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Everything posted by bombsh3ll

  1. I am clinically but not biochemically hyperadrenergic, & I could not tolerate florinef - worsened the hypertensive spikes & the splitting orthostatic headaches in my case, with no benefit. Some people are more sensitive to the adrenergic potentiating actions than others. Unfortunately I have not found anything that facilitates volume expansion without either worsened vasoconstriction (florinef) or hyponatraemia (desmopressin). However I have come across other hyperadrenergic people who find it beneficial, & in their case the volume expansion probably outweighs the vasoco
  2. Same here. Another one is the advice to consume boatloads of salt - only two very short term studies that I have come across showed this to result in volume expansion. As far as I am aware there is as yet no evidence salt loading leads to chronic volume expansion. Based on the principle that our bodies continually seek to restore homeostasis, it is highly likely this is only transient until we adapt to peeing out higher levels. This is actually more concerning to me than the bed raising as it has the potential to do more harm. I do fit into the category with low (undetectable) levels o
  3. Welcome, I am sorry you are dealing with this. From what you describe, an autonomic disorder is possible. When you say dizziness, do you mean lightheadedness (feeling close to passing out) or vertigo (like you or the surroundings are spinning?) Does your blood pressure or heart rate change significantly going from lying or sitting to standing? Any other neurological symptoms like tremor, swallowing or bladder/bowel problems? B xxx
  4. I also would be very wary about an ablation. Has a pacemaker ever been discussed for the heart block/brady? That would not fix the tachycardia, but I just wanted to clarify what you said about her having POTS so has inappropriate tachycardia as well. Whilst a person can have both IST and POTS, most people with POTS do not have IST. The tachycardia in POTS is often (but not always) compensatory for low stroke volume, & is an appropriate physiological response to a problem further upstream. B xxx
  5. That's rotten you couldn't get proper test results, I hate when that happens! I think it is still probably a good thing to see the adrenal specialist, because as remote as each individual possibility that you cross off is, like the guy in the article, it is important to keep looking for a treatable cause until EVERY single possibility is ruled out. That is my approach anyway. B xxx
  6. I've "invented" an operation that I think would help me - just need to find a surgeon Like this guy, my operation has been done on experimental animals, but never to my knowledge on a human. It is bilateral partial renal artery occlusion, with an adjustable/removable clamping device that would wrap around the artery. It would be like a little gastric sleeve for those greedy renal arteries on their perpetual urodilatin and natriuretic peptide induced blood flow binge. Reducing the volume of blood to the kidneys stimulates renin, of which I produce almost none. Renin via a comple
  7. They will certainly figure out if you have an adrenal problem. If your adrenals are fine but autonomic nervous system malfunctioning, unfortunately they will not be able to help but at least they can rule out adrenal problems. Have you had a blood or urine test for catecholamines (noradrenaline, adrenaline)? This is pretty standard in anyone with POTS or similar symptoms these days to exclude adrenal tumours/overactivity. B xxx
  8. The question is, is the excess catecholamine production coming from your adrenals or your sympathetic neurons. If it is the latter, removing the adrenals wouldn't help. B xxx
  9. It definitely would if no steroid replacement was given, in fact it would be rapidly fatal. But many people have had both adrenals removed due to disease and are perfectly fine with adequate steroid replacement. B xxx
  10. I am currently dreading what will be my first menstrual period since 2011, having recently come off birth control pills. I don't even think the blood loss is the main factor for most, my money would be on the progesterone released in the latter part of the cycle, which is diuretic. B xxx
  11. I have heard of noradrenaline infusions being used before on people with severe orthostatic hypotension. This is certainly interesting and I am glad he has put his story out there. Of course, this will not be the answer for most, and I am not sure if this was the case back then, or if he just didn't have access to testing, but now blood and urine catecholamines can easily detect AMH, even where adrenal scans are normal. Additionally, rather than searching for someone willing to perform the first human medullectomy, he could have just had bilateral adrenalectomies and taken steroid
  12. In answer to your question, ABSOLUTELY YES!!! My BP and HR are almost always normal, except if I were to try and stand for more than about a minute in which case my HR may scrape the POTS 30bpm increase but not always. My BP goes up when I stand, both systolic and diastolic, sometimes by up to 20mmHg, but remains within normal range. Yet I am constantly lightheaded. (I don't use the term "dizziness", because in medical terms that is usually applied to/interpreted as meaning vertigo or a sense of spinning, rather than presyncope/near fainting - is it the latter you experience?)
  13. That depends on the criteria used - My blood pressure goes up significantly when I stand, although not to hypertensive levels as it is low to begin with, so if all those with a postural rise in BP are classed as hyperadrenergic, then that is the category I would be in, however I understand some researchers define hyperadrenergic POTS by catecholamine levels, and mine are normal. I believe I have sympathetically mediated vasoconstriction as an appropriate physiological attempt to compensate for my hypovolaemia, just like a person who has lost blood or is acutely dehydrated would have.
  14. Totally agree - I am no doubt deconditioned and anxious now, but was neither before POTS hit! B xxx
  15. I also did not have any symptoms whatsoever until my sudden onset, in my case provoked by a forceful Valsalva. I believe to this day I would still be healthy had that not happened. I have also heard of a person developing it suddenly following blood donation. This is just conjecture but I suspect that in healthy but perhaps constitutionally susceptible people, any acute event that reduces venous return like heat stroke, blood donation, my Valsalva, can alter circulatory dynamics in a way that would be transient in most individuals, but for some reason the system gets "reset" in us
  16. Yes, I truly believe BP measured at the arm does not give anything away about what is happening in the cerebral circulation. I am in the UK where access to testing is limited, however there are tests such as transcranial doppler depending on where you are & your access to healthcare, that can help provide an assessment of flow to the brain. A specialist autonomic centre may be a good place to go if things do not improve following your medication change. I would love to hear the answer if you find one! B xxx
  17. This is just a thought, not proven scientifically as far as I am aware, but zyrtec is a H1 antagonist, and the common antacid med zantac is a H2 antagonist. If you are blocking H1 receptors, theoretically this could leave more histamine to bind to the H2 receptors, which stimulate gastric acid production. Whilst I do not know if this phenomenon occurs with histamine receptors, it is well recognized with beta blockers that if you block adrenaline/noradrenaline's beta receptors, more will bind to the alpha receptors, hence the peripheral vasoconstriction & cold extremities.
  18. I have also been on omeprazole for many years, I had acid reflux long before POTS & it hasn't changed. When I was healthy though, I did not want to be on PPI medication for life and was considering a procedure, either fundoplication or LINX, both of which tighten up the gastroesophageal junction and stop the acid from coming back up. That is not a consideration for me now, taking omeprazole (which is effective for me) is the least of my concerns, but if your situation is different you could speak to a GI specialist about more definitive non-drug options, because they do exist a
  19. Sorry! It is just that our genes are fixed, but the action of certain genes can be turned on or off by various factors. B xxx
  20. Welcome Bama, although sorry you find yourself here. I can totally relate to the lightheadedness, it is rotten. I developed it at 34 as well after being healthy all my life - unlucky age! Whilst I don't see directly how an intense workout could have caused it, I would be interested in whether your workout included any heavy weightlifting, or anything that could have provoked a Valsalva manoevre? My illness was precipitated by forcefully blowing up a waterbomb, that I thought was a balloon. I am still searching for answers and relief 5 years later. It is good that you are
  21. That's really strange - although there are other meds I could previously tolerate that I no longer can. I would have thought if it related to a genetic enzymatic defect, it would be that way from birth for affected individuals. Perhaps it is an epigenetic phenomenon, whereby illness modulates gene expression. B xxx
  22. I personally take diphenhydramine (which I think you guys call Benadryl, here it goes by other names) every night to help me sleep, which it does quite effectively & without issues, however it is known for causing what you describe - presumably in healthy people as they wouldn't write warning labels specifically for us! It makes sense that this has to do with genetic differences in how our bodies metabolize it. I don't know about dopamine - I think dopamine has been rather neglected as an area of research, some years ago a study seems to have been started at Vanderbilt looking in
  23. 150's, whilst wearing Polar chest strap. That was not during exercise, it was just sitting, during one of my random hyperadrenergic episodes. BP also hit 170's/150's so resulted in ambulance ride. Highest standing still HR that I know of was 136. Whilst licorice root was working for me and I was able to run on a treadmill, it would also reach 150's but so does a healthy person's. I never monitored my HR when healthy so do not know what it used to be when I was a regular gym goer. I have tried many treatments so far and apart from transient benefit from licorice root, nothi
  24. Yes, any kind of cortisol supplement can potentially lower the potassium. When I used to take licorice root (which basically tricks your own cortisol into acting like aldosterone, but has the unfortunate side effect of raising overall cortisol), my potassium tended to run low. Untreated my K+ runs higher as I am mineralocorticoid deficient. B xxx
  25. Pheo test is a good suggestion. Was she already on the propranolol when the test was done? That can affect results. I also didn't do well on florinef although on paper it looks like a perfect fit as I produce virtually no aldosterone. B xxx
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