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The Psychological Impact Of Pots


Psychological impact of POTS  

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I definitely had (and sometimes still have) a particular kind of "panic attacks" which are very untypical for me, to say the least.

And in fact I was diagnosed with hyper pots last summer. But meanwhile I could arrange getting a skin biopsy done (took me 4,5 months to "convince" my docs...) and - I do have small fiber neuropathy in my legs. As a consequence, my diagnosis was changed to "neuropathic pots". My frequent hyperadrenergic states are purely reactive. However, they can lead me into these awful attacks of "panic".

Atm I am on a Betablocker (1,25 Bystolic) and on 4mg Diazepam as needed.

Believe me, you can get the "panic surges" down with meds!! And - as a first step of relief - you won't even need a very specialised pots doc for these kinds of meds! You don't have to suffer!!

All the best wishes!!

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I'm more afraid to be around people if I have any triggers that leave me susceptible to symptoms or problems. I used to be very active, now my whole world has turned upside down, and I'm afraid being around certain people in certain situations. It's embarrassing to pass out in public still for me, even when those who understand around me and can vouch that I'm okay, just need some time to recoupe. It's painful when they call the ambulance for me because I'm that far "gone" that I need the er or the hospital to get my body back under control.

For a person who worked 40 hours plus a week, was active in physical activities and social outings, being regulated to doctors appointments for the most part, really really hurts. Every time I try to pick up going to another outing in the week, sometimes it works, and sometimes it sets a flare off so bad that I have to give up. I do make myself go to church once a week, where I sit in the youth room above the auditorium for most of the time, feet up and laying on the couch. Only doing that do I seem to make it through that day, get to have lunch with my friends, and get to the grocery store, but sometimes even that's not enough.

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I was actually going to post something similar to this- especially in regards to the panic and anxiety. I had my first "real" nightmare last night since having POTS. It was pretty upsetting, but I woke up and nearly had a panic attack- even though I realized it had just been a dream. This nightmare and my reaction to it forced me out of bed several hours earlier that I would have chosen to get up, and it took me over a half an hour of prayer, Bible reading, and quiet relaxation before I was able to stop the tachycardia and panic that had set in. I have never been like that about dreams- not even when I was a young child. I can remember exactly one experience that was similar in nature, and the dream was much more upsetting than this one. I was wondering if anyone else had any reactions like this to dreams or other "upsetting" circumstances, and if the increased "fight or flight" response with POTS might come along with that.

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I get weepy when I panic. I can't stop crying, and I've had a lot of those moments as of late. Yesterday I did something odd... in one of my panic/upset moments at how my life has become, I wrote a letter to my condition. I called it out by name, calculated how many days this has been associated with me, told it all about what I was doing before, and how I've become now, and then I challenged it. I challenged POTS just like all the people in my life have challenged me. The worst thing you can say to me is "Oh, you can't do that because ______" (the blank being whatever reason, being a girl, being a big girl, whatever they have hurled and insulted me with), because that phrase just makes me so angry, and I want to prove the naysayers wrong.

I called POTS a bully. A "push me over, attempt to break me" bully. Instead of lunch money, its robbed me of a freedom. Of a job. Of family. Its a bully that says "Nope, you can't do that, cause I'll make you sicker." POTS is the voice of all those people who'd said I'd never amount to anything, graduate school, ride a motorcycle, bike race... anything that they said I couldn't do, I took that as a mission to do it.

I ended the letter with positive reinforcement to myself of telling my bully that I will overcome. Yes, there will be setbacks, but I'm looking at this as you're a bully, and I will defeat you. Won't be easy, battles will be fought, but I WILL win the war. Oddly, after writing that letter, I felt at peace. I felt calm. I felt exhausted, and honestly, as one who's always taken care of other people and never of herself, I felt like I deserved to sleep. I know everyone needs to sleep, but I always felt like I didn't deserve that rest because I had so much and so many depending on me.

I have a lot of fight or flight, everyday is like that. But right now... I am at peace and I can let myself rest easier.

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Becia, what a good thing to personify POTS, I do this since I got sick! Though I never wrote a letter to my POTS (maybe I will do soon, thanks to your idea!), I very often do talk to my POTS. What I say, is quite similar to what you wrote in your letter.

Maybe I am too "dramatic" in this context, but I actually declared war on my POTS right at the beginning. Up to now, I lost practically every important battle. But I keep reminding my POTS that the war will be won by the side that wins the last battle. And there's not the least doubt that this will be me!! (and in your case you!! ;-))

Of course I know this is all just a psychological "crutch", actually a very shallow one. But it helps emotionally, and that's what counts!

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I declared war, but then got pretty broken really. I have given up the idea of a full recovery to the point I was before all this happened. Maybe this is a stupid move, but I'm looking at everything going "okay, I used to do it this way, how can I do this activity in a way I can still enjoy and its workable for my condition?" I'm currently taking a break from any further testing to WHY i have POTS, but just merely going "Okay, I wanna do ____ activity, how can I do it?" Like last week, I took a bubble bath. That was my major activity for the week, how can I crawl safely to the basement bathroom, wrap my picc line up, and enjoy a bubble bath. I did it. Passed out several times in the process, but didn't further injure myself, also had to rest on the couch down there before I crawled back up to my wheelchair, but I did it. And I smelled nice, and was all toasty... and even when I realized i'm allergic to the bubble bath (oh that was fun, lol), I laughed at POTS and said "Ha ha evil-doer, I got my bubble bath."

My nickname for around me is Potsie. POTS may be a bully, but I'm gonna poke fun at it just as much as it does me.

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It's surely always useful to find a reason to laugh at POTS - a succesful bubble bath is a very good reason indeed!! :-) Congrats you did it!!

But besides that - Becia, you are not broken!! Noone who is active on this site, is! We all fight so hard and deep inside we all still do hope - for full recovery!

I have already read so many of your posts - I can feel it in every single word you write - you didn't give up, you are fighting for the maximum! We all do.

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I keep trying to remind myself I'm not broken, just having one of those moments I need some tape and glue.

My goal this week is another bubble bath, but without the allergic reaction, lol. I almost did it today, but I have a drumming lesson this afternoon that I'm saving my spoons for.

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Becia

I needed this humor today. Thanks for making me laugh. Tyler has had few rough days. He has been fighting a virus which has made him more wobbly. Wheelchair transfers have been a little rough.

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Glad I can make you laugh Rachel! For what it's worth, I'm currently in the hospital dealing with some bad symptoms myself, and I keep er reading my letter as I can (I'm so dizzy right now I can't even sit up) to stay motivated, sometimes you just gotta get mean with your condition.

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Oh Becia

Bless your heart. Are they going to keep you for awhile? Are these new or old symptoms? Some of the symptoms that you have mentioned in the past don't belong to POTS. Maybe you can encourage your doctors to look at some other medical conditions that have the autonomic symptoms involved. Hang tough and post when you can. Sending gentle hugs.

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