In Jan 2016 I sneezed and had a horrible pain in my throat. After that I couldn’t swallow water without this searing pain that went up into my ear. I was told I had pulled a muscle. After a few weeks it went away. Then a couple of months later started again for no reason, I also had a bad dose of the flu resulting in a chest infection, was told my neck was getting cold and to wear a scarf to bed. Had another bout and then Feb last year another. I had got so depressed with the pain that I was hospitalised for depression, I was told the pain was due to anxiety. My GP listened to me and I had various tests xray, catscan but nothing to showed. I had no symptoms or signs of a sore throat. Then early this year so an ENT specialist who put a camera down my throat but he said it was all clear and sent me for an MRI. This showed nothing. Once again depression took hold as I battled to get some understanding of the pain I was in. People just couldn’t comprehend what I was going through. Eventually I went back to my GP with a summary of all that I was going through for the last 2 and a bit years, I had written. He read it and down the bottom I had a question - Is it Glossopharyngeal Neuralgia? He agreed that is all it could be since all the tests were negative. He has put me on an anti-convolscant and has increased the dosage after a two week trial. I am a bit calmer knowing that it is not all in my mind, is not caused by anxiety. That it is at least something but it is hard to get people to understand. I just wanted to reach out to others who have this. It is hard to make people understand why I stop half way through a sentence, grimace when I swallow, don’t drink through a straw and generally have hidden myself away. It is embarrassing and awkward when I have the pain as I can’t talk to explain and they are flying questions at me, offering water. “You’ll be over it soon, we all get sore throats”. I feel like screaming but of course I can’t. Even doing stuff around the house is hard. I get the pain when I bed over, or move my head the wrong way, when I get up to answer the phone or door, eating anything. Sometimes even breathing too deeply will sent it off. Sorry this is my getting it off my chest, hopefully you all will understand why. I have felt very alone in my struggle to find out why my throat hurts. Thank you for listening.
sorry your hurting surfin, and wish I could help more than what I write- so far so good?
I’d say you don’t know what it is, Glossopharyngeal nuralgia, says you’ve got pain due to the ninth cranial nerve causing extreme pain in the back of the throat, tongue and ear. Doesn’t say what’s causing it, Bit like me going to the doc and saying I’ve a pain in my head and him telling me I’ve a headache.
Pain started with a mechanical cause, a sneeze, aggravated by neck movement, bending over, moving your neck the wrong way. This nerve has an anatomical relation with your neck which you might explore, could well be of help after two and a half painful years. Surprised your neuro/ GP hasn’t voiced this opinion.
Wishing you better days, after all 2.5 years is pretty miserable, feel your medic could have expressed options. Wishing you well. Thumbs up.
Thanks. Its just knowing others have the same problem is sort of a comfort. I haven’t seen a neurologist. The GP has given his opinion. Glossopharyngeal Neuralgia was one of his suggestions towards the beginning but he had to rule everything else out first. Taking Lyrica has helped immensely dealing with the pain, although I am now groggy and slow minded because of the affects. Perhaps more investigation is needed. At the moment happy pain is reasonably under control and I know its not an anxiety issue.
Hi SurfinNan It has taken around 5 years for me to be diagnosed with GPN. Ithought it was first tooth ache…got ruled out by several trips to dentists then diagnosed with TMJ disoeder and had months of treatment for that with no help then self diagnosed with TN then agreed by gp then sent to neurologist who diagnosed GPN after sighting MRI . I know the frustration og having severe and embarrassing pain. I have been off work for 8 months and perhaps more mainly because of the side effects of the meds needed to keep the pain at a manageable level.
I agree with rara, you really need to get to neuro. Your GP, regardless of how good, is not qualified to Dx GPN.
Case on point, lyrica isn’t the first line med for any facial pain condition, it’s designed for diabetic nerve pain first and foremost. There are other options out there that may work better but you need a neuro.
Hi. Thanks for sharing your story and I am glad you finally got a diagnosis. I can totally relate with your anxiety and depression over these phantom symptoms that no one understands. It took me years before I was diagnosed with TN and years later I was also diagnosed with GPN and ON. You are not alone here. We understand completely. If you have any questions or need any direction please let me know.
Jane
Unless medical care is free in Australia, and you can get another opinion for nothing, why see a neurologist. You’ve got no nasties on MRI, why worry or look for a further diagnosis, when most diagnoses are designed or labeled in order to give a certain prescription. You state Lyrica is helping immensely, a neuro appointment , is only going to lead to a change of meds, referral to a needle or unlikely a knife. In the absence of findings on MRI, your pain, whatever the medical diagnosis wasn’t due to lack of medication,syringes or surgery.
I disagree with not seeing a neurologist. You definitely should. Not only for proper medication but you want to start a relationship with a neuro so if things progress or you get other symptoms in the future, you may need more testing or a different diagnosis.
Mine started with TN in one branch. Since then (15 years) I have been diagnosed with GPN, ON, Fibro and also discovered many of my symptoms are related to my cycle, which has taken me down a whole other road. I have also had testing done for MS and multiple MRI’s over the years looking for answers to other symptoms. I have also seen other specialists here and there, thanks to my neuro.
Also if you have an extreme flare up that neurologist will be integral with getting you pain relief.
I agree. Neuro is a specialist in brain/nerves your GP is not, not seeing a neuro when you have things like this going on is rather like not see a OBGYN when you’re pregnant.
Hi Surfin,
Have TN myself, can totally relate to episodes of not being able to talk, and having “friends” give stupid advice. You are not alone. With all the pain, the lack of knowledge and sympathy is really hard to take. Hang on!
I am a classroom music teacher. Last fall, I had pain in a new place, near the mouth. Whenever I would start to talk loudly, or sing, there it went. Up went the medications, , etc;. no better. Surgery maybe was next.
I decided that I would try something different, with the permission of my doctor(who is a rare combo of ENT/neuro.). I went to a chiropractor.
She said after X-ray that the top vertebrae of my spine were compressed, and that she could help. After treatment, I got much better.
Would this be worth a try for you? I do not know, but I hope that you feel better soon.
And after fifteen years, like a stated earlier, individual gone from one diagnosis to the next to additional, to multiple mri’s , thanks to your neuro, and your basically in the same boat, but you like the colour of his Porche. Kind of my point. More testing we’ll find the diagnosis eventually, after several related diagnoses which may all be related, for what ever reason, but lets try this med.
Then we see in the same thread, help by chiropractic. Anyone who gets wrapped up in the USA with neuro, in the absence of Mri findings ( and that’s being generous), without looking at alternatives is on to a loser. Though of course everyone is entitled, unfortunately through listening to these very specialists, they potentially miss the cause, or rarely suggest an alternative.
Justjane37, in your journey of fifteen years, at what time did you look else where? At the advice of your neuro, or other?
I agree that Neuro’s are mostly pill pushers. But my neuro sent me for a referral for Botox and is sending me to a specialty clinic at Women’s College Hospital for hormonal testing, as pain is worse around my period.
And yes I have seen plenty of DRS…Dentists, Dental surgeon, TMJ specialist, a top Neurosurgeon, a facial pain specialist, a pain clinic, physio, acupuncture, Osteopath, Headache specialist…you name it I have tried it.
The point of a neuro for me is to have a centralized doctor, plus I have encountered other problems along my way and my neuro has been essential is assisting me. Now having said that, every DR is different and I have seen my share of duds and people that have no idea what we go through.
Honestly, the thing that has helped me the most is getting past the anxiety that pain brings, knowing my triggers and proper self-care during a flare up.
I am in Canada so our health care system is different and doctors and testing are free. Unfortunately, many of us are complicated and have more then one issue. For me, neurological problems run in my family. To each their own but I don’t know what kind of car my neuro drives and I think for myself, and do not follow anyone’s orders unless I agree. You have to be your own best advocate!