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How does POTS make you feel?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Jemima37, May 11, 2017.

  1. Jemima37

    Jemima37 Senior Member

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    Sorry to post again asking questions but I am trying to work things out before I next speak to my GP so I can go armed.

    I have had it suggested to me I may have POTS by a few members. I actually suspected it last year but a friend of mine said you'd have to have a heart rate over 120 on standing to have POTS. Well in recent months i am feeling worse. I have chronic fatigue for over 18 months and an underactive thyroid but that's now in range. I have had cfs suggested by 2 GP's but no formal diagnosis. In recent months my symptoms feel worse and this is how I daily feel and was wondeing if it could be POTS, I have read the symptoms but I am not sure it fits.

    Daily fatigue, some days a 5/10 if I am very lucky but a usual day is 7/10, 10 being a crash.
    Heavy weak thighs often, usually by the end of the day or if in a crash. The legs feel weak, heavy and sometimes thighs feel they're burning.
    I can't stand for long periods, I know this sounds gross but i used to stand in the mirror squeezing my blackheads haha and I'd be fine but the last 6 months if I stand there doing that I have to keep sitting down as I feel I am falling through the floor and I have to sit to catch my breath as my heart races.
    I can't stand for long periods, sometimes standing talking to hubby I feel myself swaying, falling through the floor feeling, weak thighs and sometimes feels like blood rushes to my feet and the feet feel cold.
    I can't stand or walk around for long I feel exhausted, weak and breathless.
    I can't go to the park with the kids for long and afterwards my crash weak legs hit and I feel poorly>
    Crash days my thighs feel so weak but like lead and I have low BP and can't even walk to the bathroom on days like that I feel so weak and faint.
    Sometimes after a meal I feel so full I feel breathless, heart races and I can't stand up for long. So weird.

    I haven't done any tests on my heart rate but I downloaded the stand test app on Apple today that I will do this afternoon if I can stand that long. I can't do the Tilt test, I am suffering badly with agoraphobia this last year being this unwell and my GP not taking me seriously and just saying it was mood or anxiety was so unfair and he left me ill. I ended up housebound and I am now struggling socially and getting out but it's all to do with how unwell I feel.

    I have had so many bloods and my GP hasn't given me answers as to why I feel like I do and why I crash after any exertion or emotional upset. I crash badly after anything emotional/upsetting or too much housework. It's getting me down, I've had CFS suggested twice but nothing offficial diagnosed but i am sure it's what I have but are the symptoms above more POTS? I don't get pain or swollen glands so I worry it can't be CFS.

    Thank you and I am sorry again to post.

    Julie
     
  2. Denise

    Denise Senior Member

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  3. Sushi

    Sushi Senior Member Albuquerque

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    You can test yourself at home with the Poor Man's Tilt Table test. All you need is a BP machine. If you do a Google Site Search here, you'll find instructions. Your symptoms could also be from neurally mediated hypotension. Either might show up on the home test.

    P.S. Your heart rate doesn't have to be over 120--just a rise of 30 points systolic from sitting to standing.
     
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  4. ryan31337

    ryan31337 Senior Member

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    Hi again @Jemima37,

    You do paint the picture of POTS as I experience it. I find shopping to be one of the worst triggers, hot/cold environments, prolonged standing. Queuing is the absolute worst as you're stationary and not helping the blood return through movement. The issues with shortness of breath, heavy/burning legs, poor circulation and worsening after meals are all very common.

    A heart rate of 120 is not necessary for the diagnosis, it is just one criteria. The more commonly used is that your heart rate needs to increase by 28 or more when standing compared to horizontal. Your blood pressure should remain stable or increase slightly, otherwise you're getting into other types of orthostatic intolerance (which should still be treated!).

    Before treatment I was often bradycardic at rest, so whilst my HR would reliably jump by >28, it rarely went over 120 within the first 10 minutes. Its worth knowing that research has shown the magnitude of your HR increase does not determine severity of symptoms!

    The POTS specialist I saw doesn't require a tilt table test for diagnosis, a 10 minute stand test with beat-to-beat BP monitoring is his preference. He only does tilt table if you've previously fainted.

    Do your best to push on and get some proper help with it, it could very easily be driving your anxiety issues. Thankfully emotional anxiety is not something that happens regularly for me, instead POTS manifests itself as a feeling of pressure/overdrive. I find it very difficult to slow down in these episodes and tend to struggle to relax or control my thoughts - not too dissimilar to drinking a bucket of espresso I'd think.

    Ryan
     
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  5. Richard7

    Richard7 Senior Member

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    cyclamen, TrixieStix and Jemima37 like this.
  6. Jemima37

    Jemima37 Senior Member

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    Thank you Ryan

    My bp seems to drop on standing but then climbs. My bp sat is around 65 but if I take it in the first minute of standing it's about 110. It doesn't stay that high but is still around 85-90.

    I know I need to find the strength to get more help it's just so hard feeling so unwell and it triggers my anxiety going into social events or appointments after such isolation while unwell but also just feeling unwell while out can trigger awful anxiety for me. I guess I feel unsafe out while feeling ill. It's not like typical anxiety I used to have while out which was just a fear of panic and he symptoms of anxiety. It's now anxiety hits hard purely due to how ill I feel. It's so hard and yes it's caused agoraphobia because of it. I even find my gp coming to see me at home overwhelming now.

    Thank you for replying.
    Julie
     
  7. Jemima37

    Jemima37 Senior Member

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  8. Jemima37

    Jemima37 Senior Member

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    Thank you so much. I shall give it a try myself.
     
  9. Jemima37

    Jemima37 Senior Member

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  10. Jemima37

    Jemima37 Senior Member

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    I took these readings standing for 7 minutes. Resting was 65bpm. When I took it within the first minute of standing it was 106bpm. Then these were my readings standing for 7 minutes with the last one being the measurement when I lay down again and I did that within 30 seconds of lying flat. When I stood up and it shot up to 106 my head went all heavy and vision black and felt I'd faint, very scary. While stood still for 7 minutes I felt my feet were full and cold.

    Not sure if this looks or sounds like PoTS. Surely not bad enough results. IMG_1288.PNG
     
  11. ryan31337

    ryan31337 Senior Member

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    Hi @Jemima37,

    There are a lot of variables at play. You will likely find your heart rate increase is more exaggerated in the morning after first getting up, it'll also be more obvious if you are dehydrated or sick from something else (a flu bug will probably put most people into POTS territory, albeit temporarily...).

    It can also be quite dependent on how stand, you need to remain very still and not flex any muscles - something that's harder than it sounds, as many POTS sufferers will have been doing that as a countermeasure for years without realising it. Personally, my lights only go out if I consciously let my legs, glutes, core muscles etc. relax and sag in a standing test. I believe this is why the NASA test is quite popular as it leans you up against a wall and isolates body parts.

    I'm not sure what you're using to measure your HR but that also might not be very accurate. Anything other than in-hospital monitoring on proper equipment can only serve as an indication. I think your symptoms are very suggestive of orthostatic intolerance so I wouldn't get too hung up on trying to prove it at home, take the POTS UK doctors primer PDF in and nag them for a referral to an expert :)

    Ryan
     
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  12. Jemima37

    Jemima37 Senior Member

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    Thank you Ryan.
     
  13. Richard7

    Richard7 Senior Member

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    @Jemima37 you may want to look at this at 35 minutes.

    The first patient described in this part of the video started at 75bpm and went up to 100, but that went along with a reduction in blood pressure so really bad autonomic functioning and OI, not PoTS.

    This could be happening in your case, but as Ryan pointed out there are a lot of things that we do without thinking about it to control our PoTS or OI.

    In the NASA test it is not only that you relax those muscles but also that you restrict water and salt for the previous day. Lucinda Bateman goes further and says that you really have to get back to baseline and drop caffeine and anything else that might influence the test.

    I know that when my BP is too high I can drop it effectively with salt, potassium and cold liquids (I keep about 3 litres of cold unsweetened tea in the fridge, and get a bit anxious on the days when I drink it faster than I can make it). Indeed I did not know why I was making and drinking all of that cold tea until I saw the Melissa Cortes video, and tested myself.

    At this point I do not think I could even do the NASA test properly, I have at least 6 litres of fluid and 6tsp salt a day, and caffeine and creatine and a bunch of other stuff ... and still go over 30 above baseline when standing/walking etc most of the time.

    Anyway, from your dramatic symptoms I would guess that you have OI, and would be careful about using the NASA test with salt and fluid restriction. The doctors who do the test make sure that there is someone to catch you if you fall.
     
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  14. Jemima37

    Jemima37 Senior Member

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    Thank you Richard. Very helpful reply.

    I think I do have some OI as I find standing and being upright for long periods difficult and I have to sit often. I assumed it was just anxiety until recently when I felt really ill just stood talking to my husband in the kitchen and I felt the blood draining to my feet and felt woozy. Horrible feeling.

    My bp seems to sometimes drop on standing but then other times it can shoot up aswell as my heart rate. On the days I'm very fatigued my bp tends to dip on standing I've noticed. My heart rate always races on standing though.

    Thank you
    Julie
     
  15. ahimsa

    ahimsa Senior Member

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    Hi Julie,

    Here's a video on POTS made by Dysautonomia International that might be helpful. The link goes to Facebook but you don't need an account in order to watch the video.

    https://www.facebook.com/DysautonomiaInternational/videos/1079102622188616/

    Here's a screen shot showing some of the many POTS symptoms that may occur (but not all patients get all symptoms). Also, there's a lot of overlap in these symptoms with other types of autonomic dysfunction.

    POTS Symptoms small.png
    I hope this helps and that you can find a doctor with experience in diagnosing / treating different types of autonomic dysfunction.

    PS. I second those suggestions to have someone with you if you decide to try any of these at home standing tests, just in case you faint or lose your balance.

    Also, be aware that at home tests might miss certain types of orthostatic intolerance. When I took the tilt table test I had symptoms within 4-5 minutes but I did not pass out after 20-30 minutes of testing. I think if I'd done an at home standing test, esp. back then because my heart rate did not increase on standing very much during my first 5-6 years of illness.

    Back in 1995 my diagnosis was NMH (Neurally Mediated Hypotension) but not POTS. However, after so many years of illness (first got sick in 1990) my cardiologist says that I now have both NMH and POTS (and some autonomic experts seem to use different names and diagnostic criteria so it can be very confusing!).
     
    Last edited: May 16, 2017

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