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The complexity of diagnosing postural orthostatic tachycardia syndrome...

Discussion in 'Other Health News and Research' started by halcyon, Jan 30, 2016.

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Does your POTS have diurnal variability?

  1. My POTS is worse in the morning

    17 vote(s)
    63.0%
  2. My POTS is worse in the afternoon

    4 vote(s)
    14.8%
  3. I do not notice a diurnal variability in my POTS symptoms

    6 vote(s)
    22.2%
  1. halcyon

    halcyon Senior Member

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    The complexity of diagnosing postural orthostatic tachycardia syndrome: influence of the diurnal variability

    Highlights


    • •We evaluated how the diagnosis can be missed in a single orthostatic stress test.
    • •Orthostatic tachycardia is more prominent in the morning, but not always.
    • •Symptoms were more frequent in the morning, but not during majority of the tests.
    • •Orthostatic hypotension can be accompanied in POTS.
    • •We suggest repeated orthostatic stress tests in clinically suspected POTS patients.


    Abstract
    We investigated how the diagnosis of postural orthostatic tachycardia syndrome (POTS) would be changed due to diurnal variability in orthostatic tachycardia. The orthostatic vital sign (OVS) test was administered to each patient twice, in the afternoon of the day of admission and the next morning (n=113). Forty-six patients were diagnosed with POTS, and the remaining 67 patients were assigned to non-POTS group. Heart rate increments after standing were larger in the morning than in the afternoon in every group (all P < 0.001). Among the POTS patients, 82.6% fulfilled the diagnostic criteria for POTS in the morning, and 52.2% in the afternoon. The majority of the POTS group (65.2%) displayed normal result on single OVS test. Orthostatic intolerance symptoms were provoked in only 45.7% of the POTS patients, more frequently in the morning. In conclusion, diurnal variability in hemodynamic parameters and provoked symptoms significantly challenged the diagnosis of POTS.
     
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  2. halcyon

    halcyon Senior Member

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    I thought this was interesting because I have the opposite experience from the study. My POTS symptoms are much less severe in the morning, and they get steadily worse throughout the day. After resting in bed most of the afternoon and evening, I usually find they are improved again in the night time before going to sleep. I'm curious what others experience.
     
  3. *GG*

    *GG* Senior Member

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    Just breaking this up some, wondering if I have this, having issues with blood pressure lately and I am definitely not a morning person anymore!

    GG
     
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  4. Hip

    Hip Senior Member

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    When you say your POTS symptoms, do mean the increase in heart rate on standing symptom, or are you talking about a cluster of symptoms?

    The reason I ask is that I have self-diagnosed with POTS, based on my increase in heart rate (by around 30 bpm) that appears within 2 minutes of standing (but I don't have any blood pressure symptoms).

    However, apart from the heart rate symptom, I have never been able to determine whether I have any other POTS symptoms. Or more precisely, I have never been able to work out whether some of my ME/CFS symptoms might in part be due to POTS (since POTS and ME/CFS share some symptoms).

    So for example, POTS and ME/CFS can both cause brain fog; so if you have brain fog, what percentage comes from ME/CFS, and what percentage comes from POTS?

    Has anyone been able to clearly identify a POTS symptom (excluding heart rate increases), and distinguish that symptom from their ME/CFS symptoms?


    POTS symptoms are listed here, and a more comprehensive list is here.
     
    Last edited: Jan 30, 2016
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  5. Sushi

    Sushi Senior Member Albuquerque

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    Since most are somewhat dehydrated early in the morning before "tanking up" with liquids and electrolytes, that could certainly be a factor. My autonomic specialist recommended drinking 750 mls or electrolytes before even getting out of bed.
     
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  6. Hip

    Hip Senior Member

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    Is thirst and dehydration in the morning considered a POTS symptom? It is a symptom I certainly have, as I invariably feel the need to drink two or three 250 ml glasses of water in rapid succession immediately on waking. My head sort of feels dehydrated when I first wake up. (I never thought of adding electrolytes to my water though; perhaps I should try this).

    My blood sugar is fine, so my thirst and dehydration feeling is not related to diabetes.
     
  7. Sushi

    Sushi Senior Member Albuquerque

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    I haven't heard so specifically, but since few people drink much during the night they tend to be somewhat dehyrated in the a.m. and that can exacerbate POTS symptoms.
     
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  8. halcyon

    halcyon Senior Member

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    I should have been more explicit. I meant just the orthostatic heart rate increase as that is what they say they measured as being different between morning and afternoon.
     
  9. jimells

    jimells Senior Member

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    Yes. When I am having a symptom flare I have clear signs of a hyperadrenergic state - what we called "shock" in first aid class about a hundred years ago.

    It was a real eye-opener to read about adrenergic receptors and finally understand what is happening when I feel hot at the same time my hands and feet are cold and clammy, along with palpitations, shaking, weakness, constipation, etc. These symptoms are all caused by an increase in norepinephrine/epinephrine. As I understand it, overall metabolism is turned up, increasing energy expenditure, and of course this is very bad for ME patients.

    Now when I am laying on the couch and I suddenly feel hot for no reason, I know it is time for another 5 mg chip of atenolol.

    When I read about folks having problems with anxiety, I often wonder if perhaps they have hyperadrenergic POTS and too much norepinephrine causing, or maybe contributing to, their symptoms.

    p.s. I did have a tilt table test quite a while ago, but on that particular day the POTS wasn't bad so the test showed no abnormalities. Fortunately my doctor still diagnosed me with POTS and prescribed Florinef and atenolol.
     
    Last edited: Jan 30, 2016
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  10. rosie26

    rosie26 Senior Member

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    I feel my POTS the worst when I am out. It can hit very hard while out and I then need to find the fastest route home - the need to lie down is overwhelming. So it doesn't really depend on time of day.

    Typically, the further away I am from lying down the worse my POTS becomes. It's all up and down though - sometimes I can stay out longer than at other times.
     
    Last edited: Jan 30, 2016
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  11. taniaaust1

    taniaaust1

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    and that can cause some severe panic even if one didnt have the hyperadrenergic kind as as you said the need to lay down is overwhelming.

    same here, it is just like going into shock when I have a POTS collapse. I'm sure it is a kind of shock.
     
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  12. taniaaust1

    taniaaust1

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    I consider dehydration to be a POTS symptom.. it is in my own case. Thirst is a commonly known POTS symptom. I need to drink too throughout the night.

    My POTS symptoms are very clear and POTS would have to be one of my top 3 problems with my ME/CFS (the other two being ME/CFS memory issues and the other one lack of stamina..not being able to do much without getting sick in various ways actually I think the POTS is my worst ME thing currently).

    I have ME brain fog, memory, confusion issues to one degree or another which is a constant thing, I also get POTS brain fog, memory issues and confusion issues. POTS symptoms are different, thou many ME symptoms come and go the POTS symptoms flare more rapidly and also can go quickly, things with POTS can change within like only a minute (I think of it being more volatile then ME).. so the pattern is different.

    My POTS symptoms can usually be related to a POTS trigger be it got to warm, standing, just ate, raised my arms etc. In my own case POTS is easier to avoid then an ME flare IF you can avoid your POTS triggers.
     
  13. Hip

    Hip Senior Member

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    That is very interesting. So a way to distinguish between POTS symptoms and ME/CFS symptoms is the timescale: POTS symptoms can appear or disappear in a timescale of minutes, whereas ME/CFS symptoms are more stable, and take hours or days to worsen or get better.


    Though in my case, I have not noticed any of these rapid triggers of POTS symptoms, or any symptoms that appear within a timescale of minutes. But maybe that is because my POTS is not that bad.

    The only thing I have noticed is that when watching TV, I find I often deliberately start slouching down really low on the sofa (as opposed sitting upright), with my legs resting on the coffee table, so that my whole body is nearly horizontal. I find that this slouched stance is more relaxing and recuperative, probably because POTS makes it harder for blood to reach the brain, and slouching down horizontally on the sofa helps counter this POTS problem.

    Prior to getting ME/CFS and POTS, I used to always prefer sitting bolt upright with a straight back.
     
    Last edited: Jan 31, 2016
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  14. rosie26

    rosie26 Senior Member

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    I have had POTS severe as well. I was never diagnosed but I gave myself a tilt table test accidently in my first severe year and I was violently sick about 3 minutes later.

    I don't know if you have a dishwasher, I don't, but I find standing with my hands in warm/hot water doing dishes a double whammy and I feel the POTS hit hard during it. I usually do a few dishes and then come back and do some more and if there are just a few dishes I try to race through them as quick as I can.
     
  15. ryan31337

    ryan31337 Senior Member

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    My experience has been exactly this. After a good period of recovery POTS has really hit hard, mostly solo without significant PEM. I couldn't tell the difference between the two at first so employed the short horizontal rest periods that helped me before, after I while I realised that even if I didn't zone-out with meditation/sleep like I had to before with PEM, I still got the benefit. I find just 20-30 minutes horizontal will really help, to the extent that I often get up and walk off without my glasses because my vision has become so clear again...
     
    Last edited: Feb 1, 2016
  16. ryan31337

    ryan31337 Senior Member

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    With regards to the study, I haven't been able to read the full text but I do wonder if they have considered the impact of PEM type phenomena in their testing too (I appreciate this is not ME/CFS research but the overlap is huge). I know that if I conduct a standing test one day, then I repeat it the next day I'll be already symptomatic and fail the second test even harder. With that added to the morning dehydration factor I think the result was a bit of a no-brainer...
     
  17. ahimsa

    ahimsa Sick since 1990

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    I have some trouble separating which of my symptoms are due to POTS or NMH vs. ME/CFS. But the comments by @taniaaust1 apply to me as well.

    If there is a definite POTS or NMH trigger (standing even a few minutes, sitting upright at a desk for too long, getting too warm) then the symptom is most likely due to Orthostatic Intolerance. If it is something that gets better when I lie down (not necessarily gone, but starts improving very quickly) then it's probably due to dysautonomia/circulation/low blood volume/whatever.

    On the other hand, the autonomic problems can cause poor sleep which can make everything else bad. And resting all day paradoxically makes my sleep better which improves not only the obvious NMH/POTS problems but all the other symptoms, too.

    I don't really understand the different forms of POTS. But apparently these different types of POTS are more overlapping than they are distinct and separate. This image is from a study called "Postural Tachycardia Syndrome: Beyond Orthostatic Intolerance" (click on thumbnail to make it bigger]

    POTS-types.png

    This document also says that Vasovagal Syncope -- aka, Neurally Mediated Syncope (NMS), Neurally Mediated Hypotension(NMH), and other names -- can overlap with POTS:

    That's my own situation now. I've had two tilt table tests, one in 1995 (for initial diagnosis) and one in 2003 (for disability insurance). My heart rate on the tilt table test did increase but not enough for a POTS diagnosis. However on both tests my BP dropped suddenly (after a delay of either 20 or 30 minutes) to something unmeasurable and I passed out. Therefore, I got a diagnosis of Neurally Mediated Hypotension.

    At some point after 20+ years of this illness I started getting much higher heart rates within a few minutes of standing. So my cardiologist said that I have both NMH and POTS now.

    In short, Orthostatic Intolerance (POTS or NMH), especially when combined with ME, is complex and difficult to manage.
     
  18. halcyon

    halcyon Senior Member

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    It could apply, or perhaps not. POTS is a syndrome with multiple possible entry points. There is a chance that the orthostatic tachycardia in ME patients is of a different underlying etiology than POTS only patients.
     
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  19. ahimsa

    ahimsa Sick since 1990

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    PS. I didn't answer the poll because I've been on on various treatments for NMH/POTS (midodrine, florinef, RX potassium, salt, 3 liters water daily, etc.) for years. I would have to stop the treatment to test whether my NMH/POTS is worse in the morning vs. afternoon or evening.

    It's definitely worse before I take my first set of pills and water in the morning. And always worse on a full stomach vs. empty stomach.
     
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  20. ryan31337

    ryan31337 Senior Member

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    Agreed, I should have been clearer that the overlap can be huge in a subset of POTS patients (who more than likely would've received an ME/CFS diagnosis instead under different doctors/circumstances).

    Quick question for the experienced OI peeps in here: is NMH by definition a BP fall or can a severe narrowing of pulse pressure also be considered NMH? This is what I experience in standing tests and gives a similar end result. I would appear to be predominantly hyperadrenergic and rarely see any sort of BP fall, only a rise, most significantly diastolic.
     

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