As someone who has counseled people with facial pain, I understand that it is not uncommon for someone's emotions to reach a nadir. It doesn't matter if it's my pain or the pain that belongs to someone else. So I am always concerned when I hear that someone with facial pain has emotional issues. Of course we do. What others take for granted in every day life has been taken from us, and no one seems to understand the intensity of the pain. Except the people who have it...
I wish that I could explain to the world what it is like to be unable to communicate orally with others and to not know sign language. E-mails and text messages have been some of my best friends, but not everyone has email or text-messaging. Fax machines are temperamental. Just like fax machines, sometimes we humans with facial pain can communicate orally but other times we cannot. We aren't dependable, regardless of how much we would like to be.
Pain of any type can bear on our emotions. Face pain can cause a person to have bad breath and poor dental hygiene (no brushing for days on end sometimes), robs a person of the ability to share a kiss, and going out to eat is just unthinkable. When people experience this much isolation, pain, and disability... well he or she just may get emotional.
Why some people think that the emotional issues cause the pain, I'll never know. Perhaps it's because they have never experienced disability. I've always thought that the world would be a more compassionate place if people could experience trigeminal neuralgia or other types of face pain - just for a day.
Several types of medical issues cause face pain. It could be trigeminal neuralgia, myofascial pain, neuropathic pain, or a jaw problem. These things travel along the trigeminal pathway, and they have a life of their own. We don't know when the pain will come or go. We just know that we are out of commission until it settles down.
If you get emotional because of facial pain, let me reassure you that it's normal. Take good care of yourself. If you are able to talk, you may want to see a counselor. But you may not be able to talk...
God bless you.
my name is sonja. im 41 and i was recently diagnosed with TN. i would have to agree with everything you say that this disorder greatly impacts your entire life. theres days when no amount of meds help and i cry all day long. how do you make someone understand why your crying? how do you make someone understand how life altering this is unless they live it for themselves. i never thought i could experience pain so great this.
ReplyDeleteIt is very hard to help someone understand. I always say that I wish they could feel what I do for just 30 minutes. I don't wish pain on anyone but, just long enought so they get it. I try not to show pain around my daughters. I try to hold it together until I am in the shower. I don't have much time alone so it makes it very hard. I often thing how does this happen? I think that with many diseases and disabilities. How is it that you are going about your life one day and then out of no where something like this happens and changes your life drastically. I worry all the time when I have plans to do things. I wonder if I am going to end up in an episode or if its going to hit me while out and about. It's scary. I am having the MVD surgery soon and I am very nervous. I am just at the end of my rope here and I figure if it helps some it's better than what is going on now.
DeleteHave you had your mvd surgery yet?
DeleteHi Sonja. Thank you for sharing your experience. I agree with you; TN touches every area of one's life. It's difficult to "make someone understand." One of the best things a person can do is to take his or her spouse, partner, friend, or relative to a TNA (Facial Pain Association) conference or a TNA support group. Becoming part of a facial pain group can also help reduce the isolation and loneliness that results from the pain and disability. Let me know if I can help. Blessings to you.
ReplyDeleteTN pain comes and goes and when it comes, pain on right side of my face is so excruciating, feels like am being electrocuted. My doctor wants me to go to the ER for Morphine shot. How can you if you are unable to move due to the severe pain. It lasts for about 1-2 min, but it feels like forever. I scream and cry in pain. My husband is there for support.
ReplyDeleteI can relate. My pain is the crushing, head in the vice type of pain.
DeleteI said to myself, "Bob, you have to clam down." So I concentrated on my breathing, and began to walk slowly and rub my hands and arms - anything to try and focus on - something that was soothing 'to me' as much as I could, other than the pain.
It's good you have support. That's soothing too.
I'm thankful for the suggestions and the comments from people who have TN. Remaining calm, even though it can be terribly difficult, helps manage the pain.
DeleteHaving a spouse who offers support helps a person survive the incredible pain that TN causes. I know the electrocution-type pains very well, and I am sorry you experience them. Although a trip to the ER is difficult for someone who is suffering to the degree you describe, it may benefit you, especially if the ER understands how to take care of someone in your condition. Physicians can usually advise their patients about the skills of an emergency room.
ReplyDeleteThank you for sharing with us, and I am hoping you will feel better soon. I'm saying a prayer for you now.
Kathy,You are very kind to everyone here.
DeleteMay God bless you.
Bonnie, I appreciate your comment. People who are going through this type of pain deserve kindness and every blessing possible. May the Lord bless you as well.
DeleteI've had TN since just before I was 22 (I'm 28 now). The emotional side is the worst. I just don't feel I can connect with people--sometimes even people who have TN because a lot of them have actually lived a bit of a life before TN. When I got TN I hadn't even had my first kiss. So my first kiss I experienced when I already had TN and instead of being a happy experienced it was something I was anxious would cause me a lot of pain. It's hard and very depressing, I've sought counseling for this, but the person I talk to keeps bringing up how some people live with worse afflictions and don't suffer depression from it... which makes me feel worse somehow. As if to say I'm failing some test just by being weaker for letting my pain get to me. The part that makes it more horrible is you can't cry. I'm not sure if this is just me but crying immediately fills my sinuses and sinuses + TN = bad combination. You can't used kleenex, and I swear just tears rolling down my face can trigger an attack. It doesn't seem right to have something where it is painful to cry that makes you WANT to cry plenty.
ReplyDeleteI'm sorry your first bout of TN occurred at such a young age and saddened that you've experienced it at all. Before I became a counselor, I also saw someone to help me deal with the experience. Unfortunately,he called it fibromyalgia the entire time and never researched it. I stopped going. It hurt to talk, and why talk to someone who wasn't really listening? This is what inspired me to become a rehabilitation counselor.
ReplyDeleteI can reassure you that your counselor has no idea the extent of the pain you endure. You may refer this proessional to me, if you like.
There aren't any worse conditions than trigeminal neuralgia. No, we don't die from it. We aren't scarred. But most of us have wanted to die at some point and our scars live deep within our souls. The rejection we experience only makes the situation worse.
Yes, crying made my pain worse and so did laughing. Just know that you are not alone, and if you can get another counselor I highly recommend doing so.
Take good care.
Hello. I am 21 years old. I was recently diagnosed with TN. I am in terrible pain for 2 years. I very sad and depressed. I also agree that nobody can imagine what tn sufferers going through every day.I want to ask you do you feel tired all the time? I hate this dissability. I m so tired, I cant walk, go to school, even to take a shower. Kathy, you are very kind. God bless you.
ReplyDeleteI am so sorry that you have so much pain, and I can understand why you feel sad and depressed. Anyone who has TN would know what you are going through. It's not fair for anyone to have it, especially someone as young as you. Yes, TN causes people to be tired all the time. Please feel free to contact me at the email listed on my website, withgreatmercy.com
ReplyDeleteBlessings galore.
I take Gabapentin for the nerve pain of TN. God bless the person who invented it!
ReplyDeleteIt takes the top 2 layers of pain away. I can deal with that most days. The doctor started me at 300 mg. 3 times per day. Well, that didn't cut it. So we went to 400mg. 4 times a day. (I was told that some patients with TN take a lot more than that.)
Today, however, that isn't even touching the pain. I may have to increase to 400 mg. 6 times a day.
I'm praying for everyone with this awful disease. Good luck.
Shelia,
DeleteI am saying a prayer for you and everyone who has TN now, too. I hope you feel better really soon. I understand what it is like to take medication and to get no relief from it. God bless you.
Kathy
DeleteI was in a car accident that brought on TN amongst other things. Over 3 years later we are still trying to find what works for me. We are trying 10 week botox injections along wirh gabapentin. My body ois resistant to both, so high dosages are necessary. Trouble is, the pain is mildly better but it's hard to function both at home amd work. Enotions are also now plaguing me pretty hard! Been able to rely on faith and family to keep it together but lately i feel like I'm startng to spin out of control. How do i find a rehabilitation counselor in my area that i can trust to understand?
Denver, I am sorry you are having TN pain. It's horrible. I understand how difficult it can be to function. You can contact the CRCC https://www.crccertification.com/contact-us if you are looking for someone in your area. If you cannot find someone and you want to stay in touch, please email me at withgreatmercy at yahoo dot com, and I will do everything I can to help you. Sometimes people also get help from "upper cervical" chiropractic. It is a gentle tap. Acupuncture has also helped some individuals. Please continue to go to the physician who has been helping you. You are experiencing a great deal of loss, so it is normal to have emotions that are going in every direction. I will say a prayer for you tonight.
DeleteHi Kathy,
ReplyDeleteHi Kathy,
I just found your side. I'm diagnosed yet with TN, but I'm experiencing pain when I'm under the draft cold air and air-conditioner. I have tingling in my eye, my nose, my eyes and my teeth are hurting me and I have very bad headache for days. My left eye is a little bit closed.
Please, let me know if this sound as TN and if it is, do I have to be diagnosed by a doctor for my job to accommodate my needs.
Thank you for your support!
Tatyana
Hi Tatyana,
DeleteI am not a doctor, so I cannot diagnose TN. You describe some of its symptoms, though, especially the part about a mild breeze causing the symptoms. Usually a neurologist can diagnose TN, but sometimes another specialty or a dentist can determine what is causing the pain.
I am sorry your face, head, and teeth hurt. Please let me know what the doctor says. I am saying a prayer for you and hope you feel better soon.
I just was diagnosed with TN. I'm 43 years old, with 2 wonderful kids. They gave me medication for it and it didn't work. I had an episode that lasted for more than 8 hours. Went to the ER and they just gave me pain pills. I got another percription of antiseziure meds. Now I am taking 2 pills 3 times a day and I feel like a zomby. I am a teacher and it is so hard to get thru the days!
ReplyDeleteLisa, I am sorry to learn about your pain. God bless you. I can relate to what you are saying. I was 41 and a drama teacher when TN struck. At first the seizure meds made me feel like a zombie. I fell asleep during some classroom performances,but my students were kind enough to awaken me when it happened. After a few months, the sleepiness went away. I am saying a prayer for you and your two kids. Love is stronger than pain.
DeleteHi. Ive just discovered this site. Diagnosed with TN of ophthalmic nerve in July, aged 55. Got worse since then though currently pain free on Tramadol. Scared of getting a virus, that's what knocks me out. Never known pain like it. Too much time off work. Nightmare. Thank you for this site.
ReplyDeleteDennis,
DeleteThanks for stopping by. I am thankful that medication is helping you. When TN is when it affects the eye, the pain is terrible. God bless you.
I haven't been diagnosed yet, but I'm pretty sure I've got TN, the pain in my jaw, right under my cheek bone and close to my temple is literally killing me! My whole head hurts too, even my gums and teeth (only on my right side though, weird)... I feel like someone is constantly stabbing me, or sometimes shocking me with electricity or literally trying to crush my jaw and skull. It just started happening last week out of the blue, I thought at first maybe I had an infection in my tooth, then it started spreading and getting worse so fast. Now it hurts so badly, so intensely and for so long I'm having trouble sleeping at night.. I just want it to end. I mean, I can see why it's called the "suicide disease" I don't think I could live like this forever, I'm only 27, I can't imagine living with this for another 30, 40 or so years.
ReplyDeleteLisa, I'm so glad you stopped by the blog, and I am hoping you will soon have a diagnosis. The pain you describe sounds like the symptoms I had, and I am so sorry you are experiencing this. There are so many ways to treat trigeminal neuralgia; please don't give up hope. Let me know if I can help. My email is on the blog page, and I would love to hear from you again.
DeleteI went to the doctor yesterday, she would like to see if it's caused by an infection first so she gave me amoxicillin, but if that doesn't work we'll be doing an MRI. She thinks it might be TN but she wants to cross other options off the list first.
DeleteStill in the blood work phase, no diagnose, but my mom told me she has TN (I always thought it was TMJ but that's just what she told people she had because it was easiest) and then she also told me one of her cousins has it as well... is TN genetic?
DeleteThat is a good question. There has been at least one study about this, and I do not know the conclusion at which the researchers arrived. I have heard of a very few cases that run in families. Most people I have talked to do have not mentioned having anyone else in the family who have this disorder. I am so sorry your Mom is ill.
DeleteI have read the stories here and wanted to write. Hi my name is Lisa M. I am 53 1/2 years old. I was living my life with my wonderful husband of 32 years,when all of a sudden...wham! I was hit with pain on the right side of my face, like NOTHING I have ever experienced before. On June 23, I was sitting at a church for a funeral. A bolt of lightening hit the right side of my face! I literally turned to my husband and said I am having an aneurysm. I thought it was the worst migraine I had ever experienced, but I belive it was the beginning of my Trigeminal neuralgia nightmare. I took a Maxalt, didn't help. Two hours later I took another Maxalt, plus more meds. Nothing was touching the horrific pain. On June 25th, I went to my doctor for a shot. It didn't touch the pain that radiated from my temple to my bottom jaw. HE sent me to ER for a CT scan. ER doc said blood work showed no sign of stroke, so CT scan was unnecessary. sent me home with Fiorcet for pain..didn't help. On June 26, I was back at my doctor's office. My husband came and picked me up at work, because my blood pressure had gone up to 160/140 at work. By the time I got to the office it was 186/164. Doctor gave me shots, and BP meds to bring it down. BP was so high due to the pain. It took 10 days to get over that "migraine episode." July 11th i had oral surgery. My neurologist thinks the endodontist cut a nerve. I'VE been in constant pain since July 11th. On September 16, had my first infusion of dilantin. It was a horrible experience and I had hoped to never go through that again, but as I type this, I am trying to get my doctor office to set up another infusion. I am taking 1800mg og gabapentin. I thought God had healed me up until last week. I had been having pain only at a level of 3 for about 4 weeks, until last Monday and now the pain is back with a vengeance. Can anyone please share of success stories and lead me to a specialist? I am desperate for relief. Thank you for letting me share. I know All about the pain, the tears, the loneliness from family and friends. My God is my Rock, and He gave me my wondeful, loving supportive husband, who I pray doesn't get tired of this and decides to leave me. PLEASE God I pray for EVERYONE SUFFERING WITH TN, help us to find a lasting cure, until You come to take us to Heaven!Amen
ReplyDeleteHi Lisa, I am sorry to learn that you are suffering. Yes, there are success stories. I would like you to email me at withgreatmercy at yahoo dot com. I can give you more information there. Let me assure you that many people's initial trigeminal neurlagia episodes began after a dental procedure. I would like to invite you to a prayer group. In the meantime, I will add your name. I hope to hear from you very soon. Blessings to you,
DeleteKathy
I have had TN for probably 20 years. I have had migraines for over 30 years. For the TN, I was out on Lyrica 600mg a day. That quit working.
ReplyDeleteNow I am to start oxycarbazepine and have been on Baclofen, low dose. I am new to the group. Can someone give me some personal experience with taking oxycarbazepine. I am so
afraid it will turn me into a bumbling idiot
I can point you to some groups who can help with that discussion. Please send me an email at withgreatmercy at yahoo dot com. Thanks. I am sorry you are experiencing so much pain.
DeleteTN new to me.... along w/feeling sad. Adjusting to not driving and vision changes . Joining a support group would be helpful. Thanks for posting Kathy .
ReplyDeleteIt's so normal to feel sad. TN is a thief, and you are experiencing loss. I am so sorry for your pain. Please contact me at my email, withgreatmercy at yahoo.com if you need help finding a support group. Blessings galore.
ReplyDelete