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What Were You Doing At The Moment You Pots Became Debilitating?


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I was at work. I had been battling POTS for a while and the place I worked was adding more and more stress to me (they admitted that they wanted me to quit because I was too much of a liability and "could no longer physically fill my job description".) Anyway the final straw was they (knowing my condition) sent me to the play ground in 90 degree heat with 12 arguing afterschool children. Obviously I collapsed again. I still have not fully recovered and that was 7 months ago.

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I had months before POTS where I was instictively not standing in one spot, like in a grocery store line. I would "pace" around in my little space, but never standing still. At the time, I don't remember noticing I was doing it or even wondering why.

One morning I had to go do routine labwork. I had 2 tubes drawn and everything was fine until I went to meet my husband in another area and he was visiting with a friend. I stood there and all the sudden felt faintish. I told him we HAD to go NOW. I made it to the car and I have been just like that now for the last 6 years. I can look back and now see that the pacing in the store lines means it was coming on, but I was very functional until that day at the lab.

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I had weird stuff going on sense highschool - id always get spaced out after the flu every time. Tired a lot. But it went from a strange subtle thing to an overwhelming thing literally on the spot while skipping one night just after my 26th birthday. I felt really dizzy and said to myself that was strange. it went away then I went to bed and my heart was racing constantly so i assumed i was having a heart attack and went down to the ER. They said I was dehydrated but drinking never made it go away and I had it for 12 months before there was any improvement or a diagnosis.

Since then it waxes and wanes. Sometimes its shocking - somethings its bareable but its never perfect,

Even well if I get on a trampoline it feels like my brain is out of my head literally! :)

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It was June 2008 I had a yard sale,I went in the house and started relaxing I felt my heart start racing, shortness of breath, and very panicky, I told my husband to call 911. I was so thirsty in the ER they wouldn't give me anything to drink for 8 hours they finally sent me home with no answers. Haven't been the same since.

Had slight symptoms for many years prior to the debilitating state.

In March of that year I had a baby and it seemed with every menses I got sicker and sicker until it wasn't illness with just my cycle it was illness everyday.

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I had first attack while in the Keys after diving for grad school research (setting up underwater research site). Was also taking exercise supplements with effedrine (didn't know of danger back then), had major dizzy/tachycardic episode that lasted about an hour. Almost passed out in my sushi (good sushi in the Keys!). Stopped supplements that day, but attacks continued and increased, went to ER and cardio, had TTT with increase of 45 bpm, but was told I probably had "overactive adrenalin", "orthostatic intolerance", and anxiety (no history of anxiety/depression). Had to leave grad school, waxed and waned, but managed to function fairly well. Then had major flare and had to leave teaching in 2006, and got formal POTS dx. Same waxing/waning....pretty normal life, then BAM, got pregnant with 2nd child almost exactly a year ago and was hospitalized. Haven't left the house since except for doctor/hospital. Truly and thoroughly disabled now for first time.

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I had symptoms for years but was able to function with dizziness, fatigue, nausea, and some chest pain at rest, flutters,and rapid heart. Then one day in the middle of my exercise class, I felt a shift in my body and went home with extreme fatigue and all symtoms worse and have never been the same since. Love to all! :rolleyes:

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I had problems in the past but always seemed to get over it. Then, it happened while I was at work. I didn't get much sleep the night before and hadn't been feeling good all day. I kept getting these rushes which I now know were adrenaline, I walked around the corner made eye contact with my boss and lost it. Haven't been the same since.

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I had been having transient blurry vision with an 'out of body' feeling for several months along with severe fatigue, cold temps and increasing generalized weakness. In February 2007 I was walking slowly on a treadmill at PT when I felt faint, then started shaking uncontrollably. Like the others said, I haven't been the same since.

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Had years of odd symptoms but was highly functional. Had a minor surgery under general anesthesia. Twelve days post-op I thought I was getting better. Went to a 2 hour advanced yoga class that evening, felt "off" during the whole class, drove home and could barely get out of the car to walk into the house. Ran 101 fever the next two days. The surgeon thought I had an infection at the op site, but when the cultures came back they were positive but with a "rare" growth pattern of a benign bacteria. Fever went away but kept having the tachy, SOB, palpitations, lightheaded, etc etc. Surgeon kept saying my body's reaction was WAY out of proportion to the infection so she thought something else was going on but couldn't figure it out. Never got better. Lots of doctors and five months later, I finally found my own diagnosis (dysautonomia) and then spent months trying to get an official diagnosis.

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I'd been feeling off earlier during that day but struggled to walk from my place to the train station which was only about 10 minutes away. By the time I got there, my chest was pounding, I felt like I was about to pass out and I didn't have the strength to get off the bench and onto the train when it arrived so I sat for awhile to recover then managed to drag myself home. I got steadily worse over a week to the point where I was out of breath just walking from one room to another and my partner dragged me to the ER when my heart palpitations wouldn't go away and my chest hurt continuously. They admitted me, I was told I had POTS then discharged after a week with meds. :)

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I had been having problems for years too before things got really dramatic. When all the heart symptoms started, I didn't know if this was some new thing on top of the original problem or if it was part of the original problem. After reading other people's experience, sounds like many of us followed a similar course. Something was wrong and then BAM! something was really wrong. Weird. Sue - good point... what pushed us over the edge? It's like the cup was filling and filling... until it finally spilled over.

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Mine was gradual. It happened over a period from April 2010 to September 2010 when I felt I couldn't work anymore. In April I was still having good and bad days and attributed the bad days to poor sleep. Starting in June I felt like my heart was racing although I never checked it to see how high.Everything worsened over the summer. There was one day in August when we were taking office group pictures for our website. It was 100 degrees plus and we were taking these pictures outside. I felt very dizzy. I went home to rest afterwards because I didn't have any clients until later that afternoon and felt my heart racing and being so dizzy that I really couldn't get up. I cancelled my clients for that day. I worked for about two more weeks after that through unbearable fatigue, dizziness, and tachycardia. Oddly I thought I was suffering from an anxiety disorder. ( I was a therapist and I guess that's how I thought.) Then I took what I thought was going to be a short leave of absence to rest and try to get my sleep problem under control. I never went back to work. The following January I was diagnosed with POTS and just two days ago was diagnosed with Small Fiber Neuropathy.

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The month before my crash, I had what I thought was a panic attack while eating sushi at RA. I felt out of breathe, dizzy, heart racing, anxiety and layed down in my car. It went away and I put it aside.

I went to see the movie Cloverfield one night, and felt very weak and dizzy. I went to bed early and the next morning I was bed bound. Everytime I stood up I passed out. I felt no longer "real" and everything looked very strange (probably no blood in my head). I came down with POTS in Janurary of 2008 so its my 4 year anniversary LOL

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After thinking about it, I have had symptoms most of my life. According to my parents, whenever I would stand or legs would dangle, my legs and feet would get very purplish red/mottled. I had my first syncopal spell at around 11 or 12. Those would happen periodically, monthly maybe? I went to a doctor who just said that some people who get up too fast will faint and there are those who are prone to fainting. Keep in mind, this is 25 years ago as I am now 37. I lived in a very small town without the greatest health care.

I am extremely hypermobile with hyperextendible joints and at the age of 14 just running into the dugout at the end of an inning at a softball game my ankle slightly turned and I fell. I felt unstable but wasn't in a lot of pain. Come to find out an hour later, as I was in complete shock, when I arrived at the hospital I had completely severed all four ligaments in my knee. That was a whole separate ordeal that took 6 surgeries to fix in 3 years. Each time I had anesthesia I really struggled, right afterward in the hospital because my BP would get so low and stay that way (usually causing me an additional 4 days inpatient at least) and then it seemed to take me forever to snap out of it. I was always prone to shaking, hands, feets, sudden loss of strength, never had a brain freeze (which is a kind of funny "symptom" but one of the doctors I saw at Mayo said that is related to autonomic dysfuntion because for some people that nerve doesn't work properly to warn the brain of too much cold- funny enough my 11 year old son figured that out a month ago after lots of research on the computer :) I ALWAYS have huge pupils, to the point where people are always commenting on them. One is bigger than the other. VERY high arches, which my neuro doctor at Mayo said indicated neuro problems due to severity of how high they are. There are just a zillion little things that I have ALWAYS had my whole life but it was always one of those things that was just a "quirky Jen thing" as my family called it but no one ever thought anything was wrong with me. Yeah, I would faint and my heart would race, but I stood too fast. By the time I'd get to the doctor if I bothered to go, my BP was pretty stable.

It wasn't until I got very sick many years later in my early 30's with glomular nephritis that I started to think there was something really wrong. That is a relatively rare disease in adults that occurs after a person gets strep throat, doesn't treat it, and the strep bacteria gets in the kidneys and causes kidney failure. Sure, I had a sore throat, no fever, but I was a mom and I had to go to work and I felt a little yucky but thought it was a minor cold. 4 weeks later I could put my shoes on. I looked at my legs and they were almost 3 times their normal size overnight. Or so it seemed. I weighed myself and I had gained 50 pounds since my last weight. I drove myself to an urgent care and they did all these tests and when I did a urine test my urine was a brownish red color. Not good. She sent me to the ER and said she would call with the results. She had someone pick me up to take me and on the way there she called and I was in kidney failure. Long story short, luckily it was an acute case, after about 4 horrid months and temp. dialysis I got better but that's when my first "severe" POTS flare started. It went on for about 3 months. The fainting, low BP, all of those other symptoms that go long with it. Then, I started to get better. But I also developed a pretty severe case of fibromyalgia after that and had a very high ANA. That, unfortunately has stayed with me, along with crippling fatigue that still plagues me.

But I went back to work eventually and in 2008 had my next episode. Same thing, neuro illness (cluster headaches) and I was in the hospital and then it took about 2 months to get out of those (thankfully... WORST pain you could imagine- I get migraines but these are a whole different ball of wax). I spent the next 6 months in a flare... low BP, tachycardia, etc, etc, etc. What I have noticed throughout MY life anyway, is that the symptoms never go away completely but I become more functional for a bit. I am always prone to low BP, syncope, fatigue and many other symptoms but it is the flares that completely make me non functioning.

Now, to where I am now and I won't go too much into it because lots of you know my story. But it started with an appendectomy on Dec. 31, 2011. Two months later, my "bad" knee(they are both bad now because of multiple dislocations and ligament tears due to my hypermobility- EDS) would not stay in place so we had to do another surgery. Both times, major struggles after anesthesia. My BP would not come up. About a week later, I had my first syncope episode with the current "flare" I am in and so far it has progressed to something that I would have never expected. Multiple head traumas from the six concussions I've had. Numerous daily syncopal episodes. VERY low BP, even sitting. Standing, forget it. Tachycardia which has increased over time. Bladder dysfunction. Thyroid dysfunction. Small fiber neuropathy. I was diagnosed at Mayo (finally) with immune mediated autonomic dysfunction neuropathy and one of the worst they had seen in some time. It look me less than 10 seconds to faint on the TTT. Couldn't even detect my blood pressure. I am on IVIG right now but that now sure how its going. There are pros and cons. So we will see. SOOOOO.... that is my story. I think I have had some form of autonomic dysfunction most of my life and an autoimmine problem most of my life as well. I was always the one getting the weird viruses that no one else would get. My infections lasted forever. So now my "complicated" medical history makes a little more sense but doesn't really answer any questions. In fact, my discharge papers at Mayo actually stated "Mrs. Glynn is a pleasant 37 year old woman with a very complicated medical history including (blah, blah, blah, mentioned some above) and has been diagnosed with numerous DX while in our care including immune mediated autonomic dysfunction but still continues to be quite the medical enigma to the medical staff." I had to laugh when I read that. What on earth do they mean by that??? Is that a compliment? :blink: Once I started getting some organ shut down things got very scary. I spent 12 days inpatient at Mayo and then was transferred for another 9 for acute inpatient rehab. Life changing, for certain. Interesting and frustration to go to doctor after doctor (even at Mayo) and STILL not have them be able to figure me out. ALL I want is a definite answer but it seems that there just may not be one.

So that is my very long and complicated story but the short version would be I don't think I ever didn't have the symptoms to at least some degree, at least before age 6 or 7.

Jen

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I had been having issues for a looooong time (my whole life really), but there was a horrible moment that things went spinning out of control. I came home from work, had not eaten much all day, and had not drank enough. I was unloading groceries from the car and carrying them into the house. At this point in time I was very fit and had been exercising about an hour and a half every day (despite significant tachycardia--which I assumed just meant I was not fit enough and needed to work harder). I got horribly nauseated, extremely tachycardic, and my extremities turned blue. I collapsed in a chair and just before I passed out I said "I need help". The ambulance ride was a blur, and even some of the ER was a blur--I just remember a doctor that I knew personally, standing over my bed looking very concerned. I thought I was definitely going to die. .......but..... I'm still here. :P

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Interesting now many of us have had symptoms since childhood and how it has progressed since. Does anyone notice that each "flare" seems worse than the previous one? In my case, that seems to be the case. The flares last longer and get more severe. This one I am currently in (which I PRAY is just a flare and not a life sentence) has definitely been the worst by far by 100%. So far it has gone on since April but has progressed from "mild" to extremely severe in that time. DO any of you find that this happens with you or are most of your flares the same?

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