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My poor man's tilt table results

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Noah GB, Feb 4, 2016.

  1. Noah GB

    Noah GB

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    My range of fatigue symptoms and pain seem to vary a lot over the course of weeks or days. Although I've been struggling with dizziness and headaches ever since I caught a viral infection 2,5 years ago, I've taken the habit of blaming it on my blood sugar, gluten or caffeine intake.

    After getting diagnosed with CFS, I decided to start measuring my blood pressure and HR/pulse. I've only done the poor man's TTT once, and this was a couple of weeks ago, but decided to repeat the test again today. Here are my results:

    0:00 - 124/63 Pulse = 59
    5:00 148/116 Pulse = 112
    7:00 - 150/121 Pulse = 129
    12:00 - 155/122 Pulse = 143
    15:00 - 140/120 Pulse = 132

    I might have moved too much towards the end, which I blame on the worst symptom I experience from the point where my pulse exceeds 110 beats: dizziness, nausea and gagging. These symptoms increase the longer I stand. Is this due to acidosis or something else? Btw, I'm a 32 year old male.
     
    Last edited: Feb 4, 2016
  2. PatJ

    PatJ far and free I gaze

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    Your pulse might be rising to compensate for low pulse pressure but we would need to see your blood pressure readings for each time you've listed (ie. 90/60 pulse 59). Pulse pressure is systolic minus diastolic. It should be around 40. Anything under 20 is likely to cause some woozy feelings. Under 10 and you're likely heading toward fainting.

    Can you post your BP readings from your test?
     
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  3. Noah GB

    Noah GB

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    I didn't note the BP numbers this time, but the last time I did this test I started at 117/63 (60) and ended at 142/119 (132) at 15 minutes.
     
  4. PatJ

    PatJ far and free I gaze

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    Your pulse pressure was narrower at the end of your last test, but it could be an incorrect reading, or a temporary dip. A longer sequence with readings at 5 minute intervals would give a better picture of what's happening.
     
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  5. Noah GB

    Noah GB

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    I forgot that my measuring device saved all the data. I edited the post.
     
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  6. Kati

    Kati Patient in training

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    You definitely have POTs. Per definition It is an increase in heart rate from suppine to vertical position by 30 beats a minute. The increased BP is an attempt to compensate to send more blood to the brain.
    Showing these numbers to a cardiologist specializing in POTS issues, or a neurologist would be a passport to drugs that could be helpful for day to day functioning.

    In my case, Atenolol has worked best, (I was started at half the regular dose, at 12.5 mg twice a day as per Dr Klimas) but trialling Midodrine as well rigt now.

    Atenolol regularize the heart rate. i do not wear a heart monitor but while on it my heart rate does not go up dramatically when I get up and I feel better. However it does not fix everything.

    In my opinion POTS is just another symptoms of the bigger picture, for which we only have a few pieces of the total puzzle.

    Sending best wishes, and the hope you find a good physician to fing the best treatments for you.

    (edited to add more explanations)
     
    Last edited: Feb 4, 2016
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  7. PatJ

    PatJ far and free I gaze

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    Here is more information about POTS from Dysautonomia International.
     
  8. Noah GB

    Noah GB

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    Thank you. I'm going to keep logging my values along with my symptoms and bring them to my next doctor's appointment.

    My symptoms seem to get worse immediately after eating and then a couple of hours after. Is this due to increased blood flow to the digestive system?
     
  9. Kati

    Kati Patient in training

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    Very possibly, @Noah GB due to blood pooling to the stomach
     
    Last edited: Feb 5, 2016
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  10. ryan31337

    ryan31337 Senior Member

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    Hi Noah,

    As the others have pointed out this appears very clear cut for demanding further OI/POTS investigation. Don't assume your GP (or even a regular cardiologist) will have a clue though, so do your homework and take in some guidelines in case they try and fob you off. You can find info for yourself and your GP here: http://www.potsuk.org/download_pots_leaflets

    Good luck! :)
     
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  11. PatJ

    PatJ far and free I gaze

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    This happens to me. I have to eat meals that are roughly 1/6 the size of a regular meal. The smaller meal requires less blood redirection for digestion. I also take Betaine HCL (with pepsin) due to low stomach acid. If you have fatigue even with a small meal that contains protein (or if you feel nauseous when you take zinc) then you may need Betaine HCL to help with digestion.

    You could try cutting down the size of your meals and eating more frequently to avoid the post-meal fatigue and poor concentration. It can make quite a difference in your quality of life.

    This might be a problem in Noah's case since his pulse pressure narrows the longer he remains upright. His pulse may be increasing to compensate for blood that could be pooling in his extremities. In this case the increased heart rate is a good compensation mechanism. A vasoconstictor (Midodrine, as you suggested) or blood volume expander (fludrocortisone) might work better as long as it doesn't increase supine BP too much. This is something a specialist would determine.

    @Noah GB What is your BP and HR when lying down at different times of the day? (Take a few BP and HR readings at five minute intervals, after lying down for at least 1/2 hour)
     
    Last edited: Feb 5, 2016
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  12. Noah GB

    Noah GB

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    I'm going to ask my GP for a referral to a cardiologist and have the tilt table test. Yesterday was an awful day. My pulse pressure was 15% (of the systolic pressure) at one point, and I'd only been walking around in my kitchen for a couple of minutes. 140/118 BP 87 HR

    My resting values around midnight: 88/60 62.
     
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  13. Noah GB

    Noah GB

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    My eyes turn red after sitting or standing for sometime. Could this be due to reduced blodflow to the head?
     
  14. PatJ

    PatJ far and free I gaze

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    I haven't heard of that happening in OI but if it's consistent then it must be related. Does the redness subside after lying down?

    Here is an interesting PDF from Johns Hopkins Children's Center about OI (NMH and POTS) and treatment, including information about various medications.
     
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  15. PatJ

    PatJ far and free I gaze

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    I'm usually around 85/55 with 50 pulse when supine. The difference for me is that when I'm upright my BP only goes up to roughly 95/75 while my pulse heads toward 100. It's around that point that I need to lie down. It takes at least 45 minutes for it to get that far. It's curious what kind of similarities and differences we can have with OI.
     
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  16. ryan31337

    ryan31337 Senior Member

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    I get frequent burst blood vessels in the eye when my blood pressure is raised - is that the sort of redness you mean?
     
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  17. Noah GB

    Noah GB

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    Yes, exactly. I used to get this a lot when I used to lift weights before. The redness subsides after lying down for awhile. My eyes get red even from just walking around outside. I believe this problem started when I was on accutane (isotretinoin) in 2006/2007, but it's been getting worse. I always bring Clear Eyes with me if I'm going out, but 1 drop in each eye lasts a day.
     
    Last edited: Feb 8, 2016
  18. Noah GB

    Noah GB

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    I went for a slow but long walk yesterday, probably 1,5 km. My results when stopping for coffee: 147/110 106. Pulse pressure 37, or 25% of systolic pressure. I guess I'm okay, but I get these subtle yet noticeable sensations of feeling warped in the brain or something. Looking at my phone while walking makes me dizzy or throws me off balance. Same thing if I turn around while walking. I never fall or get vertigo though, just dizziness, and I can correct this by focusing on stationary objects. I used to be able to move my head fast from side to side to get a glimse of everything that was going on around me. Now I'm better off with slow movements.
     
  19. ryan31337

    ryan31337 Senior Member

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    I'd take it easy if I were you until you get assessed. I had similar readings and experiences recently, culminating in some unpleasant symptoms like breathlessness, chest pain, foot/arm/face numbness & tingling, unusual headaches etc. I had been gently pushing my limits around that time and got a 24hr monitor from a cardiologist, for the entire monitoring period I was Stage 2 Hypertension -> Hypertensive crisis, even at rest. After dialling my activities back I can remain somewhat active (with plenty of horizontal rest through the day) and get that down to pre-hypertension, but any sort of mild exercise will push me back towards Stage 1 -> Stage 2 for a couple of days.
     
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  20. Kati

    Kati Patient in training

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    @Noah GB you need to rest. Blood pressures like that are not good.
     
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