My burning pain can be constant, intermittent throughout the day or can even be nonexistent for a few days. I noticed that the masseter stretching and sleeping with a pillow under my mandible decreased the chance of having the burning by 80%. It is not triggered by eating or anything else that I know of. But is relieved by chewing gum, doctor says it maybe forms an edema that somehow eases the pressure and stops it burning. I only experience burning pain on the left side of my mouth. Usually I will first get the burning sensation around the pterygoid hamulus area and it can then spread to the tongue and both lower and upper gums, but never more than to the middle of my tongue, there’s a bit of burning above the tonsil as well, but doesn’t go very far back. I believe it’s caused by the glossopharyngeal nerve, more so because the pain stops at the middle of my mouth. Sometimes I notice it starting when I have my head in a forward position and to the left, I tried correcting the position by turning my head to the other side and it has helped it ease up.
Not related to the burning I also experience paper cut like pains in my throat sometimes. Like hundreds of paper cuts all at once.
That is very interesting and helpful. My son has tongue and throat burning at some level constantly. It can be the entire tongue bit it’s the back and the throat that r extreme. It gets a lot worse when he eats certain foods and drinks. Dr Hackman doesn’t know if it’d his styloids or glossopharyngeal nerve damage from his tonsillectomy 12 yrs ago. Idk if u had any surgery that could have damaged your nerve as well. My son is set to have both styloids out Dec 18 so I will be posting on how it goes. They measure 3.5 and 4. He has several symptoms but the burning is terrible and drives him nuts. I’m sure u can relate! Thank u for replying back with the detailed information. He has not tried the stretching or pillow. I hope things improve for u!
@Rozmarincek - Have you found a doctor to help you with your ES pain or do surgery? I know our Doctors List wasn’t helpful for you.
@Kerri - I’m glad your son has decided to have surgery. I think that’s his best shot at relief from his current pain/burning mouth/tongue. Even if it doesn’t go away completely, it may at least reduce to a tolerable level. I’ll be praying for that.
Surgery date is on my calendar. 
Sure appreciate that.
Sorry for the late reply! I totally missd the notification and while browsing the forum I noticed your reply. So my situation atm is I have to decide if I will proceed with surgery - first on my left side and then eventually ob my right side. However I have been doing much better since again starting Cymbalta (I took it once before but before the vascular issues began and it did not do anything at that time). I was asking in the FB groups if anyones neck, head, neuralgia pains got better on it and got mixed replies, what’s even more interesting I am having less and less dizziness. Again I resorted to reading medical literature and came across an article stating that Cymbalta inhibits platelets (I experience more bruising and a thrbocytopenic rash/purpura since restarting the drug). I know it’s only masking the symptoms but I wonder if it is worth waiting to do the surgery untill this also stopps working or will I have ao much damage then that the surgery my not even benefit me… have you maybe come across any posts from people whose situation got better with Cymbalta?
I am also linking the article: The Antidepressant Duloxetine Inhibits Platelet Function and Protects against Thrombosis - PMC
Hi, the US medic webinar spoke about using anti platelet medication to help. In that case Dr Hepworth used Plavix. I now use Aspirin low dose as that is anti platelet med also (he mentioned this too). It’s side effects include easy bruising but it has reduced my head pressure/pain and helped me sleep more than before. Also improved my resting heart rate overnight. It is not the drug you mention but it does have the same antiplatelet effect you describe.
I am post surgery. If it helps you then my all means continue taking it if you can tolerate side effects.
If your JVs are compressed I would probably go ahead with surgery to help. But that’s a decision only you can make. Take care. D
It’s always a dilemma, the risks of surgery vs the pain etc of leaving the styloids in! The only comments I would make is that if you have any vascular symptoms they’re maybe impacting you more than you realise- I’m not sure if you’ve been diagnosed with vascular ES, or if your issues are more the nerves and pain from the styloids?
Also it’s worth considering how easy or quickly you could get surgery, many countries have long waits, so could be miserable if the Cymbalta stopped helping & you couldn’t get surgery for 6 months or longer? If you would have to wait a while you could ask to be put on the list now & then review it nearer the time?
No worries, @Rozmarincek! I sometimes take a long time to reply, too.
Do you have a surgeon in your area who does ES surgery or who would you have do it? I just read your other post about the lack of response from Dr. Heim even after you sent him payment for his opinion which is not good. I hope you either get the report or get your money back!
We have other members who have had good symptoms relief from taking a nerve pain medication but I don’t know which of the several nerve pain medications available has been most helpful to our members. I do agree with @Jules that if you have vascular ES, having surgery would be a good idea. If you don’t have vascular ES but your symptoms are debilitating enough to keep you from being able to live your life normally, then surgery should also be considered.