Mystery illness - loss of hunger, increase in heart rate upon standing.

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I am at a complete loss for my current health situation, and if anyone has any info/tips it would be super helpful. I am a 21 year old girl, never any health problems and nothing of this sort runs in my family. One day at the beginning of June 2018 I woke up with terrible bloating and digestive issues after taking ibuprofen/aleve for a couple of weeks. I thought this was fluke as this has happened before, and I figured after a couple of days I would go back to normal. Nothing went back to normal and weird bowel movements still persisted. I thought I was facing some sort of IBD so I had a colonoscopy (all clear) endoscopy (all clear) - no H-pylori, no celiac disease nothing. Had full blood panel, thyroid tested, screened for auto-immune diseases, lyme, CT scan, all negative all NORMAL. At the beginning of July it escalated to the point of where I now never feel hunger I constantly feel full, it's been almost 4 months of feeding myself food. This is terribly stressful as I am in college and everyone wants to go out and eat and I feel as if that has been stolen from me. On top of all of this my heart rate has also been a major issue. Whatever has been going on has seemed to induce POTs syndrome like symptoms in my body. Laying my HR is at 60-75, standing it shoots up to 120-140, 160 on some mornings. I live in Florida and I used to LOVE the heat, now I can barely stand going outside because of whatever has been going on in my body. I haven't fainted which I am thankful for, but my symptoms appeared out of THIN air and I am so frustrated as to why and or how I have developed these mystery symptoms. I have an appointment with an Electrophysiologist tomorrow and I am demanding more testing and if he needs to send me to further specialists I will gladly go. I feel as if I am at the end of my rope and all of these symptoms are due to some genetic/point mutation in my body as it is unexplained. I'm not sure how to deal with forcing myself food for the rest of my life, or not being able to enjoy the outdoors/beach any more. This is the definition of living hell for a girl who is 21 years old to be going through such a bizarre unexplained illness or set of symptoms. If ANYONE has any sort of information and or tips/help to provide for me please do. I am at a complete loss and seeing all my friends enjoy day to day activities and go out on the weekends absolutely breaks my heart as I used to be the most happy/outgoing girl with everything ahead of me, and now I have the worst anxiety because I feel like a total freak and no one will ever want to be with someone so troubled. Keep in mind I look completely healthy and normal so it is very deceiving. 


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7 Replies

  • Posted

    It most definitely  sounds like autonomic dysfunction. What we’re you taking the Aleve for just prior to onset? We’re you sick (virus/infection)? Did you have a vaccine within close proximity? Often these things occur on a post-viral/post-infectious basis, but there are other causes, of course.

    Where do you live? I’d try to find a neuro-immunologist that specializes in autonomic neuropathy as it’s most likely immune mediated. There’s a great doctor in Dallas (Vernino) and a few at the Mayo Clinic in MN. If you haven’t already had the full neurological

     autoimmune panel done (not ANA or the antibodies associated with it, but perhaps this one or a full neuro/paraneoplastic autoimmune panel). 

    • Posted

      I was taking the Aleve for leg pain as I worked as a hostess and needed to be able to stand and handle it. I thought that the Aleve is what caused my digestive issues but apparently that was not the case. I am so mind boggled as to how earlier this year I was the healthiest I've ever been, then randomly something completely changed my body sad I am so scared and exhausted of feeling this way. If it were one or the other symptom I wouldn't really care, but both are very scary and I can no longer even go outside and enjoy the weather it is terrible. There is a mayo clinic here in Florida that I am going to get my primary care to refer me to. I feel as if something in my body shot and I am now stuck this way. It is a terrible way to think but I am terribly afraid every day of what happened to me. I was screened for auto-immune antibodies and nothing came up. So it makes me believe this is not auto immune related. I definitely need further testing done, it just makes me so nervous when everything has come back normal and I feel like I have been robbed of my life every day.

    • Posted

      I know you said you were screened for autoimmune, but they likely only did an ANA screen (direct/ELISA) and that doesn't pick up the antibodies that target the nervous system such as the Voltage Gated Potassium Channel, etc., There are a group of them often associated with dysautonomia, so I'd check the tests you've already had, but I'd bet they have not run them yet. IF positive, there may be treatment, but you need those tests for insurance to approve treatment (such as IVIG, etc.). Also, if you haven't already, I'd look at the Dysautonomia International website. They have a lot of great information, videos, doctor database, etc. 

    • Posted

      How would you suggest asking for these tests? My doctor currently thinks I am a complete hypochondriac so I am going to have to find someone who will listen to me, which would most likely be at a mayo clinic. I've been afraid my entire life I'd be stricken by a mystery illness and I clearly got what I wished for. I hope there can be a treatment for this, whatever may be going on. I'm just afraid I will have to live this way and it is not a good feeling to feel full 24/7 and set reminders to make sure i've eaten, or having a heart rate up to 130 during the day, it is completely bizarre. The only thing that ever did show was on my EKG it indicated I had a Mobitz II heart block, but this was later dismissed by my cardiologist who said my heart was fine. I am wondering if she may have overlooked something due to my age. I guess I will find out when I see the electrophysiologist in two weeks! Let me know if you have any other suggestions you are so helpful, thank you for taking the time to reply I really appreciate it!

  • Posted

    Yeah, unfortunately that’s a common theme, doctors like to blame everything on depression/anxiety, especially unusual symptoms that are typically subjective (although, your heart rate variance is anything BUT subjective, and the Mayo will likely do a tilt table test and other autonomic functions tests to confirm and have objective findings). There’s no doubt the brain is a very powerful thing, after all, placebo groups wouldn’t exist if it weren’t, but you can’t argue with a 30+ increase in heart rate upon standing, etc. All of your symptoms scream autonomic dysfunction. I think you’ll be happy with the Mayo. I went to the Mayo in MN and it was a great experience. Their FL location isn’t as large as MN is their “hub”

     but I’m sure they still have fantastic specialists. Also, once you do autonomic testing, if any is abnormal, they’ll for sure test the antibodies I mentioned previously as to determine the cause. 

  • Posted

    does you heart rate stay stable or fluctuate? im guessing autonomic dysfunction but get heart conditions ruled out first 😃 then push for autonomic and hormone(gland) testing , you want a TTT if possible 😃

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