Okay so this has been a month of h***.
and I need your Help.
So,Hello. First of all I’d like to start this off with a general medical background. I’m a 24 year old man & have had a lifetime of health issues. I was born premature, I had septicaemia as a baby and nearly died/twisted bowels, I have had a colostomy bag since I was 2/half, I’ve had tachycardia 3 times (all when I was 13, all went away within 2 days), fainted all the time as a child (especially in heat), I’ve had eating disorders (TW sorry if that’s triggering for anyone), I’ve had pancreatitis 6 times and had my gallbladder removed and I’m vitamin d & b12 deficient (which I also accidentally overdosed on because the doctor gave the wrong dosage when I was 13. The vitamin d). I think that’s basically everything. Oh and a hiatus hernia. My health was improving from 2020-July 2022. Everyone around me said I was glowing my weight had stabilised after starting creon enzymes and I was back to dancing nearly everyday around the house and making amazing friends. Then covid. I got covid in July and it was mild. I’ve had worse flus. However since then everything has slowly taken a downward spiral. I’m dizzy all the time (this has gotten worse since July whereas until december it was a thing that would happen maybe once or twice a week. This is now constant), I have headaches constantly (especially in the middle of my eyebrow and behind my ears. Idk if that’s relevant here but that’s where it is), full body rashes if I do anything “too much” (legit just waking to the shop), I shake quite often too and I’m breathless quite often. I did a sit and stand test in December and my oxygen went down to 92, my body went into full rash and my heart rate went quite high but not alarmingly high. About 90-105. Nothing too bad, especially given the oxygen. They diagnosed me with long covid and are in the process of referring me to a long covid clinic. This would be fine if it wasn’t for the almost 2 weeks of h*** I have had. On January 1st i was sitting down chilling listening to music after walking to the shop (full body rash but it had gone) and I suddenly felt like I was fainting/sinking. I immediately stood up and said to my mom that I thought I was gonna die or something bad was happening. My heart skyrocketed to 150 and we went to the hospital where I spent the entire car journey feeling like I was gonna heave or faint. They did all my vital tests (ECG, light behind the eyes, blood pressure, oxygen, heart rate, blood tests). Everything came back normal other than a spiked heart rate. When I arrived there my heart had gone down to the 100-120 lane. Next 2 days at home were h***. I’ve been through a lot in life as I listed above, also suffer with deep OCD/anxiety and that’s just gotten worse with this situation though this isn’t happening *because* of ocd anxiety. I’d be able to distract myself with something if it was. Every waking moment I was terrified I’m gonna have a heart attack or a stroke or something. It’s gotten so bad I’ve sobbed about never seeing my cat again. I managed to have slight calm day the day after until I woke up from a nap to go to the bathroom and when I walked down and up the stairs my heart rate went up to 150 again. And stayed there about an hour. Back to the hospital. When I arrived it went back down to 127. But this time my legs and arms felt super heavy and weak and almost cold? almost like that feeling after a long exercise and everything is bruised and tense but…I’m not doing much moving at all. They did more tests. This time they also checked my heart enzymes and thyroid function. Both completely perfect. Infact they said “normal” people have something slightly raised but even my kidneys and liver were fine. Similar to how last month I had a chest X-ray to check for long covid effects and it was also perfect despite my oxygen being not great.
I next day when I woke up I was depressed and again worried I was in imminent danger (still am terrified) and I found videos about long covid and POTS. I’ve been watching them and I think I might have POTS. I’m now not sure nothing bad will happen to me. I nearly fainted twice. The doctors think this is long covid fuelled by anxiety and stress and the anxiety and stress is worsening my symptoms. But even tho I’m obviously anxious, the symptoms pre date the anxiety. And again, I wouldn’t be anxious without the symptoms.
lemme post my symptoms in order
Since Sunday January 1st it’s just…yeah. Started with dizzy/sinking feeling when sitting after going for a walk to the shop the hour prior which resulted in the bad rash and the eyebrow pressure I’ve been dealing with. then tachycardia went up to 150. Also passed bloody mucus from my butt.
Tachycardia dizzy headache has remained but the tachycardia is basically gone when I lay down or sit up. (Mostly. Sometimes it’s still tachycardic when I’m sitting or laying)
New symptoms are
Tuesday - heavy legs/cold warm cold warm/numbness. Loss of appetite completely
Wednesday - not sleeping at all. Barely 2-5 hours if THAT. And it’s never all at once. Forgetting my mom left the room
Thursday - bladder pain and peeing frequently but not a lot comes out. Stopped pooping as much.
Friday - feeling incredibly faint & a tingling tongue
Saturday - heaving and ear numbness. Penis now shrunken (I’m sorry for that TMI) and looks like it’s hidden or inside my body. Have to tap it to move out slightly to pee. Stingy pee.
Sunday - inability to sleep with extreme hip pain
Monday - suddenly sleeping for hours and hours and hours and waking up drenched in sweat yet not sweaty
Tuesday - feeling like I can’t breathe. Random rash spots on wrist and arm. Worse brain fog. Forgot I saw my dad at 4am bc the cat pooped. Cold to touch according to my mom (and my legs) but doesn’t feel cold at all when I touch with my hands. Peeing became even less.
Wednesday - dehydrated urine, pain, weird taste in mouth, dry vomit, frequent urination. beginning to refill temperature but not for long and face feels warm. Eyes begin to burn at tv light. Horrible short term memory (completely forgot I added eyes burn at tv light). Worried I’m gonna forget everything and everyone as it hurts to focus and think on anything other than the current. Peeing now back to normal
Thursday - heart keeps skipping beats when resting. doctors appointment (oxygen was fine even though I kept feeling like I was gonna pass out just sitting up right and felt breathless), even worse memory, peeing still normal
Also overall loss of interest in everything that I viewed as coping mechanisms for previous health issues or difficult times in life. brain fog also becoming a bigger problem.
I am wondering if other people diagnosed with POTS or autonomic dysfunction of any sort experience symptoms like this. If so, what did you do to get better. What drs did you see and what treatments helped?
Love, Morgan.
