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Did Your Pots Start With A Bang?


~Naomi~
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Still trying to figure out might have happened to me. Did your POTS start dramatically and then fizzle? I was having all kinds of symptoms, but nothing that I thought was going kill me then one day BAM! - room spinning, racing heart, chest pain, episodes of being unable to breathe, sweating profusely, adrenaline surges etc. etc. These were emergency room symptoms - like I'm about to die. And in fact I did visit 3 different emergency rooms that week. A few weeks to a month later, things calmed down and then I was left with my original symptoms, plus a bunch of new ones. Did any of you start crazy & dramatic like this, but then things calmed down a bit? If not, what was the onset like?

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Mine started out slow and built up with more and more symptoms over 4 years....got really severe after a partial hyst and then my body completely crashed in Feb 2011 so I was literally bedridden....but your right that when it hits....it hits with a thudding BANG!

Bren

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I had about 1 epidsode a month for about 3 months, then month 5--boom. But studies over the next year and treatments were aimed at neurocardiogenic syncope and the meds did nothing to control the spells that were becoming more frequent. By 1 year 4 mos. into things, they changed it to POTS again with multiple medication trials that didn't seem to work. By 2 yrs 4 mos, cardiologist had me on list to see cardiac specialist in dysautonomia (year-long wait list). When he saw me in follow up this Sept 2 yrs 10 mos after beginning sx's he was so concerned by my debilitation and weight loss that he called the specialist personally who got me in within a couple of weeks. I have orthostatic hypotension (he told me looking at my records, a year ago it was POTS) with autonomic nervous system failing. He told me this was the most debilitating summer for all his patients b/c of all temps above 90 and high humidity. (That explained why I had to run inside or would pour buckkets of sweat when I'd done nothing but step outside and wasn't a 'sweater' before). I had learned not to take hot showers and to sit while showering (on a stool). But I didn't know that raising my arms above heart level, bending at waist and lifting could also trigger this. He told me at this stage I could expect fewer warnings with faints. I spent most of my summer on sofa with legs elevated. He explained the purple feet/blood pooling and the relationship with my EDS. I already had fibro and chronic fatigue but had never been so debilitated in my life (except when I had the C-diff). I am back in therapy (again) to recondition the hypotonia in the legs (muscles and veins), in the aquaciser treadmill. I'm still having episodes and one med was already doubled so am just waiting til my Dec.follow-up w/ reg cardiologist to see if he feels comfortable w. tweaking the meds (they're trying to get me hypertensive but still running low/low normal just not tachy anymore--usually around 60s w/ spells. He tells me to anticipate pacemaker down the road.

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Mine started right after catching a virus in 1990 at the same time I got me/cfs. I became totally

disabled right away.

My symptom have varied in severity over the years tho. I always have the oh but I seem to go thru flares

where it's more debilitating.

It's thought that me/cfs is brought on by a virus, but I'm not familiar with anyone saying dys is.

Tc .. D

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yes, my symptoms came on with a bang. In Jan of 2010 i went to a movie with my sister and my heart started racing like nothing I had ever felt. I went to the ER and they kept saying it was panic but my dad is a doctor and knew otherwise but he didn't know what it was. Then, a few weeks later the stomach symptoms and pain started. I ended up getting my gallbladder removed which seemed to make everything worse. I got to the point where I could not eat anything (gastroparesis) but ensure and was still in awful pain. I had an endoscopy, stomach motility tests which showed bad gastritis, hiatal hernia and gastroparesis. the episodes continued to get worse until about the end of february where i ended up in the ER. They noticed how everytime I got up to go to the bathroom my heart rate would increase. An electrophysiologist thought I had atrial tachycardia and I needed an ablation ( I did not end up getting). Luckily, another doctor my dad knew questioned dysautonomia and sent me to an endocrinologist. He tested me and told me I had severe dysautonomia but he did not know the cause. I ended up in the ER again because of c.diff and this set off all the symptoms really bad. I was even in the ICU for 4 days because I could not breathe. My legs were pooling so bad that when I sat up it felt like the blood was rushing to my feet and I would get light headed. I ended up getting plasmapharesis cause they thought it would help but it did not really do anything for me because i would later find out mine was not autoimmune. I was basically in a supine position for 2 weeks straight. They tested me for everything but could not find a cause. My parents talked to dr. robertson at vanderbilt and he guided the physician seeing my case through the process of what medications to give me. He said vanderbilt has a long wait schedule and they usually dont see patients until this happens multiple times. He was very kind and helpful though. I ended up getting better after being put on medications like paxil, florinef, inderal, and others along with just time. I did not truly feel better til about 5 months later. The endocrinologist I still see said it was caused by a neurotropic virus because of the sudden onset of symptoms. He said the virus made my autonomic system go haywire. I did really well for about a year and then got sick again but no where near as bad as the first onset of symptoms. I still question if his diagnosis is right but there aren't too many physicians in my area that are knowledgeable about dysautonomia. Also, i did not feel sick when it started as some people due with flu like symptoms, i felt fine until my heart started racing. And before Jan 2010 i never experienced any kind of these symptoms or had any problems. I never even had a hospital stay other than getting my tonsils removed.

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Oh boy, it sure did!! I've had symptoms since I was a teenager, but it was nothing severe. And I had an 8 month long episode back in 2005 that was never diagnosed. But then on August 6th and completely out of the blue I fell apart. I had just taken a shower and was laying on my bed to catch the weather, after that I got up to comb my hair out and I had instant vertigo and nausea, mixed with loss of balance, and a terrible feeing in my head. It scared me so bad, hubby called for an ambulance, and while at the ER my blood pressure dropped to 70 over 40, and my body wouldn't stop shaking. I was diagnosed with dehyrdration and kept for 2 days. I was released feeling just as bad as when I went in.

Two weeks later I was feeling even worse and went to see my family doctor, who completely blew me off and said I was completely fine and told me I need to eat better and exercise and sent me on my way.

I continued to decline with new symptoms every day, until I found myself lying on my bathroom floor sobbing with bad nausea, tremors, dizzy, and weak and feeling hopeless. It was at that point I drove myself to a different hospital where they discovered I was having postural hypotension, and admitted me for 5 days and ran all kinds of tests. But still no diagnosis. A few weeks later my cardiologist ran a tilt table test and I was diagnosed with dysautonomia.

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Yes exactly how you described. I went one night to that movie Cloverfield on opening night and felt dizzy and tired. Woke up the next morning unable to stand and then the adrenaline surges started, passing out, racing heart, so out of breath, thought I was going to die at any second. I wouldnt sleep at night until my boyfriend woke up the next morning because I thought I would die in my sleep. Within the first week, I went to the ER 5 times. Lexapro get me out of that mess thank god but now it has returned :/ Weird thing is I was fine the day before I came down with it. I went to work and school, then that night just felt off. I literally got sick in one night and havent been the same since.

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Yes, my POTS symptoms suddenly appeared. Overnight, I went from normal 10 year old running around and playing to child who just wanted to lie on the sofa.

I did have good and bad patches in the early years of POTS until it became permanent in my teens. Linking in with another post I have just replied to, I am sure that hormones, along with my genetic predisposition though EDS3, started off the POTS.

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