When I focus on something small, a small accomplishment, or task, I find my day goes by faster, and I'm not as angry.

Best wishes to you,

Stef

[Min]

To Lynda S. I know one thing is for sure. This ATN and the meds has forced me to slow down. I cannot work the way I used to . I work less than 20 hours a week and only do housework as needed. In other words when my pain is under control. So there is something right there in part of what you were saying. I think people in this world today are moving waaaay to fast and under tooooooooooo much stresss. This has forced me to slow down. Not the way I would have wanted.... but none the less it has. Gives me time to think a lot. I feel there is much I should be doing with my life. I just have not figured out what that is yet.

[LyndaS]

Min :-)

Your words here are a BIG uplifting help in time of need. You can say in a few words what takes me paragraphs to say…please teach me! I am glad to have slowed down for the reasons listed above, and if it was not TN that would have slowed me down, I may have been in a head on collision trying to do and be everything to all people. I did not learn these boundaries growing up, but have with TN. So, I teach them to my kids, who, like me, overbook and over-do. I'm glad I can teach them something! ha! Blessings and many thanks to you, my friend!

Min C said:

To Lynda S. I know one thing is for sure. This ATN and the meds has forced me to slow down. I cannot work the way I used to . I work less than 20 hours a week and only do housework as needed. In other words when my pain is under control. So there is something right there in part of what you were saying. I think people in this world today are moving waaaay to fast and under tooooooooooo much stresss. This has forced me to slow down. Not the way I would have wanted.... but none the less it has. Gives me time to think a lot. I feel there is much I should be doing with my life. I just have not figured out what that is yet.

[Min]

Lynda, maybe this is the purpose for TN. To slow everybody down. GOD does work is mysterious ways....

???????? Makes ya think. Thanks for the compliment. Backatcha.

[LyndaS]

You are so cute!

Min C said:

Lynda, maybe this is the purpose for TN. To slow everybody down. GOD does work is mysterious ways....

???????? Makes ya think. Thanks for the compliment. Backatcha.

[LyndaS]

LoriAnne — It was the first 2 years that this was the hardest for me. I often wonder if I had gotten an MVD during the beginning of this, would I have been okay afterward? The GK certainly was not a good choice, in heinsight. But while the radiation calmed the nerve to a little flutter, it was the best thing since sliced bread. I tried to hold back my tears and be strong for my little family. My youngest were two and three when it happened. So we had so many goofy, fun times together I wonder if I would have made it w/o those little goobers :-) But to the point about anger and crying. After a while I began to go to a quite place alone and journal or pace the floor while worship music played. This was a way for me to connect with my Maker and lay this burden down at His feet. This TN is a robber. It knows no bounds and is no respecter of persons. All classes of people are susceptible to this monster and even all the money in the world cannot lift you up and out of it. The guarantees they give on different procedures have to weighed with the amount of medication side effects you're willing to live with, or simply can or cannot live with. For those of us with a high functioning job, meds are out of the question. So where does this leave us? In tears pretty much since we do not have definite answers. One thing that helped me greatly in the first 5 years was 800 mg of Advil every 8 hours. Along with a low dose of the anti-seizure med or migraine med, the TN nerve was taken down a notch or two and I was able to smile. The smile test was the one that I relied on the most. If I was not smiling, I knew (and my family knew) the pain was high. Then when the pain was high, I went to be alone to cry and journal. Sometimes anger was the beginning of the journaling, but soon it was disclosed that pain lie beneath. It is a very hard, hard road, LoriAnne. But if taken one day at a time, one slice at a time, taking notes in your pain diary as you go, you'll find your way to a road that is easier…in this age, they may even find a cure for us…or a way to bring the pain down to a 2 or 3 on the pain scale, which is a livable pain in my eyes. many prayers for you, sweetheart :-) Keep posting to let us know how you are doing, or msg me privately :-)

LoriAnne said:

Bonnie I also have been recently diagnosed 6 months ago and some days I am angry, other days I cry..it is just so frustrating , Tegretol makes me spacey and pain meds make me useless, I cannot take my meds and go to work(I work as an RN in a hospital). this is the main reason I have sought out this site for support , I know I cannot continue to be angry everyday but it is hard , bless you everyone is here to help..sometimes I try reading but occasionally it just helps to vent ..this disorder is so unfair and debilitating and it leaves a person feeling like "why me?" Yoga has helped me alot for the anger issues but the frustration and pain persist..I try to get through it day by day sometimes minute by minute , find something you enjoy and try to channel that anger the very best you can ..blessings to you

[BonnieC]

LoriAnne: Thank you, I have had the same problem with my med as well, I take Zanaflex 8 mg which makes me so sleepy and spacey that I would fall asleep driving to work. I now take it after I get to work. My anger is a huge problem for me as I do not like to be angry, it makes me feel bad inside. So either I share it here or keep it to myself as much of my family and significant other do not understand this horrible pain. Just brushing my teeth or hair brings on the spasms. Today is one of those days...I'm having spasms really bad which just makes me upset. I am in denial, thinking that maybe, just maybe this will go away. LoriAnne, keep up the good work on the yoga especially if it helps you. May God bless you all...

LoriAnne said:

Bonnie I also have been recently diagnosed 6 months ago and some days I am angry, other days I cry..it is just so frustrating , Tegretol makes me spacey and pain meds make me useless, I cannot take my meds and go to work(I work as an RN in a hospital). this is the main reason I have sought out this site for support , I know I cannot continue to be angry everyday but it is hard , bless you everyone is here to help..sometimes I try reading but occasionally it just helps to vent ..this disorder is so unfair and debilitating and it leaves a person feeling like "why me?" Yoga has helped me alot for the anger issues but the frustration and pain persist..I try to get through it day by day sometimes minute by minute , find something you enjoy and try to channel that anger the very best you can ..blessings to you

[JessicaG]

Hey Bonnie — you are totally not alone! One thing that made a HUGE difference in my life was yoga/pilates. I remember the first mat yoga class I went to, the teacher told us to set an intention for the class ... I lost it. I was so mad. I had been feeling like my body was unsafe and it had betrayed me!! Yoga and pilates has helped me see that my body is beautiful and strong. I feel much less betrayed and angry. I feel more whole. I also journal and I feel like that helps me put down my anger down on a page and I can release it from my mind. ALSO, I finally went on an anti depressant and that helped a lot. But I think you really just have to let your body go through the emotions of it all – living in chronic pain sucks. Its just that simple. I totally suggest trying to find something else that your body can do that is positive and you might feel less angry. It's really helped me to see myself in a different light. XO

[BonnieC]

Thank you JessicaG. Many years ago, I did yoga every morning. I stopped because the yoga TV show had ended and my Doctor had some concerns about my bad back. I have long since wanted to start up again. I will have to make time to do this, I'm sure it would help with my mental picture (which is not good right now).

[Min]

Bless you Lynda. Your words are uplifting. :)

[BonnieC]

Thank you Min and Lynda S - I just found this post today. And yes, I too was living life in the fast lane - trying to be the glue that kept my family together. Always running, trying to get everything done. I am the bread winner of the my family. Now I have many questions and concerns. How do I deal with this pain? What new pain will happen next? What about my job? Will I be able to work? I can barely keep focused on my work through the burning pain in my face and the spasms in my tongue. I say alot of prayers - I know I need help. I lay all this in HIS hands. I will keep reading to be informed and learn as much as I can. I do not know what this pain is, nor have a I found a doctor who does though I am hopeful that I will. I have been to 4 doctors now, each gave a referral. Thank you all for your support, it means alot to me.

[anon25930859]

Bonnie, a couple of thoughts on your original question and your symptoms. Your symptoms align rather well with Atypical TN or trigeminal neuropathy, attending injury to a facial nerve during the original dental visit. If you haven't done so already, you likely need to be seen by a neurologist and put on a short course of one of the anti-seizure meds like Tegretol or Trileptal, to evaluate your response. If you get rapid improvement within a few days to a month, then the proper diagnosis is likely to be TN. If the response is not a reduction in pain, then you might need to be tried on one of the tricyclic antidepressant meds like Amitriptyline or Nortriptyline (there are about 10 others in the same class).

Regards and best,

Red

[BonnieC]

Dear Red: Thank you for your reply. It is my belief that a lingual nerve was also damaged during the dental visit. I am researching to find a neurologist in my area to go to ASAP.

[Nir_Morita]

i know the anger and hate.

the funny thing - i dont REALLY hate people.. it's the situation of helplessness and un dignosed.. and "how can it be such GREAT SEVERE PAIN." and one go out from the doctors and nothing ... like your case is nothing ... they can not suggest nothing. "your tests are all fine" . - 'but it is NOT fine" it's pain that peson wants to kill himself from.

i do HATE myself - i do sound crazy. that's what this thing has turned me into.

by the way ... not connected - some meds can really cause that.

i was on two meds.. that in the initial period of taking them - i was throwing things.. on walls and almost on people... like you don't know what you are doing. those side effects of those meds can really be awared of.