haugr

One of the known causes of POTS is a dysfunction of the system that is responsible for regulatung blood volume through retaining a sufficient amount of fluids (RAAS).  I believe that those with that type will urinate more often.  Frequent urination was actually my very first symptom.

I had to stop going into the office for a few months after my POTS kicked in and knocked me out of condition. I ended up losing my job shortly after getting to a point where I was in a stable enough state to go back.  I started a new job a couple of months later and luckily I've been stable enough that it hasnt significantly negatively affected my ability to work since then.

It's a tricky balance.  Too much sodium will cause your blood pressure to rise.

My POTS kicked in about this time last year.  I was bed ridden for 2.5 months and lost my job because of this stupid condition.  I felt so hopeless, depressed, and frustrated thinking I wasn't ever going to be able to function again. I was lucky enough to have been able to recover though.  By December I was back on my feet and by about February I was pretty much back to normal.  Finding a good doctor and understanding the physiology behind the symptoms helped me tweak my treatment to a stable state.  My POTS was a side effect of being hypovolemic from a RAAS dysfunction - so Losartan, Clonidine, increased anti-oxidants, and increased sodium and fluids gave me my life back.  

Hang in there - finding the right balance of meds and other treatments is doable, but it takes time.

Welcome to the forum hardtohavefun.  That sounds like it could be what I have been dealing with.  The paleness could be explained by really high norepinephrine levels.  Are your hands and feet tingly even when lying down?  If you have access to a blood pressure machine, it would be interesting to see what your blood pressure is while you are standing when you are pale.  

I'm on a low dose Ssri.  I think it's helping.  A reduction of anxiety is always a major positive for us potsies.

So sorry Trinity.  I pursued imaging after my metanephrines indicated that I didn't have a pheo.  It didn't turn up anything though.

Mine was similar to yours, minus the facial flushing, although my ears would flush when i was very symptimatic.  Turned out to be a RAAS dysfunction that I am able to treat with losartan and clonidine and increased fluids and sodium.  I'm not sure if it's the same thing that you have, but I documented the details about it here: http://hyperpots.blogspot.com

Was your catecholamines tested while standing?  Does anxiety while supine ever cause you to be symptomatic?  Have you noticed abnormal paleness? Any Abnormally frequent urination?  Does your rise in bp correspond to when you started any meds?  Tingly hands and feet?

I think that this video on pots is the best that i have seen. In it he talks about how symptoms are primary vs secondary.  Might be relevant to your husband since the orthostatic tachycardia looks like it was secondary to another cause.

Clonidine does lower your blood pressure.  I would definitely recommend tracking your blood pressure - especially when having one of your surges.

Clonidine is the go to control the adrenaline surges and it has the added benefit of making you sleepy.  Beta blockers and alpha beta blockers seem to be hit and miss for us potsies.  Losartan is amazing if the cause of your POTS is RAAS dysfunction.

Thanks for the update.  It is good to hear that he has made some progress.

On ‎8‎/‎4‎/‎2017 at 2:51 PM, stooshiecat said:

Hi!

I'm not sure what my BP is on the Propranolol and I've had to stop taking it now.  I was at a doctor yesterday because of my constant headaches.  He asked about other symptoms, felt my neck and told my it was tension with no mention of my other symptoms!  I wish they'd look at my symptoms as a whole instead of individually.

I read that, other than the tilt table, a 24 hour ECG is also used for diagnosis but mine didn't show any red flags.

One of the reason I'm so frustrated that they're not investigating is I had a problem with my heart last year.  I was going through pre-op for shoulder surgery (which didn't happen) and the nurse found I had long QT intervals.  Luckily it was being caused by my medication (which they changed) and cleared up a month or so later.

I had occassional extra beats and occassional missed beats, but otherwise my ecg was normal too.

You probably know this already, but when the brain needs additional blood flow, the brain triggers an increase in heart rate and blood pressure. Since beta blockers can effectively inhibit that natural process from happening, it makes sense why they might make someone might feel worse if there is a lack of blood flow to the brain.

Hi Stooshie, I'm so sorry you are dealing with this. It sure sounds like it could be POTS. Eye strain, brain fog, headaches, and tingly hands and feet are consistent with what I deal with. 

Some on here have reported that Propranolol has negatively impacted their symptoms, but some have said that it helps. There may be other options too depending on the underlying cause. 

A diagnosis of anxiety is common. There aren't many doctors that have experience treating POTS and both have a tendedency to activate the sympathetic nervous system leading to some overlap with the symptoms.

I have a constant tingling sensation in my hands and feet.  I wouldn't call it numbness, but it is a pins and needles like sensation.  High norepinephrine can cause cold and /or pale skin by its vasoconstrictive effects, especially in the extremities and in the face.

590 is a really high for a supine norepinephrine measurement.  Have you by chance been tested for a pheochromocytoma?

The hyper POTS and a pheo share symptoms so it is certainly valuable to get tested for one.

It varies.  The first challenge will be getting diagnosed.  There are not many doctors that are familiar enough with pots to adequately treat it.  I would recommend being patient and trying out multiple doctors until you find one that understands pots and seems willing to work with you.  You can expect to go through a series of tests to rule out other problems which will likely take weeks or months.  You can also expect to have to try out many several different medications and dosages, sodium supplementing amounts, etc until you find what works for you.

There are a few things that make this process so difficult.  First, there are not many doctors that have experience treating it and the symptoms of POTS are confusing to most doctors since they aren't isolated to any particular system.  Second, there are multiple underlying causes of POTS.  The term POTS is a really description of one of the main symptoms, and not the underlying cause.  Finding the underlying cause can make a big difference in how long it takes to get better.

In my case, it took about a month to get diagnosed, another 6 weeks before I could function, and another 6 weeks before I felt relatively close to being back to my old self.  But I was lucky, i think it often takes longer.

17 hours ago, SarahA33 said:

I started Clonidine, which is a BP med that blocks norepinephrine (adrenaline) and the surges completely stopped. 

Clonidine stopped my night sweats too.

That's great news!  Gatorade, Propel, Pedialyte, or Nuun tablets are decent ways to get sodium.

Welcome to the forum Kara!  I'm so sorry that you are dealing with this. I believe that the night sweats are unique to the hyperadrenergic subtype, and the frequent urination might indicate a RAAS dysfunction (which is one underlying cause of hyper pots).  I highly suggest tracking your blood pressure while you are learning how to manage this.

That would be my guess too.  It most likely isn't this, but since the blood pressure readings don't seem to be predictable, it might be worth asking the doc to rule out a pheochromocytoma at a future dr appointment.  From what I understand, the symptoms of a pheo are very similar to hyper pots since both have elevated norepinephrine.

Wow Finnmin, that blood pressure reading is scary.  Did it come back down easily after he laid down?  What medicines is he taking now?  Is he still on the beta blocker?  And is he sodium supplementing currently?

Hypertension is the biggest one.  Other common symptoms that are unique to hyper pots are pallor and sweating.  

Symptoms of hyper pots are actually similar to the symptoms of a norepinephrine secreting pheochromocytoma, so googling that might give you some additional insight.