Our stories are important. Will you share yours?

Ben's Friends is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what Ben's Friends has meant to you!

In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference for you life and your family's life, or how being here has changed how you cope with your rare disease. Or anything else you can think of!

It doesn’t have to be long. And if you’d rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.

Your turn! What has Ben’s Friends meant to you?

I was diagnosed with acute bronchitis going on 6 weeks ago. I was given an antibiotic and the sore throat went away for about 4 days. Since then I have been to the doctors 2 times telling them about this excruciating pain on one side of my throat. They keep telling me it’s a virus. This pain is so bad that it is depressing me. Sometimes I swear I feel like I am going to pass out. I also reminded the doctor of my Sjogren’s ,Diabetes and other autoimmune conditions. …I may as well talked to a wall. I know my body and if this were a virus wouldn’t my whole throat hurt instead of one side? The stabbing pain is unbearable. I have an appointment with my Rhuematologist this Wed hoping she can help me with a diagnosis. I have been doing my own research and I believe I do have gpn. The past 6 months I have had 3 crowns done because of mouth pain…who knows maybe they were unnecessary! Is stabbing the right word to use when I see my doctor? I do see pain management for migraines also…is there a connection? Just at a loss for words anymore…I want answers…I need a diagnosis…has anyone had this experience?

Is there anybody else out there who would like to say something positive about this Ben's Friends support site? What has Ben's Friends meant to you, or done for you?

We'd love to hear something that we can share with the people who support us financially during the annual fundraising drive. Just a few words will do!


Seenie from Moderator Support

I was so pleased to find Ben's Friends sites for TN and later GPN when I was suffering with symptoms I didn't really know much about. Now years later I decided to help them out by becoming a Moderator on these sites. I hope Ben's Friend's sites help more people in the future.

I am here because I am not sure if I have GPN. I have had some teeth removed in the past 2 years and that took care of the pain. but the partial plate is painful and I keep getting it get adjusted. but I have had pain in one area for a year, and it is under my left nostril. I went to the best ent dr. who said it wasn't sinuses. he sent me to a neurologist. I have no idea whether he was a good dr. or not. but he found out that I have sjogren's, said it was not neuralgia, and wants me to go to a rheumatologist. but he also had a dr. in training with him and asked him his opinion first, and this dr. said it didn't sound like neuralgia. (I have two books on TN, and I look at the symptoms and they don't sound like neuralgia but dental problems.) so this neurologist wanted me to go back to my family dr. and tell him to get me into see a rheumatologist. I went back to him, and I must say that my family dr. said a year ago that it was neuralgia and sent me to a different neurologist. I went and just pointed to where my pain was. he gave me gabapentin. said it had no side effects. I asked about tests. he said, if gabapentin works then you have neuralgia. I took the medicine once, and I thought I was going to die. the pain was horrible, it intensified, I had a splitting headache, and I felt very strange and the strangeness is why I thought I was dying. so here it is a a year later and when I took the results of the test to my family dr. he didn't bother to look at them but immediately said, 'it is glosso..l neuraligia.' go back to the dr. I sent you to. didn't he say that you had neuralgia. "NO, he said to take gaba and if it worked I have it, but it didn't work." but all this is after having tried other kinds of anti-seizure meds that gave me horrible side effects without helping the pain. so I went back,, and he read me what my family dr. said, asked me if I had pain in tongue, throat, etc. and I said NO, why? he just smiled. then I was rubbing my tongue along my gums as they were dry, and he said that you have more pain than you are admitting. I said, 'I am not in pain right now.' he gave me tramadol, said it was not addictive, told me to take it 2 x a day. I asked him to write down what I had, and he wrote glosso---. I called the pharmacy, and they said that tramadol was addictive and that you don't have to take it daily for it to work. one pill will work. I took one pill and four hours later I still hurt. then it constipated me. talk about a lot of laxatives the next day.

my pain is about an inch long from my nose to the top of my gums. it just aches, about anywhere from a 4 pain level to a 2, and I get throbbing. when I am working in the yard it is gone, but when I come in my nose clogs up and it hurts. I have a hard time draining my sinuses then.

so I went to a nurse practitoner in town with an ear ache, and she told me how to massage my sinuses. I thought that was stupid. I wanted medicine. so I went back to my family dr. who claimed that I didn't have fluid behind my ears (she had said I did), and that it was my neuralgia. that is when he sent me back to that dr. so that night I got on line and learned how to massage my sinuses. I felt fluid draining and my ear ache went away. hasn't been back. and my pain near nose when away briefly.

so anyway, after seeing my family dr's neuraligist, I went home and looked up glosso... my throat never hurts, my tongue doesn't, I have no shooting pains, no shooting pain in ear, just get earaches, as I have all my life.

so I decide to poke around that tooth near my nose with a toothpick, and it doesn't hurt in front, but when I get to the back it begins throbbing and then the ache started. I go to a dentist again. he said to floss that area good, floss hard and come back in 2 weeks. I flossed it for a week, and the pain and throbbing didn't let up for those 2 weeks. well, actually I quit flossing after a week and it settled down some, so I tried some other experiments. hot water will really causes it to ache and to throb, and it won't calm down until the next day. cold water doesn't do much. sugar doesn't do anything.

so I go back to my dentist and he thinks I need a root canal (that cap has been on my tooth since I was 18, I am 70 now. it is holding a fake tooth, so there is a bridge with two caps on each side with a strip of some kind of silver meta.

so now I sit. don't I have to have those glosso... symptoms in order for it to be neuralgia?

next, I decide to learn more about the neurologist I went to in the city. he is affiliated with 7 hospitals, and he takes on doctors after they have finished school. I called the hospital to get a referral, and they gave me him first and another dr. I asked if that means he is the best. they won't say. I call another hospital and asked about the other one. he is retired. he is actually a pediatric dr. and a neurologist. I told the woman my issues, and then asked her which one she would believe. it wasn't the pediatric one.

but the dentist who said he would do the root canal thinks that he may stir up more problems. and it all started when a dentist capped a molar without doing a root canal because it was falling apart. I went to have a root canal and the dentist couldn't do it. said there was calcification in it and it wouldn't drill through. it was pulled. then the next tooth started to hurt, so I went to a different dentist. he wanted to cap it and so he used composite filling and filled the other one with the same stuff. the pain wouldn't go away. (these are all upper teeth). I had them pulled. then I found more pain in the next tooth. another dentist wanted to do a root canal. I had it done. still had pain. went to an oral surgeon. he took out some chips and filed off the tip of that tooth, which was the eye tooth. I was now in worse pain. he said "it is either your sinuses or a bad root canal. but since the ent dr. said it wasn't sinuses then you need to go to a root canal specialist. I had it pulled. I got a partial plate. back in 1980 I had facial pain on the other side of my face. a neurologist said the medicine he could give me was heavy duty. I went to a dentist. I think he did a root canal, and when that didn't work he said, take a sineaid and if that works it is your sinuses. I did and the pain went away. so now 40 years later sineaid doesn't work. doesn't do nothing. but back then my tooth wasn't sensitive to hot or cold.

so again. here I sit. and to go up north to another neurologist seems a waste of time, and now it is winter with bad roads. a root canal specialist will just say, you need a root canal. they never worked, but pulling my teeth did. but now that I know that my partial plate hurts no matter how many times it is adjusted, I think, am I going to be toothless? and would those screw in teeth be worse?

I hope someone can give me some suggestion.

Although I'm new to this site, sadly I'm not new to the pain from GPN (Glossopharyngeal Neuralgia) or TN (Trigeminal Neuralgia). My doctors have used both of those in reference to my condition, so I'm not really sure if I have one or the other, or if it's possible that I have both. Whatever it is, though doesn't really matter to me now. I've been living with nerve pain for about 12 years now, and I'm only 26.

When it first started, I experienced a stabbing pain in my left ear (imagine someone taking an icepick & stabbing your eardrum with it repeatedly for anywhere from a few seconds to a few minutes), so naturally my parents & I thought it was something wrong with my ear. When the ENT doctors couldn't find anything, they had the Dentist see if it was TMJ or something wrong with my teeth or jaw. When that showed nothing, I was pretty much labeled as someone seeking pain medication so either I or my parents could abuse it or sell it. This went on for about 8 years, during which I kept telling the same story to multiple doctors; all the while the pain in my ears increased in severity & frequency, eventually becoming a constant pain accompanied by attacks of crippling pain in both the left & right ears.

In 2010 I was referred to the Neurology dept. at the hospital I get treated at, & I was finally diagnosed with TN. After that, I was prescribed the usual round of nerve medications, which unfortunately had no effect. Eventually, I was referred down to a clinic in Seattle to see if they could help me in any way. It was determined that they would perform a Microvascular Decompression of the Left-side 9nth Cranial Nerve. While I was waiting for the surgery day to come, the Primary Care physician I was seeing expressed his feelings about the whole operation. He said that there was nothing they could do to get rid of the pain & that it would be a waste of my time. I 'fired' that doctor the next day & filed a complaint. That doctor is now the head of the Pain Management team at my hospital.

Back to the story; I had the MVD performed, and although it reduced the pain for a couple months, it eventually returned with a vengeance. Now I not only had ear pain, but also experienced attacks of Vertigo & started having pain during eating & swallowing. In November 2012, I had another surgery, this time a Rhizotomy of the Left 9th Cranial Nerve. Thankfully, this time I had significant relief. Although I still needed pain medication to deal with the pain on a daily basis, I no longer needed as much as I had before the surgery & was able to reduce the amount of Morphine ER (Extended Release) & Morphine IR (Immediate Release) by 2/3rds. Not only that, but I was having fewer & fewer bad pain days.

A little over a year since my 2nd surgery & I was at a point where I was able to have a part-time job & not have to take days off because my pain was out of control. However, my Pain Management doctor wasn't satisfied with this. They kept telling me that being on pain meds for longer than a few months more or less would guarantee that I would become an addict & that the pain meds could be causing me pain because of how they can affect the chemistry of your brain. So, they referred me to Traditional Healing for a procedure called "Healing Hands", where they use traditional Alaska Native medical knowledge & massage oils to try and relieve pain by releasing built-up gasses or liquids or whatever. Unfortunately for me, the procedures only caused pain. After the 1st treatment I had an increase in pain & new triggers appear, like wind setting of my nerve. I told the doctors & they said it could be possible that the pain had to get worse before it could get better. After 3 more treatments, the pain was much, much worse & I refused to see them anymore.

It's been a year since then & I'm still worse than I was before I saw Traditional Healing. Now my Neurologist wants me to consider Radiosurgery to kill what remains of the nerve. I would like some feedback on how Radiosurgery has worked (or not worked) for anyone that has undergone that sort of operation. I'm quite willing to try anything to relieve my pain, but I'm also afraid of the side effects that could pop up. There is a possibility that there could be some partial facial numbness and/or difficulty swallowing. I'd love to be pain-free or at a level that I could handle it with store bought drugs, but not at the expense of looking like I had a stroke or not being able to eat solid food. I know I'm over-reacting a bit, I did the same before my cranial surgery (I couldn't help but think of the scene from Saw III where they drill into the old man's skull. I still can't watch those scenes in TV or movies). However, I 'd rather scare myself out of it & be in pain than go through with it & have it go as terribly as I feared.