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The Suspected Throat Infection that Changed my Life

KarlyPickering

Byline: Karly. Click here for Karly’s blog.

Hello everyone. My name is Karly. I’m an 18 year old who is struggling with difficulty swallowing both food and liquids.

Two years ago, I went to the doctor with a painful, swollen throat and difficulty breathing. I was initially diagnosed as having pharyngitis and was put on a course of antibiotics. The antibiotics didn’t help, so I was put on another course of a different antibiotic. After this second course, I was told my problem was viral and that the glands in my throat were inflamed. Eventually most of the symptoms I had went away but I was then left with a distinct feeling of food getting caught in my throat. From this day on, my life drastically changed.

Everything I tried to eat felt lodged in my throat. The fear that followed was something I had never experienced in my life. It got to the point where I’d only eat solid foods when I was really hungry or when I had to eat with family or friends. Sometime later, I only would eat certain solid foods and then eventually, I was only having smooth/pureed foods.

Around two months later, I was due to start year 12. My lunch consisted of things like yoghurt, custard and mashed potato. I remember feeling physically tired, I was unable to do my work like I used to. I was easily stressed and I drifted away from all my friends, except one. But this friend started to get frustrated with me. We always used to eat together and meet up to do sport, swim, shop, etc. but not anymore.

Just a month or so into school, there was a particular day where I realised I definitely was not up to coming to school anymore. I felt dizzy, sick, hot and weak. I also had some weird feeling in my head. I thought I had been bitten by a bee or something, as I had been sitting outside and there were some around. I went to a teacher I had the previous year who I liked and trusted. I started to talk to her but ended up crying instead. She took me to the sick room and another teacher brought me an electrolyte drink and yoghurt. I told them both that I cannot swallow food and don’t know why. I was picked up and taken home, knowing I wasn’t coming back.

Since then, my problem has gradually worsened. Even smooth/pureed foods started taking a lot of effort to get down and now I am only able to manage liquids. Soup and nutritional supplement drinks make up most of my diet. Even these things take a lot of effort for me to have. Not only do things stick in my throat but they do in my mouth now too. I also have a range of other symptoms, most of which affect my throat as well.

In the beginning, I thought this would go away, just like a cold or something. I never knew what I was in for. Even now, this is still hard for me to accept. I still get frustrated, scared and cry sometimes. I will keep fighting and looking for answers because I want to be able to start my life.

I have found that writing a blog helps me cope with my swallowing problem. Here is a link to my blog if you would like to read more of my story: meonswallowing.blogspot.com.au.



16 Comments On “The Suspected Throat Infection that Changed my Life

  1. Gordy Rogers Reply

    Dear Karly,
    Have you had a full workup from a local speech pathologist/therapist, who specializes in swallowing? I am a speech pathologist and I can tell you that in hospital settings, at least here in the US, speech pathologists take the lead in diagnosing and treating swallowing disorders and ENTs and other docs often defer to speech pathologists, as we tend to be better trained and experienced in this area. You may need a modified barium swallow or other test(s) done. At this point, I don’t think you should accept that it is simply an infection (viral or bacterial). And it may be worthwhile to get this done ASAP. Good luck!
    Gordy Rogers, M.S. CCC-SLP
    http://www.brooklynspeech.com

    1. Karly Reply

      Hi Gordy.
      I am currently seeing a speech pathologist who specializes in swallowing.
      I see.
      Well this speech pathologist i am seeing did refer me to an ENT as i have never seen one before.
      Sadly i missed that appointment due to being in hospital recently for this problem and the associated weight loss, etc.
      I had a modified barium swallow in march of this year, which showed an abnormality. I was told it’s most likely muscle weakening.
      I had another during my recent hospital stay and apparently it was normal. I wasn’t shown the results this time round though.
      I definitely feel this has always been something more.
      My current speech pathologist is amazing. I haven’t been seeing her for long, so i just have to be patient.
      Thank you.

  2. Pru Reply

    Hi Karly. We met on the medical forum/blog for dysphagia.

    I didn’t realize that your difficulties began with a throat infection.

    So did mine. I had to have rounds of antibiotics for a strange strep and then prednisone for possible thyroiditis and then a 7 day course of IB profin and protonix for possible cortoid ademia. The inflammation in the throat after the infection started a problem with swallowing over time. It’s been 7 years. At times I can’t get my upper muscle to work well along with my lower LES muscle to swallow properly, but its not Achalasia. The GI Specialist said, sometimes when people have a certain amount of inflammation with infections, 70% of them have chronic swallowing problems… the 30% fully recover. I know how you feel about your friends. That happened to me too. Unfortunately, also with some of my family. They thought I had some anxiety disorder, etc… I can assure you I’ve always been an independent go getter and high functioning thinker who loves Christ. So this has challenged me to slow down quite a bit. I hate that you are so young and experiencing this and of course I hate that I am so young and going through it too. I decided at 40 not to have a baby because I couldn’t guarantee that I could keep the right vitamins/minerals and nutrients in my body. One more thing… I miss water. 🙂 I pray that in time we fully recover and that we get the support we need from those we need. Sincerely, Pru

    1. Karly Reply

      Hi Pru.

      Woah, all those goes at treatment and yet nothing helped.
      Since my problem started, i believe that infections must be able to embed themselves into structures in our bodies.

      I was checked right away for achalasia and i was told i don’t have it either.

      I have heard of such stats before from other people. No doctor i have gone to see has brought up such a thing with me though but obviously these things can happen.

      Yes, some of my family bring up anxiety a lot and others don’t get it at all.
      Although my parents are finally starting to get on board with it all, which helps, especially as i live with them.

      I have the same worries for my future. How can we carry a child or do lots of other things for that matter, without the right nutrition.

      I send my love to you Pru. I truly feel your pain. *hugs*

  3. alexis Stevenson Reply

    Hi Karly I am a speech and language therapist my specialty area is eating and drinking difficulties. I’ve just come across your message. In the case of any swallowing difficulty you should be seen by a Speech and Language therapist/pathologist. It is also good that you are seen by ENT to rule out any biological obstruction. It would also be good to have a Video Fluoroscopy to see the mechannics of your swallow. It may also be good to rule out any underlying thyroid problem. I would also consider a CT scan to determine if there is any nuerological cause.
    good luck

    1. Karly Reply

      Hi Alexis.

      Some of what i’m going to say is similar to the above but i don’t mind 🙂

      I am seeing a speech pathologist and regularly now i’ll add.
      She is doing muscle strengthening exercises with me for the suspected muscle weakening problem.

      I have talked with people who have seen an ENT specialist and a lot of these people have gotten somewhere with them.
      Therefore i am going to ask my speech pathologist about re-scheduling the appointment i missed.

      I had a barium swallow in hospital recently which showed normal. I don’t understand as my problem has been getting worse overtime.

      The docs in hospital did bring up scans such as an MRI but they changed their minds about doing that and other tests for that matter, which i honestly find frustrating.

      I’ll make sure i get checked out more. I think my swallowing pathologist is my best bet.

      Thank you.

  4. JoAnn Reply

    Hi Karly,
    I have HBP, (I am 63) and began having trouble swallowing when I was put on one of the HBP medicines. It so happens, that this drug and other HBP medicines can contribute to swallowing problems in some people. My ENT was aware of my HBP medicine but unaware of the side effects for some people. So please investigate any medicine you take to see if a side effect could be trouble swallowing. Also, a good nutritionist can help build the good bacteria in your gut, as antibiotics adversely effect the good bacteria in our gut and it takes a long time to rebuild them.
    Good luck.

    1. Karly Reply

      Hi Joann.
      I’m sorry to hear that but glad you picked up on what was causing the swallowing difficulties. If we know something, it helps work out the rest.
      Not that i can relate but i am interested in whether you’re still on any medication/s for the HBP, or was something else sorted out for you?
      I hope your swallowing has improved.

      I have been on medications in the past but currently am only on a contraceptive pill for period regulation and pain control. I do know this can cause swallowing problems. Trouble is i cannot come off of the pill as all my terrible symptoms come back.

      I am going to be seeing another nutritionist soon and will ask about probiotics and the like. Several people online have now told me it could be a gut problem caused by the antibiotics.

      Thank you.

  5. Douglas Reply

    Dear Karly,

    First, Thank you for starting your Blog, and second (and I really owe you a thanks for this) your ordeal has made me feel ashamed of myself. I started to have this problem about a year ago. The difference is, I am 65….many times I forget to count all the many blessings I do have and only think of what’s wrong. I feel terrible that you have to face this at such a young age. For me, the previous post from JOANN ,is what is causing my problem. Side effects from HBP meds, but this can also happen with foods or something you are injesting that your body can’t handle. My family is praying for you; that your specialist will narrow this answer down for you…..GOD Bless, stay strong and NEVER give up!! Doug

    1. Karly Reply

      Hi Doug.

      There is no need to feel ashamed. Sadly, dysphagia can pretty much affect anyone, at any age. We all react to what we’re going through in different ways too.
      Just remember, not everyday is the same and if everything seems bad, it won’t be that way forever.

      I’m sorry that you’re struggling and hope that you improve.
      If you ever need/want to chat and this goes for all of you, you should be able to find my email and other ways to contact me through my blog.

      Thank you.

  6. Carol Littley Reply

    Hi Karly,
    Our daughter had a craniotomy for a tumour on the brain stem in January 2014, followed by strokes to both sides of her brain in the three weeks after her operation.
    She was left totally paralysed and needed a trachiostomy to prevent aspiration. She is fed through a PEG and cannot have any food via her mouth. Her main goal is to eat meat lovers’ pizza. She said that she would give up walking to be able to eat and speak again.
    She recently had pneumonia – we believe more due to the fact that she is living in aged care with very ill people and lots of germs around. She is beginning to walk and moves all limbs and is working on speaking again with a Passe Muir valve for a short time, which helps with her communication, as she was a teacher of special ed for disabled children before this catastrophe entered all our lives.
    She has been able to have a few mouthfuls of thickened liquid to practice swallowing – with the cuff up on the trachy – to prevent aspiration. That has stopped since the pneumonia, but we are hoping will begin again soon. I think if anyone understands what you are experiencing, it is our 29 year old daughter. I search the web for help and we will continue to do everything we can to give her the opportunity to be her best and live her best life. That’s what brought me to your blog.

    1. Karly Pickering Reply

      Hi Carol, your daughter is extremely strong and brave considering what she’s gone/is going through. You’re both in my thoughts. I’m always willing to chat via my email which is linked to my blog. We are all in this together. ~ Karly.

  7. Naomi Reply

    I am having swallowing problems and pain when swallowing and a sore throat and for over a month now. I suffer from dizziness and anxiety as well. It is not being caused from my anxiety. It all started with a sore throat. The doctor said I had strep throat but even after taking the antibiotics it hasn’t gotten any better, only worse. I have been tested and retested. No mono, no strep, nothing showed up on the CT Scan with iodine or whatever they use and nothing showed up on the throat Xray. It’s weird because it’s literally only been a little over a month. They said it was Pharyingitis too but I’m sure it isn’t. I am seeing an ENT tomorrow afternoon. Hoping to get a regular or rigid laryngiscopy (or both) done tomorrow so I’m hoping that they can figure out what’s going on. I have been to doctors and hospitals to no avail. I guess if the ENT can’t figure it out I’ll try a speech and swallowing doctor and a stomach doctor. Hoping to figure out what’s wrong soon. I’m praying for you as well Karly. Get well soon hon.

  8. Lindy Reply

    Hi Karly and other posters,
    I have similar swallowing issues. I have been dealing with this for 18 months, and it all started with a horrible sore throat. I’ve even had surgery to remove a suspect “mass” from the base of my tongue but it offered no relief. Since all of this started, I have gotten terribly sick with other issues. I started having allergic reactions and anaphylaxis out of nowhere. I have had terrible dizzy episodes and rashes and just random craziness. Nobody understands what’s going on with me, except my husband who sees what’s going on. I’ve been told it’s “globus” and it’s anxiety. It isn’t. It’s not in my head.
    I wanted to ask if any of you have ever heard of or been diagnosed with Mast Cell Activation Disease. I haven’t been formally diagnosed, but I can tell you that ever since that throat infection that I have this. It can and does affect any body system, and although I don’t know that it directly causes the difficulty swallowing, I do believe that it’s closely related. Would love to hear if anyone else may have this.
    Hugs to all of you struggling with this horrible issue. It’s the hardest thing I have ever faced.

    1. DESTINY SAMAROO Reply

      Hey Lindy,

      I have a very similar problem. Mine all started with a bad viral infection. I’ve been to emergency twice, my family doctor and a walk in clinic twice so far. Had a blood test and stool test so far. Results came back ‘normal’ apparently. I react to different food the same way that you are. Food that that I’ve eating my whole life with no problem (I’m 23). I barely eat. It feels as though my throat becomes inflamed and the food sticks in my throat. I’ve been brushed off and told that it’s anxiety related and I should go on anti-depressants. That was the least helpful thing considering my physical symptoms and lack of depression. Although, I’m starting to feel depressed about all of this. Here I am, barely eating (against my will), weak all the time, unable to function like I use to. It’s hard. I’m empathize with you so much.

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