"Hi Kat,
Thanks so much for your reply. So far I have been diagnosed by a neurologist, not a…"
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Forum
Does anyone have Atypical GPN?
Started by jessica in General. Last reply by jessica 6 hours ago. 4 Replies 0 Likes
Hi - I'm new to the forum, having recently been diagnosed. For the past 15 months I was under the impression that I had sudden onset of Chronic Daily Migraine, so this is quite a switch. You can read the details on my profile page, but instead of…Continue
shingles virus
Started by lynlee in General yesterday. 0 Replies 0 Likes
Is the shingles virus or any other virus associated with GPN?Continue
Questions concerning surgery
Started by rmc in General. Last reply by KayJay on Friday. 21 Replies 0 Likes
Hi, My name is Rob. This is my first post. I have been dealing with my symptoms for 6 months. Recently the pain is getting harder to manage. I scheduled my decompression surgery for May 7th. It will be done by Dr. Mark McLaughlin at Princeton Brain…Continue
Twitter Chat
Started by John "JC" Colyer in General. Last reply by John "JC" Colyer May 18. 2 Replies 0 Likes
Hope everybody is well.Would any of you be interesting in being a part of a twitter chat? It could be a fun way to learn about other communities on BF, share your experiences with a rare disease, tell your story and gain exposure for BF and all of…Continue
Latest Activity
ModeratorBen Munoz's blog post was featured
May 2012 LivingwithGPN Community Newsletter
Dear Friends and Family of LivingWithGPN,We are so excited we cannot wait to tell you about how our…See More
rmc replied to jessica's discussion Does anyone have Atypical GPN?"Jessica,
I urge you to contact Dr. Mark McLaughlin at Princeton Brain and Spine. He is without…"
lynlee posted a discussionshingles virus
Is the shingles virus or any other virus associated with GPN?See More
annable left a comment for jessica"Hi Jessica. I'm really sorry for your pain. And welcome to our family! …"
Chrisa Alberts replied to jessica's discussion Does anyone have Atypical GPN?"YES. U CAN EMAIL ME AT PRETTYPLUGS@YAHOO.COM IF U WANT TO GO INTO DETAIL WOULD BE MORE THAN.HAPPY…"
ModeratorBen Munoz posted a blog post
May 2012 LivingwithGPN Community Newsletter
Dear Friends and Family of LivingWithGPN,We are so excited we cannot wait to tell you about how our…See More
Top Discussions
| 1 |
Questions concerning surgeryPosted by rmc on April 8, 2012 |
| 2 |
Does anyone have Atypical GPN?Posted by jessica on May 25, 2012 |
| 3 |
I am new to this and don't know my way around the puter much. Have a lot of questions HELP!Posted by JBimadingdong@aol.com on April 17, 2012 |
| 4 |
Contemplating MVD, is it the right thing to do?Posted by Alan Morrison on April 21, 2011 |
| 5 |
What would you do to comfort a sick friend?Posted by Armando Abrero on May 9, 2012 |
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Glossopharyngeal Neuralgia (GPN) - Online Support GroupGlossopharyngeal Neuralgia (GPN) - Online Support Group
New member says:
Hi Guys, thanks for the welcome. I love this support group, I’m newly diagnosed and it’s helped me a lot. I’m now about 6 weeks in and have discovered that I hate the drugs which will reduce my pain, but if I’m really pragmatic I can live with it happily. The best thing for me is really silly but it works. I downloaded ‘My Pain Diary’ app for my phone, and when I’m in pain, I log how much pain I’m in and where. That’s it. I feel like I’ve done something and can then move on with my life.
This support group has also made me realized that I’m incredibly lucky because it could be a lot worse. I’ve some severe pain from my GPN, but nothing like what people are describing here. You are all so brave, and my thoughts are with you.
The other thing which made me feel lucky was my GP’s comment when I told him the ENT had diagnosed GPN. He said “That’s great!” and I just looked at him. He added that the other option was a dirty great tumor eating into my brain. Perspective. GPN beats cancer hands down.
So thank you everyone for being there, and please keep sharing your stories, they make an enormous difference.
Glossopharyngeal Neuralgia (GPN) - Online Support Group
New member says:
” Thank you so much, it has been a very lonely 14 years and if i am been truthfull a very scarey one. I would love to talk to any one who has GPN as its good to learn all I can, my biggest fear is not knowing if it will get worse as I get older? “
Glossopharyngeal Neuralgia Support Group
New Member Says:
“Thanks I really want to let people know that although this thing GPN is a monster and can make you feel as if you the only one in the world with it…you are not alone…plus there was a bright light for me at the end of it…I wish it for everyone here.”
Glossopharyngeal Neuralgia Support Group
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Blog Posts
May 2012 LivingwithGPN Community Newsletter
Posted by Ben Munoz on May 26, 2012 at 6:42am 0 Comments 0 Likes
Dear Friends and Family of LivingWithGPN,
We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities…
Continue
No Eagles Syndrome
Posted by Denise on May 23, 2012 at 11:05pm 0 Comments 0 Likes
My styloid process and tonsils have been removed and no relief from the pain. It is actually worse. Unfortunately, it doesn't seem as though it was Eagles Syndrome. Back to my GPN diagnosis. UGH! I am starting a stronger pain medicine this…
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