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If you've got a 'positive' tilt table test, how do you feel lying down?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by redo, Jun 29, 2017.

  1. redo

    redo Senior Member

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    My tilt table test showed abnormalities, and I definitely feel better lying down. Some of the brain fog clears.

    If you've got a 'positive' tilt table test, how do your symptoms change when you lie down?

    The next time I'm going to the hospital, I'll most likely get an intracranial hypotension test done.
     
  2. Starlight

    Starlight Senior Member

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    I definitely feel better lying down,or more that being upright is intolerable for me most of the time,at bad times is completely intolerable. I have to say that during those times I never feel OK lying down either,I still feel terrible and can have blood pressure drops and a very high pulse. Any exertion,even lying down,like reading or talking makes it worse.

    However if you have a positive tilt test and find lying down restores you after 24-48 hours to feeling normal lying down then it's worth considering the possibility of having a cerebrospinal fluid leak. It's not that easy to test for but it's very treatable if it's discovered.
     
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  3. ryan31337

    ryan31337 Senior Member

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  4. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Factors that will affect TILT tests patients may have forgotten about:

    Postural hypoperfusion in the brain will arouse the CNS and thus this is why you feel worse sitting up because you have a horrible mixture of your brain being half asleep and your brain becoming alert something is wrong, which further attenuates sympathetic nervous drive. In addition Hyperadrenergic POTS patients will produce excess epinephrine upright Vs supine (laying flat) and thus feel even more 'nervous' than POTS patients with other forms of Dysautonomia. This then leads to TILT tests becoming abnormal, or less abnormal than when in a more calm state at home (less sensory input, less anxiety). For example:

    Dysautonomia anxiety falsely elevates 'resting' supine (flat) HR during TILT procedure affecting results:
    Expectation anxiety due to Dysautonomia will release excess epinephrine and thus elevate Bp and Pulse. What is important to remember is then your Laying Flat PR will be falsely elevated, and likely not change much when they tilt you up. If you were calm, and had a resting PR of 60-90 then of course when tilted, your PR will go up to maybe 110-160 when they tilt you depending on how bad you are on the day.

    Cardiac output increases with stress, and will make your TILT test falsely better:
    Stress increases cardiac output as your heart pump goes up, increased cardiac output when testing for POTS is the last thing you want, as the results will not be as bad, as if you were calm and relaxed when TILTED. If you are anxious, your cardiac output will increase the blood flow to your brain also, which isn't like this at home when you are calm and feel more dopey/stoned/faint. Again, the most ideal situation is to be totally calm when having these tests done. How on earth you do this with Hyperadrenergic POTS I don't know. Befriend the staff beforehand? Visit the centre beforehand? Won't work really to be honest.

    Cardiac output increasing from stress wakes your brain up - again hidden when at home, but present on TILT:
    If you have POTS you may be aware that at home, calm you are totally stoned and off your face and can hardly string a sentence together. Have an emergency and get an adrenaline rush, and if chest pain/tachy/sob doesn't consume you, you may feel unusually alive. This can be infuriating when sitting in ER when you think to yourself, wait a second, my BP at home chilled out isn't 150/92, more like 114/75. The stress of waiting in ER, even if the emergency is over, is why you are more 'with it', because your brain is getting more blood than usual as your heart is pumping stronger due to stress. Again, this can stop tests they give you, showing up as bad as they are when rested, when your circulation is much less maximised. Talking of which....

    Don't fill up on water before a TILT test as you normally do at home:
    Hydration levels affect the TILT test. Ideally, take it dehydrated in the morning, so book it at 9-11am and don't drink anything from midnight if possible (most of us drink a lot before bed, as dehydration makes us terribly worse). The more full of water you are (we always drink a lot when going out as we feel so faint too), will maximise your blood volume and blood flow, this will make your TILT test better than it would be, if done in the opposite setting.

    This is why the OP and we all feel better lying flat, your circulation is far less 'aroused' by your CNS. All of your energy requirements (very important this) are dialed down when laying flat, all of the signals to your brain also. Sitting up with Dysautonomia is a huge stress on the body. This is why sitting up in a doctors office, even if you don't have chest pain/tachy is a nightmare as your brain is pleading you to lay flat but you can't. You may have also noticed when you're forced to sit upright, then afterwards you crash and become profoundly weaker. This again is because your energy that runs your CNS has been totally expended and there is nothing left. It is here you will probably notice a flair in Dysautonomic symptoms when you think to yourself, wait a second at 10 am I was chatting to my doctor sitting in a chair (albeit stressed as I had to get to the hospital) and by 3pm I can barely speak or move and must go lay down in bed, or lay down flat on the sofa as my brain is totally smashed.

    Drug/Medication Issue on TILT:
    *Taking Diazepam or a CNS suppressor to 'stay calm' will definitely affect your test. In addition, Diazepam and similar can actually cause tachycardia creating a false impression for the technologist that you are nervous at rest before the test, when it's a side effect of the drug!

    *Taking beta blockers, or Ivabradine will lower your resting HR and make it look like you don't have POTS anymore.

    All of these factors can affect a TILT table test, and so it's best to have it done 'raw' or 'naked' (not literally), yet doing this in patients who are ultra nervous (due to POTS) can be very challenging.
     
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  5. JaimeS

    JaimeS Senior Member

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    I feel better lying down, but eventually it's harder to move.
     
  6. Kati

    Kati Patient in training

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    Sitting is better than standing. Laying down is best for me, especially for cognitive function. This is what POTS does, less circulation going to the brain upon standing or sitting. Cognitive work requires more blood to the brain.
    I have a chair in the kitchen so I can cut veggies and cook while sitting. All of my cognitive work (emails, reading articles, doing taxes) are done in bed otherwise
    I crash rapidly.

    The best way to deal with this is frequent rest, increase blood volume by electrolyte drinks, and medication can help greatly (fludrocortisone, beta blockers, Midodrine, but these needs to be prescribed and supervised by a knowledgeable physician )

    Getting a heart rate monitor may help you in pacing and resting when your heart rate is over a threshold (usually around 100)
     
    Last edited: Jun 29, 2017
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  7. Sushi

    Sushi Senior Member Albuquerque

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    And compression knee socks are vital for me--make all the difference when standing.
     
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  8. bombsh3ll

    bombsh3ll Senior Member

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    My BP went UP during my TTT yet I felt lightheaded and tachycardic. It was reported as "normal" even though BP went up to 170/110 and I was pale, sweating and shaking. My heart was pounding away but I couldn't see the rate as the heart monitor was behind me. I was loaded up with water and salt just to get there safely on the bus, and also forgot to remove my compression stockings.

    I am one who feels best lying or sitting with feet elevated. Funnily enough when I take my BP lying in bed it is much lower than sitting, yet my brain feels so much clearer, not lightheaded or foggy. If I have had a high stress event though I can crash for a while and still not feel great lying.
     
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  9. bombsh3ll

    bombsh3ll Senior Member

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    I wear knee highs too which beat nothing but have just ordered some thigh high ones. I tried an abdominal binder but found that made me worse.
     
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  10. Kati

    Kati Patient in training

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    yes, POTS patients' blood pressure goes up on a TTT. It is because your body is trying to respond to the insult by trying to push more blood to the brain.

    I hope you have access to a good POTS doctor. i have been helped greatly by beta blockers, but each one of us is a little different.
     
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  11. bombsh3ll

    bombsh3ll Senior Member

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    I live in the UK and have no access to a POTS specialist so am left to fend alone for now. As I live in Scotland the English NHS autonomic clinics will not see me due to funding issues and we have no autonomic specialists here. I don't even have a formal diagnosis of POTS but I have all the symptoms and have the 30bpm elevation going laying to standing.

    I have tried atenolol and propranolol and they didn't help me, made me more lightheaded even sitting :( but I'm glad I tied them to rule them out.
     
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  12. ryan31337

    ryan31337 Senior Member

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    Hi @bombsh3ll,

    That sucks that you can't come across the border, there are a few guys down here that have a clue & I've been lucky enough to get on their books after hunting them down. There's potentially so, so much more going on than just the obvious issues with orthostasis in some dysautonomia patients - unfortunately only a select few docs seem to appreciate that.

    Have you tried Ivabradine? That seems to work better than beta blockers for many, myself included.

    Here's my tilt table result, wasn't much fun. HR increased from 62bpm to 99bpm after 8mins at point of near syncope.

    upload_2017-6-29_21-57-43.png

    The cardiologist was rather impressed with the magnitude of BP oscillation, I since discovered that it's in the literature as another nod towards hyperadrenergic POTS...

    Ryan
     
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  13. bombsh3ll

    bombsh3ll Senior Member

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    Thanks Ryan, do you mind me asking which doctor you see? I am currently looking for a private autonomic specialist - I have found Dr Matthias and Dr Nicholas Gall both in London. I suspect neither will be cheap and the journey would be very hard on me. One thing is for sure I would not put myself through another tilt test. I don't know if the actual data was stored from mine - I just saw the BP's being entered by the nurses - and the report came back to my GP "normal"!

    I haven't tried this med, not that I've been offered it (or any other treatment - the most I've had from the NHS is compression stockings which I had to practically beg for) however I feel that in my case the pounding heart is a compensatory mechanism for a lack of blood flow to the brain and that slowing it down may make things worse. I'm glad it's helping you though and I maybe would give it a go like most things just to cross it off if I had the chance.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    I wanted to reply to the original poster but got delayed. I tested positive for POTS on two TTT's (in 2014 and 2016) but I have no symptoms when lying down. When I lie flat/supine, I feel completely normal and do not feel sick whatsoever. But standing/walking (prior to starting IVIG eleven months ago), I had very severe shortness of breath which required me to use a wheelchair 24/7.

    Atenolol and Midodrine control the tachycardia and increase my low BP but did not help the shortness of breath on their own until I began IVIG. Now I can walk about 20-25 steps at a time inside of my apt without wheelchair, I no longer get chest pain/angina, and I have vastly improved muscle strength. But I still have POTS and still use the wheelchair outside of the apt b/c I cannot walk much beyond 20-25 steps at a time. And without the beta blocker, my HR can quickly go into the 160's.

    But I have no symptoms lying down. The exception was prior to my mast cell disease going into remission, if I had an allergic reaction at that time, then positional changes were irrelevant and it did not matter if I was standing or lying down, and the allergic reaction occurred regardless. Hoping this helps someone out there!
     
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  15. ryan31337

    ryan31337 Senior Member

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    I see Dr Gall and can wholeheartedly recommend him. A junior doctor friend of mine worked under him and suggested he was 'very thorough' - boy, was that an understatement! He and his colleagues in other specialities have been fantastic and their scope of care is quite expansive, not just limited to classic POTS/orthostasis issues. You'll get a pretty thorough workup.

    Dr G's protocol only calls for tilt table if you have suffered syncope. Otherwise its 10min active stand with beat to beat BP monitoring.

    Yeah, Ivabradine is off-label and the rules seem to vary from region to region, often only available from hospitals. I'm not sure why it works better for me than a beta blocker, there's presumably more going on in both treatments than just slowing of heart rate.

    Ivabradine is favourable for those with normal BP as it doesn't reduce BP, unlike a beta blocker. That's rarely a concern of mine but I still have far fewer agitated/anxious episodes on Ivabradine than I did on beta blockers, which seems a bit paradoxical. One theory is that, specifically with more dominant hyperadrenergic POTS, beta blockers can actually aggravate mast cell response and cause a nasty feedback loop. Things like mast cells, respiration, adrenals, gut motility and others all become quite important the deeper you explore dysautonomia with a good doctor's help :)
     
  16. bombsh3ll

    bombsh3ll Senior Member

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    Thanks Ryan that is really good to know. If I can't get funding sorted out to see Prof Newton in Newcastle I think I will try and see Dr Gall privately. Dr Matthias is well known but I did read one review where a lady paid around £365 for an hour consult with him and he spent most of the time asking about life stresses & her divorce & seemed to be implying a psychogenic cause.

    Does Dr Gall offer any autoimmune testing? I don't think mast cells are an issue with me as I have no flushing itching or food intolerances.
     
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  17. ryan31337

    ryan31337 Senior Member

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    I shall drop you a PM rather than take this thread further off course - sorry OP!
     

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