Eosinaphilic Eshophigitis Attacks

[Stardawg]

I am 37 years old and for the past 3 months have felt like I am goig to die very soon.

I was diagnosed with EE in Feb but didn't think it was that big of a deal.  My symptoms have forced me to the emergency room 5 times because I have felt my heart rate take off and behave erradicly.

Every time my heart and blood checked out fine.  They have did every scan on my body that can be done.  I am still worried I have a life threatening disease or heart or brain problems.

Is this all from EE.  Does anybody else out there have these thoughts?  

I have discomfort in chest with occasional points of pain that seem to move around.  Shortness of breath and it seems like the middle of the night when I get hit with spasms in my esophagous and heart accelleration.  I sometimes have felt some kind of surges through my arms and head when these attacks hit.  I am scared to sleep now so I take an Ambien.

I take xanex because I am worried about attacks coming on.

I started to watch what I eat, but it doesn't seem to help.  Am I allergic to everything all of a sudden.  I was fine for 36 years - now I am falling apart!

I have lost 10 lbs in the last month.

What can I do here?  Will I live?

Matt

[parttime]

I am sorry to hear about your recent frustrations with EE.  I was diagnosed for the 2nd time with EE and this is what has helped.  (Oral steriods for one month. the doctor gave me a tapering dose.) Unfortunately for some reason, EE can exhibit pain in the chest, jaw, back and in the area just below your rib cage.  If you have reflux as well any kind of activity makes the pain worse.  When it is in its most acute time, it can make you stop eating, since eating can make the pain worse.  I lived on Jello for about 3 weeks and gradually went to the fruit cups with peaches or pears only.  
As for you being allergic to everthing. don't think that.  Your not.  They only think it's allergies becuase of the types of cells.  If you can tolerate the steriods you will get better, but it is very slow and very easy to aggravate.  On top of EE I have reflux which causes my esophagus to spasms..you may have something similar.  I take Prevacid, zantac for the acid suppresion as well as Levbid )that decreases the spasms) and I use Nitro spray for the in between spasms.  The best advice I can give you is to try some of the foods and eat very slowly.  When you feel the pains start if you can sit quitely and drink some decaf tea with a heating pad on your stomach or even back that will help .  I hope I help.  Good luck.

[ChrisAAA]

stardawg - [see my last paragraphs on allergy cures]
I'm sorry to hear about your difficulties and myself am experiencing (over the last 6 wks) significant spasms in the esophagus, particularly when I first lay down at night.  The roving chest pains you describe was common for me 2 yrs ago during a similar battle with these GI symptoms (circa March 2004).  By the way in 2004 I also experienced a "floating feeling" in the left arm - this actually was the lead-off symptom for the 2004 battle that revealed what may be GERD (but I wonder if not Crohns or EE).  Similarly for me a cardiac workup showed a strong, healthy heart.  My blood pressure has always been good, cholesterol ok (200), lungs good, I exercised by running 30-40 mins 3 d/week for many years, and so on.   BTW I'm 44 yr old male, 5'7", 195 lbs (need to lose 20 lbs) but generally quite fit.   I need to confess I've usually eaten too fast in my life, not properly chewing food.  In the last 6 yrs I started alcohol and coffee, to my regret - should never have touched them given 38 yrs of never touching them.   Never abused alcohol but did abuse coffee - the latter I have cut way back on.

Currently in 2006 pain I have is only focused, dull chest pain under the sterum, and at the same level, in the center of the back.  However, 10 days ago I felt like my chest organs were being pushed up into my throat- the swelling was radical, and my neck felt puffy and pressured.  These symptoms also occurred in 2004, but less intensely.  In 2006 these puffy symptoms have passed, and now for the last 3 days I have the joy of being short of breath - I can't seem to expand my chest enough to get a proper breath (that's a scary one).  This happens only every day or so for say 4-6 hrs.  I've never ever been short of breath like this, anywhere, except after a fast sprint or equivalent.  However, in recent weeks I've been feeling dizzy after sitting, or when looking left or right.  All symptoms in total largely match the discription of hypoxia.  That's not good.  I noticed exercise exacerbates the breath deficit, but mainly after the exercise.  O2 tests on fingers showed good O2 at DR office.  Hmm.

Regarding Allergy, I read recently that Crohn's disease had an experimental "cure" in 22 of 23 cases using pig whipworms drunk in gatorade.  The whipworms infect the GI tract but can't invade the body.  The result is a low-grade fever for a few days, and somehow this resets the immune system so Crohns is cured.   Since Crohns can occur anywhere in the GI tract, I wonder if this might work for EE, which apparently involves white blood cells in the esophagus lining.  

[Crohns:  most popular theory is that the body’s immune system reacts abnormally in people with Crohn’s disease, mistaking bacteria, foods, and other substances for being foreign. The immune system’s response is to attack these “invaders.” During this process, white blood cells accumulate in the lining of the intestines, producing chronic inflammation, which leads to ulcerations and bowel injury...]

[Kevin Pho, MD]

Testing the heart - with a stress test and echocardiogram - would be a pretty comprehensive evaluation.  I would assume that various scans that you had would rule out major GI disease.  

Eosinophilic esophagitis can also lead to some of the symptoms you describe.  

Inhaled steroids that are swallowed is normally the first treatment (i.e. swallowed fluticasone).  Esophageal dilation as  well as serial upper endoscopies can also be considered.  

I would discuss treatment with your gastroenterologist.  If anxiety is an issue, medications to treat this should be optimized.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_b