Shannoncr

I am new here. I have been ill (I guess that’s what you’d call it?) for quite some time now. My first fainting spell happened when I was in kindergarten at the pediatrician. He did the finger prick to check my blood sugar during a routine physical, i told my mom I was going to be sick & I got sick then promptly fainted. The doctor said it’s a common reaction to the site of blood (which I know it is & I am still grossed out by it & often still feel faint when I see it.) When I was about 10, I stopped eating. I was later diagnosed with anorexia but I can’t for the life of me remember why I stopped eating. I don’t remember thinking I was “fat” until I was a teenager. (They’ve also done studies that show when your body is in starvation, you tend to focus on your body & body dysmorphia is common in cases of starvation.) anyway, I didn’t get any better as I got older & as I started to eat again I became constipated that’s when I started abusing laxatives. I was passing out constantly but it was always attributed to my eating disorder so it’s always been looked at like the chicken or the egg. In 2005, I was officially diagnosed with neurocardiogenic syncope via tilt table. In 2009, I had something totally bizarre happen to me. I don’t know if it was a seizure as I’m not sure I’ve ever had one before but I was standing at the top of my parents back porch (it’s only three steps) getting ready to open the door & all the sudden my legs began to shake & then my arms & I couldn’t hold onto the door anymore so I fell backwards & landed on my back, hitting my head on the concrete patch on the driveway. I lost consciousness but I have no idea for how long. When I came to, I felt very weak & exhausted - an exhaustion I’m not sure I’ve ever felt before. Obviously my head was pounding. For days later, I had the worst headache I’ve ever had (I’m prone to migraines but this was bone crushing pain & nausea) I finally went to the hospital & they said it was just a bad concussion. I checked into rehab for my eating disorder a month later (my third time in treatment). They took me off all medications I was on, they worried that the lexapro i was on (40mg which is above what is considered therapeutic) may have caused a seizure - they also worried that since I had been on countless antidepressants with no desirable results, maybe my body was just totally rejecting them now. Who knows, but I was at their mercy & I desperately needed help because I was no longer able to function. I had another scary incident happen while I was hospitalized. I had just gone pee, I got up off the toilet to wash my hands, I reached for the door & all the sudden everything went black but I was still standing & could still hear (our bathrooms were in our rooms literally about four feet from my bed) so I opened the door & laid down. I tried to speak but I am not sure I was able to say anything. A nurse came by, I was able to see at this point but unable to move. I remember talking with her, she asked why I was on the floor & if I was ok. She called in more nurses & they tried to get a pulse but couldn’t. They tried to get a blood pressure, couldn’t. The whole time they were working with me (this was an acute psychiatric hospital, I don’t know if they even had paddles) I can hear what’s going on but I can’t see, can’t speak, & I can’t move. They said I turned grey. They finally got a BP & it was 54/45. I don’t know how long it all lasted but by the time 911 got there, I was conscious & I remember laughing about all. Saying I didn’t want to go to the hospital. I was exhausted, sweaty, & cold. I just wanted to sleep. My vitals were back to normal again. I received a million dollar work up. Holter monitor for 30days (showed tachycardia, bradycardia, PVCs), stress echo, regular echo (heart is structurally sound, mild mitral valve prolapse &mild tricuspid regurgitation) told my heart is fine & prescribed atenolol 12.5 BUT I have low blood pressure & a low heart rate so I have to have my vitals taken before I am able to take the atenolol - if heart rate is below 60 I can’t have it. I went to neuro to have my head looked at because at this point in time, I am still having these terrible headaches. I was diagnosed with post concussive syndrome & surprise, they found I have syringomyelia. they don’t know if I was born with it or if it happened when I was in a car accident at 17yrs old & my head cracked the windshield. They told me it needed to be monitored but if I still had feeling in my hands & feet & as long as I’m able to still tell the difference between hot & cold, there’s no reason to begin any sort of treatment. No problem. Now onto hematologist. My ferritin level is at a 2. They try iron supplements & nothing happens. I received IV iron infusions with no dramatic changes (other than I had a weird arthritic response after the first three infusions.) They never got it higher than in the 30s, with one reading at 67. Just told me my body doesn’t absorb nutrients the way everyone else does. I was hospitalized inpatient in the eating disorder hospital for 3.5 months. The entire time I was there, I was a fall risk & my vitals were always “orthostatic” - so I had to have them taken three times a day lying down, sitting up, then standing. I never knew what any of this meant. I just listened to the doctors. Fast forward to 2013. I’m in San Diego at the zoo with my sister in front of the hyenas. She looks down at my legs & asks what’s wrong, I said nothing. Five minutes later I’m on the ground & have no idea what’s going on. (My sister is a PA, we were on vacation celebrating her graduation from school) she said “I think you have POTS” I had never heard of it before & thought well I have a cardiologist I think they’d know if I have this. I did alright for quite a few years. My cardiologist explained what I need to do when I start to feel symptoms of fainting. Told me it’s good I still get the signs, when the signs stop coming, we’ll need to discuss a pacemaker (“but not the kind old people get” is what the cardiologist said) kept me on the atenolol 12.5 but made sure I was taking my vitals before taking it - after a couple of months on it, my heart rate plummeted to 35 so I had to come off it for a while. Now 2017. I was having PVCs so bad that I was becoming dizzy, short of breath etc. I went to the hospital, they just said I was having PVCs & it was no big deal. Had all the same tests done again with my cardiologist (same cardiologist has been treating me since 2011) all showed the same things as they did in 2010 & 2014. Except now over 20% of my heartbeats are PVCs. & I know have high blood pressure. (160/100 was about the average) my cardiologist is so confused because in 2014, we were trying to find ways to raise my BP. (Increased salt & hydration has been part of my routine for years) we did a catecholamines test done (& after reading about it, I’m not sure the test was done correctly. I just walked in & she took my blood. There was no lying down & sitting up. But I don’t know) it came back normal. my thyroid was a little off (I’ve had hypothyroidism since I was a young adult) but she didn’t think it was off enough to cause all this. My ferritin is at 12, which is still within normal limits according to the paperwork (should be between 10-200) She put me on losinopril 2.5 and carvedilol 3.25 twice daily. (Don’t laugh at the low doses, I am so sensitive to medicine we have to start low) it worked for a month & the palpitations came back worse than ever. Doubled the dose of carvedilol. Same thing, worked for a month & then got worse. I also developed Raynaud’s phenomenon during this time - she said it may be the meds but it didn’t go away after coming off the meds. Another holter monitor for 14 days. Can’t figure out why I’m having so much tachycardia. She sends me to EP. he tells me “it’s just PVCs. They’re not dangerous & usually when we tell patients that, the PVCs stop. “ (remember, I have a lengthy history of depression & anxiety) but he wanted me to wear another holter monitor for 24 hours (I am allergic to the sticky leads so my skin was raw at this point & im scarred from it) & he wanted to see me again in 2 months. I don’t want to go back. The PVCs never stopped. My cardiologist said she wants a second opinion. She took me off lisinopril & carvedilol & put me on metoprolol 25. My BP is still higher than what it was a few years ago & I’m still having PVCs & tachycardia. I’ve done the poor man’s tilt table & my heart rate jumps 33bpm from lying down to standing (but not every single time so I think the metoprolol is helping a little) & after I eat it skyrockets. She said I don’t have POTS because that would’ve shown on my tilt table from 2005. My primary care wants to talk to cardio first (she didn’t understand why EP wanted to see me again if he thought it was all in my head) but then I remembered the syringomyelia & the lesions they found on my brain. I have been trying to figure this all out on my own. I’m beginning to wonder if my diagnosis of depression & anxiety was ever even accurate at all. I am definitely depressed & anxious but I am also a 34 yr old woman who has all these unexplained symptoms that are invisible which I think would cause anyone to be depressed & anxious. I am exhausted 24/7. I have terrible night sweats, I sweat profusely (at least in my eyes) when doing things that should exert only minimal effort, I am out of breath doing small things, I’m dizzy, I feel cloudy like a dream or something, I’m forgetful (so embarrassing), my stomach is a mess, & I have weird random pains in my body. I realize a lot of this could be caused from my years of starvation. I know that & have accepted it. I have no answers. I often just feel hopeless & at my wits end. I am currently waiting on my primary care to fax my records over to Dr Blitshteyn & I hope to have a consult with her soon. I’m sorry I am complaining so much, I guess I’m just wondering if any of this (I know it’s a lot) resonates with anyone here or if I am just grasping at straws. Thanks for taking the time to read Shannon

@niftyusername I live in buffalo, ny so we’ve only just started to have spring time weather lol. it snowed last Sunday 😂🤣 It’s hard for me to tell if I feel worse in spring than I do in winter. I definitely feel like I push myself a lot harder in the spring/summer which usually makes me feel crappy. for example, I cut my lawn today and did a little gardening. It took me 2 hours and when I was done, I was exhausted. Didn’t do much else today, aside from load and run dishawasher and laundry. It is frustrating being 34 years old and getting tired from something so simple but I am grateful I am able to do these things, as I know many can’t. sending you well wishes!

Hi, i can absolutely relate to your experience. had low bp my whole life - all the sudden it’s high. cardiologist said it’s probably genetics, because my mom & sister were both diagnosed in their early 30s with high blood pressure. (I’m 33, I’ll be 34 next Wednesday) same with the weight gain. I can relate to the impending doom feeling also - although I have a history of anxiety I can tell the differences between anxiety attacks and the physical feeling of anxiety (no one believes me though but there’s a different feeling to me) i wish I had answers for you. I know how hard it is dealing with SSDI & how limited funds can determine whether you have to cancel a doctor appointment or not, on top of feeling like crap all the time. i haven’t been diagnosed with POTS or any autonomic disorder (I’m trying to speak with Dr. Blitshteyn- just waiting on my medical records) but I was curious why your doctor said spring time is hard for those with Dysautonomia?

Hi, have you been tested for uveitis? My father has it. It’s an autoimmune disorder & he had to see several doctors before anyone had been able to diagnose him. (I think autoimmune disorders are common in patients with POTS, from what I’ve been reading) For what it’s worth, my dad did have pain/pressure behind his eyes & that’s why he originally went to the doctor. He still has floaters but he’s in remission right now (knock on wood) he was on steroids for a while for the inflammation. Hope you find some answers! shannon

I have experienced this my whole entire life. Still experiencing it now. My mom has just recently become more concerned with the physical health portion of it because I have steadily declined in the last year, especially so the last six months. We have no answers. I have had a full cardio work up numerous times over the years with no real diagnosis. My symptoms have changed over time but the tachycardia, dizziness, fainting, exhaustion, shortness of breath (which I always just thought I was extremely out of shape lol) has remained. My cardiologist is wonderful but because of my history of anxiety, depression, and anorexia (I’ve been in recovery for seven years with a few slip ups but no relapses) she feels most of my symptoms are because of the depression and anxiety. However, my psychiatrist and therapist do not believe these are psychological symptoms (but I don’t know if they aren’t just saying this to appease me or if they really believe something is going on.) But I have been trained since I was a teenager that all of my problems are in my head and have a difficult time believing even myself. I also minimize everything. I feel you & I’m listening. Shannon

Hi, I don’t think you’re overreacting, for what it’s worth. I haven’t been diagnosed with POTS nor do I have an autonomic specialist so I don’t know how invasive/traumatic testing might be for a young kid. I also don’t really know a ton about POTS, like when symptoms might start appearing. But I really don’t think being concerned for your child’s well being is an overreaction. Sending well wishes to you & her. shannon

Hi, Ive worn so many holter monitors, I can’t even remember how many. They’ve all shown different things at different times, but they’ve all shown tachycardia (my latest one has show two forms of tachycardia), PVCs (in singles, trigeminy & quadrigeminy - over 20% of my heartbeats are PVCs) PACs, and bradycardia. I’ve had stress tests & echos. Heart is structurally sound, aside from mild mitral valve prolapse & mild tricuspid regurgitate saw electrophysiologist, & he said it was all in my head & likely just anxiety. my heart rate was recorded several times going from 44 to 156. im grateful my heart is structurally sound but frustrated I haven’t been able to figure out why I feel this way or why my heart does this. I hope you’re able to receive further testing to help. shannon

hi, I’m new here. I haven’t been diagnosed with POTS or any autonomic disorder yet, though convinced I have it. Was diagnosed with neurocardiogenic Syncope in 05. Anyway, my ferritin level was 2. tried iron supplements with no change. finally got IV iron infusions, I had a reaction to it similar to like an arthritic response my first two infusions but was fine by the 3rd, just some stiffness/soreness. my levels never got above 36. this was in 2010. they decided my body just doesn’t absorb certain nutrients the way it should. But it was better than being at 2. had my levels rechecked again two weeks ago because my symptoms have progressively gotten worse over the last 6 months especially & im at 12. but my primary care said because it’s withinin normal limits (10-200 - though most women feel better with levels in the 100) no need for infusions. low ferritin also messes with your thyroid. thank you all for sharing your stories & I hope you find answers. Shannon