Hi...any advice offered is so appreciated. For the past 7 months...what started out as an earache in my right ear, has slowly progressed its way to include my right ear, my right palate, right part of my tongue, right gland area, right throat area. It is an constant non stop no relief ache, which from reading all the posts I guess I have the atypical GPN. Frankly this pain is quite maddening.
I went to my ENT several times thinking it was my ear ache infection...he couldn't see anything. After the 3rd visit he recommended a CAT scan....while waiting for his office to call me with an appointment for the CAT scan...my pain progressively had gotten worse....so I called my primary doctor again and he told me he wanted me to bypass the CAT scan and get to a neurologist for an MRI. I was lucky and that next week was able to get into Sansum clinic in Santa Barbara for a neuro and Brain MRI. I saw a nice doctor who did a brain MRI WITHOUT CONTRAST that next day for me.
She told me that she believes I have GPN based off of my symptoms. She saw nothing unusual on the MRI and prescribed me 300 mg of Gabapentin 3x a day to start, and advised me that we may need to play with the dosage to see if it works for me. I questioned the neurologist if this could be anything else such as cancer...she said I could request a neck MRI if I wanted to rule anything like that out to put my mind at ease....why didn't they do that when I was in the machine with pain in my throat and head? And Should I have another MRI with Contrast to check the artery compression of the nerve?
That was 2 weeks ago. My question to you all is this...Do I need to go back to my ENT and request a scope of my throat or ultrasound of my thyroid to rule out cancer as well? Did you do those tests also? I am in such pain, it never stops, the medication I am on has done nothing so far and I am not sure how long I give it before I up the dosage. I am scared this could be something else....in all my doctor visits no doctor and ran a TSH test in my blood to check my thyroid....and I am a dental hygienist by career so I am scared it could be throat cancer since that has always been what I am on the hunt for with my own patients in the chair.
Thanks for listening to me rant...I am very sleep deprived, and scared I am not doing more to figure this out....I am a 38 year old mom of 3 very active young boys....I don't want this to rule my life....and I don't want to be a fool and let something more sinister such as a wayward tumor slip by me by accepting the GPN diagnosis so easily. Looking forward to hearing any advice.
I am so sorry to hear that you are experiencing such pain. You GPN sounds similar to mine. I have atypical as well, but was improperly diagnosed for a year with migraines - b/c my pain centers around my head in addition to my tongue (numb on left back third), sore throat pain, earache, and toothache. All of these pains come and go except for the headache; which even with medication is still chronic. I know the pain can be scary, but it really does sound like GPN and it can become very painful (picture a pinched nerve pathway in your brain).
My pain was the same way, it started gradually and took months to completely take over. If I didn't take medicine every day, I would be bedridden, the pain is that way. I'm not saying that to be scary, but hopefully to assure you that others have the same chronic and intense pain with this condition. I don't know if your neuro told you, but mine was always really nice to explain both the number of weeks until I should get "some" pain relief (usually 2 weeks) and 6 weeks to get the most effect. While it was hard to be patient, it did take several months of working with my neuro, going to him every six weeks to get the maximum mix of medications.
You are the only one that can decide if you need further scans to rule out anything; my suggestion would be to give a few weeks for the medicine to start working as an indicator that your doctor is on the right track.
Thank you so much Jessica for your advice and story… It is a comfort hearing your story. I keep telling myself that I need to be grateful that it isn’t going to kill me… And try to have grace under pressure. Right now I feel like I’m in a battle…I keep telling myself don’t let this get the better of you…
Did you have additional tests besides the standard brain MRI? Did your scan show anything?
Jill, you’re describing my symptoms exactly. I’ve been struggling with GPN for 10 years. It was diagnosed about 5 years ago, and it was misdiagnosed many times. I had my tonsils out at age 50 because my ENT was convinced my tonsils were the culprit…the tonsilectomy made things much worse for me…my symptoms used to come and go, but over the past year, it’s become constant - 24/7. I have a very irritated throat, pallate, tongue (only right side) and a horrible ear ache and pain from my ear down my clavical…I’ve tried all the meds A to Z over the years and I’ve been told by a specialist that I’m not a good candidate for MVD because it’s gone on for so long that too much damage has been done to fix things with MVD (on my MRI there was a good visual of a looping artery ontop of probable glosso nerve). I’ve had every scope and scan - even a throat biopsy - and everything is normal. It is so hard for me to believe that all this pain is neurological in nature, and it sounds like you struggle with this too. My pain med doc has urged me to get psycho counseling so that I can accept that I have this condition…so that - and researching the gamma knife - is my next step. I certainly understand wanting more diagnostic info. For me, ruling everything else OUT is something I have to do. Good luck to you! Hope you’re having a less painful day. I find that if I seriously distract myself with a craft or a chick flick (while resting neck on hot water bottle) I find a little peace.
Thank you so much girls for your very thoughtful and helpful advice…this pain is making me bonkers , especially by nighttime when the distractions stop…you have described exactly what I am going through, and that is a comfort that I’m not losing my mind.
Are you guys able to maintain your jobs still? My pain is creeping slowly and worsening each week…I fear my career is gonna be over if it continues to worsen. To be a hygienist you must remain hopping on your toes 10 hours straight and most definitely you can’t be on hard drugs while seeing patients.
I have been able to keep my FT job. I do take three medications, but none of them are 'hard' drugs. I take two anti-seizure medicines and an SSRI (Cymbalta) and it is the difference between being bedridden with this or being able to work.
I understand that a lot of people cannot handle the side effects of the anti-seizures - so I guess I am fortunate that way. My only suggestion is to give the medicines a try (whatever your Dr. proposes) and get through the initial phases. The Cymbalta, for example, I was completely nauseous for 2 weeks - which is standard. Many people quit during this phase. But once I got past that, I have been able to take it fine.
Sorry to hear you are suffering from this. Your symptoms (and thoughts) match mine.
I started having this horrific ear and throat pain back in Nov 2010. After a trip to the ENT, he ordered a CATscan of my skull. Normal. referred me to a neurologist. Had an MRI with and without contrast. Normal.
It went in to a wonderful remission from June 2011 until May 2012. Now it's back.
I have the same thoughts and fears that you do. When I went to the ENT first time, he didn't look all the way down my throat, just my nasal cavity. I'm wondering if the CATscan or MRI could pick up something suspicious in the THROAT by doing a brain MRI or CATscan. Not sure where it cuts off, I guess is my thought? At the chin?
I am nowalso experiencing neck pain and shoulder spasms, which has prompted me to make an appointment with my general doc this Monday.
After the flare-up this time, I had gone back to the neuro and she said she didnt see any red flags, and could order another MRI if I wanted. She gave me another prescription for Gabapentin which I take as needed. Maybe I should get on more of a schedule with it for the pain.
Like you, I'm not sure I want to settle with the GPN diagnosis until I've exhausted all avenues. I am a mother of two teenage daughters.
My general doc agreed to let me get an ultrasound on my thyroid, which takes place this Tuesday, and then I want to go see another ENT to have him scope my throat. Also, I am going to ask for an MRI of my neck to see about the shoulder spasms. I don't care at this point if I have to pay out of pocket for all of these tests! The pain is maddening, I agree. And scary.
So know that you are not alone in this. Everyone here is so supportive and is going through similar types of issues. I hope today you are feeling a bit better. The meds help.
Kara thank you so much for reaching out to me :) I am so frustrated with this pain, I keep telling myself that it could be worse, but then its starting to interfere with my life....I am so tired :(
I tried to work 2 days this week subbing for hygiene and almost wanted to pass out from the annoying throat and neck pain, not sure if I can keep doing my career at this rate, its such a physically demanding job.
My gabapentin hasn't done a darn thing yet....and I am curious as to why your doctor tells you to take your Gabapentin as needed, but mine has me on it constantly 3 times a day? Which one is the right way to take it?
I bet you are freaked out about the spasms, my toe today went into a contracted bizarre rigid position for about 15 minutes...so then I started stressing about maybe its Multiple Sclerosis happening...please please tell me what happens with your tests this week, maybe we can figure this crazy Atypical out together since we seem to be in the more rare case of GPN.....I choose to think its cause we are more fantastically strong women right??? ;) I go this friday to my ENT and I am gonna pin him to the wall this time and beg for more tests to be sure....it seriously feels like an alien trying to pry his way out of my neck and side of my head. What I find the most bizarre about this GPN is so far I can putter about my day smiling on the outside and attempting to be this competent dental hygienist when on the inside I am ready to scream and fall into a fetal position....its a very difficult thing to describe to other people. They say.. "can't you just get a massage....it sounds just like my pinched nerve in my neck I get sometimes " that is very annoying , I just smile and nod. :)
Kara Wilson said:
Hi Jill
Sorry to hear you are suffering from this. Your symptoms (and thoughts) match mine.
I started having this horrific ear and throat pain back in Nov 2010. After a trip to the ENT, he ordered a CATscan of my skull. Normal. referred me to a neurologist. Had an MRI with and without contrast. Normal.
It went in to a wonderful remission from June 2011 until May 2012. Now it's back.
I have the same thoughts and fears that you do. When I went to the ENT first time, he didn't look all the way down my throat, just my nasal cavity. I'm wondering if the CATscan or MRI could pick up something suspicious in the THROAT by doing a brain MRI or CATscan. Not sure where it cuts off, I guess is my thought? At the chin?
I am nowalso experiencing neck pain and shoulder spasms, which has prompted me to make an appointment with my general doc this Monday.
After the flare-up this time, I had gone back to the neuro and she said she didnt see any red flags, and could order another MRI if I wanted. She gave me another prescription for Gabapentin which I take as needed. Maybe I should get on more of a schedule with it for the pain.
Like you, I'm not sure I want to settle with the GPN diagnosis until I've exhausted all avenues. I am a mother of two teenage daughters.
My general doc agreed to let me get an ultrasound on my thyroid, which takes place this Tuesday, and then I want to go see another ENT to have him scope my throat. Also, I am going to ask for an MRI of my neck to see about the shoulder spasms. I don't care at this point if I have to pay out of pocket for all of these tests! The pain is maddening, I agree. And scary.
So know that you are not alone in this. Everyone here is so supportive and is going through similar types of issues. I hope today you are feeling a bit better. The meds help.
About the meds, I AM supposed to be taking it as directed and have been self-medicating a bit. I seem to take it just when the pain is coming on instead of being on a regular schedule, and I need to start taking it as prescribed!! Maybe then I will start to feel better!
Yes, the MS idea has come into my mind MANY times. I've read it can start with symptoms like this. I did also discuss the subject with my doc and she said the "diffuse scattered white spots" that showed up in my MRI "did not classically resemble MS, " and she did not think that's what I have. Believe me, though, I still wonder?!?
I know what you are saying about trying to put on a happy face in front of everyone, while inside I am feeling like absolute sh$%^$t!! I have been in Hawaii this week with my husband, kids and sister and family and have been trying to brave through the pain. Here I am in paradise, and I am not feeling good!!
I am hoping at this point that it is just GPN and nothing more sinister. I want to be here for my family.
By the way, is your husband understanding? Mine is to a point. He does, though, think a lot of it is in my head! Grrrrrrrrr......
Hawaii sounds wonderful if you didn’t have the pain:( I have never been there…keep powering thru it…you will make it! Yes my husband has been awesome thru this, but I am newly diagnosed so let’s hope if this continues on the long haul he will remain vigilant in the for better or WORSE part , I let him read my posts, when he sees others going through the same pain I think it helps him understand it more. I will send you my personal email once you receive my friend request, and we can commiserate together if you ever need to.
I am sorry for your pain. I understand the frustrations and confusion. How could anyone have such horrificpain and not find any relief? I have tried every medicine, 4 or 5 ct scans, nerve blocks, laser treatments, Eagles Syndrome surgery on one side, you name it I think I have tried it to get some relief. For the last month, I have been taking Kadian. It has been the best medicine for my pain since the beginning of this horrific pain. I take one every 10 to 12 hours. It is time released. Please ask your doctor about this medicine. I am feeling more normal than I have in 2 years. As long as this medicine helps, I am not going to pursue any other surgeries. MVD is my last resort. I am an active mom and work full time too. I just turned 43 and this started exactly 2 years ago. I would have never thought that 2 years later I would still be dealing with this pain. I still have constant pain and it is two years later. I exercise everyday and make sure to take the medicine as prescribed. This medicine Kadian has made me feel like I can live again without being high. When I read others posts that say they have had it 10 + years, it scares the hell out of me. My first few months I thought I was going to go crazy. I had no relief unless I was on pain meds. I hated feeling high. Unfortunately I lived that way until I finally found the time released meds. About a year and a hlf ago, my doctor prescribed Nortriptylene to me. It is for chronic pain but also an anti depressant. It did not help my pain but it does help me to cope with the pain. I do not have crying fits and moments of feeling sorry for myself. I wish you well.
Denise, thank you so much for your words of encouragement...sounds like you have been through the hell and back also :( I have not heard of the Kadian, I will most definitely look into it. I am now on week 3 with the nortriptyline, had some rotten side effects with that, but also some days with some pain relief....each day is different this week, one day I am miserable, the next day bearable.....I am still in the crying fit stage :) feels like a helpless moment sometimes each night when its constantly hurting.....my doctor gave me some Norco for pain relief to try last week, I felt less pain the first hour, then just felt high with pain....that wasn't fun at all....hang in there to you as well!!
I have been dealing with this horrifically painful disease for 12 years. Typically pain medications dont work. Medications for seizures help, such as tegretol. In the beginning I ran around to doctors and ENT’s and nobody knew what was wrong…I know they thought i was crazy. They perscribed antibiotics and such. Then it would go into remission and be gone;) sometimes for a year. Then BAM it was back. Eventually i saw a ENT who thought it was eagles syndrome. That was ruled out on a CT scan, but he pressed somewhere near my tonsil and OMG! Horrific pain! It lasted forever. I was coughing and choking. My left eye watering, i was salivating…Awful. Anyways he said this is neuro…It really was all in my head…haha! Well i could just go on and on sorry. I am just sick of suffering alone. It then took 4 months for a neuro appointment with his referal…suffer on.
I am probabably going to be removed for talking to much. I suffered for years…meds helped a bit, but still would get all different variations of stabbing ear pain, tonsil pain, throat pain…sometimes just stabbing pain and sometimes the worst…horrific spasms that sometimes last along time. I have reached the end of my tolerance and am seeing a neurosurgeon at University of Pittsburgh Medical Center Tuesday. I have to have surgery. I can stand it no longet. I barely have remissions and ended up in the er almost incoherent in pain. I am a rn at the same hospital…thank god as i could not speak. Talk to you all later about what the doctor says.
Hi Jill, I'm Amanda. Firstly, I'm so sorry to hear you're in so much pain. Secondly, I completely empathise and understand because I'm there too! I was told for 2 years I had tonsilightis, had numerous ENT scopes none of which revealed any problems. Thirdly, don't worry about cancer - if it were cancer it would have come up on bloods and MRIs and the Doctors are very quick to catch things like that. In saying that, you're right to question your diagnosis (but not to over-worry) - they say that with a GPN diagnosis they can only be 80% sure....the other 20% being that they hope it goes away because they have no answers.
The pain, like yours, gradually got worse and worse - from the right ear to the right side of my throat, to a swallowing sharpness in the right side, to headaches on the right side. I was eventually put on Gabapentin also (900mg) but after 3 months found it made me so groggy, with a "cloudy" head like I was hungover all the time. I couldn't work and couldn't remember what I was doing half the time - my 3 year old son was more alert and intelligent than I! I'm on Tegretol now and have been for 9 months and while a lot of the time it's been good for the pain (taking it down from a 6/10 to a 3/10 most days), it's not without its own side effects and some days the pain is back to 8/10. Al MRIs I've had (4 in 12 months) have come back clear, bloods are fine (apart from low iron due to Tegretol) and again, I am constantly told they're only 80% sure it's GPN but can't offer me many more options.
I, like you, have struggled with the idea that I will have this for life. I am 32 and already being on Tegretol, I cannot have more children so my now 4 year old son will be an only child. There are days he doesn't see mummy because I'm in bed with too much pain but I am trying not to let it rule my life. I am constantly searching for the other 20% answers and trialling new things to keep the pain at bay. I hope you find some answers, but in the meantime this website is a lifeline that keeps us all together, others that share your pain quite literally and empathise with your situation.