Hi,

Please help, pain in my neck and upper jaw are driving me crazy.

I'm a 39 year-old male, for the rest healthy, but for the past few years I've been suffering from complicated and severe unilateral pains in my neck, upper jaw and throat, and I am looking for clues. If you recognize this pattern of symptoms I'd like to hear from you because I can't wait to learn more about what it may be. At least some of it seems to match with Eagle's Syndrome, but I haven't yet been able to get that confirmed. Any experience with that would be great too!

Through the past few years I have seen many doctors/therapists and tried a wide variety of medication, but will not write about all those tiresome and often disappointing efforts here (the resulting story would simply be too long (and probably too boring) to publish here). But the bottom line is: I have unilateral pains in my neck and mouth/face, the pains ruin my life, I barely sleep, I am running out of ideas for diagnosis/treatment (which terrifies me) and I am turning to the internet for clues. Does anyone have a clue what this might be??

Below my symptoms. If you experience similar pains/symptoms please reply, I would be very grateful. Below my description of symptoms, in no particular order (not sure if each and every one is related, but I just wrote them down because they may be related):


1. pains in upper jaw and upper neck (right side, below the ear), for more than 10 years, getting worse with time. The pain is dull and deep.

2. the pains are worse when lying down. It doesn't matter if I sleep, after about an hour or two the pain in my neck - radiating to my upper jaw - becomes very bad and I invariably wake up in a lot of pain. In my bed I am constantly turning, trying to find a position that doesn't create the pain, but such a position hardly exists (it does sometimes, see below). During the night I get out of bed many times for the pain to alleviate a bit. Getting any real rest is close to impossible.

3. Eustachian tube inflammated, it feels like there is inside pressure on right ear. And that ear is somewhat more sensitive to loud noises.

4. voice is hoarse a lot and I keep clearing my throat. Some friends can sometimes tell by the sound of my voice whether I am in pain or not.

5. yawning sometimes gives me a short sharp sensation in the back of my throat.

6. in the tonsil area under the skin there seems to be a bump that is very sensitive (if I softly push it, it radiates tremendously and is painful for days).

7. sinuses on the right side are often a mess.

8. limited range of head rotation.

9. had a bump on the right side of my (upper) neck, physiotherapist massaged it and is now gone (but since that moment the pains got worse).

10. for the past two years a persistent cough that is resistant to different anti-biotics etc.

11. brain fog. During day-time the pains are worst during the morning hours (because pains are worst at night), I have trouble thinking clearly. But the pattern of pains can be unpredictable too (or rather: I not have found the pattern yet.).

12. I feel miserable a lot of the time, vertigo and completely out of energy.

13. the position of my head matters. Pain is worse when I lie down (whether I sleep or not) and during the night I wake up many times because of (often terrible) pain in my neck. In bed I am always turning trying to find an optimal position for my neck, but that position hardly exists. If I lie on the painful (right) side it gets worse, lying on my left side is better (less bad). The most remarkable thing is that when I lie on my left side and supporting my head with my hand (pushing head to right shoulder) the pain can sometimes disappear completely. When that happens I suddenly can start thinking again, it can be a remarkable transformation in seconds. This leads me to believe it is not a purely neurological and permanent disorder, because it can be influenced by mechanical changes.

14. for the rest I am a healthy person, I don't smoke, hardly drink, have no history of (family) diseases etc. As a child I had a tonsillectomy and as a child I fell on my head a few times. Because of severe pains in my upper jaw a good deal of (in hind sight probably unnecessary) dental work was done.

15. various X-rays and two MRIs were made, nothing unusual was reported.


Medication hardly works. I take some NSAID painkillers and sometimes stronger ones to help knock me out at night in order to get a bit of 'sleep' from time to time.


I feel there is reason to believe that the origin of the problem is mechanical, not neurological. It appears not to be herniated discs, TMD, arthritis or trigeminal neuralgia, cancer, because those have been looked at and ruled out by different doctors. Eagle's Syndrome? I went to an oral surgeon, but he had no clue what ES is, and multiple ENTs didn't come up with it either. Is there anyone out there who recognizes these symptoms? What if it seems very likely to be Eagle Syndrome by the looks of it, but no doctor can diagnose it?

I posted this in the forum for back issues too. Many thanks for any help, I would really appreciate it!