Anxiety

[Guest GayleP]

Does anyone else experience anxiety over their symtoms? I've had bouts of anxiety through the years since I've been diagnosed, although sometimes I can go months without feeling it. It usually crops up again when I get new or worse symtoms.

I've had some recent episodes of tachycardia while at rest ,higher than usual BP spikes and more PVC's. I've been wearing an event monitor and so far my cardiologist isn't concerned. He says while the tachy may feel uncomfortable it isn't anything to worry about because I'm in a normal sinus rhythm. He's also not concerned about the BP spikes.

I've dealt with dysautonomia for a while, am an old pro when it comes to PVC's and have worn several event monitors in the past so I'm not sure why I'm more anxious this time around. Last week for the first time, the monitor went off on it's own and started beeping meaning it detected someting serious enough for me to call in. Turns out it was nothing but I was absolutely freaked out.. I contacted my cardiologist and asked them to look at the reading ASAP because I didn't believe the techs at monitoring place when they told me it was nothing

I can tell my cardiologist and his nurse are getting a little irritated by my anxiety. I have my yearly follow up appointment with him which we bumped up to next week and I'm a little embarrassed to see him now. I think some anxiety over this stuff is normal but I'm not sure he gets that. I don't know if I should aopolgize for the anxiety or at least try to explain to him why I'm feeling anxious?

[janiedelite]

Last summer I was at my primary care doc's for an appointment. I only recently was seen by a specialist at Mayo, so last year I was either in her office or talking with her on the phone monthly, bewildered about the crazy variety of symptoms I was having. She was always extremely understanding. I told her it I have never been an anxious person before, but that now it felt like my "fight or flight" nervous system was on overdrive. Now we know it's due to elevated catecholamines (my norepinephrine level on standing is over 1000). But she had the sense even last year to attribute my anxiety to dysautonomia. I never asked for antianxiety meds, although I take a little vicodin once in awhile for my small fiber neuropathy.

When I saw the doc at Mayo one of my diagnoses was "secondary anxiety." I was a little mad at first when he put that on my chart but then I realized that he was stating that the anxiety was SECONDARY to the OI (caused by the POTS). Treating the POTS should help the anxiety, and he was right.

As I've become more disabled over the past 3 years, I have struggled with anxiety at times because I feel so helpless. Most days I can't drive, crowded stores/restaurants make me feel dizzy/wierd, etc.

I've seen many specialists in the last couple years, and a couple of them treated me as if most of my problems were "in my head." I never saw those docs again. I just try to be straight-forward and honest about my symptoms and how they affect my life. Your doctors are here to HELP YOU. They get paid to do that. He gave you the event monitor so that he can be aware of your symptoms and how to treat you. You have to advocate for yourself. I'm sorry that he and his nurse seem to be irritated, but maybe you need to clarify with him what events need to be called in??? Either way, they're here to help you.

[EarthMother]

My therapist has concluded that I have = Anxiety Disorder Due to a General Medical Condition -- POTS. Which is consistent with what other therapists have said in the past, including a couple psychiatrists whom some of my more annoying doctors at the time insisted I go see. BTW the psychiatrist also recommended finding a new primary doctor (that was more than 10 years ago and I have since found a keeper!) LOL

This past summer I was in a deep POTS hole and the panic disorder was at an all time high. Even getting to my cardiologist was a major challenge. But once I was there, he was able to reassure me that the increase in PVCs and some of the other strange symptoms were still "normal" and more over he explained what he believed to be a hyperadrengeric phase of POTS. I was still shaking and very tachy ... but at least I didn't feel like a complete nutcase when I left his office.

I'm not inclined to apologize for my anxiety (other than to my husband on a regular basis for making his life so difficult) -- not to my doctors. These symptoms ARE difficult and they should understand the impact it has on our lives. I am fortunate to have a team of specialists who understand and do not try and push a pharamcological approach which has not agreed with my own bio-chemistry in the past.

My cardio also suggested that as I am in my mid 40's, it could be that the combination of POTS and perimenapause could be making things more difficult than in the past.

Good luck getting answers that you want and the respect that you deserve from your health care team!

[Guest GayleP]

Thank you both for your replies. I would imagine some anxiety is to be expected with any chronic illness, especially one that affects our nervous systems. I'm afraid to let my doctors know when I'm anxious because I don't want them to minimize my symptoms or blame them on the anxiety. LOL, on the other hand, I also feel I have a right to be anxious sometimes and that it's not the of the end world if I am. They should be able to handle anxious patients.

[Guest tearose]

The ONLY symptom that brings on anxiety in me is when I realize I have lost memory.

It makes me feel irresponsible and stupid.

I then do self talk and tell myself that lack of restorative sleep does this. I have bladder issues and must get up two or three times a night to pee. There is no way I can take a medicine since I have lymphedema too and must void as my body needs.

I have had to make accommodations for my lost ability to retain information. I try to write things down more and try to use memory games...Here I am a professional administrator and I can't remember facts about things I use to have command over.

Lack of sleep and then pushing on the next day as though I am fine is a problem. Who wants to hear that you can't be somewhere or do something because of poor sleep? It is worse when I physically get to my planned meeting and then mentally can't retain or respond as I should.

tearose

[lloppyllama]

I am like tearose, I dont get anxious about my physical symptoms, but when I cant think due to brain fog I get very anxious and feel like I am being wasteful and that I am a failure. I have a good doctor who reassures me that it is ok to have anxiety, I have a lot to deal with, and set high standards for myself, so it is normal that I would feel anxious about things. Right now I am looking into finding a good counselor/psychiatrist to work with.

I do not think that you need to apologize for your anxiety, it is natural to feel that with all you are dealing with, and you shouldn't feel like you are wrong for getting anxious about things.

I hope your appointment goes well! And try not to worry about what your doctor thinks of you, you shouldn't let other people's judgment worry you, as it isn't their place to judge you anyhow.

-Mary

[babettess]

Hi Gayle,

I too have anxiety that I feel is caused by what feels like my "fight or flight" mechanisms being on overdrive. My anxiety always starts with physical sensations and then the fight or flight kicks in and off I go....into what doctors call a panic attack and I call a POTS attack.

You are not alone in this.

I would not apologize for the anxiety but I would explain it to your doctor as he can only help what he knows about and he needs to know about everything so he can see the "big" picture of how this affecting you.

Best wishes for a productive visit when you see the doctor.

Babette

[Poohbear]

Is there anything you could take (or increase the dosage of) on a short term basis to see if it helps with the anxiety? Sometimes people find if they can get their body to rest and not stay in the fight or flight response then everything else will calm down.

I wouldn't apologize to the Dr' for being anxious but I would try to explain where I was coming from and ask for his input on treatment options.

I know it's scary when your heart is racing and doing things you are not used to but try to take comfort in the fact that the Dr is telling you it's normal sinus rhythm. Are you on a bb? You may want to consider asking about trying a tiny dose of a short acting bb---I say short acting because I know you have bp drops and slow heart rate sometimes too so the nice thing about a short acting bb is that it wouldn't stay in your system long. You might could try taking it midday and see if you get a better balance to the day that way.

I hope you get to feeling much better soon and that the anxiety will abate!!!!

[morgan617]

The last time I saw my primary, about 6 months ago, I was telling him for the millionth time I was sick of feeling guilty for feeling sick. I was lying in an ER while the staff stood outside my curtain, to make sure my hubby and I could hear them, make fun of my apparent "psychotic break." The doctor told me I was the most anxious person she had ever had in her ER. I never called them once, we didn't let them know when I was having problems, I wasn't hysterical, I had to get my pace maker adjusted, and felt better, but even the pacer tech was in on it. After admitting I was having zillions of arrythmias. It was so humiliating, I wanted to find a sharp object and let them know how I really felt. Trust me, it wasn't "anxious." According to them I was the reason ativan was invented.

My primary schooched his chair close to me and got right in my face and said..."I wish they had to walk a mile in your panties sweetheart." Talk about validating. he said we are so past psych stuff at this point. We do not owe anyone apologies for any way we feel, whether it's sick or anxious and no one, I mean no one has the right to disrespect you no matter what they think or feel. My hubs says the more I try to defend myself, the worse they get. So, I just don't say anything anymore. I won't give them the satisfaction.

I had to go see the cardio after that for a follow up and I did tell him that neither he, his staff, nor his pacer techs had the right to embarrass or humiliate people for things they couldn't even begin to comprehend and the day would come when they would be the vulnerable ones lying there in a crappy gown on a rock hard stretcher, wondering what was going on, while being ignored, and I hoped they were treated better than they treat their patients. His faced turned red and he actually apologized. I have no idea if he was sincere, but I do know he at least got my point.

But that's just my jaded self. It's like having a baby sweetie. Until you've gone through labor, you will never get how it feels. But it doesn't mean you have the right to lack any empathy for their pain. That's how many of these people are. And I guess their day will come and I do hope they are shown more compassion than most of us have been. You have to do whatever you feel you need to with your cardio, but you shouldn't have to explain "fight or flight." That's MD 101. Whatever you decide, I hope it goes well. morgan

[calypso]

I was diagnosed with anxiety/panic disorder when I was 18. I did not develop POTS until I was nearly 27. I am sure that my body's genetic makeup is such that I am predisposed to both. I consider it a great accomplishment that I have not been in an ER, ambulance or urgent care clinic in the last four years, and it's mainly because I have learned to talk myself out of freaking out every time I get a POTS attack or symptom.

I do take clonazepam on occasion to calm down. I do not consider myself dependent on it. However, it's nice to know it works a bit when I need it. I hate that my body responds to situations before I even have time to think about what's happening. My heart rate will skyrocket and my heart will start pounding; I'll turn hot and red; and I will get all clammy/sweaty every time I perceive some sort of threat, or bad news. Sometimes it's when I am opening an envelope with a blood test result, or when one of my kids gets hurt or is sick, or when I am having a POTS attack. I have been reading a lot on this topic and have found a few books lately that focus on retraining your brain to respond differently to "bad" situations. "Train Your Brain, Change Your Mind" by Sharon Begley is one; another is "Blink" by Malcolm Gladwell (which is more about how the brain works to make snap judgments on a subconscious level).

Anyway, the answer is yes, I have anxiety, too, and it's hard to separate from the POTS. But I know I have it because it was there first.

[vemee]

I did not have anxiety until I was treated with antidepressants. However, I did have periods of irritability where looking back were probably the fight or flight syndrome leaning on the fight side. My standing norepinephrine is over 2000 so I am getting a good dose of it. My biggest problem was that the antidepressants I was given are designed to increase norepinephrine. My daughter also has pots and has a lot of anxiety ( we are seeing a geneticist next week). Has anyone tried clonidine ? It is suppose to reduce norepinephrine but I have not had any luck getting my doctors to prescribe it.

[carinara]

Ok, i wrote before, that i suffered from ANS Symptoms for more then 20 years before i got diagnosed in 2007.

I went through very bad POTS flare ups in 2000, 2004 and 2007 that left me being bedridden for a few weeks +

I wasnt able to work for 4 months each time. When my doctor + all the other doctors he send me to, couldnt find anything wrong with me, he decided i must have a panic or anxiety disorder. In 2004 just after the bedridden time was almost over and i could stand for at least 1 Minute, i changed my doctor and found a very nice new one who was willing to listend and understand my condition. At that time, i slowly started to work again and tried to get through the day With lots of adjustments and difficulties. Everytime i went to see her (about 2 times a year) she asked me how i was feeling, and i told her, that i feel a little better but that i still have lots of symptoms every day. Well that went on for almost 3 years. She always told me that she thinks i manage very well and she always let me know, that she really likes my positive way of thinking.(Thats was all before i got diagnosed with POTS in 2007). Sometimes i told her about my previous doctor telling me, that my symptoms are due to anxiety or panic and i also said, that i honestly believe that there is something else going on.

I told her, that i only get anxious when my body goes crazy. If i feel ok, i never get anxious.

After my body got more into balance again, i always looked back and remebered how anxious i felt during

Them flare ups in 2000 and 2004.

Then the latest flare up in 2007 occured. I went to see my doctor and told her about my poor health. The first thing i said was: I can feel that i start getting sicker again, but i am not scared yet, the symptoms doesnt cause me to have anxiety or panic yet. I told her, that i can see my body acting out of order and i can watch it come and go, without any emotional reactions.

Within 2 weeks it got worse and worse, i had very bad tachy, i wasnt able to stand up and walk to the toilet. At one point my HR was so fast and loud, my boyfriend heard it when he sat next to me, he didnt know if he should ring the ambulance or not. My doctor came to see me, and i said that i think something major is wrong, but iam not scared yet, i can still watch it come and got without any emotional Reactions.

A few days later i had them ?fits? almost every day. When i called my doctor (this was still before i was diagnosed)

I told her about these strange episodes that seems to come every day now, even whilest laying down and about all the other new symtoms. I then told her, that i can feel the anxiety creeping in now but that i can still manage.

After this went on for a week, i told her that iam anxious now, i told her, that i cant stay at home alone anymore

because iam so anxious and panicky because i dont know what to do and react when these episodes start.

She then turned around and said,: Well thats ok, everybody would be scared if they would experience these kinds of symptoms.

A few weeks after that i got diagnosed.

It took another few month for my body to get back to some kind of balance. Even though i am symptomatic every single day , i dont panick anymore because I now know what iam dealing with , and i know this is not going to kill me. (Where as before, i didnt know what it was),

But if i ever get a bad flare up like the past 3 times. I KNOW, that my anxiety will come back again.

I believe that every human being on this earth would get anxious if they would experience these kinds of symptoms.

Even though i meditate an take great strenght out of my ?religion? that help me every day.

I know that if my body ever gets totally out of control like before, i will slowly fall into being anxoius again.

This feeling will stay with me for month until my body gets more under control and i feel i can trust my body more again. Then it will slowly dissapear again (thats how it was with me for the past 9 years anyway)

All the best

carinara

[Rene S.]

My therapist has concluded that I have = Anxiety Disorder Due to a General Medical Condition -- POTS. Which is consistent with what other therapists have said in the past, including a couple psychiatrists whom some of my more annoying doctors at the time insisted I go see. BTW the psychiatrist also recommended finding a new primary doctor (that was more than 10 years ago and I have since found a keeper!) LOL

This past summer I was in a deep POTS hole and the panic disorder was at an all time high. Even getting to my cardiologist was a major challenge. But once I was there, he was able to reassure me that the increase in PVCs and some of the other strange symptoms were still "normal" and more over he explained what he believed to be a hyperadrengeric phase of POTS. I was still shaking and very tachy ... but at least I didn't feel like a complete nutcase when I left his office.

I'm not inclined to apologize for my anxiety (other than to my husband on a regular basis for making his life so difficult) -- not to my doctors. These symptoms ARE difficult and they should understand the impact it has on our lives. I am fortunate to have a team of specialists who understand and do not try and push a pharamcological approach which has not agreed with my own bio-chemistry in the past.

My cardio also suggested that as I am in my mid 40's, it could be that the combination of POTS and perimenapause could be making things more difficult than in the past.

Good luck getting answers that you want and the respect that you deserve from your health care team!

Hi EarthMother,

I just had to respond to your response. You sound like me! I can so relate. Right now, after just going through a divorce moving and the lilfe changes, I'm beside myself with anxiety. Getting to drs appts has become a challenge for me as well. I get in the car and my heart feels like it's going to explode! A year ago I wouldn't have thought two seconds to drive anywhere. As you, I'm tired of having to explain, apologize or defend myself to friends. I cannot simply just snap out of it! I even asked my therapist yesterday (I was proud I drove and am paying for it today!) for a note to show my friends that says "Rene has been traumatized by her life situation", which basically means leave me alone! Pushing me is not going to make me better. Telling me to get over "it" won't help. Our bodies wiring has gone haywire and we shouldn't have to be defensive about it.

You are so fortunate to have a great medical team. My drs think it's just anxiety and have tried various A/Ds to no avail. I'm so sensitive to meds and it's not something that I'm making up!

Thanks for listening and being part of this cause.

Rene

[Guest GayleP]

I believe that every human being on this earth would get anxious if they would experience these kinds of symptoms.

Bingo. That about sums it up.

I know my anxiety gets a lot worse when my symptoms change or get worse. And then of course the anxiety mkes my symptoms even worse and it becomes a nasty cycle that I can't get out of.

I appreciate all of your replies and I'm sorry so many of you also suffer from anxiety which is secondary to your dysautonomia. I sometimes think the anxiety can be as bad as the dysautonomia.

[ramakentesh]

POTS has many causes and some do not result in the same amount of sympathetic overactivity as others do. Just becaues you dont experince anxiety as a symptom doesnt mean others dont.

I certainly do but ONLY when my symptoms are bad.

Some POTS patients experience a symptom where they body attempts to re-regulate their circulation specifically through the carotid arteries by shooting off massive amounts of adrenaline/epinephrine which ofcourse results in anxiety and the flight or flight response. This has been documented at the Baker Institute.

Dr Julian Stewart believes that all patients experience some increase in anxiety or at least become 'hyper-vigilant' at the onset of their symptoms. He believes NO and angiotensin II imbalances cause overactivity of this system resulting in anxiety.

if you read the research all the data is in there.