Hyperadrenergic POTS? High diastolic BP.

[Scout]

Hi there, 

I will try and keep things succinct: 

I have had a POTS diagnosis for several years, and my symptoms were fairly well controlled with a beta blocker: metoprolol 25mg. I was taking this drug as needed / during bad flares, initially, but then started taking it everyday and did so for about a year.

But one day, all of a sudden - it seemed like the meds weren't working, or were causing problems. I was having severe tachycardia at night when I went to bed, so my cardiologist told me to increase my dose. When I did that, I reacted very badly. I started shaking violently, my heart would race, and I could feel my BP surge. Normally, my BP was low, but since then, my diastolic has been quite high. 

Slowly, I came off the Metoprolol all together because it certainly seemed to be causing some havoc. Each time I took it, my BP would rise. This was several months ago, and I have seen a number of doctors - trying to get answers, but I am constantly told it's all in my head. 

Now, my diastolic BP is almost always in the 90s. My systolic seems to be fine, however.  Just today, my BP was 108/91, and yesterday was 116/96. I've been informed that I have a narrow pulse pressure, which is abnormal. Sometimes my diastolic gets even higher out of the blue, and I can tell - because I get a specific kind of headache and overall uncomfortable feeling. 

I also have some other odd, new symptoms, such as: 

• This "electric" / surge feeling which wakes me up, often in the early morning (always around 3 or 4am). It doesn't go away until I sit upright in my bed
• Shaking violently 
• Chills 
• Heat intolerance 
• Frequent need to urinate (far more than usual)
• Low blood sugar symptoms (not a diabetic) 
• Very short of breath
• Migraines 
• Excessive sweating 

I did a urine test for adrenal masses, and that came back clear, so I have since been left with these symptoms, unsure of what to do / of what is happening. Doctors are brushing me off, telling me I am young and just not to worry about it. 

I wanted to know if anyone else has experienced these things, or similar things, and if so, what helped you? 

In two weeks, I am booked in to see my cardiologist again, so I will certainly speak with him and insist on further testing / new medication, or whatnot. Just feeling rather concerned and wanting some answers to try and stabilise my BP again, and minimise this troubling symptoms. 

Thank you so much for your time, and have a brilliant day. 

Scout. 
 

[Pistol]

Hi - I just now posted something about flares, you might want to read the post on flares. I have hyperPOTS and was on Metoprolol, the same thing happened to me, it just stopped working. My systolic BP is also always high although I have HTN. When I switched from Metoprolol to Carvelidol and then gradually increased the dose from 6.25 to 25 mg it helped. But I also ended needing Diltiazem and Guanfacine to control my BP. I also experienced that at first the meds would work for a while but then it was as if suddenly my body became intolerant to them - they just stopped working. I now also take Lexapro, Ritalin, B 12 shots, Vitamin D ( was extremely deficient ) plus several GI meds and this concoction has worked for me for the last 2 years. It does not prevent the flares but keeps me somewhat stable between them Maybe you could discuss this with your cardiologist - best of luck!

[p8d]

The “other” symptoms sound like my hyper POTS norepinephrine surges.  Maybe ask about a catecholamine test?

[haugr]

Your symptoms sound just like mine.  The frequent urination is probably a sign of a dysfunctional raas, which basically means that you aren't retaining fluids like you should.  I posted my learnings about it on my blog http://hyperpots.blogspot.com

[Pat Torok]

I have hyperPOTS and for 7 yrs was always tachycardia. However, since Dec ( I wear an Apple Watch which is very accurate compared with BP Home kit which also shows pulse. ) Since Dec, my heart rate dips to 40 to 50s  once  going as low as 31. But not sustained. It may register that low for a very short time, go to normal (70-90s) and spiked to 203 ( from surges I understand but don’t understand the very low HR. my BP was also 181/98 which is not my normal range TG! 

I need to say it may be coincidence but 5 days before I got 2 cortisone shots in my neck. Insomnia started that same night, and my vitals were at both ends from very high to very low. (not BP only HR) This lasted about 5 days then stablized I somewhat 

Ive had Catecholamine tests and certain hormones were 2xH and 1x H values for normal range 

Q: Has anyone experienced very low HR in addition and has anyone noticed worsening symptoms after cortisone injections? 

[Pistol]

When I first started taking beta blockers to fight Tachy and hypertension my HR would start to go down to 40 sometines. It stopped when I was also put on Diltiaem and switched to a different BB. Do you take meds that could drop your HR?

[bombsh3ll]

On 4/12/2018 at 5:27 AM, haugr said:

The frequent urination is probably a sign of a dysfunctional raas, which basically means that you aren't retaining fluids like you should.

I second that. I produce neither renin nor aldosterone, and tend to have high diastolics. I think the RAAS can malfunction in a number of different ways though, as losartan didn't help me although I've never had angiotensin tested.

Beta blockers suppress renin production, and they also cause vasoconstriction by unopposed alpha receptor activation, but I would not imagine these effects persist for very long after you stop taking them.

On 4/12/2018 at 2:22 PM, Pat Torok said:

I wear an Apple Watch which is very accurate compared with BP Home kit which also shows pulse. ) Since Dec, my heart rate dips to 40 to 50s  once  going as low as 31.

Having previously used a HR watch with a chest strap, I take extremes of high/low pulse from my current wrist HR monitor with a pinch of salt. Mine too will occasionally read very low - not all beats are always detectable at the wrist particularly in volume deplete individuals with low pulse pressure and/or poor cardiac output. Conversely when I use my seated indoor pedaller for exercise, I can have a HR in the 80-90s but my wrist monitor can read up to 180's!

[Scout]

Hi everyone, 

Thank you so much for taking the time to reply. They have all been very helpful. I will check out those particular threads, and links. Thanks again! 

It's also very interesting you folks bring up the RAAS. I have been thinking about whether that is an issue for me. If that is the case, is it possible that sometimes, my BP is low / normal? 

The past 2 days, I had normal BP. 

And now, suddenly, my diastolic is high again. I feel no different - not anxious or anything of the like. But I just feel the sudden "surge" is the best way I can explain it. And uncomfortable knowing, and then I check and, yep - diastolic is back up. 

Yesterday morning my reading was 112/73, which is obviously fine. 

But in the evening, it was 116/96. It is very odd, indeed. 

I saw my doctor, again - explaining how this happens. But no one is believing me. They are saying I am simply anxious and to move on. I have been trying to sort this out for months and months, and am getting tired of it. 

Should I push for a renin/aldosterone test? 

I have had my catecholamines checked - did a 24hr urine test, and that was within normal ranges. 

Thanks again for everyone who replied. I hope that, soon, I can get this sorted. 

[haugr]

Blood pressure isn't exactly a constant, even for healthy people.  Your body has 2 main mechanisms to raise blood pressure - either through the activation of the sympathetic nervous system, or from an activation of the raas.  The raas gets activated when the kidneys detect low blood flow (like when someone typically gets a bit dehydrated), which causes your blood pressure to rise, your kidneys to retain fluids, and it makes you thirsty.  With a raas dysfunction, that process doesnt work properly, which can cause blood pressure to rise, but not properly retain fluids.  The brain can compensate for the low blood volume by activating the sympathetic nervous system in order to keep enough blood flowing to the brain.  The activation of the sympathetic nervous system (specifically norepinephrine) is usually what people with hyper pots describe as the surges.

So, to answer your question, it is completely normal for someone with a raas dysfunction to experience some large blood pressure swings throughout the day depending upon that person's hydration/ blood volume level.  Anxiety can also play a big factor too since the combination of the sympathetic nervous system and the raas can lead to some scary intense blood pressure spikes.

It is definitely worth getting your renin-aldosterone ratios checked, but it is worth noting that an ace2 deficiency won't show up as abnormal in those test results.  An ace2 deficiency has normal renin and aldosterone, but high angiotensin ii.  As far as I know, there isn't a common test thats labs have availabke to them to test angiotensin ii levels. 

The most important thing to do if you have a raas dysfunction is to make sure that you are ALWAYS extremely well hydrated and that you are consuming plenty of electrolytes.  Keeping your body in a state where is doesnt need to activate the raas is key.

For what it's worth, the ace2 deficiency is what I have.  Losartan and increased fluids and salt got me back on my feet again.  Clonidine was a life saver too, especially when hitting hypertensive crisis levels.

[yogini]

In POTS sometimes your heart beats fast to compensate for low BP.  Beta blockers tend to lower both HR and BP.  If you had tachycardia because your BP dipped too low during sleep, taking more beta blocker could have made it worse by further lowering your BP.  

Metoprolol gave me shortness of breath, but I have tried atenolol and bystolic with no problem.  Each beta is different and sometimes you have to experiment.

[Steven]

On 4/16/2018 at 1:45 PM, Scout said:

I have had my catecholamines checked - did a 24hr urine test, and that was within normal ranges.

Hi @Scout. The 24 hour urine test is useful for diagnosing tumours but it's not the right test for diagnosing hyperadrenergic POTS.

The catecholamines testing used for diagnosing hyperadrenergic POTS is testing the levels of catecholamines in blood plasma, taken lying down then taken again standing up or tilted to an upright position. The testing is typically known as "supine and standing plasma catecholamines". It might require visiting a hospital in a large city. I live in a small state in Australia and have to go interstate for it.

[Scout]

@Steven - Thanks so much for the information.  I am in Australia too, as it so happens. Could you possibly recommend a hospital / doctor who knows of this testing? Many thanks! 

@haugr - Incredibly helpful information. Thanks so much. I will do all I can to insist on some testing, and you are so right - I am always feeling a lot better and have fewer "surges" when I am well hydrated. 

@yogini - Brilliant point. I am seeing my cardiologist tomorrow and will definitely discuss trying a different beta blocker. Thanks again! 

[Steven]

@Scout - For plasma catecholamines testing the best bet would be a larger hospital in a capital city. If you have a particular hospital in mind you might be able to find plasma catecholamines testing listed somewhere in the pathology part of the website for the hospital or state health department.

Just to give you an idea of what to expect, you might be put on a waiting list about a year long to get a consultation to assess you for testing - then possibly put on a further waiting list for the actual testing - unless you can get a doctor, preferrably a specialist, to push for you to be tested sooner. I'm currently on a waiting list for a consultation at the Austin Hospital in Melbourne.

Plasma catecholamines supposedly have a half life of about two minutes, meaning that processing of the blood samples needs to be done by a skilled lab technician right after the samples are taken. If you live outside a capital city, hospitals or medical centres in the local area might have decided it's too hard for them to offer it, like Tasmania has.

You might need to explain the difference between supine and standing plasma catecholamines versus 24 hour urine catecholamines, and deal with a doctor whose attitude is that 24 hour urine catecholamines is good enough.

Where in Australia are you?

In my research online I've only really come across the names of a few doctors per state who deal with dysautonomia/POTS conditions. I think you'll find that the vast majority of doctors in Australia won't know what you're talking about if you say dysautonomia. They might have a vague idea if you say autonomic dysfunction. A cardiologist might have heard of POTS but their knowledge will probably be fairly limited to the tachycardia part of that. Whatever state you're in, I think you'll find that when people insist on investigating dysautonomia/POTS a doctor will likely Google it and refer the person to one of the few doctors that show up in that state, or the nearest other state, for the search term they use, so people get funnelled toward a very small number of doctors per state for these types of conditions. They aren't necessarily the best doctors - just the ones who started showing up in Google results for the relevant search terms. The snowball effect of this small number of doctors getting more referrals for these types of conditions leads to more people mentioning them online in relation to these conditions, which further entrenches them in the relevant search engine results, which leads to more referrals. I come across the same few doctors in Australia over and over but I don't necessarily hear of many people getting great results. Someone might say something like the doctor was nice and helped them get hold of a medication they had trouble getting elsewhere or that the doctor was knowledgeable about what symptoms dysautonomia patients present with (because patients statewide get funnelled to them), but I don't really come across people in Australia saying that a doctor had a rigorous scientific approach, promptly got them the testing they needed to identify the biological mechanisms involved, came up with an effective treatment/management plan, followed up with a competent assessment of how the treatment/management was going etc.

If you type the name of your state or capital city into the search bar at the top-right of the page you should be able to find the names of the few doctors associated with dysautonomia and POTS in your state capital.

[Looking_for_light]

@Pistol Which gastro meds have helped the variety of GI issues? 

Which test(s) did you have to diagnose transit time? 

Who here has rapid gastric emptying / dumping syndrome and what do you take for it? Acarbose? Octreotide? 

Thanks! 

 

[Pistol]

@Looking_for_light my GI problems have greatly improved over time. When I was at my worst a EGD showed severe inflammation of espohagus ( I had Barretts )  with bile reflux and duodenitis. I also was deficient in Vit B 12, which gets metabolized in the stomach. I was put on Protonix, Carafate ( to bind the acid ) and wwhat is called a GI cocktail ( viscous lidocaine, Mylanta and Phenobarbital ). these meds taken over a few month really helped heal and prevent the erosion from excess acid. 

Now all I take is Protonix. Later I had problems with nausea and they did a gastric swallowing study which shows how fast the stomach empties. They diagnosed me with mild gastroparesis and for a while I was on Reglan but stopped it. Dietary adjustments have helped the most - I avoid carbs, eat a lot of protein rich foods and avoid large meals - I snakc every two hours, and that makes a huge difference. 

[Looking_for_light]

@PistolWhat symptoms does Barretts cause? 

Can frequent choking on foods/drinks be part of Barretts or dysautonomia? 

Is an EGD the same or similar to a endoscopic ultrasound? 

Thanks!