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Abe

Hyperadrenergic POTS Symptoms

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Anyone has an idea what kinds of symptoms differentiate Hyperadrenergic POTS from other types?  I was diagnosed with POTS in 2017 but never found out what type it was.  The last few weeks it has been a very bad burning sensations all over my body especially in my stomach, excessive trembling/shaking, different kind of sensations all over.  I am only taking a benzo right now because I haven't done well with any other medication. The last few weeks has been really miserable.  Thanks.

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@Abe - I have hyperadrenergic POTS and the most obvious symptom is an increase in BP, signs of increased sympathetic activity such as tremors, chills, nervousness, cold hands and feet and more - all due to vasoconstriction. Other types of POTS cause symptoms related to excessive vasodilation.  In hyperadrenergic POTS we encounter more severe hypertension. A lot of it is caused by elevated norepinephrine levels, which are normal in other types of POTS.  You can find more information here 

Were you diagnosed by Tilt table? That might show it. If you are not sure I would ask your diagnosing physician or look it up in your medical record. Also - your PCP should have a record of what type - if it was ever differentiated by the physician that originally diagnosed you. Many docs don't have the expertise to differentiate. 

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Thanks @Pistol.  I looked up my medical record and all it says was POTS (no information about the type).  Based on my symptoms, I thought it is Hyperadrenergic POTS but I am going to call the Cardiologist office (the one that diagnosed me) tomorrow and confirm otherwise I will reach out to my Primary Doctor.  It has been a very rough few weeks and I can't remember it being this bad since 2017.  I am not sure if my anxiety and panic contributed to the spiral but this is crazy.

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6 hours ago, Abe said:

I am not sure if my anxiety and panic contributed to the spiral but this is crazy.

@Abe - the symptoms of hyperPOTS can mimic those of anxiety, and elevated norepinephrine causes symptoms that can CAUSE anxiety. Also - if you become anxious this can set off your POTS ( because anxiety causes adrenaline to rise ). As you see - the two are inter-connected. Benzos can help with the anxiety but actually do nothing for POTS and many specialists actually discourage them for POTS. They only provide short-term symptomatic relief but no actual long-term value. AND they care addictive, so they should be used with caution. 

If you cannot find the type of POTS in your record I think no one ever specified the type. That is a shame b/c the treatment varies greatly for the different sub types. Ask your cardiologist when you see him today - and if he does not know ask him to test you for hyperadrenergic POTS. This is often done by measuring your BP upon standing, like a poor-man's Tilt table test. In hyperPOTS it is elevated, especially since you do not take any meds. Do you do any of the recommended things like increase salt and water intake? I am surprised they have not started you on any meds at all. 

With all types of POTS we experience flares - or surges, where the symptoms become acutely worse. Sometimes we can identify the triggers ( stress, too much activity or too little rest, illness … even changes in barometric pressure ) and sometimes we have no clue why we are bad. But - at least in my case - the treatment is always rest, with careful exercise and increased hydration. I hope you find answers - keep us updated on your appointment. Good luck!!! Stay well and be careful!!!!

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I know for me, when I first was diagnosed with POTS I was experiencing incredibly horrific panic attacks (seemingly out of nowhere), the typical increased heart rate that all of us have, huge blood pressure spikes when standing up, and terrible pre-syncopy. I finally went to the mayo clinic to see a neurologist, and after lots of testing, they determined I have HyperPOTs. The biggest indicator for me was the significantly elevated blood pressure upon standing, whereas low flow POTS people seem to have blood pressure that drops significantly. Now, I *do* get low blood pressure too from time to time, which can be confusing (though I believe it is due to blood pooling in my legs) but, especially unmedicated and in the beginning, my blood pressure would go really really high. 

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My TTT showed I had POTS, but to check for the hyper kind I had a catecholamine test done, to measure my norepinephrine levels upon standing. My levels shot up to over 600, which is the criteria for hyper POTS; however, my doctor said my resting levels weren't high enough so she didn't diagnose me as hyper, even though she admitted my symptoms act exactly like hyper POTS. 🙄 My symptoms are relieved by taking an anticholinergic, so yeah...I have hyper POTS. I've had several doctors try to diagnose me with anxiety but I only have anxiety and panic when I'm symptomatic, so you may want to take a good look and see whether you actually have anxiety or if it's something that comes and goes with your other symptoms. If you don't actually have anxiety the psych med may be doing more harm than good - I know from personal experience. I hope you can get some help from your doctors, hyper POTS is so difficult because so few doctors know anything about it.

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22 hours ago, KaciCrochets said:

however, my doctor said my resting levels weren't high enough so she didn't diagnose me as hyper, even though she admitted my symptoms act exactly like hyper POTS.

Dear @KaciCrochets - I also had a catecholamine blood test do confirm my HPOTS diagnosis. My levels were elevated both resting and upright, however my specialist states that it is unusual to also have resting upright levels. The whole reason why they elevate is the act of standing up. Here are the references for catecholamines in the diagnosis for HPOTS per Mayo clinic: 

According to this if your levels are elevated upright you are positive for HPOTS. 

The test measures catecholamines by picogram per milliliter (pg/mL); a picogram is one-trillionth of a gram. The Mayo Clinic lists the following as normal adult levels of catecholamines:

  • norepinephrine
    • lying down: 70–750 pg/mL
    • standing: 200–1,700 pg/mL
  • epinephrine
    • lying down: undetectable up to 110 pg/mL
    • standing: undetectable up to 140 pg/mL
  • dopamine
    • less than 30 pg/mL with no change in posture                                                                                                                                                                                                                                                                                                                                                                                                                                             

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@KaciCrochetsI know we used to have the same Drs and just wanted to let you know that at the time I was mis(diagnosed) as not having hyper POTS in 2015 it was discovered that the lab was not doing the test correctly.  After repeatedly complaining about the sweating/shaking/tremulousness/feelings of doom like clockwork around 4 in the afternoon (and after they discovered a problem with how the lab was doing the tests) I was retested and found to have it.  I don’t know if the initial test was during the TTT and I wasn’t left prone long enough or what but Dr D at that time listed me as “probable hyper”.  I got hysterical after 15 minutes upright which is definitely NOT my personality, I only lasted 16 minutes and they had enough to diagnose me so put me down.  Dr D called me stoic during the EMG test which hurt like h@ll so the hysteria was obviously physical.  I was diagnosed with the proper test by the NP a few months later.  I have been on various alpha blockers to sometimes good effect since but still get lots of elevated BP with activity/talking on the phone /concentration/ anything my body perceives as “stress”.  I have noticed since this d*mn virus kicked off that I get quite anxious with elevated BP about 4pm again.  I presume that the alpha blocker is wearing off at that time because I take the next dose around 5pm.  It might also be why I wake up around 3-4 in the morning recently.  So @Abe I have listed a number of symptoms in this.  I should note that I had TERRIBLE insomnia and digestive issues (diarrhea) for years which I think might be related to the hyper aspect.

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