bombsh3ll

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 vasoconstricting actions - they are more volume replete so the SNS activity is lowered & they have less labile BP. I think it is just one of those things you need to find out for yourself. Do make sure your BP and electrolytes are monitored if you try it. Personally I would not want to leave any potentially helpful avenue untried, & don't regret all the things that I have tried & crossed off. It can always be stopped if it doesn't suit. What reason did your cardiologist give you as to why florinef cannot be used with verapamil? I am not aware of any contraindication to the two, and know of at least one person who uses both with success. PLEASE do not tell me it was due to a computer prompt - many medical IT programs would flag up an "adverse interaction" between these two, but only because one is an antihypertensive & the other usually raises BP, so in a healthy person the prescription of both would be counterintuitive, but clinical reasoning also needs to be applied. B xxx

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 of renin & aldosterone, but doubt that this is universal & would like to see much more research into this, as well as into natriuretic peptides which have been found to be raised. I would love to speak to Doug, does anyone have his contact details? B xxx

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

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

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

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 complex pathway stimulates aldosterone, & we know the rest. It is the same principle as vigorous upright exercise or prolonged upright posture, which you wouldn't need the procedure if you could do, or the principle of sleeping with your bed on a slant which is a nice theory but the only study documenting benefit from the latter combined it with fludrocortisone. I would totally be a guinea pig for this provided the clamps were reversible in the event it didn't turn out so well. Occlusion to approximately 80% of the renal artery diameter might be a reasonable starting point. You heard about it here first B xxx

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

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

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

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

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 replacement, it would surely have been more straightforward, but then again he may have preferred to keep his adrenal cortices to avoid lifelong dependency on steroid tablets. However, to me the most important message from this story is to never give up looking for an underlying cause & treatment. B xxx

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?) A person can definitely have reduced cerebral blood flow yet have a normal BP. There are a number of possibilities where this can exist, but I believe the commonest is low cardiac output. If your cardiac output is low eg due to low blood volume, your vessels will squeeze harder to compensate, & so the blood pressure remains the same. Regarding the coke, some people can be sensitive to either the sugar or artificial sweetener if it was diet. Caffeine is also a diuretic, so depending on the timescale, this may also have been a factor, but this is unlikely to have been immediate. B xxx

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. I therefore feel I best reflect the "hypovolaemic" or "low flow" subtype. B x

Totally agree - I am no doubt deconditioned and anxious now, but was neither before POTS hit! B xxx

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 & we do not recover our preload. I do wish a detailed study could be done into inciting events, as this could be very helpful in revealing pathological mechanisms & eventually lead to treatment. There appear to be two distinct subgroups regarding onset - those with insidious symptoms which are compensated or easily brushed off at first & become pronounced over time, & a second group like us who where completely healthy with no hint of illness until one specific event which IMMEDIATELY provoked life changing symptoms. Researchers have paid lip service to this type of sudden, event-precipitated onset but seem to chalk it up to "bedrest" occurring at the time of whatever illness, injury or event happened, but listening to people's narratives, hardy any seem to have actually been confined to bed at all prior to developing POTS symptoms. B xxx

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

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. B xxx

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 and are highly valuable where appropriate. Another thought - are you on any medication for POTS which could worsen it such as fludrocortisone? B xxx

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

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 still able to exercise, & I would definitely keep that up. Have you had or done on yourself any orthostatic testing eg take HR and BP lying down, then standing, over 10 minutes? That may be informative. Also, have you spoken to a doctor about having a trial off the diovan? In answer to your question can the blood pressure in your head be lower than in your body - it is more complex than that due to autoregulation etc but cerebral blood flow can definitely be compromised despite a completely normal arm BP reading (which is my situation much of the time). B xxx

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

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 into renal dopamine in POTS, but they don't appear to have published any results. It is certainly something I would like to see explored more. Regarding northera & dopamine - both of these get converted to noradrenaline, but I do not believe northera converts to dopamine first. How did you discover that and was your level low or high? Didn't you have good results at one time with northera? I had normal blood noradrenaline levels for both supine and tilted tests, which surprised me as my presentation is "hyper" with BP that raises on standing, however my baseline BP is now low/normal off licorice root. I don't think I would tolerate northera though, not that we can get it here anyway, but I am already very vasoconstricted & non-psychogenically "anxy". Hopefully it will be out of your system soon. There are alternatives if your allergic reaction has not yet calmed down. Does your hair look good though? I have reverted to my natural black which is so much easier, but will probably have to start using something soon B xxx

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, nothing helped. My main focus however is not my HR or BP which are generally normal, but how lightheaded I am, also chest pain, headache etc. If I felt well I wouldn't bother about numbers, unless they were dangerous. B xxx

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

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