Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

I'd appreciate if all members who have CFS/ME participate in this POLL on POTS&NMH

Discussion in 'General ME/CFS Discussion' started by Tired of being sick, Nov 4, 2014.

?

Have you been diagnosed with POTS

  1. Yes

    32 vote(s)
    40.0%
  2. No but I suspect it

    18 vote(s)
    22.5%
  3. I know for sure I do not have POTS

    18 vote(s)
    22.5%
  4. I do not really understand POTS enough to suspect it

    5 vote(s)
    6.3%
  5. I know what POTS is but it is on the back burner because I already have too much to deal with

    2 vote(s)
    2.5%
  6. I have Neurally Mediated Ortostatic intolerence

    12 vote(s)
    15.0%
Multiple votes are allowed.
  1. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    Tuesday 11/4/14 at 2:57 PM
    I am very interested to learn how many of you have POTS with CFS/ME.
    The claim is that 25% to 50% of CFS/ME sufferers have POTS.
    This POLL is also to get an idea on actual awareness as well

     
    Last edited: Nov 9, 2014
  2. ahmo

    ahmo Senior Member

    Messages:
    4,329
    Likes:
    6,507
    Northcoast NSW, Australia
    I had a lot of trouble early on, but as my health improved w/ diet change, detox and methylation protocol, no longer a problem. My BP tends to be rather low.

    PS...You and my brother, who was there at the time, are the only ones I know who still reference Mario Savio. (what a great name). great quote. :thumbsup::balloons:
     
    Tired of being sick likes this.
  3. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,283
    Likes:
    45,787
    It's actually a smaller percentage who have POTS, according to research. Most have NMH instead of POTS.

    You might want to re-write the poll, since you seem to be conflating POTS with OI, though POTS is just one type of OI.
     
    Mij and Wildcat like this.
  4. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,131
    Likes:
    21,341
    Albuquerque
    I said no because I know that I have OI in the form of neurally mediated hypotension instead of POTS. Would you like to add more choices to the poll?

    Does this estimate include other forms of OI than POTS?
    Sushi

    Edit: cross posting with Valentijn!
     
    Valentijn likes this.
  5. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    Last edited: Nov 4, 2014
  6. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    POTS is pretty simple to diagnose in my opinion.

    In fact, I diagnosed myself(as I did with all of my official diagnoses) before I was officially diagnosed with POTS by a cardiologist.
    However,as always,(in at least all of my experiences with doctors) when you "know too much" about your condition,it seems to rub doctors the wrong way
    and they will quickly dismiss you out of narcissistic behavior.
    In simpler words, they will not treat you and will ignore all facts you place in front of them.

    Now,
    Back to the topic.
    All you need is a blood pressure/pulse home model machine. Omron is the most accurate, IMO.


    1. lay in the supine position on your bed for around 10 minutes relaxing then take your blood pressure/pulse
    and record it.keep the sleeve/cuff attached.

    2.immediately stand up right after step 1 and take your blood pressure/pulse as many times as the machine will keep up during the 10 minute required time for the diagnosis of POTS AKA "poor man's tilt table test.
    *Note if you are a fainter have someone there who can catch you from falling if you pass out*
    If your heart rate/pulse increases 30 beats per minute over your recorded supine heart rate/pulse or goes over 120 beats per minute
    You have POTS.It is simple as that..

    What does the blood pressure reading mean during this test?
    The only role your Blood pressure plays in this test is to determine what type of POTS

    1.If your blood pressure continues to drop below 90/60 during the test you have the Neurally Mediated type of POTS or hypotension
    AKA low blood pressure.
    *This is the form that you will pass out on if you pass out*

    2.If your blood pressure continues to rise above 140/90 during the test you have the Hyperadrenergic type of POTS
    AKA high blood pressure.

    3. if your blood pressure does not change enough to be considered high or low by world standards during the test,which are below 90/60 for low blood pressure or over 140/90 for high blood pressure.
    This means you have the unaffected blood pressure type of POTS.

    4. if you have the 1,2 and 3 type of POTS and Neurally Mediated Hypotension as I do,you are pretty much screwed as to getting pharmaceutical help! This is the rarest form of POTS and OI and by my calculations, since I'm a man, we make up only 15%
    of all known types of cases combined ..As I have this rarest type of POTS, there are only around 15k to 25k cases including myself in the US..Saline IV is the only way to treat this type
    I have not yet to find any information on this type to even give it proper name!!

    I am by no means a doctor.
    I'm just a concerned man who had to do my own research in order to find the proper help or in simpler words,
    I am basically my own primary care physician.
     
    Last edited: Nov 9, 2014
  7. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,107
    Likes:
    23,258
    USA
    I voted yes in your poll but my POTS symptoms can really vary greatly. Initially I was diagnosed with inappropriate sinus tachycardia (IST) and then the diagnosis changed to POTS. With a low dose of Atenolol, my tachycardia is completely under control, but every time I try to stop the Atenolol, it comes back. When it is back, my HR can go into the 160's or 170's just because I stood up but I can also go for several days in a row with no episodes. So I have some version of POTS but it is not consistent. I wanted to explain this so my answer did not mess up your poll.
     
    Tired of being sick likes this.
  8. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,283
    Likes:
    45,787
    The wikipedia is referencing an article which is incorrectly summarizing research. The first article cited by it is referring to blood pressure, not heart rate. THe 2nd study mostly found tachycardia + hypotension, which could just as well be increased heart rate triggered by low blood pressure - they certainly don't mention POTS in the abstract, but rather refer to the findings as orthostatic intolerance. The CFS patients who were chosen to participate in the 3rd study were chosen because they were already known to have tachycardia. The 4th study involved a useless cohort (labeled with CFS based on mass-mailed questionnaire to the general public), and rather bizarrely concluded that healthy controls have greater incidence of OI than CFS patients.

    There's better research involving OI in ME patients, and it shows that almost all of us have OI, but that NMH is by far the more common version.
     
  9. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    @Valentijn
    Thank you for taking the time and energy to prove those % numbers are off..

    I'm not lazy,but extensive reading destroys my energy..

    Since I had the word "claim" in those %ages there is no need to edit the OP..
     
  10. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    When you are on medications that target slowing heart rate when you have low blood volume..

    I believe this will make one's symptoms and lack of blood damage to progress even faster.

    My common sense theory:
    The heart rate begins to beat rapidly because it is in crisis mode trying to get blood to limbs and brain.
    So if one slows the heart rate down without addressing the real reason why the heart rate is racing
    which is lack of blood volume this will prolong the time of getting the blood back to the critical areas
    thus making everything worse..

    IMO of course
     
  11. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    What is the difference between Neurally Mediated type of POTS?
    and
    Neurally Mediated Orthostaic Intolerence ?
     
  12. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,107
    Likes:
    23,258
    USA
    @Tired of being sick Thank you and I am happy to hear all theories on this and am still learning myself. In my case, even though the episodes of tachycardia were sporadic, at 160 to 170 bpm they were dangerous and debilitating. I've seen a total of three cardiologists since 2012, including my current cardio who is an autonomic specialist, and all felt that I needed to be on a low dose of a beta blocker (first metoprolol and then switched to Atenolol.) I take 1/2 of the lowest dose 1x per day and it is life changing.

    I am also addressing BP and blood volume issues with Midodrine, IV saline, and drinking lots of electrolyte drinks like Pedialyte, coconut water, etc, as well as salt stick capsules. All I can do is trust that this is the best treatment plan for me at this moment (but I know that each of us are very different.)
     
  13. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    @Sushi and @Valentijn

    I edited title and added Neurally Mediated hypotension

    Thanks to this thread I am quickly learning as I'm not afraid of being corrected, in
    fact I encourage it..


    I have
    1.Unaffected blood pressure form of POTS
    2 Hyperadrenergic type of POTS
    3.Neurally Mediatedtype of POTS

    PS I also edited the POTS poor man's tilt table test as well

    Is low blood volume found in all of these conditions 100% of the time?
     
    Last edited: Nov 8, 2014
    Sushi likes this.
  14. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,131
    Likes:
    21,341
    Albuquerque
    It is usually called Neurally Mediated Hypotension, I believe.

    Sushi
     
    Valentijn and ahimsa like this.
  15. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447
    Valentijn and ahimsa like this.
  16. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,041
    Likes:
    5,945
    USA
    I answered this, but I don't think I have Pots. I'm fine when standing. Sometimes I get dizzy, but that's in the AM.
     
  17. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,283
    Likes:
    45,787
    There is no "Neurally Mediated Orthostatic Intolerance". It's called "Neurally Mediated Hypotension". The biggest difference is that POTS hits immediately when standing up, whereas NMH may be delayed by an hour or more. NMH will also feature reduced blood pressure and/or pulse pressure, whereas POTS is basically just tachycardia when standing up.

    I get tachycardia sometimes, but it's secondary to the NMH. My heart rate usually doesn't rise immediately when standing, but after some minutes (or hours when it was less severe), my pulse pressure drops and my heart rate rises.

    Unfortunately people have come to use "POTS" when they mean "Orthostatic Intolerance", so there's quite a bit of misunderstanding in the area.
     
    Last edited: Nov 5, 2014
    Sushi and alex3619 like this.
  18. alex3619

    alex3619 Senior Member

    Messages:
    12,392
    Likes:
    34,685
    Logan, Queensland, Australia
    NMH do not have substantive elevated pulse rate (tachycardia) when the blood pressure is down. In my case I get bradycardia. My heart rate slows. This is bad because as the heart rate slows the blood pressure drops further. Its why I pass out walking up stairs sometimes, or even just standing up too quickly. It can be fatal if the bradycardia gets too severe, though POTS can be fatal if the tachycardia gets too severe.
     
  19. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    557
    Likes:
    402
    Western PA USA
    POTS is a lot more than just tachycardia when standing up.

    It is what disables me.
    It causes every CFS/ME symptom and then some for the fact everything is starving for blood
    but not receiving, causing.progressive aging.-

    I have Tachycardia the entire time I'm on my feet regardless of what my blood pressure reads.

    So if I have hypotension with instant tachycardia what is this called?
     
    Last edited: Nov 5, 2014
    CantThink likes this.
  20. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,107
    Likes:
    23,258
    USA
    My understanding from old definitions of POTS was that when a person stood up their HR rose by 30 bpm or to over 120 bpm and their BP dropped. But with newer definitions, it seems that they have removed the BP part and that people can have the rise in HR with or without the drop in BP and still be POTS. But someone please correct me if I am wrong?!!
     
    CantThink likes this.

See more popular forum discussions.

Share This Page