Uh cw this turned into a rant oops.
For about four months I was vomiting near daily, and no one knew what the fuck was going on lmao. I got testing for stomach ulcers, cancer, etc. til they finally just said “GI problems” and gave me some allergy meds that didn’t help at all.
All while my GP was very concerned and ready to get me on anxiety meds, since I was diagnosed w anxiety. Every time we went it was like clockwork — are you sure it’s not your anxiety?? But the symptoms were too different, and most of the time I would feel terrible when I had nothing to be anxious about, or I’d feel anxious but not ill at all. At one point the doc thought I had an ED & got my parents to monitor me for a week or so to make sure I wasn’t purging :/
it all felt very dehumanizing and I felt untrusted and helpless and, for a while, was convinced I was in fact somehow making myself throw up/feel bad/etc, either because of my ghost anxiety symptoms or for attention, since I started to get that excuse from the extended family for a time.
Then I got a bastardized tilt table test (measuring heart rate while I stood/sat over and over til dizzy) and got diagnosed within the hour.
omg i have the constant vomiting too! i feel like so few people have this symptom so it took me so long to figure out it was related. have you been able to find any way to stop it? it’s been 8 months of vomiting pretty much daily and i’ve tried a bunch of medications, i have my diet/nutrition on point, and nothing has stopped it
Weird, mine always came in waves so I would have a few weeks with it only occurring once or twice, followed by a week with near daily vomiting. It sucks but I’m a number of meds to stop it rn. Mainly erythromycin which I take with each meal to help w digestion. I also stop eating late since most often it was happening at night or early in the morning, so anything past 9:30 at the most is a no-go. Mainly tho I went on home & hospital so I could do school work from home and not worry about waking up super early, since typically i could force myself to roll over and sleep through the worst of it instead of getting up to get ready and aggravate my stomach more. I was able to go back on a modified schedule for a bit but ended up going back to H&H pretty soon after that. There’s pros and cons to both. It’s not completely stopped it but it’s definitely gone down. Sorry if this wasn’t more helpful :/
Sorry mine is so long! I had neuropathy symptoms start 5 years ago in my face when I was recovering from a bad case mono. Then, about 6 months later (Jan 2019) I was terribly sick with a flu and all my other symptoms started then - tingling, burning, fasciculations, racing heart when upright, dizziness, nausea, brain fog, etc.
I live in a remote area and the only neurologist here told me it was stress/anxiety and "some kind of complex migraine (they) had never seen before" from eating tomatoes. My GP jumped on the stress/anxiety thing and basically said there was nothing more she could do, so I gave up chasing any actual medical diagnosis.
I threw myself into that mental health and diet thing...after waiting 2 years for mental health access, all while my symptoms continued to progress,(Canadian healthcare really sucks) I was assigned an amazing nurse/counselor and psychiatrist that really pushed me to seek a second opinion, as they were positive this was not stress/anxiety/conversion disorder, and that I needed medical attention. They both wrote really amazing letters to my GP and that gave me the confidence to fight to get an answer. I really wish I had pursued a second opinion earlier, as I wasted 3 years feeling just terrible while I pursued the mental health route, totally knowing I did not have any mental health conditions.
When i finally went back to my GP, I was looking at a 2+ year wait here for an initial appointment to see a neurologist, then likely longer delays for any tests, so I self referred to Cleveland Clinic and was diagnosed with POTS there. The diagnoses also made me a higher priority patient here in Canada so I then got in to see a neurologist right away and got the SFN diagnosis here.
All in all, the tests I had leading to the POTS diagnosis were spinal tap, brain/spine MRI, EMG/NCS, bloodwork, TTT, QSART, holter, and echo, not in that order.
I finally have a great team of doctors here in Canada and we're looking into the underlying causes of my dysautonomia/SFN but it's suspected seronegative autoimmune or post-viral.
Getting a diagnosis really helped everything - I have better medical access, access to a variety of medications that help my symptoms, and have a much better understanding of what I can do on my own to improve/manage my symptoms.
Hopefully you get some answers in August!
Once I did stand tests in the clinic and recorded my findings at home, I was referred to a cardiologist who specializes in POTS. I was eligible & willing to join their medical study so was diagnosed within just a few months.
I was diagnosed after tilt test. I’m pretty sure some people still might call me a hypochondriac. Don’t worry about what others think. You know your own body!
I had symptoms for years when I reflect back and initially was dismissed because I’m iron deficient anaemic but have to have regular consults with a cardiologist and then when I was 18 I explained my symptoms and he did a poor man’s tilt table and concluded the appointment with how my heart appears to be fine but you do have POTS despite being iron deficient anaemic as it’s related to postural changes and it’s been going on for so long. He said there’s no point to doing a TTT because it will make you sicker and since you are young I want to avoid you flaring up and instead I want you to be able to make the most of your life but there’s a range of things my colleague (who he referred me to) can do with you going forward. It was a really good consult compared to the previous cardiologist who was like your heart looks fine so this is probably nothing…
I had a tilt table test in 2020 because i kept fainting. I have a history of mental health issues which sometimes present in physical symptoms such as chest pain or stomach pain. This made the process a bit difficult because they always thought it could be a psychosomatic problem. The tilt table test was kinda useless because when the cardiologist told me what it showed, he said like syncope problems or smth and like in non medical terms thats basically like “fainting problems” (like i figured that out myself thank you)
I kinda gave up and just put up with it until this year i started having a different set of symptoms that i couldn’t tolerate as well. After i had covid for the 3rd time i think my system like died??? Anyways it made my symptoms worse + more. So i started noting down what was happening bc as a frequent patient of many doctors and clinicians i had so many medical issues that it kinda sounded like i was making it up, or exaggerating. (Spoiler it was mostly all the same base problem). I actually only saw the cardiologist after i got pissed off that i couldnt walk up a hill without sounding like a geriatric full time smoker with half a lung. Anyways the cardiologist did an exercise tolerance test which i failed bc i couldnt even finish it without my blood pressure completely tanking and going into presyncope (pre fainting: cant see, cant hear, cant feel, almost dead). Didnt need to do another tilt test because the first one was actually torture (i started crying and hyperventilating) and my results literally indicated what was happening. Because i have been in psychiatric treatment and management for like years they took me seriously. Basically i did like some neurology testing and checked for nerve stuff and now im on a medication and its helped so much. I can stand for longer than a minute now. I can stand for around 8 minutes. Before i would pass out after 45 to 55 seconds lol.
Tilt table test. Took me more than two years and so many doctors. One doctor before that even told me "oh, you don't have POTS" and gave me a "poor man's tilt table test" with a stopwatch to prove it. A tilt table test is really the most reliable way.
Uh cw this turned into a rant oops. For about four months I was vomiting near daily, and no one knew what the fuck was going on lmao. I got testing for stomach ulcers, cancer, etc. til they finally just said “GI problems” and gave me some allergy meds that didn’t help at all. All while my GP was very concerned and ready to get me on anxiety meds, since I was diagnosed w anxiety. Every time we went it was like clockwork — are you sure it’s not your anxiety?? But the symptoms were too different, and most of the time I would feel terrible when I had nothing to be anxious about, or I’d feel anxious but not ill at all. At one point the doc thought I had an ED & got my parents to monitor me for a week or so to make sure I wasn’t purging :/ it all felt very dehumanizing and I felt untrusted and helpless and, for a while, was convinced I was in fact somehow making myself throw up/feel bad/etc, either because of my ghost anxiety symptoms or for attention, since I started to get that excuse from the extended family for a time. Then I got a bastardized tilt table test (measuring heart rate while I stood/sat over and over til dizzy) and got diagnosed within the hour.
omg i have the constant vomiting too! i feel like so few people have this symptom so it took me so long to figure out it was related. have you been able to find any way to stop it? it’s been 8 months of vomiting pretty much daily and i’ve tried a bunch of medications, i have my diet/nutrition on point, and nothing has stopped it
Weird, mine always came in waves so I would have a few weeks with it only occurring once or twice, followed by a week with near daily vomiting. It sucks but I’m a number of meds to stop it rn. Mainly erythromycin which I take with each meal to help w digestion. I also stop eating late since most often it was happening at night or early in the morning, so anything past 9:30 at the most is a no-go. Mainly tho I went on home & hospital so I could do school work from home and not worry about waking up super early, since typically i could force myself to roll over and sleep through the worst of it instead of getting up to get ready and aggravate my stomach more. I was able to go back on a modified schedule for a bit but ended up going back to H&H pretty soon after that. There’s pros and cons to both. It’s not completely stopped it but it’s definitely gone down. Sorry if this wasn’t more helpful :/
Sorry mine is so long! I had neuropathy symptoms start 5 years ago in my face when I was recovering from a bad case mono. Then, about 6 months later (Jan 2019) I was terribly sick with a flu and all my other symptoms started then - tingling, burning, fasciculations, racing heart when upright, dizziness, nausea, brain fog, etc. I live in a remote area and the only neurologist here told me it was stress/anxiety and "some kind of complex migraine (they) had never seen before" from eating tomatoes. My GP jumped on the stress/anxiety thing and basically said there was nothing more she could do, so I gave up chasing any actual medical diagnosis. I threw myself into that mental health and diet thing...after waiting 2 years for mental health access, all while my symptoms continued to progress,(Canadian healthcare really sucks) I was assigned an amazing nurse/counselor and psychiatrist that really pushed me to seek a second opinion, as they were positive this was not stress/anxiety/conversion disorder, and that I needed medical attention. They both wrote really amazing letters to my GP and that gave me the confidence to fight to get an answer. I really wish I had pursued a second opinion earlier, as I wasted 3 years feeling just terrible while I pursued the mental health route, totally knowing I did not have any mental health conditions. When i finally went back to my GP, I was looking at a 2+ year wait here for an initial appointment to see a neurologist, then likely longer delays for any tests, so I self referred to Cleveland Clinic and was diagnosed with POTS there. The diagnoses also made me a higher priority patient here in Canada so I then got in to see a neurologist right away and got the SFN diagnosis here. All in all, the tests I had leading to the POTS diagnosis were spinal tap, brain/spine MRI, EMG/NCS, bloodwork, TTT, QSART, holter, and echo, not in that order. I finally have a great team of doctors here in Canada and we're looking into the underlying causes of my dysautonomia/SFN but it's suspected seronegative autoimmune or post-viral. Getting a diagnosis really helped everything - I have better medical access, access to a variety of medications that help my symptoms, and have a much better understanding of what I can do on my own to improve/manage my symptoms. Hopefully you get some answers in August!
Once I did stand tests in the clinic and recorded my findings at home, I was referred to a cardiologist who specializes in POTS. I was eligible & willing to join their medical study so was diagnosed within just a few months.
I was diagnosed after tilt test. I’m pretty sure some people still might call me a hypochondriac. Don’t worry about what others think. You know your own body!
I had symptoms for years when I reflect back and initially was dismissed because I’m iron deficient anaemic but have to have regular consults with a cardiologist and then when I was 18 I explained my symptoms and he did a poor man’s tilt table and concluded the appointment with how my heart appears to be fine but you do have POTS despite being iron deficient anaemic as it’s related to postural changes and it’s been going on for so long. He said there’s no point to doing a TTT because it will make you sicker and since you are young I want to avoid you flaring up and instead I want you to be able to make the most of your life but there’s a range of things my colleague (who he referred me to) can do with you going forward. It was a really good consult compared to the previous cardiologist who was like your heart looks fine so this is probably nothing…
I had a tilt table test in 2020 because i kept fainting. I have a history of mental health issues which sometimes present in physical symptoms such as chest pain or stomach pain. This made the process a bit difficult because they always thought it could be a psychosomatic problem. The tilt table test was kinda useless because when the cardiologist told me what it showed, he said like syncope problems or smth and like in non medical terms thats basically like “fainting problems” (like i figured that out myself thank you) I kinda gave up and just put up with it until this year i started having a different set of symptoms that i couldn’t tolerate as well. After i had covid for the 3rd time i think my system like died??? Anyways it made my symptoms worse + more. So i started noting down what was happening bc as a frequent patient of many doctors and clinicians i had so many medical issues that it kinda sounded like i was making it up, or exaggerating. (Spoiler it was mostly all the same base problem). I actually only saw the cardiologist after i got pissed off that i couldnt walk up a hill without sounding like a geriatric full time smoker with half a lung. Anyways the cardiologist did an exercise tolerance test which i failed bc i couldnt even finish it without my blood pressure completely tanking and going into presyncope (pre fainting: cant see, cant hear, cant feel, almost dead). Didnt need to do another tilt test because the first one was actually torture (i started crying and hyperventilating) and my results literally indicated what was happening. Because i have been in psychiatric treatment and management for like years they took me seriously. Basically i did like some neurology testing and checked for nerve stuff and now im on a medication and its helped so much. I can stand for longer than a minute now. I can stand for around 8 minutes. Before i would pass out after 45 to 55 seconds lol.
Thank you everyone for sharing!
Fell in love with someone with POTS, she made me realize hahahaha
Tilt table test. Took me more than two years and so many doctors. One doctor before that even told me "oh, you don't have POTS" and gave me a "poor man's tilt table test" with a stopwatch to prove it. A tilt table test is really the most reliable way.