Feelings of constant, painful sinus/ear area drainage with fluid and air sounds

I am a 40yr.old female, in great health other than this rare problem I have developed. I do not drink (quit 7 yrs. ago), do not take any drugs other than what the doctors have prescribed for me recently. I own a successful floor covering business, I am a vegetarian of 6 yrs. (although I do eat chicken and fish about 2-3 times a week), take my daily dose of vitamins, get plenty of exercise and am 5'6" tall weighing 152lbs. which I am told, looks to be an attractive weight on me. I have a degree in Computer Science and have many hobbies, including collecting rare/depression period glassware. I do not have a medical history that is inches thick. I go to the doctor when I am supposed to (ie: paps, mammograms, dental cleanings every 6 mths, etc.,.). The last time I went to an ER, prior to developing this cursed problem, was 15 yrs. ago to have some stitches done on my finger. In other words, I am not now and never have been in Hypochondriasis. Here is my problem. I have painful feelings of constant fluid draining on the right side of my head, thru my right sinus cavities and the back lower right side of my head, which I understand contain no cavities. The area surrounding my right ear is painful like it has fluid trapped inside and needs to get out. The back of my lower right skull always feels swollen and tender. When I gently push on it (just sitting in bed with pillows behind my head will do this, too) I feel and also hear (people in the room can also hear this "clicking" sound) fluid traveling past my inner ear and exiting out my sinuses or some opening directly into my throat. If I lower my head forward, I get a rushing feeling of fluid coming from behind my ear to my ear and burning near my nose and thru my cheek. My right cheek is always "burning", feels as though fluid builds up there and then finally releases which gives me a temporary feeling of relief. I also have an frequent (off and on for most of the day) "clicking" sound (fluid and air) of draining fluid from my ear area and front cheek. People across a room can actually hear this sound, that's how loud it is at times. I am in constant agony. Laying down, on either my left or right side will sometimes help, but the pain always comes back with this draining feeling within an hour upon standing/sitting. I have had this plague for about 3yrs. now. I intially sought help then, thru an ENT who removed a sebacious cyst from my ear canal. This did not help. The ENT then prescribed (3)courses of Entax and Ceftan, but these did not help.I gave up because the ENT finally gave up and I learned to manage my pain by laying on my right side for hours, which would relieve my drainage pain for sometimes days.The last (4) months have been a living hell. I can no longer manage it this way. About an hour after waking in the morning, my pain and drainage start on a daily basis. I went to the ER (4) months ago thinking I was bleeding in my skull. They did a CT and found nothing wrong with me. I went back to the ENT and was put on decongestants and antibiotics again for 21 days. This made it worse. It was like a faucet had turned on inside my head. He then tried Astelin and Claritin, thinking maybe my mucous glands were over producing, for 2 weeks. The feelings of drainage slowed temporaraly on these meds, but I felt terrible pressure in my head. He put me back on the decongestants and antibiotics and again, my sinuses felt as though a faucet had turned on in my head. A new symptom appeared also. When the feelings of pain/pressure around my ear and back of my lower right skull get to be unbearable, leaning forward  allows this "fluid" to drain (as it always had in the past) but with such great feelings of force that now my head pysically shakes at times rythemically from side to side, sometimes very violently. The feelings of drainage would cease and with that, my shaking would also cease. Also, even as I write this, the "ckicking" sound and feeling of fluid draining is happening accompanied by a physical (can be seen happening) spasming of my throat directly under my jaw. I went to the ER again in agony, they could hear the clicking/drainage sound coming from my head and did another CT (sinus this time) scan. It found nothing wrong with me. I recently had an MRI done. It was normal. My blood work shows nothing abnormal and my SED rate is 1. I saw a Neurologist 2 weeks ago who put me on .5 Xanax (3)times a day and 10mg of Amitriptyline (3) times a day, thinking this may be panic disorder. It is not. I worry about nothing in my life (other than never getting rid of this pain)and am getting married in June to a wonderful man. While the anti-anxiety meds have helped my worrying about my painful problem, it is not solving it. My quality of life is terrible, as my pain is so great at times I can get nothing done. I force myself to go to work everyday, and every night I spend in agony. Since my painfull symptoms happen only when I am sitting,standing or laying on my right or left side or bending over, and all the CT scans and the cranial MRI were done while I was laying on my back (I never have any "drainage" feelings when in this position but still have pain), could my diagnostic tests have missed something that only occurs in other positions? Could I possibly be "leaking" spinal or cerebral fluid while only in an upright position? While I am happy and relieved that my diagnostics revealed nothing life threatening (tumurs, clots, cancer, etc.,.) it is maddening not knowing how, why or what is causing my pain and what to do about it. What am I going to do? Does anyone else out there have this or know of someone who has? This constant right ear, cheek and lower back of my head pain is terrible. Please help me if you can. I'm desperate at this point and will go anywhere and try anything to eleviate this. Thank you so much.
Barb

[CCF Neuro[P]-M.D.-RPS]

Dear Barb:

I am sorry that your having such terrible symptoms.  I am not sure what to tell you.  If you were having CSF leakage problems, then the CSF flow study would have found the problem.  If you had a sinus problem, the CT and MRI would have been diagnostic.  My only suggestion would be to get vestibular testing from a specialist.  There are only a few in this country, UCLA, Mass General, Cleveland Clinic that I know about.  You might have an inner ear problem and maybe a hard to diagnose one.  I am sorry that I am not much help.

Sincerely,

CCF Neuro MD

[Murphy]

Barbidahl,  I felt like I just read `War & Peace'! I share your
pain but lifes accomplishments don't count. I know 1st. hand
your frustration + you need to breathe more & the Xanax will then
work better.  Sounds like my long time cry for help also.  
  8 ys. ago my rt. ear blocked. In short, 12+; Dr's.-Surgeons-
Neurologists-NeurOtologists-Basic MD's-ENTs & including our
famous Mayo Clinic, kinda' implied I was nuts.  1st. 6mo =ear
fullness, swelling. Next came ear-drainage, temple pressure,
swelling under rt. eye.  At 3rd yr., confusion off/on, clicks &
water out the ear causing sleep loss.  All Docs insisted `Ears
Don't Work That Way!' By 4th-5th yr., my career was over & I had
a fear of driving since attacks would hit anytime.  Sinusitis,
allergies, inflammation, need estrogen, infections & phsyciatry
were all mentioned.  Head pressure was so bad, I was back down.
  What didn't wk: Antihistamines, Ceftin, decongestants, & the
Entex (now banned in some states by FDA, contains PPA). Caused
me heart problems & contributes to anxiety.  Basic CT's & MRI =
no answers & blood wk. was normal except for a high Cortisol.
Muscle pains & rt. artery swelling started so I went to an
Internal MD that tried to really help me.  Simply said, You have
to get worse to get helped.  I took charge & hit the internet.
  I wked. in the medical field for yrs. & knew, if it's not
fixed easy, they don't waste the time.  I bought med-bks. & read.
  I asked for & had 3 eartube surgeries that helped the ear vent. Each blocked with infection.  No Dr. would say it though.
  Last yr. I had it removed & simply asked my Internal MD
to request a Coronal CT I read about. He humored me.  They called
next day referring me to a Surgeon.  Yrs. of neglect caused some
infections that went into skull bone that grew into a lg. tumor
in the maxillary.  I go for more surgery soon.
  Run & get this test. I asked many Docs & they said it would be
a waste of $.  It should've be done. I'm 53 & face several pro-
cedures for cancer.  I don't want to scare you but you need this
test to put your mind at ease.  Xanax is a smooth muscle relax-
ant. Helps me pop drainage. Throat spasm is due to Eustation tube
dysfunction. Amitriptyline had me bouncing off walls. Stress wks.
against you.  A CSF leak would be giving you extreme constant
headaches.  Hot compresses help & asprin is a anti-inflammatory.
  I'm dealing w/ my mis-diagnosis from the Md's & their lousy
insults.  I don't want anyone to go through this.  
  Congrats on your pre-nupts but consider the health insurance.
If you use his policy & something is found now, it's a pre-
condition that may not be covered.  I hope I've helped, & you
didn't mind my Vol-2 of your novel. I'm sorry to hear that
someone else has had these problems.  The MD's today just don't
take the time to even hear how afraid we are.  
  

[Barbidahl]

Dear CCF Neuro,
   Thank you for responding to my plea. Any suggestions at all for a possible cause of my problem are much welcomed and appreciated, no matter how remote. I will definitely look into your proposal of vestibular testing. Again, thank you and thank you to everyone that responds to the posts for help. You've helped me just in knowing that a CSF problem doesn't exist and also helped by simply replying. It's nice to know that someone actualy reads the posts and cares.
                           Barb

[Barbidahl]

Dear Murphy,
   Thank you, thank you and THANK YOU! I'm sure you know how it feels to finaly find someone else with these same mysterious and dibilitating symptoms. You and I share an uncommom and unwanted affiction that the medical world does not want to deal with. I have also been refered to psychiatrists and find it not only insulting but just plain ludicrous. This is a physical problem and not a mental one. It's not like I'm going in and telling the doctors that I'm Napolean...I'm telling them that I am in pain and here are my symptoms. Please keep me posted concerning your upcoming surgery. I would truly like to hear from you. You may email me directly at ***@**** I believe we can help each other, if albeit only for sometimes a much needed shoulder. I didn't mind reading your novella and welcomed all that you had written. It was relieving and sad at the same time to know at least someone else out there has the same cursed thing. Please keep in touch.
                      Barb

[caco]

my name is olivia i am 38 years old ,i have myasthenia gravis
i take mestinon (60 mg) 3 time daily, i am very afraid from this disease because it die the person that attacked him , i am suffring from when i am drinking any liquid it exit from my nose
,and suffring from severe cough ,waht is the solution,can i find a very good doctor in australia especially from melbourne?
thank you that you will answer.

[Dardarian]

Interesting...I have had similar symptoms. Actually, ENT's are referring to them as "sinus infections". I have had 9 since the third week of October 2000. My nose is a constant faucet (even as I write, I'm wiping off the keyboard !!) I too am accompanied by right side ear, jaw, face, base of skull and neck pain.That burning, tickling sensation in my right nostril is there, too.

I recently had a C6-C7 cervical fusion oper'n 9/00 and a shoulder arthroscopy this past January.Granted, these operations were necessary and have relieved associated pain, but what is this other nonsense? I was supposed to start work yesterday and couldn't. I am a construction inspector by trade. Can you see me on a jobsite in this weather, snow and below 32 degrees jumping in and out of ditches and up and down ladders with this discomfort ??

The ENT finally determined by CT scan that the large sinus cavity on the left was blocked. One can see the large amount of fluid on the X-ray, but......"Doctor, why is all my pain and discomfort on the right side? Even my teeth and gums are aching !!" He insisted the problem was on the left and possibly in my mind. I suggested maybe the x-ray tech accidentally mislabelled the left and right sides of the CT. Here-did the CT scan. I was so sure I was right. But I wasn't. The left side was surely the fluid -filled side.

Now, my cervical operation neurosurgeon sent me to an oral surgeon to rule out the residual neck pain, as I seem to have had a history of TMJ.

The oral surgeon determines 3 things:
1) I do need left side sinus surgery to drain the fluid
2) referral to a facial neurologist to R/O trigeminal nerve (Nerve #5) neuralgia, and...here's the kicker!!
3) Eagle's Syndrome

What is Eagle's Syndrome (ES)?? Well with the help of my daughter doing a search, we found a couple of sites A good one is www.davidmillerdds.com/pub4.htm (he also has a pub on the trigeminal nerve neuralgia, also). Unfortunately it's 2 years old. I have contacted his office to get info. I don't know who to see; an ENT, an Oral Surgeon, an Orthodontist ??

In the process of searching further, I came along this site. The subject caught my attention immediately.

Now, I'm thinking two things about what I read since we have similar and overlapping symptoms.
1) Are there three independent things going on ? or...,
2) Are they somehow related ??

I finally found an ENT in the state of Maryland who has heard of Eagle's syndrome. I see him 3/25/01.I see a facial neurologist on 3/15/01. I'll report back. Any suggestions, anyone??? Thanks

[caco]

i have myasthenia gravis how i can controle this disease?
please send me the answer on ***@****

[Barbidahl]

I'm sorry you are in so much pain also. This afflication has really gotten out of hand with me. I hope that what you have is only a coincidence to my symptoms. Every MD that I have been to doesn't have a clue. I am in agony everyday of my life. Please keep me posted to any and all treatments, meds, tests and specialists that you may see in the future and I will do the same. My email is ***@****. I just cannot believe that in dealing with such a localized area that no one can figure this condition out. If what you have is the same that I have, you will be the third person (since I posted to this site) that has this problem. Unfortunately, it seems to be a rarity. I have started to correspond to the other person who has this problem and we email each other trying to get to the bottom of this problem. Don't be surprised if in the near future you are directed to seek psychiatric help after you keep insisting on your symptoms, because "sinuses don't work that way" and the feelings you are experiencing are deemed "abnormal". Trust me. My symptoms are as real as a bill from the doctor. Neither one goes away unless something is done about it. My brother is a well respected physician at a NY Hospital. We have spoken for hours on end concerning this medical mystery. He has directed me to all the "appropriate" specialists in my area (Harford area, CT) and I have been a very patient patiant and done all the tests, tried different meds and took them right on time. I have had it. He has finally offered to have me come down to the Big Apple and be seen by someone there (ANOTHER ENT and ANOTHER NEURO) who may give a damn and not pass me off to another MD all the time saying "it's definitely something I would NOT deal in, why don't you go see this other MD". Please email with any and all things to do with this and I will defitely email ya' back. You didn't say in your email if you were a woman or a man. It doesn't matter. I was just wondering if this could be a gender based problem. I hope you are a man. Men seem to be taken much more seriously in the medical world than we "hysterical" females and that would mean more answers to this horrible, cursed and painfull problem. Hope you feel better.
                               Barb

[chrisof6]

A related discussion, Dural defects of the Temporal Bone was started.