Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Do I have POTS?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by SJL, Feb 24, 2015.

  1. SJL

    SJL

    Messages:
    11
    Likes:
    2
    For around a month now I've noticed whenever I get out of bed or stand up from sitting down my heart will pound hard against my chest, my resting heart rate on a morning is in the 50's yet when I get out of bed it shoots to over 100 before resting in the 90's. The symptoms are worse in the morning and seem to lower throughout the day to where in the evening my pulse only goes up around 20 bpm when standing. If I lie down for a while then stand though it will do the same thing, for instance if I get out of bed on a night. I've been noticing headaches some days, I'm having bowel issues with a lot of gas build up and acid reflux. I'm also struggling to sleep properly, I get around 5 hours then when I try to go back to sleep it's a very light sleep that doesn't refresh me at all.

    I've had an ECG, blood tests and a blood pressure monitor and the doctor has told me everything is fine. He told me it's normal for my heart rate to do that :thumbdown:
     
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,895
    Likes:
    12,702
    Sth Australia
    that's clearly POTS if it is shooting up like that right after getting out of bed, while just only standing. Your doctor doesnt know a thing about POTS. You need to seek out a doctor who does.
     
    JaimeS likes this.
  3. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,891
    Likes:
    5,328
    Scotland
    Hi, @SJL

    As far as I know, it is normal for your pulse to briefly shoot up as soon as you stand up. It should then quickly fall again.

    In POTS, the pulse will increase by at least 30 bpm within 10 minutes of rising from prone to standing.

    There's a thread here on how do a poor man's test for POTS:
    http://forums.phoenixrising.me/inde...t-table-test-pmttt-for-oi-pots-and-nmh.12291/

    I tried this standing test several year's ago and initially ruled out POTS - my pulse and blood pressure just yoyo'd. I found that if I tilted against a wall (facing away, heels about a foot from the skirting, shoulders resting against the wall), then my pulse did go up by more than 30 bpm.

    I would try the standing version first and only do the tilt if the first test is negative.
     
  4. Hip

    Hip Senior Member

    Messages:
    9,341
    Likes:
    14,618
    This is very common for POTS to be worse in the morning. This means that the time of day that you do your POTS tilt table test can affect your diagnosis.
     
    Last edited: Feb 24, 2015
  5. SJL

    SJL

    Messages:
    11
    Likes:
    2
    I understand that on some days the condition can be better or worse as well?

    I'm not fully convinced I have POTS, I am male so the chances are pretty low but I definitely have some form of orthostatic intolerance. In the evening my heart rate may not increase as much but I've noticed simply standing up can give me a headache.
     
  6. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,378
    Likes:
    24,193
    USA
    @SJL If your HR is in the 50's lying down and jumps to over 100 when you stand up, that is POTS. Is it possible for you to have a tilt table test or wear a heart monitor that captures more than a few moments? The best one in my opinion is the Zio Patch and you can wear it for an entire week and you press the button each time you have an episode. This can confirm that your tachycardia is all sinus rhythm vs. an arrhythmia which is also beneficial to know.
     
    JaimeS likes this.
  7. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,327
    Likes:
    21,473
    Albuquerque
    The rates are lower for men, but there are still plenty of male patients with POTS. My autonomic doctor (male) had POTS. If you do decide to seek a Tilt Table Test be sure that the doctor really understands how to give one for Dysautonomia. Many docs give TTTs that really aren't set up to capture the nuances of Dysautonomia. Also, if you go that direction, make sure that the doc actually has knowledge of how to treat Dysautonomia or you will reach a dead end.

    Best wishes with this,
    Sushi
     
    SOC and Gingergrrl like this.
  8. Sidereal

    Sidereal Senior Member

    Messages:
    3,095
    Likes:
    17,172
    An increase of 30 bpm is an arbitrary threshold for a diagnosis of POTS. A line has to be drawn somewhere for diagnostic purposes in the absence of a blood test or scan that shows the disease but that doesn't mean that if your heart rate is going up by 29 bpm from lying down to standing you are healthy.
     
    JaimeS, Gingergrrl and Scarecrow like this.
  9. SJL

    SJL

    Messages:
    11
    Likes:
    2
    I'm having a rough time explaining it to my doctor to be honest, I've been very detailed with him so far yet he keeps telling me it's anxiety.

    I'm also struggling to explain to my boss exactly what it is, and of course until I can get a diagnosis which takes months in the UK there's nothing I can do.

    It has seriously affected my quality of life, before this I would exercise regularly whereas now just walking up stairs or outside for a while my my heart rate can reach 140. Being on my feet for a while just brings on a headache and fatigue and the only time I get relief is during the 5 hours deep sleep I can seem to get.

    I feel truly sorry for those who have suffered with this for years especially those stories I've read from people who can't get diagnosed, it's pretty much invisible to everyone else and most people don't seem to take you seriously when describing the symptoms.

    Of course I've now got myself more worried after reading what kind of illnesses can cause POTS.
     
    angee111 and Gingergrrl like this.
  10. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,089
    SOC likes this.
  11. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,327
    Likes:
    21,473
    Albuquerque
    You could also reference http://potsplace.com/ --good info there.

    Sushi
     
    SOC and Scarecrow like this.
  12. Sidereal

    Sidereal Senior Member

    Messages:
    3,095
    Likes:
    17,172
    Sadly, going to a random GP trying to explain this stuff is pointless since very few doctors in the world know much about POTS. Perhaps you might be able to get a referral to Julia Newton's clinic in Newcastle. She is an autonomic specialist.
     
  13. SJL

    SJL

    Messages:
    11
    Likes:
    2
    How would I go about getting referred if my GP thinks it's all in my head?
     
  14. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,891
    Likes:
    5,328
    Scotland
    Take information about POTS and the results of your poor man's ttt.
     
  15. SJL

    SJL

    Messages:
    11
    Likes:
    2
    He isn't interested, he told me to stop trying to self diagnose via the internet and told me that pulse rate varies in people when they stand up and that the rate it was reaching wasn't dangerous, he told me some people's resting heart rates are near 100.
     
  16. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,891
    Likes:
    5,328
    Scotland
    I think he is correct about the variability.

    Have you taken your readings over a 10 minute period?

    Perhaps you could post them here?
     
  17. SJL

    SJL

    Messages:
    11
    Likes:
    2
    I have done, in the morning my resting heart rate is usually below 60, upon standing it shoots over 100. After around 10 minutes it's usually around 90. Some days it will drop more though.

    It's the times when I get up and can feel my heart pounding against my chest that worry me, it shouldn't be working that hard. I know that heart rate increases with POTS but I rarely see people say their heart pounds against their chest with it.

    Walking up stairs seems to make my heart rate go higher than it does going from a lying down to standing position.
     
  18. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,891
    Likes:
    5,328
    Scotland
    It definitely does when it's bad.

    Do you have a blood pressure monitor with a memory function? If you don't, they are relatively inexpensive to buy although I appreciate that you may be on very tight budget. Do a poor man's ttt with the monitor (take two readings while lying down, one as soon as you are standing and then every two minutes until you reach the ten minute mark. Take that to your GP. Much harder to dismiss you if you have some hard evidence rather than a piece of paper.

    I would suspect that a lot, if not most GPs, will have little or no knowledge of POTS and probably would not know who to refer you to. Yours sounds very much in that category.

    If your GP still refuses to consider POTS as a possibility after you show them your readings, it might be worth contacting the clinic in Newcastle and asking them for advice on how to convince your doctor.

    Also, Julian Newton did a lot of awareness raising about POTS last year. I'll try to find something useful on that and post it here.

    Have you ever been diagnosed with ME or CFS?

    Do you mean a portable monitor? Did you see the readings. If you didn't, you can ask for a copy of your records.
     
  19. Scarecrow

    Scarecrow Revolting Peasant

    Messages:
    1,891
    Likes:
    5,328
    Scotland
    This looks like a useful website:

    http://www.potsuk.org

    There's a good directory of doctors, some of whom do private consultations.
     
  20. SJL

    SJL

    Messages:
    11
    Likes:
    2
    The portable monitor would only take readings when I was sat down. Every time I was standing it would try to take a reading 3 times then just give up. This meant all readings looked normal. I tried explaining this but I guess it is what it is. My blood pressure isn't really a problem anyway. I do have my own monitor.

    I've never been diagnosed with ME or CFS.

    I'll take some readings on a morning for a few days then contact my GP again.
     

See more popular forum discussions.

Share This Page