7 Bizarre Ways You Know You Have POTS

7 Bizarre Ways You Know You Have POTS

Before I was officially diagnosed with Postural Orthostatic Tachyardia (POTS), I just thought these weird symptoms were a part of me.

People would make comments and I would respond with “It’s just who I am”. Thankfully, after I was diagnosed with Lyme, I found a cardiologist who understood that this disease goes hand-in-hand with POTS.

POTS affects everyone differently. Some might have more or less symptoms than others. But there are a few pretty weird symptoms that a lot of us share.

  1. You kind of black-out a little every time you go from sitting to standing, making for a little confusion when your vision comes back.

    Source: https://media0.giphy.com
  2. You start to faint if you stand for more than a few minutes without a lot of movement. Showers are the worst!

    Source: https://media1.giphy.com
  3. If it’s kind of cold, you are REALLY cold. So cold, that your hands are like ice and nobody wants you to touch them.

    Source: https://media0.giphy.com
  4. If it’s kind of hot, you are REALLY hot.

    Source: https://media.giphy.com
  5. Your heart palpatates, but instead of just beating really fast, it beats irregularly, even if you’re feeling zen and not particularly anxious.

    Source: https://media.giphy.com
  6. You feel tired, pretty much always, regardless of rest or diet.

  7. You feel dizzy and lightheaded at the most inconvenient times, like work meetings or social functions.

    Source: www.media.giphy.com

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

This Post Has 28 Comments

  1. Two words: Purple toes

    1. YES. YES to this. And even the shins and calves for me sometimes.

      1. I made them roll my pants up during my tilt table just to see how bad it was. Yay for purple people!

  2. For me it’s trouble breathing/ slight chest pain after carrying something, or trying to walk at a faster pace. They thought it was asthma until I went through that test and passed with flying colors.

    1. Wow, I was diagnosed with asthma as well. It made no sense becauase I was a runner and had never had an attack. Thanks for sharing Beth!

      1. Glad I could help. My understanding is that they just diagnosis asthma without running the histamine test quite often. I turned as red as a tomato, and she could hear me breathe, but the actual test showed very little change.

  3. If your heart beats irregularly, aside from just fast, it’s probably NOT POTS. POTS is an increased heart rate with a normal rhythm, it shouldn’t be irregular. That would indicate something else going on.

    1. It might not be regular in all cases. With dyautonomia, benign heart murmurs aren’t uncommon resulting in irregular palpatations. An echocardiogram is usually done in this instance to make sure it is benign. However, with such common palpatations, the presence of the benign murmur can be heightened. Additionally, arrhythmias have also been reported in POTS patients.

  4. Ugh. Blood pooling and overstimulated senses.

    1. The blood pooling is ridiculous! How bad are your overstimulated sense? Do you always have them or do they come and go (like a lot of dysautonomia symptoms)?

  5. Digestive problems with panic
    Then nearly fainting from the ordeal
    Sweats really bad

    1. Sweats! I hate those. And digestive issues, oh my gosh. I don’t know how many doctors said I just had “IBS” despite all of my dietary changes.

  6. I am able to wake up in the middle of the night, and without attempting to sit up or rollover-I faint! Not supposed to be possible but at least 7 “episodes” witnessed by my husband says otherwise!

    1. Are you sleeping on your stomach or does it happen in a certain position? It could be that. I get faint if I sleep on my stomach. I wake up just long enough to realize something bad is going on so I roll over.

      1. Wow! I have never fainted laying down. Those episodes sound confusing and frightening!

  7. She. Your blood pressure randomly drops crazy low and it causes you to hurt all over, among other things. The only way I can describe the discomfort I’m in when that happens is that it feels like my veins hurt or that my chest is caving in. Sometimes my skin gets ultra sensitive or I feel like I might vomit. That usually only happens when my bp is like 90/50 or lower. Which usually happens at least once every two or three weeks…

    1. Guh! Hailey I can totally relate. I have awful nausea every day, right when I wake up and attempt to get out of bed. It’s like… we are rarely/never TRULY comfortable. Keeping fighting for those good days!

  8. Hello there !
    Apparently (very few) people are aware that there is a several kinds of dysautonomias in ME disease (Myalgic Encephalomyelitis)
    So I will wish to give my testimony:
    My dysautonomies are so severes that I did in 2 years 6 T.I.A., as I accumulate:
    – (Much) less blood volume (NB: patients with ME, with cardiovascular involvements (the most severes, or about 30%, can have up to – 50% of blood volume)!
    – Almost no production of ADH (Anti-Diuretic Hormone), and Iam obliged to supplement me with Desmopressin
    – Very strong involvement of the ANS
    – Etc …
    So we suffer, among others, different forms of dysautonomias, some holding more than one (POTS, OI, etc …)
    Thanks for reading me 🙂

    1. Thanks for sharing Funkyqueen! Your testimony is so powerful in demonstrating the struggles with dysautonomia. Sending you positive vibes!

  9. With POTS do any of you ever have trouble thinking straight? Carrying on a conversation? Doing homework or writing anything at all?

    1. I do! But I also have chronic Lyme (which caused my POTS) and brain fog is common with that. The extreme fatigue and cognitive impairment is compounded by both conditions

    2. Yep, all the time. I’m real bad about jumping topics in a conversation, and spouting off randomly because I forgot about it earlier.

  10. Does anyone with kids who suffer from POTS have any suggestions on regulating it without the use of medications? My son has it pretty bad, we’ve had a few fainting spells, but generally he just vomits like a cartoon character and then wants salt. We thought we had it under control with a higher sodium diet that included sports drinks to keep him hydrated, but that doesn’t seem to be working right now. He’s very athletic but often sweats like he ran a marathon in just 10 minutes of activity. I’m looking for anything that might help me get this worked out for him. It’s so hard to see your kid like this, and I feel useless! Tia

    1. Hi Debbie! I am not sure how old your son is, but when I was a kid, I had POTS and my fainting spells worsened through puberty. I also vomited/wanted salt/was very athletic, but a high sodium diet didn’t do anything for me (it still doesn’t– I was taking salt pills). I wrote this article on ways I have managed my symptoms http://patientworthy.com/2016/01/19/how-to-manage-pots-symptoms/. It is more geared toward adults, but there might be something in there you can implement with your son that could help.

      When I was 14, my parents encouraged me to charge of a lot of things (diet/exercise) to help manage my symptoms because it made me feel empowered instead of like I need to be taken care of. You can find specifics on diet in my article. My PCP also says that strengthening the leg muscles also helps with fainting– not just running but lifting weights, squats, all of that. Weight lifting in high school was and still is really important in managing my fainting.

      Vomting: I would vomit mostly in the mornings, as soon as I woke up. It was exacerbated by dehydration, fatigue and cars/trains. I manage this through staying incredibly hydrated with water/lemon water/tea throughout the day and before bed. I keep water by the bed and drink it as soon as I wake up, and eat before I shower or do anything else. That helps with the vomiting.

      Sweating: For me, I think it comes from not being able to regulate my temperature. So when it’s kind of cold, I am REALLY cold. When it’s kind of hot, I am REALLY hot. I can be sweating and cold at the same time. If your son has anything like that, I would say again that hydration has been key, since he is losing a lot of water through his skin.

      I’m not a doctor, these are just things my own PCP has suggested and I have had success with, that don’t require medicine. I hope this helps!

  11. Is there another way to be diagnosed without the tilt table? My step Daughter has this supposedly and refuses to take the test. She has only passed out when were not home. She never really eats and is always freezing. She hikes a lot and doesn’t seem to be ill except when its convenient. I don’t want to seem cold hearted here just wondering if she is playing a good game or is really sick. Oh and she smokes daily. So when you say sweating, How much sweating? I never see her sweat. Only freezing

Have something to say? Comment here...

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

© Copyright Patient Worthy

Close Menu