I am 49 years old. I was diagnosed with a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (P.O.T.S) almost four years ago.

P.O.T.S is a syndrome that takes your life from you, not by death, but by the limitations it causes. Patients with P.O.T.S get brain fog so badly that at times you can’t function at all. Sometimes my children even have to complete my thoughts because I am unable to get them from my head to my mouth.

I have days on end that I am so dizzy I can’t get out of bed, and even laying down I still feel so dizzy I can’t open my eyes. The simple things we all take for granted– things like grocery shopping– have become huge challenges for me.

I seldom have the energy to go to the store these days, and even less often do I feel stable enough to drive. Florescent lights effect me in a very bad way, they cause me to get dizzy and faint.

P.O.T.S can cause a myriad of bizarre symptoms that stem from poor circulation. My blood pressure often goes so low it is undetectable, and my heart rate ranges between 25 beats a minute to 240. Just being on my feet longer than a minute or two makes my heart rate go up and my blood pressure bottom out.

Since P.O.T.S is such a rare disease, few doctors have even heard of it. Some have even treated me like a hypochondriac. I have days when I feel normal and healthy and think– are they right? Is it just me making this up?

It seems that many people without P.O.T.S can’t understand what it’s like to have so many different issues that show up unexpectedly, at any given moment. I hear on a regular basis that I need to “just try to get a job or exercise….” P.O.T.S was only formalized as a real medical condition in 1993, so to date, there is little research on the disease and even fewer treatment options.

Unfortunately, in my case, I also have two virus’s that cause chronic fatigue syndrome, and I am learning that CFS is also a common factor in people with P.O.T.S. Because P.O.T.S affects the autonomic nervous system and my circulation is so limited, I’ve experienced issues with multiple organs. I have Chronic Non Alcoholic Fatty Liver Disease, IBS Irritable Bowel Syndrome, Diabetes and possibly Pancreatitis; my Electrophysiologist recently informed me that people with POTS are susceptible to kidney failure because of the poor blood flow.

The best advice I can give someone who has been recently diagnosed with POTS is to never take no for an answer. Few doctors know anything about P.O.T.S, so do not let them treat you as if your making things up. Learn all you can about P.O.T.S and don’t let the medical profession push you around. My greatest goal is to get P.O.T.S recognized by doctors and disability. This is a very debilitating condition and needs to be accepted as one. Patients with P.O.T.S lose a lot to this disease, and we need to be able to maintain our dignity. The next step I’m planning on taking to improve my condition is to join the YMCA and do water aerobics as recommended by my Cardiologist.

11 thoughts on “Feeling Dizzy? Christy Explains the Many Symptoms of P.O.T.S”

  1. heather says:

    I have recently stumbled across POTS via the internet. After googling every symptom that has bothered for 15 years off and on. Now, I’m not sure what to do with this information. I was told I have Fibromyalgia and GAD. But nobody could explain my blood pressure being low as they said it didn’t exist clinically…or the fainting. Among the million other symptoms, any advice on how to approach a Dr about this without sounding like a hypochondriac? Thanks!

  2. RJ says:

    Heather, I hope someone replied to you some how or that you have some answers. The best support is joining a POTS group on Facebook – all of us in these groups struggled over years for a diagnosis and can help support you to yours (Whether it’s POTS or not)… Many doctors don’t have a clue about this, so we can help you find someone near you that does. It’s the only way…finding a knowledgeable doctor. Hope you get the help you deserve! It’s a tough road.

  3. Angie williams says:

    Hi. I’ve been googling POTS so much that I don’t know where I have all been anymore. This is one of the most recent blog I could find. I was wondering if u could help me. I had a sinus infection last month and did not recover. After weeks of lightheadedness, feeling like my heart was going to beat out of my chest, and inability to get off the couch, my husband demanded that my GP admit me into the hospital for further testing. I am (was) a 37 year old very active mom of three girls ages 6 – 15. Until a month ago, I was training for a half marathon that some friends and I signed up to run together in May. I was running 3-5 miles a day, 6 days a week. After a million dollar work up in the hospital, a standing test where my HR went from 60bpm to 140bpm from lying to standing and stayed btw 120-130 for 10 confirmed POTS. I was dismissed immediately after my diagnosis and the dr at the hospital told me, “If u r still not feeling better in two weeks, I will refer u to a cardiologist. I’ve prescribed some salt tabs and recommend U drink plenty of water.” That was last Friday. Today is Wednesday. That’s it? I have this life altering condition and I get salt tabs?? I’m so weak I can hardly hold my phone to write this. I have pushed my referral up and demanded to see a cardiologist before the two week timeframe, but I feel like I should have more guidance. I’m miserable! Everything hurts, I’m so tired, u
    Obviously know the symptoms. Salt tabs??? My question for u is, who DO I see? Do I start with cardiology? Should I have further testing? I’m lost and so tired and don’t know where to go from here. Thank u for sharing your story, and any advice u can give me would be greatly appreciated.

  4. Laura F says:

    I’m 16 years old and I have been experiencing basically all of the possible symptoms of POTS and I have IBS. I have gone both to the cardiologist and my regular doctor and both dismissed it. The cardiologist treated me like I came in unnecessarily and overall treated myself and my mother poorly. She diagnosed me with dehydration, which is complete and utter bull. I attempted to appease the doctors and tried increasing my electrolytes and fluid intake, however I FELT WORSE. I STOPPED THE INCREASE AND FELT BETTER. We contacted the cardiologist and asked her what she made of the situation and she gave an obscure answer. The more I read about POTS, the more I realize that this is what I have. I didn’t realize brain fog was part of the symptoms until I read this blog. Just another symptom I have. I have even been diagnosed with orthostatic hypotension, but the doctors still deny it. What should I do? Should I accept my fate and move on? Is there really anything the doctors can do for me if it is truly POTS?

  5. JP says:

    Hi- I read your post and my daughter (15) is going through the same thing- she had a sinus infection and then began getting all these unusual symptoms- dizziness, heart rate increase sitting to standing, tiredness, etc. Prior to this she was in good health, runner,etc. She’s had symptoms about a month…can you pls let me know if you have been treated and how and if you’ve found anything that has helped alleviate symptoms? The only test she had was the one where you monitor from lying/sitting/standing and she had a HR increase greater than 30 Bpm. She has been advised to hydrate, drink gatorade- tried for 3 days so far with no result. I hope you are doing better…

  6. Ali says:

    I’ve had these symptoms for the past five years and have completed test such as, seeing (e.n.t neurologist, cardiologist, m.r.i
    Etc etc… so far nothing . Nobody knows how to narrow down the issue the fact that I have been having dizziness feeling like fainting, heart beat increases significantly, foggy brain. I have been researching alot and hope that one day I find the cure. and feel normal again. Because this rare condition holds back a person from so many things in life.

  7. Rob Heatherly says:

    I hope you have found adequate treatment for POTS by now. I’ve been living with it for ten years now. The first five years I was mostly housebound. I discovered that medication Midodrine that changed my life for the better. I’m not anywhere near back to normal, but I do have a much better quality of life from it. You need to find the closest clinic that specializes in testing and diagnosing people with POTS Syndrome. My email is robinhood1966@gmail.com. If I can help in any way, please contact me.

  8. Rob Heatherly says:

    In the ten years of having POTS Syndrome, I’ve ran the marathon of seeing all types of doctors. At first trying to figure out what affliction was causing me all the symptoms that can manifest with this; finally was able to go to one of the five clinics in the country that can diagnose and treat POTS Syndrome. That doc recommended 2 litres of water each day and propanolol. Didn’t help. My doc eventually put me on Fludrocortizone. It helped some, but also caused a lot of anxiety and agitation. After five years of being housebound and poor quality of life, I found the med Midodrine through my own research. Had my doc place me on it in 2013. Was a huge increase in my quality of life. Not anywhere near normal, but I’m not bedridden and housebound 24/7 anymore. Is still a daily challenge. My best advice is to educate one’s self as best as possible, and also find the nearest clinic that treats this illness, and most of all to find any and all support groups possible. Is a very difficult lifelong affliction to deal with.

  9. Louise says:

    Hi Christy thanks for bringing awareness to POTS. I have been diagnosed for about three years after being told for 15+ years that all my symptoma were psychological. The long term effects of that is devastating. It took me getting so unwell and losing everything, and after finding pots on the web…demanding a referral to a cardiologist. Im in the UK and no one knows about POTS apart from those who have it it seems. Its an illness frienda/family do not understand which I think still makes me feel doubted at times. I still get told to ‘stop panicking’ and doctors still bring up anxiety even after my diagnosis of POTS and partial epilepsy seizures. I’ve felt so scared for so long and still do feel this way. I’ve been told it isnt my POTS causing my dizziness/vertigo when laid down so what you have written has taught me that what I experience is usual for POTS. Thankyou. Please keep putting the word out it has to be done. It worries me how many other cases will get missed and suffer alone. Thankyou. X

  10. Hi everyone. I am a 52 year old female. I was athletic growing up. I used to be super energetic with loads of energy every day. But then I was diagnosed with POTS in April 2018. My journey started with getting sick with bronchitis in November of 2016. By New Year’s Eve, my bronchitis hadn’t resolved with antibiotics and turned into pneumonia (along with Flu B). I was admitted to hospital for 6 days.. then begged them to release me so I could rest. They had to use the “vest” on me to break up the fluid in my lungs so I could get it out… By the first week of February 2017, I had Sepsis. After a broad spectrum antibiotic for a couple days I was on IV ceftriaxone for 23 days, using a Picc line. I went to Mayo (Minnesota) in March 2017 and they ran all the same tests, then told me my body had been through a lot and I just needed rest. Nobody got outside of that box… they just kept telling me to rest… it was beginning to look like Chronic Fatigue. After months of countless tests and doctor visits, we’re still trying to get a handle on this. In March 2018, I was diagnosed with pyelonephritis. Thankfully it resolved with meds. My cardiologist has me on .2mg fludrocortisone daily. He also has me in cardiac rehab three days a week. He said I need to be on a high sodium diet to raise my blood pressure.. but I’m concerned of how this “diet” will affect my kidneys… not to mention the weight gain it’s causing. I go back to the cardiologist for blood work tomorrow. My energy used to be through the roof, but now I’m laying down most of the time… I can’t be outside when it’s even in upper 70’s because I get hot quickly. My endurance and energy is super low. I was hoping maybe I’ll be referred to a doctor who specializes in POTS for help as well as diet recommendations as well as come up with some sort of a plan. I’m single and have only been working a few hours a week… which is only because I need to pay bills, not because I feel up to working. Any thoughts/suggestions are welcomed. I’m new at this and I’m still trying to figure this out through research online. Thanks.

  11. Molly says:

    I’m 26 years old and have had POTS since February of 2017. No health problems before then and then all of a sudden I’m at work (12 hour shift) and my heart rate never goes below 150s for about 16 full hours. It was a nightmare. I had chest pain, lightheartedness, dizziness, shortness of breath, and palpitations. I went to the ER. They gave me fluids, it corrected the high heart rate and was sent home. At that time I had been up for over 26 hours and was miserable. Since then, I visited a well known cardiologist who didn’t know anything about it but thought I had POTS. I was sent to a cardiologist (who specialized in POTS) who dismissed me as soon as I told her that my cardio thought it was POTS. She claimed that that was too rare and too specific of a disease. She wasn’t listening to me, acted dismissive, and by the end it felt like she was just honoring me. Immediately I knew that even if I did have POTS, that she would never admit it and never diagnose me with it. And I was right. Expensive tests later and she misdiagnoses me with something I clearly didn’t have. I went to see another cardio that also specializes in POTS and within 20 minutes of my exam, he knew immediately that I had POTS. He also said that I, without a doubt, did NOT have what that other doctor diagnosed me with. Because he listened and he cared. I absolutely hated that experience with that doctor and my heart goes out to anyone who has a medical condition, especially one as debilitating as this one, and has to go through numerous doctors and be made to feel like they’re just self-diagnosing and made to feel like a liar.
    Like the author, I have many good days and other days I have high heart rate, chest pain, blurred vision, shortness of breath, can’t think clearly, and can’t even function while standing. My body forces me to sit down or it’ll collapse.
    That hateful, non-compassionate, misdiagnosing doctor made me lose faith in the health care system during that period and that’s such a shame.

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