Comments on: From the mailbag… http://sharing.mayoclinic.org/2009/09/29/from-the-mailbag/ Stories from patients, family, friends and Mayo Clinic staff Mon, 13 Feb 2012 15:50:02 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: Briana Pfendler http://sharing.mayoclinic.org/2009/09/29/from-the-mailbag/#comment-11648 Briana Pfendler Mon, 29 Aug 2011 16:54:18 +0000 http://sharing.mayoclinic.org/?p=2757#comment-11648 Lovely just what I was searching for. Thanks to the author for taking his time on this one. Lovely just what I was searching for. Thanks to the author for taking his time on this one.

]]> By: Louanne http://sharing.mayoclinic.org/2009/09/29/from-the-mailbag/#comment-11517 Louanne Thu, 18 Aug 2011 15:50:51 +0000 http://sharing.mayoclinic.org/?p=2757#comment-11517 Just been diagnosed after, physical therapy, root canals and a tooth removal. Is this what I am in line for...what I am reading above? I can feel the pain behind my ear, and is under my eye, and jaw, but at this point seems manageable. I just turned 60, and am a photography teacher that loves her job! I have to wait 6 weeks for a neurology consult and have just been handed a Rx. What's the song..."Is that all there is.." Louanne Just been diagnosed after, physical therapy, root canals and a tooth removal. Is this what I am in line for…what I am reading above? I can feel the pain behind my ear, and is under my eye, and jaw, but at this point seems manageable. I just turned 60, and am a photography teacher that loves her job!
I have to wait 6 weeks for a neurology consult and have just been handed a Rx. What’s the song…”Is that all there is..”

Louanne

]]> By: Jeannie http://sharing.mayoclinic.org/2009/09/29/from-the-mailbag/#comment-11497 Jeannie Wed, 17 Aug 2011 06:10:48 +0000 http://sharing.mayoclinic.org/?p=2757#comment-11497 I'm sorry you are having so much trouble, I had a misdiagnosis and a dentist removed all my teeth before I moved to Arizona and saw doctors at the Barrows Institute, I had the Gamma Knife and a few months later had mvd, it worked for a long time but something had changed. I now have the pins and needles all the time and sneezing fits all day which is controlled by the trigeminal nerve, I miss my teeth and miss my freedom. Keep spreading these stories, awareness is sooo important. Good luck with your doc, I would see if they will recommend you to Mayo also. I’m sorry you are having so much trouble, I had a misdiagnosis and a dentist removed all my teeth before I moved to Arizona and saw doctors at the Barrows Institute, I had the Gamma Knife and a few months later had mvd, it worked for a long time but something had changed. I now have the pins and needles all the time and sneezing fits all day which is controlled by the trigeminal nerve, I miss my teeth and miss my freedom. Keep spreading these stories, awareness is sooo important. Good luck with your doc, I would see if they will recommend you to Mayo also.

]]> By: Paula http://sharing.mayoclinic.org/2009/09/29/from-the-mailbag/#comment-3331 Paula Thu, 09 Jun 2011 19:30:37 +0000 http://sharing.mayoclinic.org/?p=2757#comment-3331 Hello - My father suffers from the pain of Trigeminal Neuralgia, and I'm wondering if anyone knows of any alternative medicines, or vitamins, that could help him with this pain. Thank you in advance for your reply! Paula Hello – My father suffers from the pain of Trigeminal Neuralgia, and I’m wondering if anyone knows of any alternative medicines, or vitamins, that could help him with this pain.

Thank you in advance for your reply!

Paula

]]> By: christina http://sharing.mayoclinic.org/2009/09/29/from-the-mailbag/#comment-2328 christina Thu, 10 Mar 2011 16:50:17 +0000 http://sharing.mayoclinic.org/?p=2757#comment-2328 Hi, I noticed you are from Orange Co. CA. Me too. I was diagnosed with TN 13 years ago - currently, I have this ocurrance since the beginning of Feb. 2011 and still going on. I'm on 900 mg of Gabapentin. It is so painful.. christina Hi, I noticed you are from Orange Co. CA. Me too. I was diagnosed with TN 13 years ago – currently, I have this ocurrance since the beginning of Feb. 2011 and still going on. I’m on 900 mg of Gabapentin. It is so painful..
christina

]]> By: Mary http://sharing.mayoclinic.org/2009/09/29/from-the-mailbag/#comment-1219 Mary Sat, 29 Jan 2011 17:27:42 +0000 http://sharing.mayoclinic.org/?p=2757#comment-1219 I have had trigeminal neuralgia, TMJ and Osteoarthritis in my right side of my face for 31 years now and It totally ruined my life. My kids had to take care of themselves and I just laid in bed most of the time to keep from moving. I spent thousands and thousands of dollars over the years to try and find out what was wrong. I finally got relief from a dentist but it still would come back and I then went to a chiropractor who helped me tremendously but 3 years ago, it came back with a vengeance and it then moved from my face to include around my nose, forehead and temple. When I would take my shirt off my head, I felt like I was being scalped by a indian. I know I have been told it just gets worse. I started out with Tegratol and for 2 weeks was pain free but it came back so I went to a neurologist and he put me on trileptol but now, my blood work is over the normal range. I have decided to go thru the Mayo clinic in Minnesota so hopefully it will help me to get pain free. I am suppose to be able to get a appt. in March or April. I have had trigeminal neuralgia, TMJ and Osteoarthritis in my right side of my face for 31 years now and It totally ruined my life. My kids had to take care of themselves and I just laid in bed most of the time to keep from moving. I spent thousands and thousands of dollars over the years to try and find out what was wrong. I finally got relief from a dentist but it still would come back and I then went to a chiropractor who helped me tremendously but 3 years ago, it came back with a vengeance and it then moved from my face to include around my nose, forehead and temple. When I would take my shirt off my head, I felt like I was being scalped by a indian. I know I have been told it just gets worse. I started out with Tegratol and for 2 weeks was pain free but it came back so I went to a neurologist and he put me on trileptol but now, my blood work is over the normal range. I have decided to go thru the Mayo clinic in Minnesota so hopefully it will help me to get pain free. I am suppose to be able to get a appt. in March or April.

]]> By: Gary McKee http://sharing.mayoclinic.org/2009/09/29/from-the-mailbag/#comment-1218 Gary McKee Tue, 28 Dec 2010 16:59:26 +0000 http://sharing.mayoclinic.org/?p=2757#comment-1218 Hello, I have been suffering with TN now for 2 years. I first started with Tegratol and than the pain went through it. I than had Vascular Decompression Surgery and that worked for 6 months leaving my lower jaw(mandibular nerve) parially numb. After 6 months the pain returned. We than jumped to Gamma Knife which has proven also not to have worked. I currently can hardly talk and on a liquid diet. Went for a second opinion and they recommended Mayo Clinic. Ready to do anything at this stage. Looking up flights to Mayo! Help? Hello,
I have been suffering with TN now for 2 years. I first started with Tegratol and than the pain went through it. I than had Vascular Decompression Surgery and that worked for 6 months leaving my lower jaw(mandibular nerve) parially numb. After 6 months the pain returned. We than jumped to Gamma Knife which has proven also not to have worked. I currently can hardly talk and on a liquid diet. Went for a second opinion and they recommended Mayo Clinic. Ready to do anything at this stage. Looking up flights to Mayo! Help?

]]> By: Debbie http://sharing.mayoclinic.org/2009/09/29/from-the-mailbag/#comment-891 Debbie Sun, 14 Nov 2010 22:36:31 +0000 http://sharing.mayoclinic.org/?p=2757#comment-891 I have been diagnosed with TN and have suffered now for over 20 years. Started out in the Jaw, then to the Eye and now all over the left side of my face from eyebrow to neckline and throat. I had a HMO plan and was given tons of meds, Tegretol, Baclofin, Ultram,etc.. I am now going every 3 months for 6 nerve blocks to my face. This has bought me a year back of my life but my pain is starting to come back even with the nerve blocks. I am at my wits end with this and cannot go any longer. IT IS THE SUICIDE ILLNESS!! HAS RUINED MY LIFE!! I am finally scheduled for a MRI and further test and to see Dr Christoher Duma at Hoag in Orange County Ca. I am wondering if this is a good idea or should I go right to the MAYO clinic. Any Suggestions? Please someone hear me out there!!! Thanks Debbie I have been diagnosed with TN and have suffered now for over 20 years. Started out in the Jaw, then to the Eye and now all over the left side of my face from eyebrow to neckline and throat.

I had a HMO plan and was given tons of meds, Tegretol, Baclofin, Ultram,etc.. I am now going every 3 months for 6 nerve blocks to my face. This has bought me a year back of my life but my pain is starting to come back even with the nerve blocks.

I am at my wits end with this and cannot go any longer. IT IS THE SUICIDE ILLNESS!! HAS RUINED MY LIFE!!

I am finally scheduled for a MRI and further test and to see Dr Christoher Duma at Hoag in Orange County Ca. I am wondering if this is a good idea or should I go right to the MAYO clinic. Any Suggestions?

Please someone hear me out there!!! Thanks Debbie

]]> By: Kathy Mertes http://sharing.mayoclinic.org/2009/09/29/from-the-mailbag/#comment-890 Kathy Mertes Thu, 11 Nov 2010 21:08:07 +0000 http://sharing.mayoclinic.org/?p=2757#comment-890 I had vascular decompression surgery and am seeing double. It has been a month now and the eye doctor said the 4th nerve was pulsating. Has anyone else had this problem and/or have a solutation? I had vascular decompression surgery and am seeing double. It has been a month now and the eye doctor said the 4th nerve was pulsating. Has anyone else had this problem and/or have a solutation?

]]> By: Diane P http://sharing.mayoclinic.org/2009/09/29/from-the-mailbag/#comment-889 Diane P Tue, 19 Oct 2010 13:32:30 +0000 http://sharing.mayoclinic.org/?p=2757#comment-889 I have suffered with Trigeminal Neuralgia for 11 years and have been through two procedures (Gamma Knife and a invasive surgical procedure with no luck at all. I am now back on two of my seizure medications (Tegratol and Neurotin) and assume that's the way I'll have to live the rest of my life (unless the side effects of the medications ruin my liver). Diane P I have suffered with Trigeminal Neuralgia for 11 years and have been through two procedures (Gamma Knife and a invasive surgical procedure with no luck at all. I am now back on two of my seizure medications (Tegratol and Neurotin) and assume that’s the way I’ll have to live the rest of my life (unless the side effects of the medications ruin my liver).

Diane P

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