Eppiglottitis: Dear Innocent Souls, YES, You Can Get It Again. (I Should Know) 4/2013

English: Title: Torture Chamber of the Inquisi...

English: Title: Torture Chamber of the Inquisition. From ‘A Complete History of the Inquisition’, Westminster, London 1736 (Photo credit: Wikipedia)

The plight of those of us who have suffered from Eppiglottitis, an illnesses/virus/ torture/infection has gotten way with too much pain already and NOT just in the United States. People from many countries around the world share the pain. I know that for sure. There are searches for Epiglottitis on my blog, always. Today there was a search, from some poor, innocent soul who asked: “Eppiglottitis, is it possible to get it twice?” Oh, dear one, I just want to give you a great big hug and plant gentle kisses on the top of your sweet, innocent head.

Yes, you can get it again. In my blog I have written about the two times I had Eppiglottitis and how I wanted to beg, borrow or steal major pain killers from hospitals, doctors or become a gangster and hang out in the streets to score illegal drugs (okay not really ). People really do not understand the amount of pain that this  illness brings and frankly, unless your ENT (Ear, Nose and Throat, Doctor) has had it, they don’t know a thing about how painful it is either. Not for one second. The only people who know are the people who have had it or are going through it now. Do I smell the beginning of a support group?

What does it feel like? It’s like taking a scalding steak knife and searing your huge, ugly, raw open wound, repeatedly (obviously with no anaesthesia) over and over again. It is impossible to swallow because the pain is so excruciating but really what choice do we have? The last time I had it I was on a cocktail of medicines, steroids, a throat rinse, antibiotics and whatever else they threw at me but what I needed was a morphine drip and a sleeping medicine that lasted a solid week. I wish.

When I couldn’t stand the pain anymore I dragged my body to the medical group, to the ENT offices before they opened and BEGGED for someone to see me. I was in so much pain that I was crying and I looked like all hell, pale, distraught, helpless and hopeless. This is not something I would normally ever do. I was so grateful that they let me go sit in the office chair, who knows, maybe they were afraid of me. I WAS afraid of me. When the doctor came in, he scoped me, which requires putting a tiny tube through your nose to see beyond your throat. He literally gasped and said “How the hell did you get THAT?” I was not in the mood for rhetorical questions nor was I feeling combative. I just wanted him to tell me how on earth to get rid of this demon that had taken up residence in my body.

Apparently it’s not common to get and very difficult to get rid of, I live in fear of getting it again and I assure you, every Fall I think about it when the weather turns chilly although I am sure I could get it at anytime. Another doctor suggested that if I get it again to go see an Infectious Disease Doctor in addition to my ENT. Great, that’s what we need, to waste more time in doctor’s offices waiting to be treated. I’d rather check into Rehab so I could become a drug addict for pain relief until it healed.

I’m here for support, questions and comments. I am not a medical doctor, no, I’m better. I’m a patient who knows exactly what you are going through. Ask away or just complain, it’s not anything I haven’t complained about already.

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My Fellow Epiglottitis Peeps- A Follow Up

throat diagram

Image via Wikipedia

When I first had my two bouts with Epiglottitis (OUCH)  no one had ever  heard of it. Even my ENT said and I quote: “how the hell did you get that?”  If I could have spoken in spite of the pain I may have said ” How do I know? You’re the doctor.” But speaking, swallowing, breathing was pure torture and being in such intense pain makes you less than quick with a comeback. When I first posted “Calling Epiglottitis A Bitch Is A Vast Understatement” I wrote it for myself. Why did I have to get this pain? But, if it’s something unusual, it softly calls my name.

When I had Epiglottitis I told people it was the worst pain I had ever had, that childbirth was a cinch in comparison. When my two awful experiences had finally passed I asked every Dr. and medical person, if I could SOMEHOW prevent this from happening again. The answer was an unequivical “NO.” I scheduled an appointment with my internist just to discuss this and begged, pleaded and cried for the vaccine that is given to children. Another “NO.”  She said it was for infants only. That seemed drastically unfair. After all, if those babies could have it why couldn’t iI have it? Give me 100 times the dose if you want, anything not to have to go through horrific, burning, stabbing, knife-in-the-back-of-the-throat pain again.

How does one get it? What is it? Apparently, it’s a virus. I know, when there is something doctors don’t know for sure they call it a virus but apparently this is one and a nasty one at that. It could be related to the Herpes Simplex virus, I was told, but maybe not…..It is frustrating and painful and so far this year (fingers crossed) I didn’t get it but I do live in constant fear of getting it again. No joke.

Did anyone get it this year? I  hope you didn’t or if you did that it was a mild case (oh, who am I kidding there is no such thing as a mild case, it’s outright torture.) My ENT treated it with Prednisone, Valtrex and some special rinse, (and maybe something else, not sure) it helped…..after what seemed like an eternity.  It will not go away on its own, beg for pain medication.

For those of you who wrote back to me with your comments, thanks. We helped each other. Never before had I heard of this bolt of lightning in the back-end of the throat, and hearing from you made me feel better, validated. Unbelievably, my blog post “Calling Epiglottis A Bitch Is A Mild Understatement” gets so many hits on my blog consistently. As you know, I blog about everything: food, Fibromyalgia, feelings, fun, Hashimoto’s Thyroiditis, Chronic Pain,TV, music, food, children, parents, grief, love and loathing. I blog when I am happy or sad, about funny things, family (they are not too happy when I write about them) my dog and dessert. But, this post about Epiglottitis constantly and consistently gets hits and I’m wondering why. Do more people have it now? Did it become an epidemic? I thought I was the only one in the world that had it, (clearing my throat) twice.

Here’s to you, my Epiglottitis Peeps, If anyone has any updates or insights, let me know. Or if you have had it recently, I am here to commiserate. I wish I could offer you a magic cure, I wish I could offer myself a magic cure  but none exist. I’m here, though, to share your pain. Believe me, I understand it completely!

p.s. One important tip: if you have had this once, and feel a bad sore throat coming on, go directly to an ENT and not an Internist. My ENT gave me that advice, don’t wait around a week, like I did, waiting for it to get better. Get it scoped, diagnosed and treated before it gets any worse.