UWU what's this?? (´･ω･`)???
basically, i had a bunch of conditions before covid that doctors never picked up on (despite some very long, intense medical history!!!) and then AFTER covid, they kicked up and got bad enough that they couldn't be ignored. I spent a handful of years doctor-shopping for one who wouldn't say I was "just anxious, now lose weight and go home." ᕙ(⇀‸↼‶)ᕗ It was SO frustrating.
and after a LOT of research, I found out what was wrong with me (sort of) and got diagnosed. YEARS of this. YEARS!! I just want to tell my story somewhere, and what better place than this? Plus, maybe someone will come across this and find something helpful. Doctors are notorious for dismissing health conditions like these, especially if you're AFAB, overweight or not white.
My conditions₊˚⊹✮
I am diagnosed with the condition dysautonomia, specifically the one called NCS, or Neurocardiogenic Syncope. Other names for this form of it are vasovagal syncope, and reflex syncope. A more commonly-known form of dysautonomia is POTS, aka, Postural Orthostatic Tachycardia Syndrome. They are similar, but different. It is more or less a fainting disorder, but for POTS the main (but often not only!) trigger is being in an upright, sitting or standing posture.
For NCS, the triggers aren't posture related inherently, and they can vary from person to person. For me, being startled, seeing blood or raw meat, high levels of stress, anxiety or fear, walking or physical activity, overheating or getting too cold, and getting sick are my main triggers. Also laughing hard, or coughing/sneezing.
On top of this, I don't have a formal diagnosis as the process is very long and complicated, but I am being treated for MCAS. Mast Cell Activation Sydrome. Basically, I'm allergic to... allergies.
Another condition that varies from person to person what the triggers are. (๑`^´๑) For me, the triggers change sometimes, some different foods that indicate I also have a histamine intolerance- histamines are a natural response to allergens among other things, and are released from mast cells on exposure to an allergen. So I have a condition that over-activates my mast cells and releases histamines, and a histamine intolerance. I'm also allergic to mold, scented products (sometimes) and smoke (certain woods/plants burning). Also my own skin oils!
Interestingly, histamines are something that build up over time and exposure, so although it can get life threatening if I don't pay attention, the allergens aren't that bad for me as long as I don't overdo it. A handful of peanuts? I'll be fine. A little smoke in the air? I'll probably get some inflammation. But spend the day around a campfire, eating chocolates, and a dinner of grilled cheese? If I don't take an emergency allergy medication like Benadryl, it could become anaphylaxis.
The following, below, will be a big ramble of information that people have found helpful in the past. I want to put a BIG DISCLAIMER that you should not diagnose yourself with these conditions. The treatments are dietary and lifestyle changes, but they're ones that can negatively impact your health if they're done incorrectly or unnecessarily.
Take that seriously! This is information to take to your doctor if you're concerned because ever since covid, people have been reporting these syptoms a lot more frequently, which makes sense. These conditions have potential links with viruses and illness in general.
So! when I first started having issues in the early stages of the pandemic, it was after I was very sick. During the time doctors said don't come in for testing unless you're so sick you're in danger. The symptoms also weren't things I hadn't experienced before, and they were in the middle of a lifestyle change, so I wrote them off. I was getting fatigued after walking home from work, getting shaky and weak sometimes, and handling the hot summer VERY badly. But that wasn't anything new, just worse than normal, so I brushed it off as adjusting to being more active.
I had just moved to a new place, and started walking 4-5 miles in a day, most days of the week. I had a new job, a new routine, and a new diet after moving from the east coast to the the west coast... (⇀‸↼‶) Little did I know...
It got worse very fast! Feeling fatigued, shaky and weak turned into being constantly dizzy. If I wasn't laying flat, I so dizzy I couldn't stand up. A brief walk around the block had me gasping for air, even though not long before that I was able to walk multiple miles at a time. At the same time, I was under some very major stress. Without going too into detail, job problems, relationships and scary things were happening in my day-to-day life and I wasn't handling it well.
One morning, I woke up and my muscles just weren't muscle-ing. I couldn't keep my fingers closed around a glass of water, I could barely get myself out of bed. My legs were trembling like crazy when I walked, and every time I ate, I'd get an upset stomach. I went to my doctor, and she said I was overweight, sedentary and anxious. She told me to eat less sugar, salt and fat, drink more water, work out, and practice mindfullness. Then she did basic bloodwork, which came back normal, and sent me away.
Somewhere in all this, I started getting... hot flashes, kind of. Where my face would turn red, and hot, and my skin became dry and (≖ω≖) flaky. Yuck... tmi. But it was unmanageable. Medicinal shampoos weren't helping. I changed my diet. It wasn't helping. My stomach was getting bloated all the time, and I always had an upset stomach, and the dizziness had gotten so bad I couldn't climb stairs.
My bedroom was upstairs, so I'd climb up and lay in the floor at the top, trying to catch my breath. I ended up buying a walker with a seat, to help me get around when I needed to leave the house. I noticed if I took breaks, sitting and breathing slow, I could go on for longer before the dizziness and weakness would put me on the floor.
I saw another doctor, who basically said the same things as the last one, and I listened to the advice I was given. I ate less sugar, less fat, less salt, and drank more water. I had noticed certain foods made me feel worse, so I was cycling through cutting out various things- milk, meat, sugars and starches, and paying attention to how I felt during that. She ran another blood test, which was normal, and that was that.
I took that information to ANOTHER doctor, who sat down with me for a few minutes. I told him everything, and a couple of other things that had started recently. Like my throat feeling tight sometimes, wheezing, and the lymph nodes in my body feeling hard and painful. He was SO rude to me, and basically said the same things as the last doctors- I was overweight, sedentary, had a bad diet, and so on. He was rude and condescending, basically said if the blood tests were normal, I should consider losing weight. So I just walked out mid-appointment and didn't go back.
Discouraged, I lost my job. I had to move back to the east coast with my family. I couldn't work, I lost the ability to do the things I enjoyed. I couldn't figure out what was wrong with me! But then, one day, my wonderful boyfriend (husband, now!) brought me a bowl of instant ramen while I was feeling unwell.
I felt SO much better after. So much better I couldn't even put it into words, and that was weird because who feels good after they eat instant ramen? So I went to google, and I searched and searched different phrases and ideas about it. "Instant ramen feel better after eating", "What conditions would ramen help", and eventually, the spies in my phone told the algorithms on various social media to show me...
POTS content!! (￣▽￣///) Clips or videos of people putting salt in water when they felt unwell, and discussing the other symptoms of POTS. I didn't completely relate, but the salt! The salt!! it was the ONLY lead I had, and this was 3 years and 7+ doctors who all said the same things, did the same tests, and sent me home. Plus one who said it sounded like seizures?! and when it wasn't seizures, said the same things as the rest and sent me away.
I gave it one more try. I went to one of the doctors who told me I was having autistic meltdowns on top of being overweight and sedentary, and I said, "These are my symptoms, this is what helps, please test me for POTS so I can rule it out."
She said, "It doesn't sound like POTS to me, but I'll send you to a specialist and they can test you for it." and I went, got the test. The test is called a Table Tilt Test, or TTT, and it is where they strap you onto a table, tilt the table forward, and if nothing happens, give you a medication to prompt the symptoms if you have those symptoms. They monitor your heartrate and blood pressure during. I passed out during.
Only a short time later, I was diagnosed. Not with POTS, but a condition under the same umbrella of Dysautonomia. I have NCS, and the treatment was more salt, less physical activity, and for me personally, my body don't absorb water. So drinks with sugar, like juice, or sodium, like gatorade, I CAN absorb. So no more water, just juice or gatorade and similar drinks to those.
All that time, years of being so sick I couldn't do anything and it turns out doctors were giving me the absolute wrong advice the whole time! ( •̀ - •́ ) They said less salt, more water/less sugar, more exercise. What I needed was more salt, less water, and less exercise.
A horribly frustrating experience, but now that I know how to take better care of myself, I'm doing so much better! I can do much more, although I still have my limits. The same specialist who gave me the TTT is the one who said I obviously have MCAS, and that has improved as well. I was able to identify what the main allergens are for me, and take better care to avoid them.
I haven't fallen down from dizziness in over a year. I haven't passed out in forever. The last time I did, it was because I had covid again and I was coughing so hard.
I still can't do some things, like roller skating, dancing, biking and stairs. But when I manage my health closely, I can feel myself getting closer to those activities again. Fingers crossed that one day! Thank you for reading. I hope this helps someone, but either way, it feels good to get my story out.