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how to determine if you will have a bad POTS day


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I have HPOTS for many years, and I am relatively stable. From reading many posts on this forum I have come across tons of people that have become increasingly symptomatic due to overdoing things and triggering POTS to get worse. I have found in my life that listening to my body and adjusting my day's activities accordingly is a must in order to stay active ( granted - this results in many cancelled appointments¬†ūüėŹ). Here is an example followed by other signals I respond to in order to avoid worsening symptoms or flares:

Yesterday I was scheduled for an afternoon appointment with my doc an hour away. It was just a follow-up but nonetheless important. I woke up with ice cold feet and chest pain. I took all of my meds and drank a lot of fluids. My BP was slightly elevated. By 8 am the cold feet continued and my legs became tingly just having them elevated - all the alarms went off. This happens when my sympathetic NS is in overdrive, and I NEED to take it easy. So I called and made the appointment a tele health visit, allowing me to rest and therefore avoid an incident. Had I went to the appointment I would have at least become unable to walk, severely symptomatic and in bed for days.  

Here are other symptoms that I take as a signal to stay put: 

- chest pain, shortness-of-breath

- tachycardia, palpitations

-cold hands and feet

- lightheadedness, dizziness

- numbness and tingling in arms and legs, heaviness in the legs

- general fatigue and weakness

There are many other symptoms that give us cause to alarm, and if we learn to be aware of them we can avoid days of being incapacitated. I have learned from experience that we cannot push ourselves. I used to do just that and it ended up in me passing out and having seizures from severe POTS. But it takes some practice to find what triggers you. A diary can help - write down any symptoms you have, time of day and what you are doing at the time, if possible with BP and HR readings. After a while you can see a pattern of what activities cause you to feel worse. 

This approach has given me a lot of quality of life back, despite the fact that it results in many last minute cancellations. 

What triggers do YOU know that prompt you to stop doing what you are doing? 

 

 

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Well pretty sure i don't have POTS per say or even really have a handle on what triggers my flare ups outside of some food items.

My red flag symptoms are:

-Sudden hot flashes

-consistent low blood pressure

-lightheadedness

-Increase in feeling the orthostatic drop in bp upon standing

-increased whooshing

-palpitations

-Runny nose

-feeling vasodilated - near syncope blowing nose

-blurry vision

-fatigue

-GI difficulties/pain

 

 

 

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7 minutes ago, KiminOrlando said:

My doctors charge me for same day cancelations. 

Mine do as well. My preference is to meet in person "IMO it is to hard to communicate via a telehealth visit" Come high or h*** water i will make the in person visit despite feeling like crap which is the norm for me. 

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My preference if possible is tele-health appointments. That way if I am having a bad day I can still have the appointment. Most appointments unless its getting a test done is just taking vitals and talking which can be done via video conference.  Any new doctor when making the appointment if it has to be in person I tell the office that I have dysautonomia and it can flare up without warning and that I may need to cancel at the last min and request they wave the charge. 

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49 minutes ago, DysautonmiaMatt said:

My preference if possible is tele-health appointments.

Glad to hear that the tele-health works for you. At work we found the video conferences were ineffective when trying to communicate. So on the jet i would go. every two months out to finland to meet and every two weeks elsewhere in the US. Just speaking what i have experienced. I could see if i had a scratchy butt would warrant a video visit with a nurse but not when one has significant recurrent issues going on. When it is needed i will also get same day tests done when i come in.

Just my opinion.

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5 hours ago, DysautonmiaMatt said:

Any new doctor when making the appointment if it has to be in person I tell the office that I have dysautonomia and it can flare up without warning and that I may need to cancel at the last min and request they wave the charge. 

I have walked out of new doctor's offices because I showed up and explained that I was unable to sign the form consenting to be charged for late cancelations because they would not waive it for me. Many times. I waited 4 or 6 months for the appointment, then can't see the doctor because of this. They simply do not care.

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@KiminOrlando - that is when I call to change it to a tele-health appointment Unless it is a visit that calls for an actually examination ( sick visit ) most docs I see are OK with this. If it is a sick visit I explain and reschedule - I have never had any office penalizing me for this, even the ones that post in the waiting room that if appointments are not cancelled 24 hours before there is a fee. 

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