Non-Anxiety "Panic Attacks" with POTS?

Posted by azurite @azurite, Aug 20 12:12pm

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.

@azurite I don't have POTS (Postural orthostatic tachycardia syndrome), but have a some of the symptoms. My bp tends to be low and my heart beats fast for no reason at times. I think diet is one of the main things that is going to help you. Sodium helps… salty foods and not eating many processed foods. You could take salt tablets. I haven't done that yet. Instead of 4 meals a day divide the food into 4-5 meals.

I did a very quick search and these are good articles. I saw there are some videos on youtube that might be worth watching too.
https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-all-about-pots-postural-tachycardia-syndrome/
I am sure there are more post on this site regarding the subject. … if you haven't tried the search option at top of page try it… try POTS and if no results try full term of Postural orthostatic tachycardia syndrome.

Zee Gee

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@fourof5zs

@azurite I don't have POTS (Postural orthostatic tachycardia syndrome), but have a some of the symptoms. My bp tends to be low and my heart beats fast for no reason at times. I think diet is one of the main things that is going to help you. Sodium helps… salty foods and not eating many processed foods. You could take salt tablets. I haven't done that yet. Instead of 4 meals a day divide the food into 4-5 meals.

I did a very quick search and these are good articles. I saw there are some videos on youtube that might be worth watching too.
https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-all-about-pots-postural-tachycardia-syndrome/
I am sure there are more post on this site regarding the subject. … if you haven't tried the search option at top of page try it… try POTS and if no results try full term of Postural orthostatic tachycardia syndrome.

Zee Gee

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Interesting that you mentioned more salt in diet for heart rhythm issues. I had catheter ablation 2003 at Mayo Clinic for SVT. And my PA assisting my EP cardiologist suggested more salt in diet to increase blood volume which helps suppress arrhythmias. Glad to hear this commented on after all this time. Most people I tell thought I was nutty or heard PA wrong. Thanks for confirming I am not nuts. 😊

Liked by gldnrtrvrlvr

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@azurite @texas14. Very interesting. My HR goes up for no apparent reasons sometimes, like doing housework… I read too that increase salt intake would help but I also read that salt restriction is recommended for people with hypertension which I have, so what to do? I'm going to try it for a few days.

Liked by texas14

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@mayofeb2020

@azurite @texas14. Very interesting. My HR goes up for no apparent reasons sometimes, like doing housework… I read too that increase salt intake would help but I also read that salt restriction is recommended for people with hypertension which I have, so what to do? I'm going to try it for a few days.

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Is your Dr not treating your hypertension?!I started on Diltiazem for aFib to supplement Sotalol & bonus is BP went down to better numbers. Worth an ask to your Dr. I have no side affects on it.

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@texas14. Yes, i am on meds for hypertension which is under control. The other day my bp spiked up the whole day and I was having anxiety over it. Fortunately it went back to normal the next day. The HR issue is whay bothers me . I do not have afib, my cardiologist said it's "conditioing".

Liked by texas14

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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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@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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This was very helpful and reassuring to hear! Hopefully I'll soon be able to begin the road to recovery.

Liked by rbartony

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@texas14

Interesting that you mentioned more salt in diet for heart rhythm issues. I had catheter ablation 2003 at Mayo Clinic for SVT. And my PA assisting my EP cardiologist suggested more salt in diet to increase blood volume which helps suppress arrhythmias. Glad to hear this commented on after all this time. Most people I tell thought I was nutty or heard PA wrong. Thanks for confirming I am not nuts. 😊

Jump to this post

@texas14 The sodium (salt) helps with low blood pressure that can come with POTS. I don't know if it does help with the rhythm of the heart. I was underweight when struggling with the low bp. My fast heart rate has happened since I was a child… no matter if I was underweight or overweight or within range with my weight.. or if my bp was in range. The fast heart rate has happened with this salty diet.. but I don't eat salty everyday.. that may make a difference. So far the doctors tell me nothing to be concerned about yet with the fast heart rate. I go through heart test ever once in awhile.

POTS effects the young… teenagers mostly. I am far from that 😁

If it feels like a panic attack it can be scary. I have not been out in public much the past few years and I get panic attacks when I get around many people. I actually ran out of a store a few months back.. before this covid started. Out in the open and a few good breathes and I was okay. I could not bring myself to go back in the store though.

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Hi @azurite, I'd like to add my welcome. I think @julianned @c130 @lpate and @jackiepon will also be interested in this discussion and may have experiences to share with you. You can also read more about their stories with POTS in these discussions:
– POTS – postural orthostatic tachycardia syndrome https://connect.mayoclinic.org/discussion/pots-postural-orthostatic-tachycardia-syndrome/
– I have symptoms similar to POTS but was told it isn’t POTS https://connect.mayoclinic.org/discussion/i-have-symptoms-similar-to-pots-but-was-told-it-isnt-pots/

Azurite, I'm glad that you're getting better at dealing with the lightheadedness during the day. Can you share what has helped you? What strategies have you tried to calm you to be able to sleep?

Liked by rbartony

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@colleenyoung

Hi @azurite, I'd like to add my welcome. I think @julianned @c130 @lpate and @jackiepon will also be interested in this discussion and may have experiences to share with you. You can also read more about their stories with POTS in these discussions:
– POTS – postural orthostatic tachycardia syndrome https://connect.mayoclinic.org/discussion/pots-postural-orthostatic-tachycardia-syndrome/
– I have symptoms similar to POTS but was told it isn’t POTS https://connect.mayoclinic.org/discussion/i-have-symptoms-similar-to-pots-but-was-told-it-isnt-pots/

Azurite, I'm glad that you're getting better at dealing with the lightheadedness during the day. Can you share what has helped you? What strategies have you tried to calm you to be able to sleep?

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I’ve found that my lightheadedness is worse when I am sitting fully upright, feet to the floor, in a chair for too long. I try to have more of a graduated posture with my legs up a bit more. I live in Phoenix and the summer heat has been a huge trigger, so I now know I can’t tolerate anything outside. It’s a 6 month-year wait for me to be seen by the POTS specialist here at Mayo Phoenix, so on my own I’ve been trying to increase salt, increase fluids (w/ Nuun hydration), do stretches, but every time I feel like I’m improving, I have huge setbacks with symptoms. This week I’ve had episodes of chest tightness and difficulty breathing, in addition to more episodes of weird heart palpitations.
My “attacks” at night typically happen an hour or two after I first fall asleep, and sometimes I have mini-episodes as I’m trying to fall asleep. It’s like my body and brain are broken, almost like it’s freaking out about going from a day of activity to now fully lying down at rest. Talking with my psychologist has been helpful in reducing anxiety about bedtime, trying to create different good associations with the space. It’s helpful knowing I have Xanax on hand if needed, but I find an “attack” can come on regardless of how calm I am at bedtime, regardless of how “good” the prior day was.

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