tag:blogger.com,1999:blog-19808903.post114900835726439625..comments2023-09-13T09:04:06.104-05:00Comments on living with AFP: atypical trigeminal neuralgia sucksTrishahttp://www.blogger.com/profile/12631147253931042678noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-19808903.post-51017136723694894172012-11-16T17:10:34.153-06:002012-11-16T17:10:34.153-06:00You are probably sick of everyone saying you will ...You are probably sick of everyone saying you will be fine, when no one could understand this unless they live with it. I'll pray for you. I had a Parotidectomy due to a tumor a year ago. When I woke up I told them the pain wasn't right with the drain tube. The PA told me it was normal and was sent home. Left in for 5 days it got worse. When the PA removed it it was infected, again she said "It was normal." A month later my neck and head filled up with infection, again she said "It was normal." This went on and the pain 24/7 progressively got worse. Finally 10 months later demanding to see the surgeon. They said they never saw this and there was nothing they could do. Now seeing numerous specialists @ NYU and being in the medical field no one would listen. They have diagnosed ATN. Like you say your life has depleted. My friends and family have disappeared. The only person I feel bad for is my daughter who saw me go from a strong, independant, colorful, and wordly woman to an empty shell barely able to move. The majority of people/doctors do not know & need to know the difference with TN & ATN? It is not the same treatment.How do you cope, when it is hard remembering life without this? KPKimcamhttps://www.blogger.com/profile/02207473739787671911noreply@blogger.comtag:blogger.com,1999:blog-19808903.post-89106324779733752792010-04-24T20:51:39.053-05:002010-04-24T20:51:39.053-05:00Have you tried gabapentin? Concidered MVD. I had t...Have you tried gabapentin? Concidered MVD. I had trigeminal neuralgia for 4 years and finally had MVD surgery. Best decision I have ever made. I still flinch when someone goes to touch my face and I fear the cold- It terrifies me....but at least for right now I dont hurt anymore.Unknownhttps://www.blogger.com/profile/14148700577299541088noreply@blogger.comtag:blogger.com,1999:blog-19808903.post-39714719572909016042008-09-16T16:17:00.000-05:002008-09-16T16:17:00.000-05:00I'm pretty sure I've got ATM. Its been only 2 wee...I'm pretty sure I've got ATM. Its been only 2 weeks, but all the symptoms fit. I'm really scared that this is chronic. I have 2 small children and can't just check out. I'm so sorry for your pain.Summer's Worldhttps://www.blogger.com/profile/02624468551305819257noreply@blogger.comtag:blogger.com,1999:blog-19808903.post-34480719695691093392008-04-01T15:55:00.000-05:002008-04-01T15:55:00.000-05:00I found some interesting information about Trigemi...I found some interesting information about Trigeminal Neuralgia <A HREF="http://emedicine.com/EMERG/topic617.htm" REL="nofollow">here</A>. Check it out!Billhttps://www.blogger.com/profile/06584167266795387696noreply@blogger.com