Glossopharyngeal Neuralgia

Replies to This Discussion

Permalink Reply by Elizabeth on February 5, 2010 at 12:28pm

Hello. I take neurotin. I also find if I cut back on sugar intake, which I'm not saying is what you are doing, but it helps me because i'm a sugar addict.
I take advil migrane and neurotin 500 milligrams. I can take more. I take it at night. Neurotin also helps with restless leg syndrome and helps me sleep. Its worth a try, less painful than suicide.
Please don't kill yourself. I know its painful, but try very hard and ask others on the site if they have surgeries that might help you. Try yoga, it helps with breathing and relaxation. If the yoga instructor insist you do all the poses immediately quit and find someone else. Several great tapes or DVD on yoga if you can't go outdoors. I know you think, oh gosh this is going to hurt too much and it might, but ask the doctor first and see if you can try to get through it. BE sure to ask your doctor. Don't just stick to this area of the living w/ trigemeinal neuralgia, i'm also on bi-lateral and there is a wonderful lady there who was like you are but she had MVD surgery and now feels so much better. I hope you feel some relief soon. I bragged I thought i was getting better and it hit me in the ear again. I'm not so bad as the others in pain. I'm hoping i will be an exception. I hope you get some relief and if i can be of any help please hang on if you can. I might have to go somewhere in March but will be back on afterwards. can check my e-mails from afar. good luck and best wishes and let me know sincerely, elizabeth

Permalink Reply by Monica Sanders on February 5, 2010 at 4:26pm

Thanks so much. I couldn't stay awake on neurotin. I so appreciate you writing back so quickly. I will definitely cut back on sugar. Does bi lateral mean you have it on both sides? I am just so grateful to have found others that can relate to what I go through because I know my family must get tired of hearing "I hurt too much" when they want me to go do something. I pray about it constantly. Thanks again and I will let you know if sugar makes a difference for me.

Elizabeth said:

Hello. I take neurotin. I also find if I cut back on sugar intake, which I'm not saying is what you are doing, but it helps me because i'm a sugar addict.
I take advil migrane and neurotin 500 milligrams. I can take more. I take it at night. Neurotin also helps with restless leg syndrome and helps me sleep. Its worth a try, less painful than suicide.
Please don't kill yourself. I know its painful, but try very hard and ask others on the site if they have surgeries that might help you. Try yoga, it helps with breathing and relaxation. If the yoga instructor insist you do all the poses immediately quit and find someone else. Several great tapes or DVD on yoga if you can't go outdoors. I know you think, oh gosh this is going to hurt too much and it might, but ask the doctor first and see if you can try to get through it. BE sure to ask your doctor. Don't just stick to this area of the living w/ trigemeinal neuralgia, i'm also on bi-lateral and there is a wonderful lady there who was like you are but she had MVD surgery and now feels so much better. I hope you feel some relief soon. I bragged I thought i was getting better and it hit me in the ear again. I'm not so bad as the others in pain. I'm hoping i will be an exception. I hope you get some relief and if i can be of any help please hang on if you can. I might have to go somewhere in March but will be back on afterwards. can check my e-mails from afar. good luck and best wishes and let me know sincerely, elizabeth

Permalink Reply by Liz K. on February 5, 2010 at 10:43pm

Hi Monica,

I'm sorry you are hurting so badly. I know your family can't understand because people who do not have TN cannot understand. And I'm sure it is the same way with GN. Shots did not work for me. Does MVD work for GN? MVD helped so much with my TN (still have pain but the medicines keep it well under control most days). Without it I don't know what I would be doing now. I know I would not be functioning. Keep trying medication. Maybe the right combination. I know my neuro and surgeon said I should be drunk on what I take but luckily I am functioning. It is more difficult on the trileptal because it makes me so sleepy. I'm praying for you and all the others here. I know what you mean about contemplating suicide. I am sure that thought has crossed the minds of a lot of people. But maybe your pain will suddenly go away. I am praying for you.
Liz K.

Permalink Reply by Monica Sanders on February 8, 2010 at 1:37pm

Ro, I read this to my family yesterday as I sobbed. They never understood why I took a pain pill before I ate and waited for it to take effect. They did not know why I had good and bad days. This helped a lot. Thank you ever so much. Monica

Ro ~ said:

There is a great article that Debbie posted regarding caretakers/family understanding. Maybe this will help a bit.

Permalink Reply by Monica Sanders on February 8, 2010 at 1:50pm

My pain has never gone away which of course made me wish this really wasn't my diagnosis but nothing else fits. I could not stay awake on a low dose of tegretol and lyrica made me feel like my brain was being overtaken by something weird. Thanks for your prayers. I get mad at God sometimes because I pray for healing in Jesus name and nothing happens but I also will never close the door because my faith is too deep. I so appreciate talking to others who go thru the same thing and actually understand. Thanks Elizabeth. I will pray for you also.

Liz K. said:

Hi Monica,

I'm sorry you are hurting so badly. I know your family can't understand because people who do not have TN cannot understand. And I'm sure it is the same way with GN. Shots did not work for me. Does MVD work for GN? MVD helped so much with my TN (still have pain but the medicines keep it well under control most days). Without it I don't know what I would be doing now. I know I would not be functioning. Keep trying medication. Maybe the right combination. I know my neuro and surgeon said I should be drunk on what I take but luckily I am functioning. It is more difficult on the trileptal because it makes me so sleepy. I'm praying for you and all the others here. I know what you mean about contemplating suicide. I am sure that thought has crossed the minds of a lot of people. But maybe your pain will suddenly go away. I am praying for you.
Liz K.