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Mixed Orthostatic Intolerance Syndrome?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Old Bones, Mar 26, 2016.

  1. Old Bones

    Old Bones Senior Member

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    I've coined the name "Mixed Orthostatic Intolerance Syndrome" to describe my current situation, and wonder if others experience the same.

    Years ago, I was clinically diagnosed as having Neurally Mediated Hypotension. Over time, my adverse response to standing (feeling close to collapse) lessened. A few years ago I self-diagnosed POTS (based on HR and symptoms). I assumed POTS replaced the NMH, but now I'm not so sure.

    Yesterday, I decided to try the "poor man's tilt table test" at home. The difficulty, and results, were not what I expected. Here are my figures over 30 minutes of standing:

    Resting: 103/60 HR 62
    Immediately on standing: 102/75 HR - 101 bpm
    Every five mins.: 102/85 - 107, 103/85 - 105, 124/71 - 108, 102/72 - 99, 110/80 - 102, 103/68 - 78

    At about the 10-minute mark, I was starting to feel pretty shaky. At the 20-minute mark, I felt almost unbearably weak, and my breathing became irregular. At 25 minutes, I suddenly developed extreme abdominal cramps. At 30 minutes, I could no longer continue, the urgent need to lie down was so great. My face was deathly white, as though no blood was getting to my head.

    Here's what surprised me . . . Yesterday, my blood pressure remained pretty stable, despite feeling even worse than I recall from years ago when my BP went as low as the 70/50 range while standing.

    Does anyone know if a person can have Neurally Mediated Hypotension (based on symptoms alone) even if their BP isn't particularly low? What effect might POTS have on testing for NMH? Perhaps had I been able to stand a few minutes longer I would have seen the expected drop in BP. Is it possible to have both POTS and NMH?
     
  2. Valentijn

    Valentijn Senior Member

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    @Old Bones - It sounds like the symptom you're noticing is tachycardia when standing. That doesn't necessarily mean that you have POTS, since other forms of OI can trigger tachycardia. When you stood up, and for 10 minutes after, your pulse pressure was very low (27, 17, and 18). Each heart beat is circulating too little blood, and the tachycardia is probably just a way to compensate and get more blood moving around.

    So maybe it would qualify as POTS ... but it would useless to call it POTS when it is triggered by a different blood pressure problem. The treatments needed are probably going to be completely different. For example, taking a drug to simply keep your heart rate lower might cause you to faint without the tachycardia allowing you to stay upright for a bit.
     
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  3. lnester7

    lnester7 Seven

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    You have a HR> 30bpm so I think you can have POts. Is what I understand I don't remember who here but they have a few types at the same time. Will dig and see if I find the combination NMh + POts.

    You can go to dinet.org and ask.
     
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  4. Old Bones

    Old Bones Senior Member

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    @Valentijn My thoughts, as well. I hesitate going to our local POTS clinic for a couple of reasons. First, they are affiliated with a cardiac rehab facility, and stress the importance of exercise as part of the treatment plan in their promotional material. If their knowledge of ME is instructed by the PACE study, I'd have no option but to be non-compliant.

    Second, I'm concerned about the possible prescribing of beta blockers -- quite likely, I suspect, with a HR typically in the 130's to mid-160's for activities of daily living such as walking slowly in the house, showering, getting dressed, talking on the phone, etc. But, my HR sitting down, as long as I'm not using my arms, can also be as low as 50. I certainly don't want it any lower. My father's high heart rate was identified in his late teens. He died in his sleep, too young. His doctor told me that had they not changed his beta blocker to a newer, supposedly better, medication just prior to his death, he probably would have lived longer -- the reason beta blockers terrify me.
     
    Last edited: Mar 26, 2016
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  5. Gingergrrl

    Gingergrrl Senior Member

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    Sorry I am not grasping this sentence but it sounds like you are saying if they had kept him on the beta blocker vs. changing to a newer med, he might have lived longer. Wouldn't this mean that the BB was helping? Or am I mis-reading it completely?
     
  6. Old Bones

    Old Bones Senior Member

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    @Gingergrrl Sorry I wasn't clear. My father was switched from one beta blocker to a different beta blocker -- a newer medication than the one he had taken for years. My understanding is this was done not because the older medication wasn't helping, but because the doctor believed "newer" meant "better", and that it would be even more effective. Instead, the wrong beta blocker resulted in his early death. For now, I'm not prepared to risk the same thing happening to me.

    I'm already aware that prescribing beta blockers for ME patients is controversial. They help some, and harm others, and there may be no way to know in advance which category I'd fall into. I do have a number of symptoms and other medical issues for which beta blockers are contraindicated, not to mention medication sensitivities even more severe than the typical ME patient. Regardless, if a lower heart rate on beta blockers caused me to do more without changing the underlying illness, I could perpetuate my typical push/crash cycle without the HR monitor pacing strategy I've been trying to fine-tune for the past few months.
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    Thanks for clarifying and that is the part I did not grasp which makes sense now. I wish doctors knew that newer does not mean better. It was this logic that made a former doctor give me samples of a newer antibiotic that nearly killed me in 2010.
     
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  8. ryan31337

    ryan31337 Senior Member

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    Hi @Old Bones,

    I'm not aware of any reason why POTS & NMH would be mutually exclusive. I'm actually fairly sure that my otherwise healthy girlfriend has both, she often has even worse orthostatic tachycardia than I do and then faints like clock-work 20 minutes into standing tests. A sudden drop in BP/HR is hard to catch at home though. My response is different, I can push on watching the pulse pressure narrow and the tachycardia increase, I feel terrible but my lights don't go out. Ultimately though I don't think you can be sure exactly what's going on from home testing, you really need a highly controlled environment with beat-to-beat monitoring (strapped down, arterial BP, ECG etc.).

    I've seen a big help from beta blockers, Bisoprolol 2x 1.25mg per day. I do fall into the hyperadrenergic profile though, always hypertensive & increasingly agitated when upright. These were prescribed despite me having a resting average HR of 45, on them I see it drop to 38bpm at times. I was concerned but the consultant wasn't bothered, he's a cardiac electrophysiologist with specialist interest in POTS so you'd hope he knows his heart rates! I think as long as you're not passing out or experiencing overt chest pain on them I guess its considered an acceptable trade off...
     
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  9. Old Bones

    Old Bones Senior Member

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    Thanks for your response, @ryan31337 . I decided to redo the test this morning -- exactly the same time of day and same protocol but with very different results. This time, I was able to stand for 40 minutes without feeling like I was going to collapse. My only symptoms were a few irregular heartbeats during the last two readings, and numb feet by the end. My worst reading today was 90/79 (pulse pressure 11) and a HR of 92 at the 25-minute mark. Based on this, shouldn't I have felt worse, not better? So, it seems my orthostatic issues are highly variable. This leads me to wonder if the appropriateness of any treatment prescribed based on results of one clinical test might change from day to day, moment to moment, depending on my condition at any given time.
     
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  10. halcyon

    halcyon Senior Member

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    This has been my experience as well, the symptoms are highly variable, and I've avoided trying any treatment because of this. Same as @ryan31337 I appear to be in the hyperadrenergic camp, with hypertension (especially diastolic) under exertion and orthostasis. When I lay down my BP returns to normal and my supine heart rate ranges anywhere between 55-100 (averaging somewhere in the mid to low 70s), depending on factors beyond my understanding. I don't see how you can treat something like that with medicine, so I just lay down most of the time.

    To me it all seems highly compensatory. Every so often when I stand up the tachycardia doesn't kick in. I will become short of breath and lightheaded for a few seconds until I get a big blast of catecholamines and my heart starts pounding hard and speeds up and the shortness of breath and lightheadedness goes away. If I blocked my tachycardia and/or BP increase with medicine I don't see how I'd be able to stand up.
     
  11. ryan31337

    ryan31337 Senior Member

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    Ouch, I'm surprised the monitor could even tell the diastole/systole apart! I guess that this is a massively complex problem and the impact of these very general 'over-view' readings really can't capture exactly what is going on. If you take my girlfriend for example, her orthostatic tachycardia is quite severe, yet it has no real impact beyond some morning wobbles and perhaps a tiny bit less overall stamina than a healthy person, not enough to stop her working full time & socialising. Yet for us it can be crippling, why? I would assume due to it being caused by different and perhaps attritional underlying causes. When a cardiologist sees the orthostatic tachycardia in an otherwise normal healthy person I can see why they might just brush it off as something inconsequential...

    Yeah, definitely a lot of factors at play that are always changing with us. My response doesn't fluctuate massively day to day, unless I'm in a serious PEM zone. However, over the past 6 months I have seen quite dramatic changes, usually changing over a short period of time (days) but with the new state lasting weeks or months. I feel there has been a marked change in my adrenal function recently and at the same time I have been poking it quite a bit with beta-blockers and salt/hydration, all of which appears to make a big difference in both test results seen and wider symptoms experienced, presumably because I'm less hypovolemic and less hyperadrenergic.

    This is something I wondered about with my bradycardia, if I can lose the standing tachycardia and get my BP down to < 120/80 will I suddenly then struggle because of the 40bpm pulse? Probably. Would I trade that for being able to eat without raging GI problems, not losing my vision & concentration after an hour upright at my desk, not sweating buckets whenever I stand up...probably! Hopefully an endo can shed some light on the reason for the low HR, there doesn't appear to be anything wrong electrically...
     
    Last edited: Mar 28, 2016
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  12. Alisha12

    Alisha12

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    Can it be actually reduced cerebral perfusion rather than BP or pulse?
     
    Last edited: Aug 19, 2016
  13. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    This was exactly my experience when using drugs to lower heart rate. Over the space of a week I became incrementally closer to unconsciousness as each day passed until i couldnt even be upright sitting in bed.

    As soon as I stopped the drugs, and my pulse went back to tachycardic, i was able to stand up again and my brain started functioning again.
     
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  14. Sidereal

    Sidereal Senior Member

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    Same here.
     
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  15. ahimsa

    ahimsa Senior Member

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    @Old Bones and others,

    My answer is a bit late (I noticed that this thread is from March) but here goes.

    I'm pretty sure that NMH and POTS can occur together. In fact, according to my cardiologist this is my current situation.

    I started out with an NMH diagnosis (Neurally Mediated Hypotension) because on my first tilt table tests my heart rate did rise but not enough for a POTS diagnosis. I just had the sudden blood pressure drop.

    But now (25+ years after onset) my heart rate can easily go up to 135-155 after just standing for a few minutes. I found this out when testing my standing blood pressure in the morning before taking my meds. In just the few minutes it takes for the machine to record the blood pressure my heart rate would often go up quite a bit.

    For what it's worth, here's an extract from the Johns Hopkins overview document on Orthostatic Intolerance:
    (emphasis mine)

    I've attached the full document below (PDF file) in case it helps.

    (edited to add more line breaks/white space)
     

    Attached Files:

    Last edited: Aug 18, 2016
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  16. ryan31337

    ryan31337 Senior Member

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    Here's a tilt table trace that might be of interest. On beta blockers but still saw a 40bpm increase from supine to point of syncope @8mins (well, damned near-syncope thanks to a quick nurse :confused:), so would assume qualifies as POTS + NMH. This was taken on a fancy beat-to-beat finger blood pressure monitor, which after reading 200/130, I hope was poorly calibrated!!

    [​IMG]

    The diastolic dysfunction didn't get too bad that day, little narrowing of pulse pressure, probably because it was all over so fast. What I thought interesting was the return of increased BP after resuming supine position, albeit with much less oscillation - IIRC its the oscillations rather than absolute blood flow on orthostasis that cause the cerebral problems.
     
  17. ryan31337

    ryan31337 Senior Member

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  18. halcyon

    halcyon Senior Member

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    Interesting. I've since had a tilt table test as well. Sadly my report is lacking in much of the raw data. I didn't get a cool graph like yours. They don't even list my diastolic pressures on the report for some odd reason.

    I had a similar experience, though my starting BP was high I think because they had performed other autonomic tests prior to the tilt (deep breathing and valsalva). Supine my systolic pressure was 145. At 6.5 minutes upright my systolic dropped from ~138 to 110 and right after this was when I reached peak HR of 151 (48 bpm increase from supine). This was also when all the nasty symptoms kicked in. Returned to supine, my BP went back up to 142 systolic. So I believe that qualifies as both POTS and orthostatic hyptotension. I guess I don't know what the diagnostic criteria is for NMH or what's different between OH and NMH.
     
  19. ryan31337

    ryan31337 Senior Member

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    From memory (shouldn't be trusted these days!), OH is an immediate drop in blood pressure, NMH is a delayed drop in blood pressure - I think the same thing as Delayed OH? So many names for practically identical things.

    NMH can be further broken down into primarily cardioinhibitory or vasodepressor too, depending on which goes down (can also be mixed).
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    Yes, can relate to this and I also did not get a report, graph and they failed to list any of the diastolic pressures so unable to calculate the pulse pressure! I inquired about this but it was a dead-end and I will not be getting any more information. My test confirmed "significant POTS" (which I already knew) but it did not give me any treatment suggestions and in the end was not helpful with the exception of identifying a new piece of information that is now guiding my treatment by my regular doctors.
     
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