Patient Comments: POT Syndrome - Symptoms


Please describe your symptoms of postural orthostatic tachycardia syndrome (POTS). Submit Your Comment

Comment from: SF, 45-54 Female (Patient) Published: September 26

My postural orthostatic tachycardia syndrome (POTS) symptoms started 25 years ago with sinus tachycardia. I took betablockers for it for years and led a stress-filled life out of my own choice. Slowly it got worse. Now I'm mostly in bed. I keep vomiting, if I do anything 'normal' when my body cannot cope with it (like take a shower, do my bed, walk somewhere, sit when I should not). When I eat, I have to lie horizontal for 2 to 4 hours, if I want to keep the food inside. Take this one seriously early. It's a slow-moving stealthy disease.

Comment from: Mimi, 65-74 (Patient) Published: March 19

My heart races terribly and my pulse goes up to 140 at times because of postural orthostatic tachycardia syndrome (POTS). Then in the middle of all that my heart pauses. I was on metoprolol for 3 years. It made me seriously depressed and I gained a lot of weight.

Comment from: C-y, 35-44 Male (Patient) Published: October 26

About 2 and a half years ago, I kept having on and off palpitations that drove me several times to the emergency room. I was hospitalized for chest pain and strong dizziness for 4 days, and had stress test and heart echo. I have a type 3 Brugada (not showing all the time, and suspected as non-diagnosed with drugs in my case). I still exercise, have postural orthostatic tachycardia syndrome, and it is getting worse since Hashimoto’s thyroiditis came into play. I know the orthostatic intolerance came gradually after 2 inguinal hernia repairs (one laparoscopic). My blood pressure is a mess. Good luck.

Comment from: Concerned mom2615, 45-54 Female (Patient) Published: October 03

I am a bit familiar with this postural orthostatic tachycardia syndrome (POTS). I was diagnosed just days ago because of orthostatic blood pressure, dizziness and dysautonomia symptoms.

Comment from: Alyssa, 25-34 Female (Patient) Published: July 05

My doctors had diagnosed me with nonspecific vasovagal syncope when I was a child (around 9) and I had been able to maintain stability through diet but after my 25th birthday my symptoms worsened. After exhaustive testing I finally received a diagnosis of POTS (postural orthostatic tachycardia syndrome) and am on a midodrine regime. While the symptoms of POTS have mostly subsided, I have noticed increased gastrointestinal cramping and my hands and feet become colder and numb more often.

Comment from: Jdbrock120, 35-44 Female (Patient) Published: September 03

I haven't been diagnosed with postural orthostatic tachycardia syndrome (POTS) yet. I've been searching in vain trying to find out what's wrong with me and why it's getting worse. I just had an MRI to rule out Addison’s. My first symptoms started at 14. Every once in a while I'd get head rushes. Didn't think much about it, mom got them too. Over the years the symptoms got much worse. I've passed out 8 times in 15 years. My blood pressure average is 90/60, that's with fludrocortisone and midodrine 2 times a day. I'm so fatigued I can't function. The doctors don't care.

Comment from: SaskiaRose, 25-34 Female (Patient) Published: March 06

I've recently been referred to a cardiologist for syncope episodes. My symptoms include light head, palpitations, nausea, burning sensation in ears and head, passing out, body spasms, shortness of breath and sweating. I wonder if this could be postural orthostatic tachycardia syndrome (POTS).

Comment from: MamaPoTS, 35-44 Female (Patient) Published: March 07

I recently found out I have postural orthostatic tachycardia syndrome (POTS), after seeing many doctors as well. I've been told previously that I have hypersomnia, narcolepsy with cataplexy, vasovagal syncope, and even a conversion disorder. A tilt table test confirmed my POTS diagnosis. Doctors put this test off because my blood pressure was always normal, but in my case, during the test (and in those times of blacking out) my blood pressure and heart rate both went up. So there is such a thing as orthostatic hypertension. They just assume it will drop because that is what it is supposed to do. If you have the symptoms and feel like you might have this, ask your doctor for a tilt table test. With these results I was sent to a specialist who ordered me to wear 30 to 40 mmHG thigh high compression hose and an abdominal binder, explaining to me that blood had been pooling in my legs and abdomen all this time. Some of my weirder symptoms were involuntary muscle contractions in my abdomin. The doctor never confirmed this, but they stopped after wearing the binder.

Comment from: anne, 55-64 Female (Patient) Published: March 15

I suddenly developed generalized lethargy and frequent dizzy spells which rapidly went on to sudden consciousness collapses, where I could still hear people but I was totally limp, heart pounding and horribly dizzy and unable to respond. My blood pressure and pulse would increase markedly. This would happen up to 6 times a day and often I would barely recover then I would have another. I would be left weak and exhausted for hours afterwards. Luckily I was put into a private hospital and had many tests, ultimately my physician came to the POTS (postural orthostatic tachycardia syndrome) diagnosis. I have just started on a beta blocker 3 days ago and already improving. I also have to drink 3 liters of water per day and have salt tablets. I have noticed my memory is not as good as before and I am still a bit weak but it is early days and I am hopeful of a full recovery.


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Comment from: Pat H., (Patient) Published: October 02

I think I have POTS (postural orthostatic tachycardia syndrome). I have had this fainting disorder ever since I was about 18, after I gave birth. When I'm sitting and I get up and after standing for 15 minutes I get very hot and sweaty, then I have a rapid heartbeat, my ears ring, and then everything spins. I then pass out if I don't lie down first. It has happened a few times a year, but it happens quite frequently now. It's very frustrating. The doctors say that I have poor circulation. After seeing POTS, it is exactly what happens to me.

Comment from: Joi, 55-64 Female (Patient) Published: August 17

I believe I may have POTS (postural orthostatic tachycardia syndrome) as so many of the symptoms fit. I have had headaches and neck pain for 40 years, and in stress situations or periods of standing for too long I get lightheaded, begin to experience copious sweating and if I cannot sit or lie down, I may pass out. Paramedics have been called and I was told I had extremely low blood pressure on each of these occasions and was experiencing tachycardia. I have been told several times this was vasovagal syncope. I have had memory problems on and off as well. These incidents have been quite far apart till recently. Now I am 64 and have a bad back that spasms and if I am on my feet for long, the same thing happens. I am not sure if it is POTS because my heartrate is higher than normal most of the time (95), and does go up when I stand but not 20 to 30 points. But the profuse sweating, and lightheadedness happen often now when I have to stand. I am literally drenched after a few minutes and must sit or lie down for 20 minutes or more.

Comment from: Linda68, 45-54 Female (Patient) Published: March 27

I've had postural orthostatic tachycardia syndrome (POTS) about four years now. At first my symptoms were low blood pressure and dizziness and tachycardia upon standing. I was put on Florinef and midodrine. I now have all those symptoms and several more such as vasovagal episodes, tremors, leg jerks, severe arm, leg, chest and abdominal pain, severe vertigo, ear pain, ringing in my ears, migraines, tingling in fingers and toes. Some days I can't walk and others I need help walking. Fatigue is horrible. All I want to do is sleep. I'd love to know if anyone else has it this bad and what their treatment plan is. Thank you!

Comment from: Tracy, 35-44 Female (Patient) Published: January 06

My symptoms of postural orthostatic tachycardia syndrome (POTS) are rapid heartbeat, fatigue, dizziness, and disorientation. I was recently diagnosed and I feel much better by drinking lots of water and extra salt. I have been pacing myself in my daily routine but do get tired after little activity.

Comment from: MissyD, 25-34 Female (Patient) Published: November 12

Fludrocortisone worked wonders for my postural orthostatic tachycardia syndrome (POTS). I was on it for a year, but my prescription expired and I can’t find another doctor. I have been off it for a month and I am nearly bed ridden, POTS symptoms give me panic attacks and it is hard to breath. Fludrocortisone was a life saver to me.

Comment from: Laurie, 55-64 Female (Patient) Published: November 12

Ugh, what a journey! I have been healthy and active my whole life. I got a virus and slowly and progressively postural orthostatic tachycardia syndrome (POTS) took over my life. I thought I was dying or something was seriously wrong with me! I lost weight, had frequent headaches, exhaustion, I was unable to walk any distance without feeling like my legs could not hold me up, exhausted walking one flight of stairs, and foggy brain; and I could get all my symptoms to abate when lying down. I am very sensitive to any medications. I am on a small beta blocker and a small dose of an anti-depressant. I am 2 full years into the journey. No progression yet but I hope every day for healing.

Comment from: 34-41, 13-18 Female (Caregiver) Published: July 01

My daughter has possibly been diagnosed with postural orthostatic tachycardia syndrome (POTS). She gets sharp pain in her chest with the feeling of excessive weight on her chest and dizziness with heart palpitations. She experiences periods of occasional blacking out or passing out. She also is extremely fatigued all the time. She is 18 years old and the symptoms started to appear shortly after giving birth. We have been dealing with a cardiologist and now are on to a neurologist with really no luck other than a possible name for what is ailing her. Needless to say, it is extremely frustrating for all involved!

Comment from: jobe, 45-54 Male (Patient) Published: November 07

I was diagnosed with POTS several years ago. My symptoms included chest pain, severe fatigue and dizziness with feeling light headed. Every day was a struggle. I went through several doctors before being diagnosed and had cardiac problems which worsened. However, I started to do meditation (transcendental meditation) which I had learned when I was fourteen, but stopped when I got older. Initially, it did not make much of a difference but over a period of 6 months, I noticed that my symptoms slowly disappeared. It seemed to regulate my blood pressure. I still have an occasional chest pain and dizzy spell but not on a daily basis as previously.


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Comment from: Delyiakat, 45-54 Female (Patient) Published: January 17

I was reading the post from the lady that said her blood pressure increases six times a day. This is what happens with me. This is why doctor said it wasn’t postural orthostatic tachycardia syndrome (POTS), but now I am wondering. My blood pressure changes on position and most doctors want to put me on blood pressure medicine but it does not work. I wonder if anything shows in blood tests. I also just started getting migraines and shoulder pain bad and take ibuprofen for it. I am a 54 year old female. I also have blood in urine.

Comment from: leeann, 35-44 Female (Patient) Published: October 14

I have been suffering with dizzy spells for 3 months now; sitting, standing, and lying is the worst, more so if I lie on my right side, wow, it is horrible. I have noticed also the odd day I feel out of it and shaky like I am low in sugar but am not. I get very confused and my anxiety goes very high and I feel very strange. I wonder if I could have postural orthostatic tachycardia syndrome (POTS), my doctor just says it is fibromyalgia but I know it is not.

Comment from: LIS., 55-64 Female (Patient) Published: April 22

My symptoms are feeling faint, not being able to stand for long, dizzy, feeling unwell, and dry mouth all the time. I am feeling my heart beat in my throat and head worse when I stand, and low blood pressure. I have high heartbeat, worse when standing, and when exerting myself, I have pain in the chest and feeling of tightness as if something is sitting on me. Sometimes these symptoms last for several days and I am unable to function properly. I had an episode while on holidays and was hospitalized and had several tests. I have been diagnosed with vasovagal syncope.

Comment from: 25-34 Female (Patient) Published: March 03

I was diagnosed with postural orthostatic tachycardia syndrome (POTS) last year. My symptoms include extreme fatigue, headaches, fainting and dizzy spells, disorientation and tongue spasms. It has been a constant struggle since being diagnosed.

Comment from: meeeee, 19-24 Female (Patient) Published: December 09

My symptoms are lack of focus, lightheadedness when standing, constant fatigue, blue swollen feet after standing a while (especially in shower), feeling the heart racing.

Comment from: Lucy, 25-34 Female (Patient) Published: October 18

I am constantly feeling tired, drained and weak for no reason. Normal activities are like a workout at the gym. I am feeling dizzy and disorientated with the feeling that I'll pass out. I am sweating, clammy and looking grey. I have the feeling that none understands.

Comment from: d, 45-54 Female (Patient) Published: January 23

I was told I have a vestibular problem after a TBI (traumatic brain injury) and my symptoms were this: I couldn't get off the couch for weeks without making myself sick. A therapist came to my house periodically but didn't really help at all. I still have problems 12 years later.


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