Non-Anxiety "Panic Attacks" with POTS?

Posted by azurite @azurite, Aug 20, 2020

I'm 27 years old, and 2 months ago (coincident with just before I had an upper endoscopy), I started experiencing symptoms of lightheadedness, dizziness, heart racing and pounding out of my chest, blurry vision, etc. I had a til table test done earlier this month that was positive for probable POTS. However, coincident with these symptoms, I also began experiencing what I would call non-anxiety "panic attacks." At times when I wake up in the middle of the night, my heart will start racing and a sense of panic floods my body. My veins feel as if they go white cold with electric charge, and I feel 'trapped' inside my body, oftentimes shaking. My brain will also often feel like it's being pulled into another dimension. It's a horrific sensation that can take 20 min to pass (I typically have to take a Xanax to get through it). There were also days when as soon as I would wake up in the morning I would instantly be filled with a sensation of panic with a racing heart. My body feels like it's constantly on the edge of fight-or-flight, but it feels entirely physiological rather than psychological (I've been meeting with a psychologist for months and had been doing really well with my anxiety, I never experienced panic attacks before). Has anyone else with POTS experienced these issues? I'm getting better dealing with my issues of lightheadedness during the days, but now I'm terrified to go to sleep at night.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

sunniva | @sunniva | Sep 4, 2022

In reply to @mayofeb2020 "@azurite @texas14. Very interesting. My HR goes up for no apparent reasons sometimes, like doing housework......" + (show)

Try “Heart salt”. - it is mostly Potassium chloride, less Sodium chloride

astroyogi | @astroyogi | Dec 14, 2022

@azurite You describe exactly what I've been experiencing exactly how I've been experiencing it, almost as if I wrote it myself. I had these "attacks" happen once every few months beginning in 2020 and now they are occurring more frequently with 4 in the last two weeks. Were you able to find something that helps? I hope you have.

sylviajean | @sylviajean | Dec 15, 2022

Sorry for my ignorance but what is POTS?

shoshin | @shoshin | Dec 16, 2022

Very sorry to hear of your experience & suffering. Very often physicians (especially when diagnosing unusual symptoms with no immediately recognisable aetiology; there's a recent controversial paper published by a team headed by a diagnostic physician from Johns Hopkins documenting the incidence of misdiagnosis by American physicians, particularly emergency-room physicians) refer patients to mental-health care providers when they do not succeed in formulating a biologically-based diagnosis. Curious whether you have had a prior COVID-19 infection (whether asymptomatic, mild or severe)?

hopetoliveto99 | @hopetoliveto99 | Apr 22, 2023

I have this exact problem and was diagnosed with pots at Hopkins in 2020. I spent over a month inpatient. Yes, I have these and I have wanted to end my life over these in so scared of going to
Sleep. I developed one of the worst pots cases hiokins has seen. These nocturnal attacks happen around 4am when my cortisol levels are high. My first “panic attack” was in recovery from surgery for partial thyroidectomy 12/2019. I started pots immediately and it’s been 3 1/2 yrs. I still have these and hope they go away.

dysautonomicsidhe | @dysautonomicsidhe | Jul 12, 2023

Yes, I have felt the same thing, and I am still waiting to be tested for POTS, but from everything I've read, I likely have it. I have hypermobility EDS and MCAS as well, which tend to run alongside POTS. I have emotional anxiety, but the physical panic attacks are never caused by emotional anxiety for me. When I hit 27, I started having the physiological panic attacks. No one believes me when I told them I wasn't thinking about anything or doing anything anxiety inducing when they would occur, and like you said, they would jolt me awake and often occurred first thing in the morning. They also sometimes happened during the day when I was doing nothing or mundane things that would not have given me a reason to feel psychological anxiety. I still get them and most of the time if I lay down for a while they go away after an hour or so, but sometimes I have to take hydroxyzine, which makes me sleep anyway. I wish you luck in finding out what helps for you!

potsmystery | @potsmystery | Aug 3, 2023

In reply to @rbartony "I’m an editor with Mayo Clinic Press and we are getting ready to publish a book..." + (show)

@rbartony

I’m an editor with Mayo Clinic Press and we are getting ready to publish a book on POTS by Dr. Phil Fischer, a Mayo pediatrician. I ran your question by Dr. Fischer and here's his response:

"As a pediatrician who has had the privilege of caring for literal thousands of adolescents with POTS, I appreciate your good question. Of course, adolescents are not completely like adults, and each patient is unique. But, perhaps some general comments are helpful.

The simple answer to your good question is “yes, patients with POTS can have attacks that look like panic attacks but don’t actually involve anxiety or panic.”

POTS is a result of imbalances in nerve chemicals regulating the autonomic nervous system. The adrenaline family of neurotransmitters and the serotonin chemicals are key “players” in the regulation (and dysregulation) of involuntary nervous system function. Adrenaline and related chemicals are most related to circulatory changes in POTS, and we are all familiar with adrenaline from its role with excitement and with the “fight or flight or faint reflex.”

While adrenaline and serotonin relate to autonomic dysfunction, they also relate to brain activation and anxiety and depression. So, when these chemicals are altered in the autonomic nervous system, they also potentially have effects on the brain. It is, thus, not surprising that more than a fourth of adolescents with POTS also have challenges with anxiety and/or depression. Panic attacks, in particular, relate to the adrenaline chemicals.

But, I also see lots of POTS patients who have episodes of feeling like they can’t breathe while their chests feel heavy and their hearts race. Sometimes this is so scary that it leads to actual panic, but often it is totally separate from anything going on emotionally. I call these panic attack-like spells “POTS attacks.” And, these POTS attacks usually resolve with the treatment of POTS.

You also made good comments about the diagnosis of POTS. Tilt tests are very helpful for determining if the change in heart rate with position change is excessive or not, and that excessive change is a key factor in the diagnosis of POTS. But, the other part of the diagnosis is that POTS patients have a story of months of bothersome daily intolerance of being upright (like being very dizzy when standing) in addition to whatever other symptoms they have (like nausea, fatigue, headache, and whatever else).

I hope these comments help as you move toward recovery!"

Phil Fischer

Good luck! You can find Dr. Fischer's book, Tired Teens: Understanding and Conquering Chronic Fatigue and POTS, in stores in early February, 2021.

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Does anyone have random rashes/tingling /burning associated with POTS?

sierra97 | @sierra97 | Aug 23, 2023

I’m so sorry to hear that you are experiencing this. I’ve been having the exact same thing happening almost every night, about an hour or so after I fall asleep. I’ve been explaining it to everyone as similar to panic attacks but a lot more intense. I hate that you can relate, but glad I saw your post as it helps me make sense of things a little. If you’ve found anything at all that has helped with this, please let me know. I hope you are doing well

saganjames | @saganjames | Aug 24, 2023

A family member has POTS but is getting better by following a POTS protocol involving diet and exercise. Don't know the particulars except that protocols are discussed on line.

jsaffold3535 | @jsaffold3535 | Dec 4, 2023

Hi! I also was diagnosed with POTS and had these “nocturnal panic attacks” for a span of about two months before diagnosis. I had the tilt table test done which was positive for POTS and once my cardiologist started me on a beta blocker (metoprolol) the late night attacks started becoming less and less frequent and now I haven’t had one in about a month! From my understanding, a beta blocker is usually the first form a treatment for POTS, maybe you should ask your doctor about it!

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