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ramakentesh

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  1. ramakentesh
    My pots is all over the place so often i dont take any - or i take 2.5 and on bad days i either take 5mgs or i take pseudoephedrine - my doc is fine with this regime. this is on top of florinef.
  2. ramakentesh
    The work is being done right now. No results yet.
  3. ramakentesh
    Hope not
  4. ramakentesh
    Ive never had to increase the dosage but i sonetimes have breaks from it
  5. ramakentesh
    It works ok for me. Usually pretty easy to tolerate
  6. ramakentesh
    Classic pots. Rebound sympathetic mediated reductions in stroke volume. best bet is to continue exercise in the hope it goes away or talk to your about midodrine
  7. ramakentesh
    Yes and ive spoken to about twenty pots patients who also have waxing and waning ankylosing spondylitis. There is s gene test that can detect it (hla b27). Pain is migratory and can effect sacroiliac joints, anywhere along the spine and shoulders. Worst in mornings and after rest. hope she doesnt have it but for me it came on with pots. its an autoimmune disorder
  8. ramakentesh
    My pots is also a waxing and waning type presentation. Rest is important when acute. Hiting the salty liquids can help. when i flare i find eating lots of healthy foods can help. in the past licorice and now midodrine also help (talk to your doc) Impending doom feeling is sympathetic overdrive being detected by beta receptors and the overdrive is usually an attempt to deal with reduced stroke volume and cerebral perfusion
  9. ramakentesh
    Im a dude with pots. It *****!
  10. ramakentesh
    I had one positive QSART and one normal one - the positive one didnt correlate with symptoms as i was well at the time. sfn in pots is patchy and may manifest anywhere - although extremities most common. there are other potential causes being investigated - autoantibodies blocking alpha 1 receptors, abnormal blood vol regulation via ang 2, epigenetic suppression of net gene.
  11. ramakentesh
    Yes there is a much larger follow up study being done right now. Plus other stuff elsewhere on net deficiency. hope u are well. Take care.
  12. ramakentesh
    Yes they are hot to touch - basically over dilated microvessels in the skin. I get this as well. Cause yet to be explained
  13. ramakentesh
    In pots there is low stroke volume, reduced cardiac output and reduced blood flow to the beain despite mean arterial pressure being uneffected. You can faint with normal and even high bp
  14. ramakentesh
    Spoken to your docs about alpha 1 agonists like phenylephrene -
  15. ramakentesh
    Yes very exciting
  16. ramakentesh
    Great info thanks.
  17. ramakentesh
    it is not an alpha agonist like midodrine thus is less likely to cause supine hypertension. It is a precursor for norepinephrine that catalyses increased presynaptic vessicle synthesis of norepinephrine which would cause a general increase in norepinephrines peripheral actions and vasoconstriction. Thus it would boost blood pressure but not as acutely as midodrine when supine.
  18. ramakentesh
    Cerebral hypoperfusion from a post exercise decline in adrenergic vasoconstriction.
  19. ramakentesh
    Thanks
  20. ramakentesh
    Its caused by hypoperfusion and the bodies inability to maintain circulatory control even lying down when you are still (tonic).
  21. ramakentesh
    Its a spectrum. I know of a payient unable to get out of bed for five years
  22. ramakentesh
    Most if the time im fine - sometimes for months almost normal. But it comes back and can render my unable to drive or even shop on bad days. my med combo gets me through but only when they work whih isnt always
  23. ramakentesh
    Depression is a natural respinse to any illness that hangs around too long.
  24. ramakentesh
    I like how you called it the pots btw
  25. ramakentesh
    Oh yeah definately. And why i feel so much better after saline or florinef
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