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

[Barbidahl]

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