Ear, Nose and Throat Disorders Forum - Face Pain, Headaches, 4 Sinus Surgeries (please Help)

Ok, i've posted this in so many forums, but I havne't really received any resonses. So please excuse me if you read this in another forum (headaches, etc...) since i'm so desperate for some help, I decided to post it here as well since it seemed appropriate. I sometimes get responses, but i'm always dissatisfied because no one seems to have anything similar to my main, most persistent symptoms; the symptoms that seem to underly and preface everything else (numberd them below) here the post i'm putting all over the internet in hope of finding someone who can relate:

first of all: hi fellow pain sufferers. I'm a 26 y/o male and i've had a lot of weird pain in my face, head and neck. What bothers me is that i've never seen one post on one single message board (and beleive me, i've searched) that I can identify with; identify with and say to myself, 'wow, someone has these same symptoms. I'm not alone, and now maybe I can start treating my problem instead of trying to search for a diagnosis." my pain is probably somewhere inbetween atypical migraines, tension-type headaches, severe neck-muscle soreness, eye pain and recurrent sinusitis. Now, I know what you all are thinking: this sounds familiar, right? I've read hundreds of posts where people have symptoms belonging to the broad categories of symptoms I just mentioned (tmj-ish/myofascial pain-ish/sinus problems...), but after I get specific about the symptoms I think you'll see how different my case is. So now let me tell you how this feels, and if there is anyone out there who experiences any of these, please let me know. I won't go into great detail and also I will not list every symptom, nor will I detail the chronology of all this, except to say that it all began three and a half years ago and has progressed ever since to include more and more regions of my face/neck/head. For now, let me just point-out the main symptoms that seem to separate me from everyone else i've read about. These are the symptoms that never seem to go away and have been with my since all of this started: here we go...

1. Pain started in, and still resides mostly in my cheeks, nose and eyes. I'll start with my cheeks: this isn't a very deep feeling pain, but rather superficial; at least superficial in that you can grab this pain between your thumb and index finger and literally squeeze it. So, whatever all that tissue is contrived of (muscle, nerves, mayofascia and skin), it all hurts. The pain works a lot like a tempurpedic matress, in that if you squeeze the area, it will hurt much worse for the next five minutes, just like how youre hand-print will stay on the tempurpedic matress after you remove your hand. Please understand, the pain is almost always there, if pressure is on it or not, but it is just much worse if I squeeze it. Asking yourself: "why the heck is this guy squeezing his cheeks if they hurt" well...I'm not. The simple and what used to be releiving, act of smiling hurts. Smiling, in fact, is usually miserable and can make the area hurt worse for several minutes afterwards. Needless to say, squinting my eyes is bothersome as well.

2. I also have pain in my nasal bones. Unlike my cheek pain, this pain is perceived in my bones. It actually feels like my nasal bones are growing. Another way to describe it would be to say that the area is numb, sometimes in a funny-bone or novacaine type of way. So I guess the way it feels is really some mixture of the growing/funny-bone feeling, but with an emphasis on the 'growing' part. Please note, i've had four endoscopic snus surgeries since the begining of 2003. Also, my allergies have increased at least 3-fold in the same time-frame.

3. Now for my eyes. They feel almost constantly strained and/or sore (the eye balls themselves are sore). My upper eye lids are also very droopy and worn-out; very worn-out. In fact, you could say that all the areas I just described (1. Cheeks, 2. Nasal bone(s), 3. Eyes) are worn-out and feel like I have chronic fatigue syndrome confined to only these areas. People comment about how 'stoned' I look, despite the fact that I haven't smoked marijuana since high school (i'm 26 y/o now). I feel like i'm fighting to keep my eyes open and alert looking. Much of the time I just raise my eyebrows up and give myself an intentional robert di'nero look to compensate for my eyelids not lifting properly.

There. I'm done describing the part of my condition that seems much different from what anyone else has experienced. I am begging you who reads this and experiences similar symptoms to please please please respond and tell me that you have symptoms like these. I know many of you can identify with several of these, much like many non-pain-having person in the pain-free community can identify with all of us pain sufferers occasionally (when they have a headache or something). But, please tell me you have similar symptoms if you have them and they get in the way of your normal functioning, working, eating, sleeping; and if they are very pronounced and very bothersome.

Now let me say that I also have a lot of the same symptoms as many fibro/chronic mayofascial pain (cmp) people do. I have horrible headaches, including true classic-ish migraines. For the last yeaer, i've had neck pain so bad that I wear a neck brace around the house. For the neck pain i've had a ton of trp (trigger point) injections as well as botox shots. I have trps all over my scm muscle, and 'suspected' trps in my face and sinus cavaties. I've had four sinus surgeries in the last 2 1/2 years and after each surgery, I still have this annoying, nagging-type pain in my left nasal cavity/septum that I can usually quench with a q-tip by sticking it literally all the way up my nostril until just the very end of the q-tip remains visible. I have pain in the temporal area, just above my ears. This temporal pain is not like a temporal headach, it's more similar to the cheek pain I mentioned above.

I've seen so, so, so, so many doctors to try and assess this problem. Many of the doctors i've seen are considered among the best in the country. I think a lot of the problem with the health care system is, as my cmp doc says, "it's like the tale of the six blind men, each standing on different parts of the elephant, trying to describe to eachother the sorrounding." (really a paraphrase and not a direct quote).

I've been operated on for my sinuses at john's hopkins and georgetown hospital several times, and all the sinus doctors can tell me is that they don't think all my pain symptoms can be attributed to sinus disease.

So, i'm posting here to see if there is anyone else who has my main problem (the cheek, nasal bone, eyes symptoms I first mentioned above). Maybe if someone else identifies with those symptoms, i'll be less reluctant to beleive Dr. Filners (a mayofascial pain doctor) diagnosis of chronic mayofascial pain. But, as it stands now, I have not heard of a case like mine from anyone with cmp. Anyway, i've also had little success finding any other cmp therapist/doc who can properly administer trp injections. It seems as though every other pain doc/cmp therapist in the whole washington, dc area just took a short, one-day seminar in mayofascial pain/cmp. Heck...Many docs still don't aknowledge the difference between cmp and fibro.

Please tell me there is someone who can relate. I've gotten responses before, but usually someone tells me that allergies or sinus disease can cause severe headaches. I'm fine with that diagnosis; but can allergies/sinuses really cause so much pain that a person cannot even work at all? I am honestly at my wits end. I've been unemployed for over a year now b/c of these problems and I feel like i'm fighting an uphill battle, without any hope of ever getting better.
I wish you all the best of luck with your symptoms and sincerley hope everyone can find some form of releif.

-j.P.-

p.S. Here are some other symptoms that occur regularly with my main problem:

-i forgot to mention how there is a near-constant pressure/'fullness' feeling in most of my headaches/facial pain.
-i keep getting bacterial sinus disease despite four edoscopic sinus surgeries; never experienced releif from any of the surgeries; my pain level has never seemed to lessen in response to any of the surgeries.
-i have become almost completely intolerant to alcohol; if I drink it, i'll either get a migraine, or my whole weird facial/head pain problem will become much worse.
-during the first two years of this problem, my symptoms let-up during the late sping/early summer months (maybe just a cooincidene?)
-noticeable eye buldging; swelling of eye lids (i'd say this happens 30% ofthe time)
-severity of symptoms becomes much worse in the winter seasons
-my enviromental allergies have increased 3-fold over the past three years since the begining of these problems.