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.

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

  1. Hello,

    I was released from the hospital a few days ago for treatment of epiglottitis. I was sick with the worst sore throat of my life for 8 days, went to the doctor 3 times in one week. I was tested for strep throat the first time and put on antibiotics, cough syrup, and lidocaine syrup because I got worse overnight. It helped a little but I noticed the pain went further down my throat and then got immensely worse during the week. I could not swallow without the pain going through the roof.

    I was told multiple times it was just a virus until the last visit the doc drew my blood and my WBC count was high (of course!). I went home after the visit and was called back for an x-ray of my throat to rule out epiglottitis and sure enough the radiologist called the doc back with the results positive of having this terrible, terrible infection.

    I was then given the choice to return to the clinic the next day for antibiotics or be admitted to the hospital. I knew that I had to go to the hospital at that point and get the help I so desperately needed. I had never been in that much pain in my entire life and was so glad to be directly admitted to the hospital from the doctors office so I could start to feel better.

    Once at the hospital I was started on IV fluids, IV antibiotics, IV pain meds, and nebulizer treatments. The hospital that I stayed at does not due cultures of the epiglottis due to the risk of swelling the area more. I was comfortable with that decision and know that I started feeling better once the antibiotics kicked in. The hospital did a CT scan one day and it showed swelling and enlarged lymph nodes of the neck, consistent with this type of infection. I was released from the hospital with antibiotics and told to follow up with my primary care physician.

    Moral of the story: Know your body, if you are so sick and in so much pain that you don’t know what to do there is probably something wrong. Be your own advocate! Doctors at walk in clinics might not have ever seen this before and might not know how to treat it properly. You are better off in an inpatient hospital setting for this type of illness due to it’s severity.

    Sincerely,

    Molly Polk

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  2. 30/1/15 hi I went to a e after waiting 8 hours for doctors app not knowing why I could not swollow and felt very wrong i could not wait. The ent said it was epiglotitis worst case they had seen I was rushed to itu and given alsorts of stuff and keept in for a week. that was 2weeks and 2days ago. yestarday I though it was coming back so went back to a e they checked with a camera and said it was ok ans sent me home so I went to my gp as I dont feel right and can feel lump again she gave me stroids again to take bit said it defferently can not come back and that im panicking and its in my head she said i needed to sort myself out and offered me to see a well being person but I declined I just carnt stop panicking

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    • do not panic!!! but of course it can come back. mine did, several times. if you feel your throat closing up call an ambulance to get you to emergency room.. IT CAN COME BACK. YOU MAY BE PANICKING AS WELL, WHO could blame you? if you have medication for that, take it and see if it helps. on route to er.

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  3. 30/1/15 hi I went to a e after waiting 8 for doctprs app not knowing why I could not swollow and felt very wrong . The ent said it was epiglotitis worst case they had seen I was rushed to itu and given alsorts of stuff and keept in for a week. that was 2weeks and 2days ago. yestarday I though it was coming back so went nack to a e they checked with a camera and said it was ok ans sent me home so I went to my gp as I dont feel right and can feel lump again she gave me stroids again to take bit said it defferently can not come back and that im panicking and its in my head she said i needed to sort myself out and offered me to see a well being person but I declined I just carnt stop panicking

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  4. 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?

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  5. 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?

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    • 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!!!!

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  6. 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…

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  7. 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….

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  8. 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

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    • 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.

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  9. 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

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