Pots vs HyperPots

[StayAtHomeMom]

Something I have noticed during my research these last months is there doesn't seem to be a good list of the differences between pots and hyperpots. I know hyperpots may or may not cause a blood pressure change but are there any other symptoms specific to hyperpots? I know the difference by definition and I know there are tests that could tell the difference, but I am wondering about the symptoms and signs themselves.

[SarahA33]

Hi Stay@HM --

I'm looking for the more recent paper that Dr. Grubb has written on this sub-category but I cannot find it atm. I will keep looking. This is taken from a paper he wrote some years back, the info is still relevant. Hope this helps! Sarah

A second (and less frequent) form of POTS is termed the “hyperadrenergic” form.⁹ These patients often describe a more gradual and progressive emergence of symptoms over time rather then an abrupt onset. Patients with hyperadrenergic POTS often complain of significant tremor, anxiety, and cold sweaty extremities while upright. Over half of these patients experience migraine headaches as well as a significant increase in urinary output after being upright for only a short period of time. A characteristic of this form of POTS is that patients will often display orthostatic hypertension in addition to orthostatic tachycardia. Many will also have an exaggerated response to intravenous isoproterenol, as well as significantly elevated serum norepinephrine levels (>600 ng/mL) on standing. http://circ.ahajournals.org/content/117/21/2814

[SarahA33]

Here is a recent Paper by Dr. Raj: https://link.springer.com/article/10.1007/s11910-015-0583-8#Sec3

[StayAtHomeMom]

The articles helped a little, but I have read them before. It still doesn't truely give me the difference though. I am hoping to find something that is a symptom or sign that directly points to "you have hyperpots".

[BuffRockChick]

I have gathered that irritability and anxiety are common in hyperPOTS because of high norepinephrine while standing.

[haugr]

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.

[StayAtHomeMom]

Thanks everyone for your input. I am grateful.

[Finnmin]

I'd like to know all about this topic too, since my husband seems hyper, but he doesn't have tremors, cold and sweaty extremities or dilated pupils. But he does have hypertension, pallor (sometimes his whole head is deep red though!) and anxiety/anger.

I'm hoping that testing his norepinephrine would give some answers, but we have to turn to a private laboratory, and they only offer 24h catecholamine urine test. Does anyone know if it's any good for revealing or ruling out hyperPOTS? 

[StayAtHomeMom]

I had the 24 hr urine test and it all came out normal. I have an appt with an endocrinologist next month to test the blood. As far as I know as long as the test is done correctly by the patient it should be accurate.

[Finnmin]

13 hours ago, StayAtHomeMom said:

I had the 24 hr urine test and it all came out normal. I have an appt with an endocrinologist next month to test the blood. As far as I know as long as the test is done correctly by the patient it should be accurate.

Thank you. Did you spend most of the day in bed, or sitting, or on your feet when doing the 24h urinary test? I'm thinking if hyperPOTS would reveal itself if my husband would try to be upright more -> more catecholamines in the urine, if he is hyper.

[SarahA33]

S@HM & Finnn- do you or your husband get migraines? That is a very common characteristic of hyper pots as well, as is anxiety like Buffrockchick mentioned, more so while upright. and flushing.   Often both supine and standing NE levels are obtained, 15-45 minutes after the patient is left in  quiet room, and then 15-45m minutes after standing upright, depending on the lab.  Some doctors also additionally measure levels during a tilt table.

Here is an older thread:

 

[StayAtHomeMom]

Finnmin I am not sure. I imagine I did so I could keep my mind off not having many cigarettes and absolutely no caffiene. I never thought about it. I spoke to my pcp the other day and she is sending me to an endocrinologist to see if he can do the blood test. I requested that test because of some new information I got from my dad. But now I am wondering if I did it "wrong". 

[StayAtHomeMom]

Does anyone else notice loud noise or overlapping noise (like crowds or mutiple people) makes it worse? Or mornings are better than evenings?

[BuffRockChick]

Not sure if I have hyperPOTS, I suspect I do because blood pressure goes up and I have irritability when standing.  Overlapping noise is a big issue for me, sudden loud noises too.

Mornings are worse for me, I can be fully functional in the evening.

[StayAtHomeMom]

Buffrock is irritability and mood swings not normal for regular POTS?

[BuffRockChick]

I cannot definitively say, but when I posted a question about it, the responders were those with hyperPOTS.

[StayAtHomeMom]

My biggest strike against having hyperPOTS is my blood pressure doesn't rise. Since this all started it moves more but only like 5 or 10 points. And that is just daily reading not tilt table readings. Can you have hyper without the blood pressure change?

[Infoseek]

My blood plasma catecholamine test indicates that I have hyper pots, but my bp is always so low.... , i do have adrenaline surges, but the low bp is baffling me...I just bought a blood pressure cuff and my next surge I'm going to take a reading...except the surges rarely happen when I'm home ?‍♀️ 

[StayAtHomeMom]

Thanks infoseek. I am glad I am not wasting my doctors' time with this line of investigation. 

[SarahA33]

I'm almost certain hyper pots patients can have hypotension also. I experience both high and low bp, and I've got high adrenaline levels. This may be a good question for our medical advisors... DINET publishes a quarterly newsletter with a medical q&a section, answered by some of the top dysautonomia/pots specialists, you can view the advisors page through the about us tab above.  Our members submit questions, so If anyone would like to submit please send them to DINETandForumInfo@dinet.org 

 Does anyone remember their dopamine levels? I ask because mine have been all over the place.. Not detectable and then slightly higher than the reference range. I saw in one of the papers that dopamine can be high in hyper form.  

Also, welcome to the forum, infoseek!

[StayAtHomeMom]

I have never had my dopamine checked. My blood pressure is "normal". Every once it a while it will drop a little but only by like 10 points. The last time I was in my cardiologists office it wss 112/69. Which is a little low for me but I dont think I have ever seen it lower. That is why I oringally thought it can't be hyper it has to be something else. But I found out my dad has adrenaline problems that they are trying to find the underlying cause. They did the mri expecting to find the tumor and did not. Plus the fact that my oldest son is showing signs of POTS (he usually goes from 70 to 140 standing). I assume it has to be something hereditary.  And considering my dad is not hyperflexible the only conclusion I can come up with is hyperpots. Because I can not find a site dedicated to just hyperpots it makes it difficult to sort out what are normal pots and hyperpots only symptoms. I know there can be some overlap but I assumed all my symptoms were regular pots symptoms but by some of the descriptions it may not be.

[HangingByAThread]

I am hyper.  I had adrenaline surges for years before being diagnosed.  My endocrinologist performed the 24 hour urine test 2 or 3 times over the years but it was always negative (maybe because I unluckily never had the surges during the testing?  I usually went to him to be tested right after a major episode so maybe the timing was off?).  My systolic blood pressure hovers around 100 (or as low as 90/50) but can easily shoot up to 135 or beyond (it is the fluctuations that make me feel miserable) and it is always the lowest when I wake up in the morning.  I could go to loud rock concerts without any problem and my screaming children didn't even bother me as much as they did my "normal" husband but I hate it when the radio is very loud and every once in a while in a large crowd with overlapping voices, it would feel very surreal (hard to explain - sort of like a bad movie with 100s of loud voices in your face).  Every time a car honked its horn or the doorbell rang, I jumped and my heart would race and I would sweat profusely.  Methyldopa was recommended by Vanderbilt and it has been a godsend - I feel so much more mellow!  I have the tremor mentioned in the beginning of the thread but it happens at night while lying in bed and then I wake up like that.  I'm not sure if this is due to my meds wearing off at night or because I've been lying down long.  While lying down makes me feel better, being flat gives me intense pressure in my head.  I normally don't lie flat but there are times that you have to such as having an MRI or an exam and during that I will have unexplained muscle spasms which cause my leg to jump.  Doctor said my blood flow while supine is hyperkinetic so I sleep with 6 inch metal risers under the head of my bed.

[Irunwithscissors]

On 5/26/2017 at 7:31 PM, StayAtHomeMom said:

Does anyone else notice loud noise or overlapping noise (like crowds or mutiple people) makes it worse? Or mornings are better than evenings?

My mornings are the worst ever for what feels like adrenaline surges that are completely uncontrollable. I just had another this has been going on for so long. I know this is an old thread but I was just searching for answers....I got out of bed and moved around maybe 20 mins or so and started feeling weird. Thought ok I need to eat, started to prepare early lunch couldn’t find what I needed, went into my teenage sons room looking for my crackers and his room was a mess and there was half a sleeve of of bed crackers and I lost it. I raged and now the stereo is in ththe backyard and I’m sweating and trembling and crying. But now that I’m lying down I feel fine..... 

[StayAtHomeMom]

Irunwithscissors: i have noticed mood swings worsening the closer i get to my cycle. I usually try to avoid as many people as i can during the week it is worse. Finding answers is what i think everyone is searching for. It also helps when you find someone else suffering through the same or similar things. I personally feel less crazy.