Hyperadrenergic POTS Symptoms

[Abe]

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.

[Pistol]

@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. 

[Abe]

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.

[Pistol]

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!!!!

[cmreber]

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. 

[KaciCrochets]

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.

[Pistol]

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                                                                                                                                                                                                                                                                                                                                                                                                                                             

[p8d]

@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.

[Abe]

Thank you all @cmreber, @p8d, @KaciCrochets, @Pistol ) for your replies. I haven't been well enough to check your responses until now.  It's been a very rough few weeks.  Barely sleeping, severe digestive issues and the symptoms that feels like life is being squeezed out of me and every muscles in my body feels like they are been tightened around me.  Sudden extreme fatigue.  I don't understand that one.  One minute I am okay.  The next minute, I am holding to dear life.  Out of nowhere.  Don't know if this has to do with Panic attack or something else but I wasn't feeling any panic when it happens.  I have not been lucky with any medication yet and just currently on Lorazepam for my anxiety.  I also haven't been able to go to the clinic since the whole stay at home thing started at least to figure out what type of POTS I have or at least test (catecholamine blood test) to confirm.  With my condition, I am not sure how good my immune system is so I decided not to risk going to the clinic with the virus thing still going on. I am a 49 year old male and I must say, I get very terrified about all these a lot of times.

[Pistol]

@Abe - I am so sorry that you are struggling like that. The sudden extreme fatigue is plaguing me too at the present. It is part of a POTS flare and the only thing I can do to combat it ( except for IV fluids ) is exercise. I do a few exercises several times a day and that seems to jumpstart my BP to being at least able to function. Then, when the fatigue hits, I go to bed for 10 minutes, do exercises and am good for another round of activity. --- Feelings of panic come to me when my adrenaline surges, I am not sure if you experience the same. The current emergency certainly can make us all very anxious, so it might be due to the as well. I have a prescription for Lorazepam but I am VERY cautious in taking it. I was told that it only masks the symptoms of POTS without any real benefit and easily can lead to addiction because of that. I only take it at night sometimes for sleep. What does help greatly in those spells are deep breathing exercises. I take a slow, deep breath over about 5 seconds and then breathe out slowly through my mouth. This is a known way to calm down your ANS and it works. Do this in a quiet room for a few minutes when the anxiety gets bad.  --- Can you video-conference with your doc? If your HR is elevated he may want to put you on a beta blocker. --- It is the best to stay at home and not go to the clinic at the moment. Remember - this too will pass and we will all be able to crawl out of our dens into the sunlight again. Stay healthy, think positive and find at least ONE beautiful thing in every day. I am always amazed how many wonderful things we miss by not paying attention!!! Best wishes!!!

[Abe]

@Pistol, you are blessed.  Thanks so much for your reply.  I actually called the clinic today to ask my doctor about the fatigue and they got back to me after couple of hours.  It's a small practice so they do not have an online conferencing platform. I was told to take my vitamins and a lot of fluids and if it persist for another 3 days, I should come in.  My doctor explained to me the addictive effect of Lorazepam but then told me, I trust you because you hate medications anyways. I must say, it has help me in the last few weeks.  I am on 1mg 2x daily but I always cut it in half.  So max 1mg a day until 2-3 weeks ago when everything spiked for me.  Now I sometimes take 0.5mg three times when it get really tough to do anything.  I was on Diltiazem(calcium-channel blocker) for years but since 2017, in agreement with my doctor then, she decided to start fresh with something else (Metoprolol - beta blocker).  The side effect from it was so bad that another doctor told me to stop it right away. It was horrible.  I am kind of in a limbo right now to figure out what works for HBP and I am really tired of going to the doctor and how much it all cost.  I tried the breathing exercises but seemed like they never work for me.  Maybe I just wasn't doing them right or maybe my expectations were too high.  I am going to keep trying though.  Thanks for reminding that "this too will pass".  It's been a struggle to encourage myself in all this.  Thanks so much.

[Pistol]

@Abe - if you end up having to go in to see your doc about the fatigue: ask him to check on your vit B 12 and vit D levels. Both are known to run low in POTS, especially since during winter and now we stay in and don't get enough sunlight. I was deficient in both and after supplementation had a lot more energy. 

[TigerLily]

On 3/16/2020 at 3:15 PM, Abe said:

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.

Do you ever have low potassium whit this? 

[Abe]

On 4/22/2020 at 6:54 AM, TigerLily said:

Do you ever have low potassium whit this? 

Not sure.  I have stopped checking that for a while now but I know it is one of my problems.  I take a lot of coconut water and pedialyte so I think I'm okay.

[ramakentesh]

All POTS by definition is a hyperadrenergic state. 

The concept of hyper pots being a separate entity with unique etiologies is challenged by the fact that as many 'hyperadrenergic POTS' patients as neuropathic POTS patients have patchy small fiber neuropathy.

I have neuropathic pots with hyperadrenergic features such as orthostatic hypertension (which paradoxically improves when i take midodrine).

Hyperadrenergic POTS - according to Vanderbilt - is a description of clinical features and not a diagnosis

 

[ramakentesh]

Fatigue is the most common reported symptom in POTS according to the recent Canadian Consensus Statement.

Million dollar question is how to treat it.

B12 is a good suggestion. Mestinon helps some mildly as does volume expansion.

Ive done ok with midodrine and on very bad days pseudoephedrine. A supplement called NAC can also be helpful.

Some friends are prescribed modafinil or stronger but these may augment tachycardia 

[Pistol]

I would like to add that the most significant difference in the diagnosis of hyperadrenergic POTS are elevated norepinephrine levels and Hypertension. These factors are not necessarily present in other forms of POTS. 

[TigerLily]

On 4/28/2020 at 8:32 PM, Abe said:

Not sure.  I have stopped checking that for a while now but I know it is one of my problems.  I take a lot of coconut water and pedialyte so I think I'm okay.

Your attacks sound a lot like how I wake up just about every morning:(

My stomach on fire. Hard heart beats. Usually when I wake up with it my BP is really low and it gradually goes up. I wonder if my BP goes really low and suddenly my body kicks in to bring it up and it goes into overdrive. 

[Abe]

When going through the day to day of these multiple issues, its difficult to fathom that other people are going through these same things.  I can't say that I'm glad that other people's suffering makes me feel not alone but reading through these posts just makes my sanity less blurry.  Thanks to you all.

[Pistol]

@Abe - when I first became ill with POTS I felt utterly alone, alienated from the rest of the world and almost hopeless. There was no one to tell me what was wrong with me, everyone ( from docs to family and friends ) thought I should just "snap out of it" and I tried to do that but did it never worked ( and then I blamed myself ). Only once I found a specialist who knew all about my symptoms, how to treat them and - most importantly - finally put a NAME to my them did I finally feel understood. For many of us finding out that this is an actual illness ( and not something we can control ) feels like a huge burden lifted. 

You are not alone - and since most of us experience many of your plights the people on this forum will listen - and we will try to help if we can. It is the reason Dinet exists. Be well!!!!!11111

[Abe]

Thanks so much @Pistol .  I have been out of it all week so its been difficult to check in.  Couldn't even work and I haven't done that in my life time.  I have been in a paralyze state - every part of me (mind, body and spirit, it seem like) - all day. If this is coming from my unconscious mind, it is terrible. I am just scared for no reason I can see or tell. My body feel numb, muscle so tensed to the point that I can barely breathe or walk. Is it the tension in my body that is causing the fear or the fear causing the tension? Fighting POTS and anxiety/panic attack at the same time, seemed too much for one person to deal with in my opinion but I can't argue with God.  Not sure what to do to get out of it.

[Pistol]

25 minutes ago, Abe said:

Is it the tension in my body that is causing the fear or the fear causing the tension?

What came first - egg or chicken? -- The symptoms of POTS are very scary, so naturally we will be anxious when we have them ( who wouldn't ? ). That means we are anxious OF POTS. Other times the symptoms can feel LIKE anxiety ( tremors, excitement, racing heart. high BP, cold and clammy hands … ), in which case we are anxious FROM POTS. At yet other times we can become anxious because we are human ( everybody gets anxious at times ) and then our confused ANS goes into Fight-or-Flight mode, which then triggers symptoms making the anxiety worse because we are anxious OF POTS which then makes us get anxious FROM POTS ……..

Here is a quote from this article    https://www.potsuk.org/managing_anxiety

1.  Anxiety does not cause PoTS.
2. Symptoms of PoTS and anxiety are similar and can be difficult to tell apart.
3. It is important to discuss anxiety because being anxious can affect quality of life and make symptoms worse.
4. It makes sense that if one aspects of our physical health is compromised, we need to optimise other aspects of our life, including our mental health, to be as well as possible, and enjoy life as much as possible. 
5. Anxiety is common, and it makes sense that people feel anxiety at various points of their PoTS journey:

• before diagnosis, when they don’t understand the cause of their symptoms
• because even after diagnosis symptoms can be scary
• because chronic illness creates financial, relationship and worries about the future

[Abe]

God bless you @Pistol.  Thank you so much.  This is one of those days when it seems I get too overwhelmed. Its sad watching a fifty year old guy crying.   I am getting help with my anxiety issues through a therapist and I am on Lorazepam which has been helpful for my symptoms but it did not work today at all.

[PotSdealer]

On 3/29/2020 at 8:14 AM, Pistol said:

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:  

Hey @pistol, sorry for the late follow up.

where would one get a Proper catecholamine test?! I see them at labs around my area but isn’t the whole point of it to do it during a tilt test or some version of one? My autonomic specialist does an ANSAR test and a few places around me do a Qsweat and maybe some others  

 

thanks!

[Pistol]

@PotSdealer - mine was done in the facility of my specialist. The tubes had to be sent out to California ( or was it Colorado 😕). I had to rest in a recliner in the lab for 30 minutes, have labs drawn and then walk through the hospital for 30 minutes ( couldn't - who with POTS can? ), then they drew another set of tubes. --- I know that some docs like to do them during a TTT but it does not have to be done that way. --- In another clinic I had autonomic testing done, essentially a TTT but I stood without being secured to a bed. They checked, breathing, HR, BP etc. 

QSART and ANSAR testing do not include Neurotransmitter testing. I ASSUME that any major clinic treating dysautonomia patients should be able to do this test.