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Posted

1. What scares you most about pots?

2. What types of things scare you in real life?

1. Thing that scares me about pots: Dying, losing control

2. Things that scare me in life: ghosts/evil spirits, going crazy, failure, possession( the exorcist scared the pants off me!), flying

Posted

Me too! I also have a phobia of vomiting- again not being in control of my body. This is one of the toughest things since I'm basically nauseous constantly.

Posted

1. I am more afraid that POTS is simply a "catch all" name for several potentially treatable conditions that are just not know right now. My two biggest POTS fears are uneducated medical professionals, and the possibility that my children might get this.

2. In the rest of life, my fear in life is heights/falling.

As for death, well, that is one thing that no one can avoid. I don't fear death at all...I fear living in pain.

Posted

1. What scares you most about pots?

I agree with Firewatcher on this. But I'm also afraid of getting stuck in a hospital with some idiot know it all doctor who thinks I can eat the crap they call food in a hospital. Or take all those drugs .. FWIW. I realize they're not all idiots. :rolleyes:

2. What types of things scare you in real life?

Losing one of my kids ...

Posted

I'm mostly scared of the uncertainty with POTS...I have no idea how bad (or good maybe...) I will feel someday. It scares me that I have no control over this stuff.

In real life...I don't have many fears that I really think about on a regular basis. I guess I worry about my daughter getting this and EDS but try not to focus on that too much. I have also always really disliked clowns and bees.

Posted

I optimistically believe my pots will get better but my fear is that it wont. And i accept i probably wont be able to do some things ever but I am afraid of just growing older and more ill. All my issues with chest pain make me anxious when i have bad episodes that i will have a heart attack.

In life generally I am not very fearful. Rather it seems to have made my husband very afraid for his health and he has become very exercise and food conscious.

Posted

My fear for POTS: exactly what Firewatcher said about living the POTS years with a treatable condition. I guess that's what keeps me making appointments with new doctors. As soon as I hear, "we don't know", I'm already thinking of who to next see.

My fear in daily life: my daily fear is being left alone without the ability of my husband to come home within 20 minutes. We live in a small town, and I never ask him to come home, but just knowing that he is around keeps me panic-free. If he needs to go out of town, I just ride along.

My fear in my future life: being dependent on family members, such as siblings or my grown kids. My husband is my rock, and if anything happened to him, my world would spin out of control. I can't drive or stand up to cook, so I would need to find someone to help my daily life. I don't even want to think about it. In reverse of this, I fear if anything serious health-wise happens to my husband, I would want to be able to take care of him and know I wouldn't be able to. It would make me feel awful after all these years he took care of me.

Posted

My fear with POTS- that it's a symptom of something catastrophic (or that I think is scary--MS, ALS etc) I'm going to drop dead, my children will inherit this, my quality of life will deteriorate to invalid status

Pre-pots fears--- losing my children or husband, heights

Posted

I fear getting worse, my mother has full body (even her face) convulsion like tremor episodes. I fear passing out in public, hitting my head and scaring my kids. I also fear not finding a doctor who really understands and empathizes with the quality of life impairments. My EP cardiologist actually said to me "you are not having a heart attack and don't have heart disease" umm I never said I did, it was so left field.

I fear losing friends as more and more people find out I have dysautonomia, I fear it being harder to make new friends, we are military and move often. I fear family strains as most of the women have some type of autonomic issues and some of us are able to seek medical care (even thought it can be disappointing unsupportive care) and others face challenges with finances and insurance.

My oldest daughter has NCS, she is 17, I fear she wont grow out of it. I still have 3 young children, I fear they will develop some type of autonomic dysfunction.

Wow... we have alot to be concerned about don't we.

Posted

POTS: I fear the same things

--losing control in public.

--showing up at the ER and dying at the hands of an ignorant doctor.

--mornings and how I'm going to feel.

--not living a normal life span because of this.

--that my kids and their kids will suffer as I have

--being alone and not getting help in time if I need it

Things I fear in real life:

--ticks

--rejection

--being ignored

Lindajoy

Posted

1. What scares you most about pots? I'm scared of dying. I'm scared of driving and also of never getting well or even gettting worse.

2. What types of things scare you in real life? Vomiting and death are my two big ones

Posted

I agree with everyone on 1. Dying from not breathing and ignorant docs, and losing control ESP with the ones I love as far as saying not nice things... 2. At 21 I developed a feAr of flying and height, which I never had before, germaphobe, general fear of disappointing G-d and the people I love, being attacked or not being able to save the loved ones from an attack or robbery..

Posted

I'm afraid this nightmare will never end. I'm usually a little afraid to go to sleep at night thinking that I will wake up having taken a giant step backwards the next day for some unknown reason that will never be figured out.

Snakes. ~ ew.

Also I'm afraid that I might miss the one post on this forum that will be my answer...

Posted

About POTS: It causing more severe issues when I get older, or it being more serious than what they think presently.

Other fears: Dying, med allergies, food allergies, and the biggest fear is missing out on life from being to consumed from medical issues/information/google/research journals....ect....ect...

Posted

With lots of other folks - I fear progression; I can deal (mostly) with things right now and I'm not sure how long that would go on if things became worse. I fear losing my partner since he helps me be independent in many ways, but I also fear that my POTS being more apparent makes him want to leave more. Tricky. I also fear a general loss of independence, since I can no longer drive; I fear I might not be able to live alone, and that I already can't do solo fieldwork as a result of this. As a result of a potentially POTS-related fall I'm now afraid of tripping and falling too. Also afraid of walking into an intersection without looking (spaciness) and getting hit by a car, or missing a hole in the sidewalk and hurting myself (again, spaciness).

In the rest of life - I'm afraid of needles and blood, large black spiders (thank you, widow bite at 13...), falling (buildings/mountains/planes, not tripping on the sidewalk), losing my family and loved ones and pets, horror-movie stuff.

Posted

Well, from my almost 6 months of experience...I'd say feeling nauseous at the doc or in public. Also feeling dizzy when you have to walk up a lot of stairs. I hate being dizzy!

Kayla, 10

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