Calling Epiglottitis A Bitch Is A Vast Understatement

Visible epiglottis at the back of the throat o...

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I have had epiglottitis twice; it is an ulcerated part of your epiglottis, below your throat, hidden in thieves. It is the worst pain I have ever had and I’ve had it two years in a row. Nobody knows what causes it, they think it’s a viral infection. As much as I have BEGGED for answers on how to prevent from getting it again, there are no answers. The doctors shake their heads kindly but have no information.

The first time I had it the ENT ( Ear, Nose,Throat Specialist) scoped me through my nose and saw it he literally said “How the hell did you get that?” Those were not comforting words to hear. I don’t know how I got it and I don’t know how I got it again. I just knew that this was the worst pain I have ever had. Childbirth was a breeze compared to this long, incredibly painful illness.

Has anyone out there ever have this monster of an illness? I’d be interested in knowing. The most my doctor could do was promise me to give me pain medication. If I could, I would prefer being asleep for the ten days that I have it. It makes sore throats seem like a cute tickle in your mouth. It feels like a hot, serrated knife butchering you every time you have to swallow.

Don’t come again, you mean and evil illness. I’ve had enough.

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37 thoughts on “Calling Epiglottitis A Bitch Is A Vast Understatement

  1. There are quite a few comments regarding HiB as the cause of epiglottitis but that’s not always the case. My infection was caused by a strain of Streptococcus. Strep throat is fairly common – it’s just bad luck that the bacteria attacked my epiglottis. Perhaps this is what’s happening with some of you who’ve had repeat episodes of epiglottitis? It’s important to immunize against HiB so if you’re up-to-date with vaccines and have had this more than once, strep is a likely culprit. Stay well!

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  2. It’s comforting to read I’m not alone with this horrible illness. I had epiglotitis in Jan 13, I was hospitalised for 2 days and went home and felt very unwell for another 2weeks. It was frightening. I am a fit and generally healthy person and it hit me hard. I have been discharged from hospital today after my 2nd bout. Luckily I got to hospital quickly and they recognised the symptoms and gave me intensive steroids and anti biotics. They let me go home after 6 hours. No one can tell me why I have it?

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  3. You guys have got me worried now! I had this when I was about 5 years old, and it completely shut off my airway. My mother thought i was choking on food and she saved my life. When the paramedic arrived he simply said it was Epiglottitis and that ‘It would never happen again.’ Well seems lightning does strike twice with many of you! My 3 year old son seems to suffer with his throat a lot as I did as a child and I am getting a little concerned!

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  4. Hi, hope everyone’s doing well… It’s the girl who posted before (and had Epiglottitis 3 times previously). Well I got it (again!) last week, along with severe tonsillitis, bringing me to a total of 4 times in the last 5 years – so now the NHS in native UK, have agreed to take my tonsils out, in a few months time when the swelling has totally gone down… If this blog is still up in future I will keep you posted as to whether having no tonsils prevents the dreaded Epiglottitis/Tonsilitis… I hope so! Wishing you all future health and happiness!

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  5. I am just recovering from it now. It was excruciating!! In a matter of hours I went from “crap I am catching something” to “OMG somethings really wrong”. I was very fortunate when I went to the ER and wasn’t just turned away with “a virus”. The ER doc listened to my strangled voice, saw that I was struggling to swallow my own saliva and moved quickly. It took him all of 3 mins to diagnose before shoving that awful nose cam down; meanwhile he had IV set up and running. ENT confirmed. That was by far the scariest moment …. This is not a common infection; we may need to intubate.
    One week later, I’m still feeling that dry tickle; but I am kicking its ass!! 🙂

    The worst thought is catching this again… considering I work directly with the Public!!! 😦

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  6. Pingback: Epiglottitis | Find Me A Cure

  7. I had Epiglottitis early this year and iv never had so much pain. It took 2 weeeks for anyone to know what was going on. i couldnt eat, drink or swallow at all. i kept being sent home from the doctors as they could only see the top part of my thoat. Finally my doctor took me seriously and sent me to hospital and they did the whole camera up my nose thingy, found out what it was and was put on steriod drip and anitbiotics. i am currently waiting for my doctors appointment as i feel like its coming on again. This is not somehting anyone would want. fingers crossed i dont have it again!

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  8. People who suffer from this might want to read more on the Internet, because you can’t avoid or keep from becoming ill if you don’t understand the illness fully. More importantly, every doctor, hospital and/or specialist can have a culture done to identify if your current illness is viral or bacterial. No person should leave not “knowing” what the CULTURE identified as the cause. You have the right to insist on a culture, and if you think about it, its the cheapest test compared to ICU, surgery, or days in the hospital or meds. Prevention is always BEST and its your health that depends on knowing!!

    As an example. Viral is most often passed from one to another “in air”, like a cold germ, so staying away from people who are sneezing/coughing etc is just good sense. Bacterial infections most often comes from our direct contact, such as touching an object then our mouth/nose etc without washing our hands. This is why your County Health office can test “objects” for Bacteria. When hospitals encounter a viral out break within their hospital, they check and test the heating/air system first for the possible cause of the spread. On the other hand, if a Bacterial infection breaks out from within, they test objects, such as sinks, bed tables, door knobs etc.

    Washing your hands often can possibly bring a different outcome. Daily doctors encounter the many illnesses people get, but rarely get ill. Why? If there are 365 days a year, minus 52 weekends as an example, they have roughly 313 days in contact with sickness up close compared to us. If we came in close contact only 50 days a year just think how much more time and money we would spend sick each year. Most people come into contact under 10 to 20 times per year. But the one thing doctors do is wash their hands! They also eat healthy, fresh fruit, veggies, and plenty of vitamin C plus other boosters, but they get the proper daily requirements in fresh whole foods. Yogurt is an excellent source to keep good flora in the mouth and intestines. A true medicinal mouth wash daily also keeps throat infections at bay but reducing germs and bacterial.

    Below is ONE type of bacteria that is most often the culprit with epiglottitis but ONLY if its from a BACTERIAL infection.

    Most often, epiglottitis results from infection with Haemophilus influenzae type b (Hib) bacteria. The bacteria spread through the air in tiny droplets when an infected person coughs or sneezes. The infection starts with a high fever and sore throat. Breathing problems can come on quickly.

    So yes, it can spread, meaning contagious. Your health, wallet, husband, employer, children and YOU deserve to have it tested by the lab growing a swab in a petri dish to confirm what ails you for sure so you can make efforts to PREVENT it or infecting those around you. We are in a day and age where certainly it can’t be said we don’t have the technology to test DNA, virus or bacterial agents!

    Hope this helps and I wish you all well. No one should endure the stress, pain or risk of death that comes with this condition.

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    • Where have you been all my life? So informational, thank you. I hope never to get it again but just in case, it’s good to know. Was recently diagnosed with a hiatal hernia in my esophagus, could there be any connection to these two conditions?

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    • I know this is an old thread but maybe I can help someone who comes across it later on.
      Haemophilus influenzae is a species of bacteria commonly found in the microflora healthy throats, so a throat culture of healthy person may just as well present with this bacteria as one who has a festering infection with it. The only test to confirm an infection in the case that it is H. Influenza, would be a blood or a cerebrospinal fluid test.
      My doctor suggested that most cases of epiglottitis were most likely due to this species, and if not are most certainly bacterial- calling for a course of antibiotics anyways. Do not pressure your doctor into getting a culture of this done as no laboratories will even have it on their menus. You can however ask for the blood test or the cerbrospinal fluid test (not worth the pain!) Do make sure to get a strep test (which can be preformed by a swabbing and subsequent culture.) This would be a rare cause of epiglottitis but is worth getting done as it is easy and quick and if it did happen to be the culprit, a more appropriate antibiotic could be prescribed.
      Lastly, since many posters seem to be getting this horrible illness more than once, go get vaccinated! Vaccinations started somewhere between 1988 and 1990. Prior to that time, most cases of epiglottitis were pediatric, but now it is more often found in adults (albeit still rare) who were born before vaccinations started.

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  9. My 8 year old son had this a few months ago, and it was horrible to see him suffer that way. Now everytime he gets a sore throat we all get very nervous. He’s sick again at the moment and I’m not sleeping, just watching him. I really hope he never has to go threw it again and i wish for you guys to kever have to experience this again either.

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  10. So surprised to find this blog. I am a 23 year old female, who has had epiglottitis (aka supraglottitis) 3 times… After always having had good health as a child, I caught glandular fever at 14, and after that, always suffered with sore throats tonsillitis etc. A couple of days before my 19th Birthday I got really sick, I thought I had tonsillitis again, however I was sent home from the doctors and A&E numerous times as they couldn’t see anything in the front part of my throat. The third night of A&E silently begging (as i couldn’t speak at this point) for help, they did an x-ray. Immediately I was blue-lighted to a different hospital with and ENT given a shot of morphine and put on a drip of steroids to get the swelling down and I stayed there for five days, and on release was given a long courses of drugs to keep the swelling at bay. About 10 months later the same thing happened again, although this time as I knew what it was – I managed to catch it and get some help a bit earlier, and was only in hospital 3 days. Then it happened again last year aged 22, in hospital for 3 days again this time. I looked for blogs at the time of the first illness a couple of years ago, so glad to have found this now… I went through similar experiences of being offered to swallow painkillers and cut them up – not an option! And being told ”this is really a child’s disease, we don’t know why you would catch it as an adult” I have had my H B vaccine, so i would be really interested in any support/advice or shared experiences of how to prevent this happening again. The pain was very intense, worst the first time, and difficult because you can’t isolated it, you constantly need to swallow which makes it feel as if you have a knife cutting your throat, pain your ears and head – I really don’t want this problem to reoccur, please post if you can help? Thanks!

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    • There is nothing more I would like to do than HELP you and me and the thousands of other people that have written. I also used to get sore throats often as a child, tonsillitis, etc. I have asked numerous doctors and there is NO prevention. Believe me, I cried when they told me this too. Next time, I get it they suggested an Infectious Disease doctor, something to think about it. I envy your morphine drip as I had to swallow pills that were virtually ineffective. I had to use a gargle and swallow medicine too. I went to an ENT (Ear, Nose and Throat Dr.) for this after my Internist couldn’t “see anything.” He used scoping (tube down your nose to see beyond your throat) and asked me how I got this???!!!!! I got it again the next year. Apparently there is a vaccination you can get as a baby for this but NOT GIVEN TO ADULTS, I literally begged my dr’s including my children’s pediatrician to give it to me but they won’t. Please keep in touch, I just got your message now, this moment. Write back. Laurie p.s. You don’t know how many response I get to this post, more than all of my others combined!!

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  11. I am an adult and I had it too. Oddly, my problem was not the pain. I could not breath without sticking my tongue out. I nearly died by suffocation and very nearly had my neck cut to put in a breathing tube.

    I actually recall the pain being bad but not anywhere near as bad as you describe.

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  12. I had epiglotitus when I was 21. Had a hard time swallowing, went to an urgent care, and they told me I had bronchitus. They gave me huge pills to swallow. I remember crying, trying to chop them up into a powder because I could not swallow them. I also noticed that my neck seemed to be inflamed, and hurt on the sides. Finally, a family member to me to the hospital when I told them it was getting worse and that I felt I couldn’t breathe. Once an ENT took one look at me, stuck a tube up my nose, and started telling nurses to quickly get me to ICU, and to monitor me because they might need to open up my throat. I stayed in ICU overnight, and then stayed in the hospital for several days. Worst, most traumatic experience I’ve had in my life. And currently, I am starting to have the same symptoms. Very sore throat, inflamed neck, very sensitive to touch. No fever, but having a hard time talking and swallowing. very bad cough when I lay down. I am experiencing fever like symptoms, but again, no fever. If not better by tonight, might need to go to the emergency. Is it common as an adult, to experience epiglotitus twice, since it seems to be so rare?

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    • Please go to your ENT NOW!!!!!!!!!!! it’s better than going to the ER since they usually don’t know how to scope but don’t wait. Apparently it’s not so rare since SO MANY people read this particular blog. Please go, and don’t wait and let me know what happens. Good luck, Gretchen. I’m crossing my fingers for you. It’s the worst pain I have ever had, I dread each winter. Regards, Laurie at hibernationnow

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  13. At this time, I am recovering from this condition at home after being released from the hospital yesterday 😦 my stay only being less than 48 hours. This was my 2nd bout with epiglottitis …. My Doctor said I am one lucky person. My throat still doesn’t feel right, I have been running little fevers, shaky, stomach problems…..but I’m now on mushy food…was sent home with an antibiotic and a food plan. I must say I’m pretty nervous about the fact that this is my 2nd time with very dangerous health issue. Why me? Is this something I will have to watch for the rest of my life? I’m thinking about talking to a health professional about this this….what is making me more prone to this than others? I would like to know if there are others out there that have gotten this more than once.

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  14. i did some research…. & i found something on it…

    Hib bacteria can cause many types of invasive disease, including meningitis, pneumonia, cellulitis (skin infection), septic arthritis (joint infection) and epiglottitis (infection of the epiglottis, causing obstruction or closing of the windpipe). Thus, although it’s sometimes said that the Haemophilus influenzae type b vaccine is given to “protect against Hib,” this phrasing is not technically correct. The vaccine protects against the diseases caused by Hib, which are numerous and can be severe. Collectively, these Hib-caused infections are referred to generally as “Hib disease.”

    in most of the info i found its called Hib vaccine – which is given in a mixture with the hepititis b vaccine. If you go to Google and search Heb B vaccines for Epiglottitis if should bring up alot of good information! I hope this helps! I have had a life time of chorinic strep throat and tonsil abscesses it SUCKS! i feel your pain!

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      • I hope you don’t catch it again, I did it. but at least I knew to head to the ENT at the first sore throat sign. they scoped me too, through the nose. I heard there was a vaccine they give to children and I begged for it but they refused to give an adult the same vaccine. Imagine!!!!!! I share your pain!!!

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  15. i really hate to hear this from you guys….. i’m an EMT- Intermediate and in my basic class i remember reading that after you have epiglotitis you should get something called a HepB vaccine….. its a vaccine specific for epiglotits. Maybe this will help! Good Luck!

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  16. YES! thank you i’ve been looking all over for people who have experienced this! I had it feburary 2011, I woke up one morning struggling to breath and unable to swallow painkillers or talk properly. That evening I went to the hospital and got sent home as they didnt know what was wrong with me! The next two days at home where hell as everytime I went to the doctors he sent me home as he thought i was phycologically blocking myself from taking the painkillers he had given me! I eventually ended up in the hospital on my 3rd day of not eating or drinking, still really struggling to breath but severally dehydrated and anxious! The doctor was so shocked when he looked up my nose and down my throat! I was kept there for 8 days and lost 2 stone! I’m also only 16 and the blood tests showed I was also suffering from glandular fever (mono) this meant my immune system would have been low, I’m wondering if this could have been an influence? But yeah it was the scariest and most distressing experience of my life! thank you

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  17. I have also had to go through this horrible, scary, and very painful experience. I was just on here trying to figure out if it is common to get it AGAIN..and I was hoping for a different answer than what I am seeing. It was about 3 years ago…I was feeling a bit under the weather, but headed to a concert with my dad anyway. Half way through the concert I had to leave…and I was shocked how quickly the symptoms took over me. I was in so much pain, could hardly swallow without screaming, my neck and eyes hurt, I had a fever…and apparently my vitals were out of control when I arrived at the hospital. The weird thing about this was…as a child i remember getting severe soar throats just like this, and I wonder if it was the same thing but never turned into anything serious until this past time. All I remember from being at the hospital was them taking me into the trauma room and asking me to breathe in this mask because you need oxygen. Little did I know..they were knocking me out..because my throat was too close to closing up. As a matter of fact they told me if I would have went bed that night I would have died in my sleep. A nurse told me she had seen this illness about 6 times in her career and mine was the worst case she had ever seen. I woke up 5 days later, after they had me in a drug induced coma and tubes and eveything down my throat….it was horrible. I was on all types of meds and steroids and I literally had to teach myself to walk again…i was very weird when I woke up, was confused, and acted as if I had no idea what was goin on…it took me about 2 weeks to fully recover and get back to my normal self. It has left me with severe post traumatic stress…and here I am now with the soar throat, neck, and headache…afraid to go to sleep because I would rather monitor my symptoms…but, too afraid to go to the hospital since if I do I may not ever come home, or at least for a few days. This is such a scary situation and I would not wish it on anyone..and certainly not as severe as a case that I had. I never did hear about what exactly caused mine…but Im wondering how many times it can happen to someone and what can I do to help it or stop it. I have also had a cold for the last 3 months so I a wondering if that has something to do with it…however, I can not remember if I had a cold the last time. This soar throat always seems to strike me around this time..last time it was the end of May! Now, I am in the end of April….coincidence? who knows…i cant find enough studies about it to really answer any of my questions…i just keep finding a bunch of stuff that says the same things and basically explains what it is…..IF ANYONE HAS ANY INFORMATION LET ME KNOW…IS THIS CONTAGIOUS? SHOULD I WORRY ABOUT MY KIDS? AM I GONNA HAVE TO WATCH FOR THIS THE REST OF MY LIFE…..

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    • I KNOW, it’s horrible, it’s the worst pain ever because you just can’t prevent swallowing. I thought it was more painful than childbirth. Truly. I had it twice, one year after another, around this time and I know I live in fear of getting it again. My doctor told me it was viral (but don’t think it is contagious-you should check) Needless to say no one in my family got it either time.I didn’t have as severe a case as you but it hurt so much I dragged myself into the Dr.’s office without an appointment (and I would never do that) and just cried.My dr. looked and scoped (not fun) and said “how did u get that????!!!) There are no preventative measure to take. Mine started with a sore throat and ended in agony. I was given a throat rinse, steroids and some pain meds. nothing worked. If you guys have any more insights, let’s let each other know. thanks for writing.

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  18. Not sure if we had the same, I had epiglottitis about two weeks or so ago, I was in the hospital for 3 days. Worst pain ever, it cause my airway to close over 85% and I’m feeling like it’s coming back. Not fun.

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