Does Everyone With Dysautonomia/pots Have Anxiety?

[Guest Hanice]

If you don't (without anxiety meds) please say so. This is really interesting.

[Katybug]

I don't experience anxiety. In fact, I was misdiagnosed with anxiety prior to figuring out it was pots and when we tried anxiety meds they made me worse. That's one of the things that made me push my pcp t look further into my issues. When my GI saw an acute pots episode with me in his office, he called my pcp and told him what he saw was no anxiety attack and I needed a cardiac and neuro workup asap. I have features that probably seem anxiety like to others but I now realize they are the same reactions a healthy individual would have just amplified by a malfunctioning nervous system. For example, if I trip, my heart doesn't just do a couple extra beats and then it's over, my heart does a dance in fight or flight mode from tripping for about a half an hour. My mind is calm, but my body overreacts and then takes longer to get it back together.

[issie]

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[Chaos]

Similar to Katie, I don't have anxiety. Was misdiagnosed with it early on and anxiety meds made me sick. My body reacts like it's having an anxiety reaction, but my mind doesn't feel anxious at all. I'd wake up at night with what I now know were adrenaline rushes, but they were categorized earlier as "panic attacks". My body was doing it's "fight or flight" thing, but my mind wasn't terribly disturbed or anything.

I think there is actually research that has been done which shows that when patients with dysautonomia were tested for anxiety and the physical symptoms were attributed to their proper cause, the dysautonomia patients actually had less anxiety than the general population. Because so many of our symptoms are controlled by the same neurotransmitters that cause both emotional and physical symptoms, it's sometimes hard to separate them out.

[jesse1919]

Some call POTS "tired wired". I feel exhausted all the time and physically jumpy. Like if I get startled, my heart races, get light headed and it takes a lot longer for my body to relax then it did before I got POTS. But it's not mental. In my head I talk to my heart like "dude relax it was just a car horn". Personally I only get adrenaline surges like Chaos said if something triggers them. But if there is something I'm anxious about it makes the fatigue worst. So I need to be in a Zen place and relax as much as possible.

[kayjay]

I don't have anxiety. When my blood pressure is excessively high I do feel anxious. The anxiety does not happen first. I have never been diagnosed with anxiety.

[AshleyPooh]

My doctor tried to say that i was having anxiety, before I explained my blood pressure problems to her. I refused to believe it was just anxiety, because I didn't have a whole lot to be anxious about, and didn't feel anxious until something startled me or i had adrenaline rushes. After we found out I had dysautonomia, I knew that my nervous system was like a megaphone: everything gets amplified. Startled? Most people shrug it off. my body starts banging the war drums and wondering where the home intruder is!

[westernmass]

I don't.

[ask2266]

I have always had anxiety, even before all my health problems. I never had panic attacks or anything like that, but I would get stressed out about stuff very easily. I would freak out in traffic and get frustrated with my husband very easily. I feel like I never handled stress well.

After my recent experience with earthing, I now believe that my anxiety has always been caused by maladaptive and malfunctioning adrenal glands. My anxiety has vanished since I started earthing 2 weeks ago. Before this, I always assumed that my anxiety was part of my personality, but now I think my body was physically sick and that is what created the anxiety, similarly to people who are not anxious but feel that anxiety feeling from POTs.

[MomtoGiuliana]

As Issie said, I believe that for some of us, at least, we interpret some of our symptoms as anxiety. When our doctors do as well it confirms that in our minds. I think it can create a negative feedback loop in fact, for some of us. I know many POTS patients say they have not felt anxiety, so it definitely is not everyone. But I can say that initially for me, particularly prior to diagnosis, feelings of panic were part of my symptoms--I would experience random "adrenaline rushes" (for lack of a better term--I think that is what I was having). My hr would speed up, I would have tremors, etc. I just did not understand where they were orginating b/c typically I am a calm person, I had no trauma or severe stress in my life, and this was very uncharacteristic for me. My GP had me so convinced that I had an anxiety disorder that I finally went to a psychologist. When I described my life, my feeling and symptoms she pretty quickly concluded I had something physical going on that needed to be identified. Anyway, hope this helps!

[Guest Alex]

I am not an anxious or a depressed person - quite the opposite. My drs thought otherwise though and I've been prescribed several anti anxiety and anti depression meds in the past two years (ativan, klonopin, celexa, lexapro). The meds only made me worse, and I'm glad I was able to wean myself off them. I've also seen 2 psychologists (this was before my POTS diagnosis) and one psychiatrist. The psychiatrist was the one who recommended the klonopin, while the psychologists were just happy to take my $ and provided no real answers - they were very good listeners though One of the two psychologists was a family doctor before changing careers and was honest enough to tell me that my problems were not exactly of her competence and that I should not stop my quest for real answers.

Oh, and I do have a wonderful neurologist who offered this piece of wisdom - "as a doctor, I would diagnose someone with anxiety only after I've eliminated all other possible causes for the symptoms" (not his exact words, but something along those lines).

Alex

[looneymom]

You know I think this comes along with this diagnosis, but it really shouldn't. My son has low blood pressure and one of the nurses made the comment to me that it's kinda hard to diagnosis anxiety with low blood pressure. However, my son is on Zoloft. I never wanted him on this medication but I blame this on POTS. When you have symptoms that don't respond to medication and keep exercising to get your strength back and see very little progress. It would be hard not to get discouraged and depressed. My son was never on medication for depression until POTS came along.

[MomtoGiuliana]

SSRI's do seem to help many people with POTS symptoms. It has nothing to do with treating depression/anxiety, from what I understand, but somehow SSRI's "calm"/"re-balance" the nervous system. I am not sure it is well-understood. But it was my EP who put me on an SSRI after diagnosing me with POTS. He did not think I was anxious or depressed. However, I do agree that having a chronic illness in itself can certainly cause depression and anxiety.

[Guest Hanice]

My current doctor doesn't know crapp, he wouldnt know about ssri.. I am scared of taking meds anyways. But ssri doesn't sound too bad. I dont have depression even though very rarely I do get a little blue which is understandable. Would ssri stop muscle spasms?

[bellgirl]

Adrenaline surges,Tachycardia that leads your body to have a physiological anxiety. It's not the same thing as an anxiety disorder, but many of us are on medications for anxiety, because it helps our nervous system stay calm. I'm actually on it, because I can't sleep otherwise. My doctor explains it like this...you need something to shut off your brain at night. I also have sleep apnea, which exacerbates the problem. I had several times, where I had trouble breathing, even while I was awake without medication, but it passes. Beta blockers and anti-anxiety meds help immensely with this, but some can't tolerate them. I've been on the same meds for 2 years, and I am so much better.

[s-pot]

I do not consider myself to be an anxious person or suffer from anxiety. However in the past this is something that I was 'labelled' with and it was certainly a label I took on board and began to believe about myself I heard it so often! It was the classic medical fob off (age 16) that I, my parents and others bought. I suffered for this greatly over the years, believing that my symptoms were 'all in my head'. I have had most psychiatric medications thrown at me at different points and suffered the physical consequences of these medications throughout the years.

Now a few more years down the line I KNOW my personality/charachter and general outlook is not one of someone who suffers from anxiety. I am around family members fairly often who suffer anxiety disorders...it is not something I can completely identify with.

However I would definately say any anxiety I do suffer from arises directly from the worry/distress in dealing with this long term chronic illness. The constancy of not being believed/listened to, the regular illness and feeling really rotten alot of the time, having the things I KNOW could be affecting me healthwise dismissed as 'incidental findings' and having my life regularly ground to a halt by it despite all the good/right things I try to do to help myself is hugely frustrating and certainly at times dips me into a mild depression.

I think my anxiety levels tend to start to rise when I start to feel my body take the steady slope downward.....its a fight between body and mind. My body starts failing and my mind fights to keep my head above water. My anxiety levels rise as I try to keep everything going and keep control until i have to give in to the weakness again and take to the couch.

At present I am attempting to come back from a bad relapse. This time Instead of looking at it as 'having to be off sick' I have chosen to give myself the gift of time and 'taking myself off the hook' for a period of 3 months. Walking regularly, chilling out, nice music/books, taking a course in mindfullness, learning to play the guitar and what ever else comes up. I am chosing to not 'have to' work in my stressful job during this time....even if I become well enough to go back and am trusting I will get by financially somehow in that time!!

I am hopeful that by giving myself this time to restore my physical, mental an emotional health, that has been driven down by POTS over the last couple of months, I will be in a much stronger position to maintain my health for longer instead of repeating the same cycles.

SO god love any doctor who attempts to tell me my symptoms are anxiety related ....Ill be filling them in on the above list!

My new response to any doctor who fobs me off with the anxiety label is to tell them I will accept their diagnoses after they hook me up to a holter and then come back to me with medical papers/definitions for Postural Anxiety Disorder....cause looking at my holters I am a perfectly calm, serene and stress free individual as long as im sitting down

[Akgirl]

I wish I could say I have no anxiety. But wow I feel like mine is getting worse by the day! I am on celexa 20mg but I am going to see about upping it to 40 mg.

[Enid]

Surge - yes, anxiety - no. Once, I was having a bad episode (had discontinued my iron pills + had been standing during break of a conference...) Had to go run errands during lunch break and while driving had tachy ++, could not catch my breath and felt like my whole body was jittery. MY GP's office was in the mall where I was and I had to find a place to lie down so I ducked into her office to lie down on her exam table.... While trying to stop the surge and get my heart rate down, I asked her, calmly, "is this a panic attack" She replied...if you are asking me that question in such a rationale way, this is not anxiety.

I also used to often get symptoms in the morning after driving to work, I would walk from the parking lot then stand to wait for the elevator. While standing still, my HR would go up, and again with the feeling like my insides were shaking. I remember (pre diagnosis of POTS) explaining to my colleagues, again, in this rationale way trying to explain the weird sensations I was having " maybe this is a work burnout - I like my job, look forward to coming here but everyday at the elevator it's like my body does not want to go up" LOL - once I got the tilt table test and Dx, it all made sense!

[Akgirl]

Wow Enid, after reading that maybe I don't have it and its just tachy. I get a jittery feeling and a tight chest and a tension headache. And a icky bellyache, that I think of as anxiety. But my mind does not race, but sometimes i will get sweaty and feel overwhelmed. And I usually get a hoarse voice. When I get tachycardia I feel my heart racing and my chest hurts and I get very pale and cold extremities I also feel like I am going to puke ect.

[Hope]

I have some anxiety, or what feels like anxiety. Anti anxiety meds make me worse though, at least the ones I've tried. They will put me into actual panic attacks for what seems like no apparent reason, like standing at the sink doing my dishes minding my own business, then BAM! I'm freaking out. This only happens when I take anxiety meds. The reason I tried them is because I sometimes feel too uptight and it's hard to calm down. My beta blocker seems to do an ok job at keeping me calm most of the time, but sometimes it's just not enough.

[Guest Hanice]

Thank you all so much for replying. I love it when people take their time to reply to my posts. I am very shocked at how many of you don't have anxiety. And thanks for replying from both sides. I would THINK that everyone with dysautonomia felt super anxious or panicky because of the out-of-wack ANS. Love you guys. Take care. ♥

[imre]

Not sure if I have anxiety, but stressful situations definitely exacerbate my symptoms.

[Racer]

I get those anxiety like feelings, like has been explained. They tend to happen for no apparent reason. While my anxiety usually has triggers, or is situational, like social situations, being in large crowds, etc. Although sometimes I just skip the anxiety and go into a full blown panic attack. I have some ptsd, so in my case I know it is anxiety

[lynnie22]

Over the past few months as my POTS symptoms got worse, I couldn't understand why I was having all these "fight or flight" feelings out of nowhere -- like my heart racing more, trembling, chest tightness, panic, blood pressure that would suddenly soar. Doctors thought I had become very anxious, but I knew nothing in my life had changed to make that true -- and it felt so physical. It took time and being on this forum for me to realize that most of it is caused by my nervous system. I can feel it happening -- this trembling followed by the rest. Now for me an anti anxiety drug does help when I'm feeling like that -- it calms everything down some. But ironically beta blockers, although they certainly help my tachycardia, seem to worsen the 'anxious feelings'. I am an anxious person, but being anxious and feeling these 'surges' are very different. The surges seem to just come over me and as I'm shaking and at its mercy, there's nothing I can do about it. I can be calm or anxious about it while it's happening, but that's something separate, if that makes any sense.

[lynnie22]

I just wanted to add that I FEEL what seems like anxiety so often, and it has been very hard to differentiate between what feels like anxiety from what is induced by my nervous system. I have begun to realize that most of what I feel is really physical and often I react to it with anxiety because it scares but there is a part of this that makes me oversensitive to any stimulation and that I think is a POTS response. Just trying not to sound contradictory. Hard really to explain the difference but I guess I have both.