My Fellow Epiglottitis Peeps- A Follow Up

throat diagram

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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.

16 thoughts on “My Fellow Epiglottitis Peeps- A Follow Up

  1. Hi, about two weeks ago I was hospitalized with this and it was horrible. It came on so fast, and was rushed to the hospital when I could no longer speak. I was wondering if you knew, if it was possible to get it again quickly? After being released I was on very strong anti-biotics and steroids, and it seemed to do the trick. However, The past two days my sore throat as returned on and off, and now my lymph nodes in my throat are starting to be sensitive to the touch. Could this be coming back this quickly? How far apart were your two episodes?

  2. I thought it will never recur…
    I had it feb of 2012. My neck below my left ear was really swollen. I couldn’t speak not swallow even my saliva because it was very painful. I was rushed to the ER and there they gave me 5 types of antibiotics thru IV.

    I hope this is just a simple sore throat for i would never want to experience that pain again.

    Anyone knows what causes the recurrence?

    • it’s viral that’s what i was told and i’m so sorry but I did get it twice. worst pain I ever had. don’t be like me and wait too long. if it is just normal pain ok but at the first sign of the torture pain, get scoped, start on the meds. please let me know how you are doing. every since I wrote my first blog “Calling Eppiglottitis Is A Bitch Is A Vast Understatement” people keep writing about it. GOOD LUCK!!!!

  3. I thought it was just once in a lifetime thing. I got mine last feb 2013 and was hospitaluzed for 5days. Couldn’t speak nor swallow even my saliva! so i was on a dextrose and all of 5 antibiotics passes thru IV which was very painful.
    Now I am having the same symptoms (though my neck isn’t swollen now) and Im searching why does it recur?

    Im hoping and praying this is just a simple sore throat…

  4. Had it 4 years ago…almost died. Thought it was strep. Went to Dr., got antibiotics, but got worse. Ended up in the ER. Nurse asked me, in a snarky tone: “is it really THAT bad?” (Bitch!) ENT came in, did the scope, rushed me to the OR. Prepped me for a trach, if they couldn’t get the vent tube down. Was in a drug-induced coma for 5 days. So scared that it will come back. Every time I get a sore throat, I wonder….

  5. I had it six years ago and nearly died. My doctor said it was just a sore throat and with each day it got steadly worse, tempature difficulty breathing and swallowing razor blades he evenually gave me anti-biolics. My mum took me to the hospital and I had a lucky escape..I have also been living in fear of its retun and two days ago developed same symptoms this time I got drugs right away but it is worse what should I do

    • have u been scoped by an ENT dr yet? the need to look down past your throat, it’s thru your nose. they can see what’s going on there. that’s how they saw my epiglottitis. I had several medinces, antibiotics, pain meds, and a throat rinse that had some kind of stuff in it, steroid? not sure. go to your ER if you have trouble breathing. I too, live in mortal fear of it coming back. good luck. let me know how it goes.

  6. had a trachotomy when i was three do to epiglottitis. i am now thirty. i have no pain but i have the feeling like somthing is stuck in my throat. i get scared to go to slee[ thinking that it might sweel like it did when i was three. twisted my ankle badly about a month ago didnt go to the doctors. i think i compromised my immune system and thats why i have this damn feeling. i need to stop drinking and smoking for sure. I WANT TO GO TO SLEEP

  7. Epiglottitis – a post that continually gets hits! I bet the same people who are hitting on my Butterfly Fish post think that Epiglottitis is a fish!

    Let’s trade and see what happens. . .

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