Comments on: From the mailbag… https://newsnetwork.mayoclinic.org/discussion/from-the-mailbag/ News Resources Wed, 17 Apr 2013 03:40:05 +0000 hourly 1 https://wordpress.org/?v=6.7.2 By: susanashephard https://newsnetwork.mayoclinic.org/discussion/from-the-mailbag/#comment-1910 Wed, 17 Apr 2013 03:40:05 +0000 https://sharing.mayoclinic.org/?p=2757#comment-1910 In reply to Jamie Murray.

Jamie, we are extremely sorry to hear that you continue to suffer with your facial pain. Please realize that you are not alone. We strongly recommend that you contact the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) http://www.suicidepreventionlifeline.org. You should also speak to your physician about these thoughts because he/she will refer you to a specialist who will be able to help you.

]]> By: Jamie Murray https://newsnetwork.mayoclinic.org/discussion/from-the-mailbag/#comment-1909 Tue, 16 Apr 2013 21:08:47 +0000 https://sharing.mayoclinic.org/?p=2757#comment-1909 I’m not sure what happened to me. Like many others here, just seemed to come from no where. Too much stress, clenching my teeth, TMJ, who knows. I’m not even sure TN is or isn’t what I have. I had an MRI done this past February 2013 and the Neuro that looked at it ruled out MS and stated that my symptoms don’t match TN. She diagnosed me with Atypical Facial Pain in like 10 minutes of leafing through my MRI’s. She summed up 18 months of agony in a few minutes of her time and 200.00 out of my pocket. But I have once again, a severe sinus infection. I have sinus issues and had maxillary sinus surgery 8 months ago. My symptoms are constant burning pain in my gum tissue with extreme sensitivity to even the touch of my own tongue, let alone anything like food. And a sense of pressure and burning sometimes throbbing, in all my upper teeth mainly on the right side but also on the left upper teeth. The pain I feel in my teeth is that of extreme hypersensitivity to touch, hot and cold. My tongue hurts and burns on the right side constantly. Now my right ear hurts inside and I have ringing in both ears. And severe pain in my right jaw too that came around the same time the ear and neck pain came. The sinus surgery did not help alleviate the pain. And 8 months later the sinus issue is back. I like others, live in Chronic and constant pain. The onset I believe was when I took an antibiotic called ZPAC for a sinus infection. Oh, forgot to mention that all of my maxillary teeth became somewhat loose after I completed the antibiotic. And the dental profession has no idea what I am talking about nor what to do. All areas of dental check out good. I have spent tons of money exhausting every effort to find help and relief. I have laid on my couch or bed for 18 months barely able to even walk from the couch to the bathroom. I’ve lost 45 lbs. And one day as I passed the mirror to go the toilet, I looked in the mirror and had no idea who was looking back at me. I didn’t recognize myself. Since then my life has ceased. I’ve lost my job, people I thought were friends, my entire family has just stopped calling. The pain has taken everything from me. I hurt so bad that I just cry. I don’t know what else to do. My son is angry with me and doesn’t seem to understand and will never comprehend the pain I live in. I applied for medical insurance and by the grace of God was approved. Had it not been for the one person who has seen me through this and been my Angel, Joanna Jones Tokley, who I call Mom, I wouldn’t be here. She made me get off the couch and go to a doctor. Who put me on Amitryptiline, Gabapentin, Hydrocodone, and xanax. I am greatful for this doctor, because she gave me enuff relief that I am able to at least get up. But I am not pain free. The pain is now a 10 from a 15. The hardest part of all this is losing my sense of self in this pain. I was once a cool down to earth chic that loved life. Enjoyed family. The worst is the loss of the relationship between me and my 18 year old son. He’s getting ready to graduate in a few weeks from high school. And I am fighting to be here to see that. He says he just wants his old mom back. And I hold a tremendous amount of guilt because I want that for him and for me. Yet Instead I exist in this drug induced pain fog. That I just seem to drift through life daily. Crying and praying to God to either help me or take me home with him. There is no life in this. I admire those of you that are,like myself, still in search of answers and relief. Oh, and most of my hair fell out. I lost so much weight, that I guess lack of nutrition caused my hair to fall out too. Nice huh? I pray that we all find help. I am at this point suicidal and think of it at least 100 times a day. I stay here for my son. Sometimes I think he wishes I would die so that he does’t have to watch me live this way. I’m ready. Just trying to hold out for ONE MORE DAY in hopes that God will point me and my doctor in the right way. God bless us all in this life and hand we have been dealt.
Peace to all Gods People. I wish us all to be free and free of pain!
Love,
Jamie

]]> By: Denise Buchman https://newsnetwork.mayoclinic.org/discussion/from-the-mailbag/#comment-1908 Mon, 15 Apr 2013 21:28:29 +0000 https://sharing.mayoclinic.org/?p=2757#comment-1908 I am only providing a tidbit of information because I did not see that you mentioned Lyrica as one of your meds. It was a miracle drug for me, and even though I do still have “itching” in my face, the Lyrica keeps it under control.

]]> By: Kim https://newsnetwork.mayoclinic.org/discussion/from-the-mailbag/#comment-1907 Mon, 15 Apr 2013 03:11:47 +0000 https://sharing.mayoclinic.org/?p=2757#comment-1907 I had a car accident 1993, had nerve pain in my arm. Then in 1994 I had surgery for Thoracic Outlet Syndrome. They removed my Scalene Muscle .During surgery they found adhesions all over my brachial plexus and removed them. I came out of surgery worse than when I went in. Too long of a story to get into. I was then diagnosed with RSD/CPRPS and Brachial Plexopothy.

After surgery I had horrible headaches and facial pain for short periods of time on the right side. I was told it was normal with RSD. I have taken every anticonvulsive meds and pain killers over the past 18 years. They either do not work and/or I cannot function on them.

I now have HORRIBLE, CONSTANT pain in the right side of my head, face, burning and pain in my ear canal. It feels as if someone is trying to force a hot poker with ICEE HOT on it in my ear. I have had 3 root canals and 2 extractions. My dentist will not remove any more teeth, he sent me to an oral surgeon who said nothing is wrong with teeth. I cannot function the pain is so bad. My ENT said I have Trigeminal Neuralgia.

I just filled out the online request for appointment and I hope I can get in ASAP. I do understand why it’s called” the suicide disease”. Nobody should have to live like this. If I do have TN I really hope The Mayo Clinic can help me. I am desperate to stop the pain.

]]> By: Lori Sieber https://newsnetwork.mayoclinic.org/discussion/from-the-mailbag/#comment-1906 Mon, 08 Apr 2013 23:47:53 +0000 https://sharing.mayoclinic.org/?p=2757#comment-1906 I have had severe pain in the jaw and tongue since a wisdom tooth was removed. Was told the nerve was damaged during the procedure. Does anyone know if any of these procedures will work in this case? Thanks!

]]> By: susanashephard https://newsnetwork.mayoclinic.org/discussion/from-the-mailbag/#comment-1905 Thu, 04 Apr 2013 01:23:22 +0000 https://sharing.mayoclinic.org/?p=2757#comment-1905 In reply to LS Ambrose.

Thank you for your comment. We suggest that you contact the Appointment Office in Jacksonville, Florida at 904-953-0853 and the representatives will be able to assist you. Thanks again!

]]> By: LS Ambrose https://newsnetwork.mayoclinic.org/discussion/from-the-mailbag/#comment-1904 Wed, 03 Apr 2013 22:55:28 +0000 https://sharing.mayoclinic.org/?p=2757#comment-1904 My husband was diagnosed with Trigeminal Neuralgia about 2 years ago. (I am not sure how long ago it was.) His pain is in his right eye and now the pain goes from there along the side of his head to the back of his head. Before, it was diagnosed he was given Hydrocodone which made the pain go away. Also, we thought his right eye was bulging. He finally went to a different doctor who diagnosed the problem as Trigeminal Neuralgia. The pain went away before he tried the medication from the new doctor. The pain came back a couple of months ago. He has taken the medication the doctor wanted him to take plus he has taken several other meds. There is one more medication his doctor wants to try. (Now they say his right eye is not bulging. His left eye is sinking due to fractures around that eye from being hit in that area with a baseball as a teenager.” The next step would be the Gamma Knife surgery which scares both of us. To my knowledge they have not said anything about a tumor pressing on the nerve. Reading the stories of the people above doesn’t make me feel better. We live in Richmond,VA. Do you have any other recommendations? Would it worth it to come to the Mayo Clinic in Jacksonville, FL. for treatment?

]]> By: kelly page https://newsnetwork.mayoclinic.org/discussion/from-the-mailbag/#comment-1903 Mon, 25 Mar 2013 23:36:24 +0000 https://sharing.mayoclinic.org/?p=2757#comment-1903 I didnt ask you to diagnose. I asked if dizzyness with seeing black spots could be a symptom of TN.

]]> By: Polly Gilgenbach https://newsnetwork.mayoclinic.org/discussion/from-the-mailbag/#comment-1902 Mon, 25 Mar 2013 21:11:39 +0000 https://sharing.mayoclinic.org/?p=2757#comment-1902 In reply to kelly page.

Thank you for your note. Unfortunately, we are not able to diagnose, provide second opinions or make specific treatment recommendations through this correspondence. If you would like to schedule an appointment you can call any of our appointment offices at Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511. I am attaching a link to a page on our website that may provide some additional information for you. http://www.mayoclinic.com/health/trigeminal-neuralgia/DS00446

]]> By: kelly page https://newsnetwork.mayoclinic.org/discussion/from-the-mailbag/#comment-1901 Mon, 25 Mar 2013 19:58:23 +0000 https://sharing.mayoclinic.org/?p=2757#comment-1901 My uncle had sporadic bouts of TN pain for about 20 years and then he had 2 years of constant pain and underwent the gamma knife which helped him. He was around 74 when he had the surgery. My oldest daughter is 30 and has TN and has had the symptoms since she was 19 years old and was finally diagnosed when she was 27. My youngest daughter is 10 and has symptoms of TN since she was 8, she has not been diagnosed. Both of my daughters symptoms are stabbing pain in their right temple that makes a pain in their left eye. My oldest daughter gets blurry vision in that eye when it happens. My youngest daughter had her first experience with blurry vision from the pain 2 weeks ago. She had not had blurry vision before this. Recently though (in the last 10 days), my youngest daughter has been becoming dizzy and seeing black spots before her eyes. Is this a symptom of TN? She has fallen down 4 times in the last 10 days, plus many dizzy spells everyday where she hasnt fallen down. She is going to see an eye doctor tomorrow….but she cannot get in to the pediatric neurologist until June 3. Can you tell me if the dizzyness and black spots could be a symptom?

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