PLEASE HELP!!!! I’m 26 years old from the UK. DOES ANYONE KNOW OF A UK NEUROLOGIST WHO KNOWS ABOUT GPN/ BILATERAL GPN, THAT CAN DO MVD ???? IF SO PLEASE HELP! ID APPRECIATE IT SO MUCH!!!!!! I’m desperate !!! The pain is so extreme I don’t even want to wake up. Im so scared and don’t now how you all cope? 6 years ago I came down with a virus , like the epstein barr. Everything subsided and i was left with CONSTANT throat pain that has never ever left since. Like the skins been torn off and I’m swallowing onto it.It feels ‘inflamed’ and burning. Ive had days where I’ve been screaming for help because its so unbearable. I spent 3 years going to doctors and they didn't get it, They were SO ignorant. I also have a kyphosis lump on the top of my neck and an inflamed occipital nerve ( that gives me headaches and neck ache but i can deal with that as its not constant) They knew it was some form of neuralgia but none of the nerve medication was helping me(since then I’ve read by many that the meds can help with TGN but rarely with GPN).Ive tried amitrip, gabapentin,carbamazepine,clonazepan,morphine etc with no luck, just side effects.I had to be my OWN doctor and research in desperation! Ive been to an ENT recently who gave me some steroid injections, but they haven’t helped. Its such agony I tried EVERYTHING! I used to gargle Tabasco hoping it would kill the nerves. The only way i have got through every day since is chewing AIRWAVES MENTHOL CHEWING GUM its saved my life and i honestly don’t think id be here today if it wasn’t for that. Years later through research I knew I had to see a neurologist. To cut a long story short he scanned me and found BILATERAL GPN , compression on both sides. When he told me this i cried with happiness and so did my family because all this time id be disregarded but i KNEW something was wrong! At this time i thought it would be fixable, now years later being here in this amount of pain i know it isn’t. Before this I was such a bubbly happy girl whose desperate to be with her friends and have a normal job. Its impossible! I’m having to whisper and the more i talk the worse the pain gets. From the second i wake up its there! All i want to do is be with my friends. Its so debilitating, i know i wouldn’t be able to have a family or boyfriend in the pain I’m in. The neuro i saw didn’t want to do MVD surgery on me because he said the results could be fatal! He also couldn’t understand why it was bilateral and constant pain either. Ive since researched and found that its rare but people DO HAVE BILATERAL GPN AND CONSTANT PAIN? My pains almost entirely on my soft palate in my throat and occasional ear pain but I’m able to cope with the ear . But the throat pains stopping my life and at the moment i just want to die because I’ve lost all hope as I’ve tried everything but major surgery.I don’t know how I’ve coped so long but the pains getting worse! I even had my tonsils out.The pain is ruining my life and my family can’t cope and are helpless. PLEASE HELP , OR IF THERES ANY ONE WITH SUCH SIMILAR SYMPTOMS I CAN SPEAK TOO PLEASE MESSAGE ME, AS I HAVE NOBODY WHO UNDERSTANDS , THANK YOU SO MUCH X
Lucy, I could have written this. I have bilateral gpn although for now its only the right side that has caused me grief. I am in the West Midlands and struggled for 5 years with GPN and no one understanding until I found a specialist in London. Had MVD last February and it has helped I'd say 70% of my symptoms along with some meds that I still take.
Please PM me here and I'd be happy to email you my email so you can ask any questions you like, it's sometimes easier than a public forum. Make sure you keep posting on here, it does the world of good to find people experiencing the same as you especially when you're in agony and no medical help seems to work. In the meantime go to your GP and asked to be prescribed Tegretol (carbamazepeine) along with Amitriptyline - these 2 together helped me no end. If they refuse, ask to be referred to a NEUROLOGIST immediately who should be able to prescribe you these and then your GP can take over the care of you once you've been prescribed them.
Amanda
You don't know what a relief this is to read , you're an angel . Thank you! I will pm you now x
Lucy and Granadam, you can add a message to a friends request, and put the email address in there.
For your safety, we do not allow members to put their addresses on the open discussion board. I have removed it.
Seenie
Hell'o my name is Marie. I have had GPN since Dec.,2009. The pain is bilateral on both sides of the throat, mouth, tongue and severe pain in my vocal cords because I also have Vagus Neuralgia. My large artery in my brain is banging against my Glossopharyngeal AND MY VAGUS NERVE, which is causing non-stop pain in my vocal cords; and I also have non-stop pain in mouth,tongue, & throat. Any doctor that states its not possible to be on both sides is a dummy and should go back to med. school. I have been to at least 20 physicians because they usually looked at me like I was a nut case. I finally found that Neurologists know of it. Mine sent me to a neuro-surgeon. He read my MRI and explained to me everything that was happening in my brain. Every time my heart beat, my large artery was pounding on the GPN and the Vagus nerve. He said I needed brain surgery. I finally didn't feel like I had mental problems as some physicians made me feel. The brain surgery was unsuccessful and he accidentally cut one nerve to my vocal cord. NOW I LIVE IN THE SAME 24/7 severe pain and have to catch my breathe if I say a long sentence. I lost my husband, and a fiancé from being in pain all the time. I am allergic to most meds. But, just recently mu Nerologist added Amitrypeline with my gabapentin, It has helped me so much for the 1st time since 2009. But, the pain comes back fast if I am late taking the gaba.which I need 1200mg. three pr. day, and amit. three tablets at bed time. An oncologist I went to suggested to add the amit. and the neurologist tried it. Your story is almost exactly like mine. W/reference to the br. surgery all he did was put in an implant to separate the artery from the nerve. I have heard in some surgeries they wrap the artery or nerve with Teflon and the implant. Maybe that would have been better. Well, I probably haven't helped much but I have the same symptoms too. I have no saliva, so I also take Bethanechol which makes saliva and I take Clonazepam for break-thru. pain. It takes that much meds. and it still is felt some, especially the dry mouth. Do you have that also as I do? God bless you. Marie
Hi Lucy! I’ve sent you a private message as I’d love to message you and give you support. It’s not often you find someone in the same area as you and I would love to get to know you!
Xxxx
Granadam, I've sent you a friend request! please accept so i can private message you x
I will do Lucy, but I’m away til weds and on the mobile version of this site I can’t find how to accept your request!!! Get!!
Marie my heart breaks so much for you! i can't believe he did this? Could you not sue him for doing something like that ? I can't imagine what you're going through! You're right most of them are dummys! Yes i remember once having some fake saliva spray? It didn't do much tbh but its not overly dry. That will be the last thing you need when you're in this horrific pain . Marie i am always here for you because i suffer every second of every day and i know how scary it is <3 i am here for you . I wish i knew the answers! i myself have had boyfriends who left me because of it :( If only they knew! I think even grown men who had this would call 911! xxxxxx
Granadam thank you so much i will email you xxx
Lucy, go to MEMBERS and do a search for Leeds or Manchester. That may give you some people to send PMs to. You might also want to contact this member http://www.livingwithgpn.org/profile/useridsandy
Seenie
Thank you!! i have sent her a friend request x
Lucy I've replied to you via email!