tag:blogger.com,1999:blog-3655368432663249945.post7305684482405474123..comments2023-01-17T19:47:12.967-05:00Comments on Hope for people who have trigeminal neuralgia: Trigeminal neuralgia, face pain, and emotionskathy taylorhttp://www.blogger.com/profile/04168180633396307413noreply@blogger.comBlogger35125tag:blogger.com,1999:blog-3655368432663249945.post-24385094696231330872018-05-04T16:43:47.882-04:002018-05-04T16:43:47.882-04:00It's so normal to feel sad. TN is a thief, and...It'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.Kathy Gilbert https://www.blogger.com/profile/13406158109044202860noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-19430537561145884352018-05-04T16:21:19.391-04:002018-05-04T16:21:19.391-04:00TN new to me.... along w/feeling sad. Adjusting to...TN 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 . Anonymoushttps://www.blogger.com/profile/00690126027162097633noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-86619890814970035252017-07-05T13:58:42.304-04:002017-07-05T13:58:42.304-04:00I can point you to some groups who can help with t...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. Kathy Gilbert https://www.blogger.com/profile/13406158109044202860noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-57807151044953852542017-07-04T23:56:48.263-04:002017-07-04T23:56:48.263-04:00I have had TN for probably 20 years. I have had mi...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. <br />Now 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<br />afraid it will turn me into a bumbling idiotJune20166https://www.blogger.com/profile/16743466245671071286noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-30320843725208081122017-02-06T19:43:04.167-05:002017-02-06T19:43:04.167-05:00Denver, I am sorry you are having TN pain. It'...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.Kathy Gilbert https://www.blogger.com/profile/13406158109044202860noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-41659294157952212432017-02-06T02:15:41.190-05:002017-02-06T02:15:41.190-05:00Kathy
I was in a car accident that brought on TN a...Kathy<br />I 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? Denvernoreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-67227468444944902462016-11-07T14:19:08.976-05:002016-11-07T14:19:08.976-05:00Hi Lisa, I am sorry to learn that you are sufferin...Hi 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,<br />KathyKathy Gilbert https://www.blogger.com/profile/13406158109044202860noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-13942237516549490582016-11-07T13:57:33.426-05:002016-11-07T13:57:33.426-05:00I have read the stories here and wanted to write. ...I 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!AmenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-26269136490105303522015-03-18T09:39:41.577-04:002015-03-18T09:39:41.577-04:00That is a good question. There has been at least o...That 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.Kathy Gilbert https://www.blogger.com/profile/13406158109044202860noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-2064750802122429542015-03-17T16:34:03.340-04:002015-03-17T16:34:03.340-04:00Still in the blood work phase, no diagnose, but my...Still 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?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-48661211830798296412015-01-07T12:47:04.506-05:002015-01-07T12:47:04.506-05:00I went to the doctor yesterday, she would like to ...I 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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-7328606124987940092015-01-05T21:19:45.813-05:002015-01-05T21:19:45.813-05:00Lisa, I'm so glad you stopped by the blog, and...Lisa, 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.Kathy Gilbert https://www.blogger.com/profile/13406158109044202860noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-49198726239737461332015-01-05T16:22:48.266-05:002015-01-05T16:22:48.266-05:00I haven't been diagnosed yet, but I'm pret...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. Lisa Shttp://www.pinterest.com/thatladyfrommnnoreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-42075603816847212482014-10-18T17:38:42.328-04:002014-10-18T17:38:42.328-04:00Dennis,
Thanks for stopping by. I am thankful tha...Dennis,<br /><br />Thanks 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.Kathy Gilbert https://www.blogger.com/profile/13406158109044202860noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-57084367805984840362014-10-18T05:42:56.668-04:002014-10-18T05:42:56.668-04:00Hi. Ive just discovered this site. Diagnosed with ...Hi. 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.Dennisnoreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-69819393273043312862013-06-16T19:02:05.590-04:002013-06-16T19:02:05.590-04:00Have you had your mvd surgery yet?Have you had your mvd surgery yet?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-85010644170024951622013-04-10T11:42:37.473-04:002013-04-10T11:42:37.473-04:00Lisa, I am sorry to learn about your pain. God ble...Lisa, 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. Kathy Gilbert https://www.blogger.com/profile/13406158109044202860noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-20211655171604562832013-04-10T11:05:39.962-04:002013-04-10T11:05:39.962-04:00I just was diagnosed with TN. I'm 43 years ol...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!lisa latshawnoreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-66408407111554501732013-02-23T09:02:34.019-05:002013-02-23T09:02:34.019-05:00I'm thankful for the suggestions and the comme...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.kathy taylorhttps://www.blogger.com/profile/04168180633396307413noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-37569117331204567662013-02-23T01:09:33.091-05:002013-02-23T01:09:33.091-05:00I can relate. My pain is the crushing, head in the...I can relate. My pain is the crushing, head in the vice type of pain.<br /><br />I 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. <br /><br />It's good you have support. That's soothing too.Bobnoreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-83688301345874897982012-10-12T19:26:48.522-04:002012-10-12T19:26:48.522-04:00Hi Tatyana,
I am not a doctor, so I cannot diagno...Hi Tatyana,<br /><br />I 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. <br /><br />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. Kathy Gilbert https://www.blogger.com/profile/13406158109044202860noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-23330354447982859972012-10-12T17:05:24.122-04:002012-10-12T17:05:24.122-04:00Hi Kathy,
Hi Kathy,
I just found your side. I'...Hi Kathy,<br /><br />Hi Kathy,<br />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.<br />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. <br />Thank you for your support!<br />TatyanaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-52652377808376307882012-10-03T22:32:55.021-04:002012-10-03T22:32:55.021-04:00Shelia,
I am saying a prayer for you and everyone...Shelia,<br /><br />I 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 Gilbert https://www.blogger.com/profile/13406158109044202860noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-39562472246823149762012-10-03T22:10:31.905-04:002012-10-03T22:10:31.905-04:00I take Gabapentin for the nerve pain of TN. God b...I take Gabapentin for the nerve pain of TN. God bless the person who invented it!<br />It 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.) <br />Today, however, that isn't even touching the pain. I may have to increase to 400 mg. 6 times a day.<br />I'm praying for everyone with this awful disease. Good luck.Grandma (Sheila)https://www.blogger.com/profile/05265147728640957102noreply@blogger.comtag:blogger.com,1999:blog-3655368432663249945.post-15027915939480552222012-09-01T21:26:10.350-04:002012-09-01T21:26:10.350-04:00I am so sorry that you have so much pain, and I ca...I 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<br /><br />Blessings galore.Kathy Gilbert https://www.blogger.com/profile/13406158109044202860noreply@blogger.com