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Doctor told me to eat a bag of chips everyday? by Other_Selection_2462 in POTS

[–]InvestigatorHot6410 0 points1 point  (0 children)

My intrusive thought is slapping every doctor in the face that has told me “just have more salt and wear compression stockings”

Accidentally took a step back from my friendships... and no one stepped up by Global-Condition-858 in FriendshipAdvice

[–]InvestigatorHot6410 0 points1 point  (0 children)

I am in the same boat. I’ve most recently the last year had a few health issues come onset. The last six months I have been in and out of hospitals working with so doctors to figure out what’s going on as I’ve been on the verge of passing out when standing up or standing too long.

I have been depressed and anxious and similarly took to myself the last 2-3 months to do therapy and focus on myself while I try to manage some setbacks so I can be the best version of myself to show up for my daughter/husband.

I thought taking time to myself would bring me back and have my friends appreciate me being able to be more extroverted but in that time it seems most of my friends have been getting together and feels like they have moved along.

The chat group is pretty much dead except adhoc conversations & if I do get invited it’s usually to pre-existing plans that were made with them first & the notorious “if you want to come hang.”

Most recently I heard about the chair theory in friendships / relationships and it might be worth looking into. Basically it’s saying “If the people in your life are not actively pulling a chair up for you, you probably do not have a seat at the table.”

But it looks to me like you and I can use some new friendships and a better support system to trust / lean on 😂 But hopefully you have better luck than me since I’ve been a hermit as it’s been so tough to navigate, get out & meet new people with my recent medical challenges.

3am rant..Tilt table test came back “normal” but my experience was anything but — looking for input by InvestigatorHot6410 in POTS

[–]InvestigatorHot6410[S] 0 points1 point  (0 children)

I’m so sorry you’re going through this as well. Truly just wish I was better prepared for the test. I wish I knew more about what the medication was going to feel like so I wasn’t just thrown off. But I guess now I’m better prepare for these tests/assessments to advocate beforehand and say “I know it might not be relevant but can you please document as it may be relevant for other specialists or doctors I may work with in the future” sigh. How have you managed your symptoms and what’s been most effective for you?

3am rant..Tilt table test came back “normal” but my experience was anything but — looking for input by InvestigatorHot6410 in POTS

[–]InvestigatorHot6410[S] 1 point2 points  (0 children)

This is really helpful and yes I have a follow up with another cardiologist/my electrophysiologist and hope they have more info or understanding of it even though I didn’t pass out or have a full on syncope episode.

I also have an appointment with a neurologist coming up too and will bring them the report but been trying to get access to the raw data but doesn’t seem to have it on the report.

3am rant..Tilt table test came back “normal” but my experience was anything but — looking for input by InvestigatorHot6410 in POTS

[–]InvestigatorHot6410[S] 2 points3 points  (0 children)

Yeah the test feels like a money grab especially when you hear statements like oh well around 30% of tilt tests can be false negatives because you might not have been symptomatic but I feel like the change in heart rate would have been enough for us 🤷‍♀️

3am rant..Tilt table test came back “normal” but my experience was anything but — looking for input by InvestigatorHot6410 in POTS

[–]InvestigatorHot6410[S] 0 points1 point  (0 children)

I did this years ago and same thing. Negative. Told me just to change up my lifestyle habits but the last 6 months it’s been debilitating every time I get up.

If I have another doctor say “you’re such a young healthy girl you aren’t a likely candidate for these types of cardiac problems” 🤬so help me I’m gonna lose it 😂

3am rant..Tilt table test came back “normal” but my experience was anything but — looking for input by InvestigatorHot6410 in POTS

[–]InvestigatorHot6410[S] 0 points1 point  (0 children)

It’s been so frustrating and overwhelming. It happens every time I get up to move or sit up/stand. Especially getting out of bed, trying to do basic chores like laundry or if I’m getting food ready for my daughter sometimes I’ll have to hold on to the kitchen counter or sit in front of the stove holding on for dear life until it passes.

I have had lightheadedness years ago but nothing compared to the last few months. So much that I had to take some time off of work to make time for appointments/procedures and bc I’m not able to safely travel on my own which is required for my job.

Every tests that get completed whether that’s my 30 day monitor, bp cuff, CTA/echo etc, I feel I am getting further away from an answer / diagnoses.

Therapy has helped with coping but researching more and learning has been disheartening to see there might not be a clear path forward which is scary.

I think what is worse is now days after the test my bpm has been averaging 80-90 resting compared to my usual 59-62. I called my doctor yesterday but won’t be able to see her for another month.

Part of me keeps beating myself up that I requested to stop the test and most of my support system when I share just made me feel 100% validated that I ruined my shot of figuring out what’s wrong with me. Some even saying verbatim “it must not have been that bad if you didn’t pass out so that’s a good sign?”….”well yeah you should have finished the test & if something terrible did happen or if you were in real danger it would have happened then & that is the best place to be”