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puppylove
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I know on the lists of symptoms for POTS anxiety is one of them, and I was wondering what "kinds" everyone has if any. I still need to get a therapist and I was recommended to go on some kind of ssri but I haven't yet because I'm still waiting for an appointment with my cardio where I will talk with him about it. Anyways, the kinds I have been told I have over the years before POTS is GAD and social anxiety. Also, I have emetephobia (fear of vomiting). I feel kind of alone with these anxiety problems and I was wondering if others experienced anything similar/ what helped you if you did? Thanks! :)

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After I had my ingrown toenails removed (the doctor used epinephrine), I started having horrible Panic attacks and panic disorder. It took me over 6 months to get it under control enough to be able to leave the house. I take Celexa 40mg, which has helped a lot. I also found out my vitamin d was very low and it helped my anxiety a lot when I started taking supplements. I still struggle with some anxiey, but at least the panic attacks are under control. I think a lot of POTSies have anxiety issues, a lot of them I think are just due to having such an unpredictable chronic illness and I think some of it could be due to our messed up sympathetic/parasympathetic nervous systems.

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before POTS arrived the only thing that made me in any way anxious was stage fright. Otherwise I was reknowned among my friends as being unusually easy going and actually pretty reckless in some ways.

Once POTS arrived I found myself finding that if something stressed me my body way over-reacted to it all the time and Id spend more time trying to calm my body down than to deal with the stress.

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Rama- that sounds a lot like me. When I was a younger kid I was so easy going and now sometimes just taking a shower sends me in to panic mode. My vitamin d was really low so I'm taking more. Thanks for responding guys! :)

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before POTS arrived the only thing that made me in any way anxious was stage fright. Otherwise I was reknowned among my friends as being unusually easy going and actually pretty reckless in some ways.

Once POTS arrived I found myself finding that if something stressed me my body way over-reacted to it all the time and Id spend more time trying to calm my body down than to deal with the stress.

Me too Rama!!! I was quite the adenalin junkie (coincidence?), and now even the slightest stimulous sends me into adrenal overdrive - but I dont think its anxiety per say (at least mental based), I think its my ANS out of whack. And Puppylove, I think it's totally normal and great you are seeking treatment. In my opinion though, I think much of what you are feeling may be related to your ANS malfunctioning. Conside rreading and printing this letter to the edidor by Dr Blitshteyn (with 4 links to other related studies) to bring to your appoinments.

Postural tachycardia syndrome and anxiety disorders

  • Svetlana Blitshteyn, Clinical Assistant Professor of Neurology

I also think that I, and others, have PTSD. We have rational fears of various health related things because we go through heck dealing with this illness. Its a wonder we aren't all in the psych ward, we are (and YOU ARE TOO!) a tough group of patients. I get very upset when I start to pass out because I'm scared, and I'm ok with that. I take medicine to help with both, Klonopin calms my adrenaline in general and helps with any mental anxiety without side effects for me. As a teen, in my opinion, another non-benzo may be a better start - but I tried them all and had terrible reactions.

Anyways, stay strong and remember that it is not all in your head!!! The same system that causes panic attacks and anxiety is the system that is wacky in us!!! :wub:

Claire

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I had GAD and panic disorder as a teenager that was caused by weaning too quickly off of Wellbutrin. I was anxiety free for about 4 years and then the pots hit and it has come back some I believe that there is an anxiety component to pots because of the over active SNS and I also think it makes any underlying anxiety worse for that same reason. We are all extremely hyper vigilant - constantly researching, obsessing, checking vitals, going to new doctors, etc. these are all indicators of massive anxiety. I do believe that this has an organic cause and is related to the NE levels. I think a lot of us with this illness also wrongly write off anxiety and think that every symptom is a "pots attack" when in reality what we are experiencing is a panic attack. Having lived with panic attacks for years and I went to graduate school for clinical psychology, I feel like I have a good handle on my anxiety and I'm able to tell what is coming from the SNS and what is not. I thInk a lot of other potsies would benefit from accepting the anxiety that comes with pots more, and try to decrease their hyper vigilance. Just my opinion :)

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PuppyLove- First of all you are not alone... I went through Anxiety and Panic too. Also depression. But it would send me into panic just taking a shower alone in the house or being alone in the house at all. I actually recently got a kitten and believe it or not it really has helped calm me down a little. My mom works full time and is gone all day so it is nice to have a friend around (my kitten) ^_^ Thats just me though idk if it works for others. Also looking back some time I was on a ssri and did not have a good experience. I would recommend talking to a therapist first they are really good in helping you cope w/out meds and can also tell you if they think you should talk to a psychologist. It is just something to consider b4 going on psychiatric meds (they can have really bad side effects sometimes, but they can also be good if you really need them). I have a therapist who is amazing and I look foward to going to every session with her :) I really hope things get better.

Hugs

~Kayla~

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Thanks Jangle; you have affirmed my physiological propensity with Mitral Valve Prolapse and hypertension...had my first major panic attack between Beta Blockers!! But I have always been an anxious person, and now I have a good reason to be, not to use it as a crutch, though. I take Klonopin, as well, and it makes a world of difference for me!! Thanks for the affirmation :)

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Hi Puppylove,

I think it is an easy label to say it is psychological. The cause is physiological as far as I am concerned so hang on to what you believe. Personally I don't think its helpful to think it has a psychological root if it hasn't. However there are thing we can do that help to keep the system as calm as possible like meditation etc.

I had terrible problems before christmas and within a hour of Fludrocortisne it started to lift so I know that is the case.

Claire, I too have wondered about PTSD - a psych doc friend said it seemed very similar. As mentioned above the trauma I went through before christmas was unbearable and it left a scar and imprint on me.

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I know that before I had POTS, I had one or two panic attacks (while pregnant). I never experienced it again until I got POTS, and there was a major difference between the pre-POTS version and the POTS version. The pre-POTS version was clearly psychological - I thought scary overwhelming thoughts and THEN, I experienced symptoms. Once I was hit with POTS, it was the opposite. I felt the symptoms without having had any anxiety-provoking thoughts beforehand. (Of course, the symptoms freaked me out, which didn't help things.) But that is not anxiety! That is physiological! When the doctor originally said it was anxiety - my gut reaction was that she was wrong - I wasn't in a psychologically vulnerable place at the time. It is the physical symptoms only.

I think you have to be aware of what order things are happening in to know if it is anxiety or your POTS.

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This is just something to think about guys- the DSM IV criteria for panic disorder includes that the attacks come "out of no where" and are not precipatated by any causal phsychological factors. The very definition of a panic attack is that it comes "out of the blue". You do not have to have any anxious thoughts beforehand to experience a panic attack. In fact, that is what is so scary about them and what leads to the never ending cycle of anxiety. Most of the anxiety people feel that experience panic attacks is not anxiety during an attack, but constant anxiety about a future attack, because they come on so unpredictably. I also agree with previous posters that the anxiety we experience is not caused by a psychological trigger. I agree with that 100%. The point is that it doesn't have to be. I absolutely think the culprit is the overactive sympathetic nervous system, via elevated NE, that triggers the anxiety in pots. This does not changes the fact that it is there. Also, so many are so quick to say "its not anxiety, i don't have anxiety,...." but what is wrong with having anxiety? I'm not saying pots is an anxiety disorder AT ALL. Pots is not psychological AT ALL. However pots DOES have anxiety as a component to this illness and we do experience panic attacks. In fact a "panic attack" and "adrenaline rush" are virtually undistinguishable and are IDENTICAL physiological phenomenon. Just some things to think about.

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kimbellgirl, did you find the Losartan helped with the anxiety at all?

The Losartan kept it at bay, indirectly by lowering my B/P, but then I would have hills and valleys of low and high blood pressure even on it. Now I'm on the highest dose with HCT, and on a beta blocker, too! My blood pressure is very low at night especially after I eat, but I am still wired, even at night sometimes. I think the Klonopin is what takes the edge off at night, frankly, and allows me to sleep; the Bystolic, BB, is what keeps my heart rate down, and prevents me from having major physiological panic attacks, which are scary, but nothing is worse than an asthma attack, because you really can't get any air with those, unless you have medication, which of course, I do. Unfortunately, I have asthma, and sleep apnea, too! I'm a literal mess, but honestly, I'm not worried anymore. I have a feeling that the chest pressure that we can all get on occasion is caused by blood pooling, because I coughed up frank blood at one time, before I was diagnosed, and I didn't have any respiratory problems at the time. At least my "Lung mass" wasn't TB...lol. I am doing all I can, and the rest is up to God :) He's the Only one who can give perfect peace, anyway...

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Julie, I totally agree with you, however, I found that if I told a doctor I had panic attacks along with my POTS, they would only latch onto my saying I have panic attacks and try to send me to a counselor (I've been to several counselors and psychologists, all of which said there was something physiologically wrong causing my panic attacks). While I agree that they were truly panic attacks, I found it easier not to call them that when I was at a doctor's appointment. It was usually better for me to say "adrenaline rush" or just to describe my symptoms so that they would actually run some tests and try to figure out what was causing the panic attacks.

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Also, when I told doctors I was having panic attacks, a lot of times they descredited my other symptoms that had nothing to do with anxiety. According to multiple doctors, I didn't have recurrent sinus infections (I have a SEVERELY deviated septum), vertigo, GERD, or multiple other issues, I just thought I had those issues because I was anxious. Partly, I've got to think those were just really lousy doctors to not have looked at my tests that proved that I had those issues, and to blame everything on my "anxiety".

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Also, when I told doctors I was having panic attacks, a lot of times they descredited my other symptoms that had nothing to do with anxiety. According to multiple doctors, I didn't have recurrent sinus infections (I have a SEVERELY deviated septum), vertigo, GERD, or multiple other issues, I just thought I had those issues because I was anxious. Partly, I've got to think those were just really lousy doctors to not have looked at my tests that proved that I had those issues, and to blame everything on my "anxiety".

I completely agree. I have also been to psychologists and psychiatrists to help deal with my anxiety and the psychologist actually argued with me that I don't have pots and that this is just panic disorder. I tried desperately to explain the differences and even offered to bring in my reports from my cardiologist. She was just so convinced it was just medical anxiety and not a real disorder. Of coarse she had nothing to say when I said have you ever heard of panic disorder being orthostatic? She later told me she thought I had a phobia of standing... LOL! Needless to say she no longer gets my $100 an hour. I wish there were psychologists that understand anxiety's ROLE in pots, instead of using anxiety as a cause of our symptoms. I know I could definitely use help in getting my hyper vigilance under control and I'm sure it woul help my pots...

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Julie... Did you REALLY just say that you had a psychiatrist tell you that you have a phobia of STANDING??? Did you really have someone say that to you???? You have got to tell me... How did you react??? What do you even say? That has got to be the most ridiculous thing I've ever heard. Is there even such a phobia? I am so sorry that had to waste your time and money and be insulted like that!!!

I get a LOT of anxiety and panic symptoms but I know they are related to my autonomic nervous system. I'm not at all implying there is anything wrong with having an anxiety or panic disorder alone- they are REAL conditions not taken nearly seriously enough by the medical community in my opinion. I never suffered from anxiety or panic attacks (I too also NEVER use that phrase with doctors- I always say adrenal surges and then I have to explain how they feel- which I have a patent answer that I always say) except sporadically through my life. But it is a miserable way to live and it bothers at how easily it gets dismissed. Why is severe anxiety or depression ( or any mental health disorder) any less important than any other medical condition? It can be just as debilitating and life threatening as any other. While I truly believe mine does originate with my ANS issues which I've had my whole life- I would have to say that that feeling of anxiety, the surges running through my body, the constant state of fight or fight is one of, if not the most, disabling of my symptoms.

Jen

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Hi Jenn, yes, she really said that to me . I actually felt really defeated by it and started to cry. I got myself together though and just told her I respectfully disagreed. In a way I don't blame her because until I got pots I probably wouldn't have understood this either. Also, her perspectives are coming from a psychological frame work so I'm sure it is really hard to see outside of that box. When I talk to doctors I also don't mention anxiety for the same reason as you. Instead I say "catecholamine surge" lol

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My first cardiologist told me several times that he thought I was "just a very anxious person". Um... I wasn't before all of this started three years ago. Then when I when I tried a third therapist every symptom I told her she said was due to anxiety. It's hard not to think it's in your head when your doctors tell you it is. Luckily, Dr. Abdullah knows it's not and he's my cardiologist now.

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Well, anyone who replied to this post and struggles with anxiety or any type of "surge/panic attack" whatever we call it, I am so sorry. I really hope the day comes when we won't have to anymore. As if it isn't bad enough to be stricken with all of the other physical symptoms (most of which don't seem to fit together at ALL- NO wonder it is so hard to diagnosis... and I agree Julie, before I had this condition I guess I would be skeptical as well... but I doubt I would EVER tell someone they had a phobia of standing when they were presenting me with records that proved orthostatic issues.. but who knows... I am actually in grad school for Marriage and Family Therapy so I can somewhat speak to that to a degree). And Puppylove... to be told you are an "anxious person"- that just annoys me. Did they KNOW you before this illness? I don't know how many doctors I have told.. "Ummm.. yeah... when I am fainting every time I stand up, can't catch my breath and my heart is beating at 180 bpm just because I tried to stand up... yeah I tend to get a little anxious. Why don't YOU TRY it and tell me how YOU feel?????" UGH

Julie, I am just so sorry that you were treated that way. I don't blame you for crying. I am sure it was mostly out of frustration and anger. Unfortunately, I can no longer count on TWO hands how many times I have broke down in tears in front of a doctor out of frustration, pain, and discouragement. My husband and I actually had made an appt. with a marriage counselor about a month ago to try to deal with some of the issues we are finding with dealing with my illness, on both of our parts. We have seen her before and she knows us well and understands our kind of complicated history (blended family- 6 kids total). And she hasn't seen us in several months and I had deteriorated quite a bit since and she just kept going back to WHAT was wrong with me.. while we were more interested in focusing on how this illness (or any) is causing issues. So after I explained it to her, she basically said that it sounded psychosomatic... and I assured her... No.. this is a real physiological disease... in fact I have three. And my husband told her that even the doctors at Mayo are confused about how to treat me and they put in her chart that she is a "Medical Enigma" which is something that we laugh about... how many people get labled by Mayo as that??? And she actually said... "Yes, that's what I mean. Maybe they think you are making it up and this is all in your head!" I have never been so insulted in my life. I wanted to just put her in her place, but all I could do initially was break into tears.... and luckily my husband came to my rescue and told her that I have been through enough that I didn't need someone who has no idea what she is talking about to make assumptions and accusations and she owed me an apology. And he grabbed my phone and I have an app on there that accesses my medical record- like appointments, test results, and diagnosis... and he pulled it up and showed it to her and to read my list of diagnosis listed- like autonomic neuropathy, immune mediated, autoimmune disease, connective tissue disorder, and the list goes on and on- and I do have depression and anxiety listed but both say "medically induced depressed and medically induced anxiety." And we left her office... but I was so insulted and upset. WHY do providers have to be like that? So Julie, as awful as that was, it don't think it compares to be told that I have "Standing Phobia". I guarantee you that I probably do have one if there is such a thing by now.. after so much syncope and concussions...and I still do have the same thing happen every time I stand, so I guess I probably do have standing phobia lol... but I just can't believe that she thought that would be a helpful statement. Ugh. I know there are wonderful, understanding doctors- I even have some of my own- but the ones that aren't sure leave an impression, don't they?

Jen

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I don't have general anxiety of anything but like you puppylove, I'm terrified of vomitting or being around people that have been sick and I have this weird blood pressure anxiety. Ever since I've had some bouts of hbp I feel panic everytime I have my bp taken. My dr wants to me retry midodrine and it freaks me out to think I'd have to take my bp daily

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My mom went to docs for over seven years before she was properly diagnosed with carcinoid syndrome. She was told she was depressed, in early menopause, anxious, etc. She was put on hormones, SSRI's (that couldn't have felt good when she had too much serotonin already), and wasn't taken seriously as she complained about flushing, diarrhea, fatigue, labile emotions (she's normally very calm). After seven years, her endo finally was shocked at her physical state and ordered a 5HIAA. She was in surgery the next week to removed her primary tumor.

There are diseases that produce anxiety as a result of the disease process, like carcinoid and POTS. But it's normal also to feel anxious, depressed, etc. at times when dealing with a chronic illness. Keep the people around you who believe in the wonderful person that you are and who want to help you gain strength and health.

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I've been told by my doctors NOT to call my POTS attacks anxiety. Yes, the mechanism is the same, but if I say anxiety, the doctors will latch onto it and not look for anything else. Anxiety, in my opinion, should only be diagnosed AFTER other condtions are ruled out - anything psychological should be a diagnosis of exclusion.

That said, if what I experienced were panic attacks, laying down wouldn't stop them. Taking the midodrine has reduced my "panic attacks" from 3-4 a week, sometimes multiple times a day, to 1 a month and they resolve in 15-30 minutes instead of 2-3 hours. Panic attacks wouldn't respond that way. I have had legit panic attacks - I'm also an emetophobe. Fastest way to make me panic is to have someone get sick near me. Those feel TOTALLY different than the POTS attacks.

I can't believe that someone would say you had a fear of standing! Over the years, I've been diagnosed with GAD, social anxiety (though I have no problem being up in front of 100+ people speaking, so I didn't understand that one), life transition disorder (which I think isn't even a real diagnosis - I happened to be 18ish when the POTS hit hard), etc, etc... Nothing ever stopped the "anxiety" EXCEPT treating the underlying BP issues. Doctors need to look for organic causes before they look for psychological ones! Otherwise they cause psychological problems instead of treat them.

Sara

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before being diagnosed with POTS I've been dismissed as having anxiety by a bunch of doctors: my family dr (who has never heard of POTS), a cardiologist, several ER doctors, a neurologist, an endocrinologist, plus 2 psychologists.

In all honesty, who wouldn't be anxious waking up in the middle of the night with a heart rate higher than 120, chest pain, left arm numbness, and the whole plethora of symptoms most of us "complain" about.

I do admit as having anxiety because of my health challenges, but less of it lately.

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