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Having others who really understand your chronic illness is so important. POTS is not all in your head, you are experiencing this, we are here to help you through this journey.
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Community Voices

Comobilities

After getting diagnosed with POTS last year, I thought that was going to be the end of the mystery of why I feel so sick. But, just as life happens to unfold, this was indeed not the end.

Once I started treatment, things got a bit better. I could work again and I was only fainting a few times a week, if that.

However, recently, things have gotten worst than ever. I'm back to fainting multiple times a day, except this time it has left me almost completely bed bound. I lost my job, my hobbies, my ability to even shower without someone close by.

It's been hard.

But even worst is I am having bad abdominal pain, constipation, vomiting episodes, and more GI tract symptoms which I've never had before.

I heard that POTS has many comobilities, and I fear that this might be one developing.

I am trying to hold out and change my lifestyle but as the days get worst I fear I may have to go seek urgent help.

What is everyone else's experience with POTS' comobilities, if any? And how long did they take to manifest?#POTS

4 people are talking about this
Community Voices

Summer

Does heat make your POTS worse? If so, what have you found that helps? I am in Georgia and almost completely disabled during the summer.

6 people are talking about this
Community Voices

Are mornings or afternoons harder for you?

I also have the hardest time in the afternoon which I notice most people saying mornings are the worst for them. By 2:00pm it’s everything I can do to stay awake, I blackout the most then and become so nauseous I don’t usually eat dinner.

3 people are talking about this
Community Voices
Community Voices
R

Fatigue Management Tips?

My fatigue has gotten steadily worse since I had COVID last December. I also have myoclonic spasms from an undiagnosed issue. Does anyone have suggestions for alleviating or working around severe fatigue?

Community Voices

Household chores

How do you deal with household chores (laundry, dishes, cleaning) if you have to keep your legs elevated to keep the blood from pooling? Wearing compression stockings causes me to get overly hot and pass out.#PosturalOrthostaticTachycardiaSyndrome #dishes #Laundry

3 people are talking about this
Community Voices
Community Voices

Serious Question

So I have been learning about the brain and nervous systems in my anatomy class. There is a small part of the brain called the Medulla Oblongota. It is responsible for controlling and maintaining a healthy and normal heart rate, as well as other autonomic functions. I instantly looked up POTS and studies on the Medulla Oblongata. And there was absolutely NOTHING! There’s no way that I am the first person to have this thought. Has anyone had a doctor look into this? Any doctors here, please look into this. Is it a malformation? Is the electrical activity different?
#AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #POTS #LivingWithPOTS #ChronicIlless #ChronicIllness #Doctors #MightyQuestions

1 person is talking about this
Community Voices

Has anyone tried provigial to help with POTS fatigue and/or fatigue from POTS medication?

My doctor recently increased my propranolol dose, and prescribed provigial to help balance the fatigue I get from my propranolol. I took it this morning (my second day) without food, and I feel awful. I can’t take it if I feel like this, someone please tell me they’ve been able to take provigial and not feel like they need to crawl out of their skin!? Taking it on an empty stomach was clearly a bad idea.

Community Voices

What mobility aids are best for pots

Hello again : )
I’ve been struggling with walking long distances and standing for long periods of time. I’ve heard of people using mobility aids for pots but I’m not sure where to start. Do you use a mobility aid? When did you decide to start using it? What aid do you use? How does it help you? Feel free to answer or mention anything you feel comfortable with or you feel would be helpful

6 people are talking about this