POTS: How long can you stand before fainting?

[WinnieBlue]

Ive been battling illness for 15 years. Im 29 now. I started having my PoTS symptoms at about 13. I just learned about the actual diagnosis about a year ago when my symptoms got so bad i had to quit my job. I get presynscope when i stand in one place too long. The symptoms i thought were pretty bad, until i experienced really bad symptoms and now the previous symptoms dont seem so bad! I use to have dizziness, nausea, lightheadedness  and extreme muscle fatigue plus a doubling in my heart rate when standing. 

Now the past 2 weeks I can hardly stand for longer than 1-2 minutes and I go into presynscope. my oxygen and bp drop and my bpm will shoot up for a minute or so and then drastically drop down to 45-50. I havent fainted in 12 years because i learned to recognize the symptoms and sit before I do but they have intensified and I hardly even have time to sit myself down now. I dont know why the symptoms have worsened but it scares me. I think the bitter cold has something to do with it. I have remained painfully cold and the reynaulds in my hands and feet has pretty much been acting up all day nonstop even indoors. 

My main question is how long can you stand before fainting? Im still okay if im walking say through the grocery store at a fast pace but if im walking around my house or standing to talk to someone, clean, or practice hygeine im out after only a minute or two. I use to go about 5-10 minutes long on bad days and 10-12 on good days. Also is this the new norm or have you had fluctuations in the severity of your symptoms? 

[Pistol]

Hello @WinnieBlue - I sympathize with your symptoms. I have HPOTS and NCS - the latter seeming to be the condition you suffer from mostly. I too have had symptoms since my teens but did not become severely ill until later. And - also like you - I have Reynauds in my feet, worse in the winter.--- Despite being much improved with meds and weekly IV fluids I still am not able to stand for more than 2 minutes until my symptoms become noticeably worse. I used to faint and even have autonomic seizures frequently but since I am disabled and mostly homebound I can minimize the episodes with IV fluids as needed, limiting periods of being upright and lying down as soon as I can tell the presyncope coming on ( something that is only possible b/c I am at home all the time ).

21 minutes ago, WinnieBlue said:

I dont know why the symptoms have worsened but it scares me. I think the bitter cold has something to do with it.

It often is difficult to pinpoint what triggers our symptoms. I know that I am very sensitive to the seasonal changes - not only the temps but also barometric pressure changes.   In the winter I am OK as long as I stay inside - the cold is bad. In the summer I have to stay inside b/c the heat worsens my symptoms. The only positive thing I can say is that even if I cannot always tell WHY my symptoms flare I can always rely on knowing that they will improve again. We all have flares and we all know how frustrating they are, especially having to recondition after being mostly bedbound - or at least having to be very inactive. But eventually things perk up again and we can start the slow journey of becoming active again. I hope this will be the case for you. 

Also - sometimes dysautonomia changes and we need to either change the dosage of our meds or try new ones. I was on the same meds for 3 years now and recently had to decrease some of them and start another.

[CallieAndToby]

20 hours ago, Pistol said:

Hello @WinnieBlue - I sympathize with your symptoms. I have HPOTS and NCS - the latter seeming to be the condition you suffer from mostly. I too have had symptoms since my teens but did not become severely ill until later. And - also like you - I have Reynauds in my feet, worse in the winter.--- Despite being much improved with meds and weekly IV fluids I still am not able to stand for more than 2 minutes until my symptoms become noticeably worse. I used to faint and even have autonomic seizures frequently but since I am disabled and mostly homebound I can minimize the episodes with IV fluids as needed, limiting periods of being upright and lying down as soon as I can tell the presyncope coming on ( something that is only possible b/c I am at home all the time ).

It often is difficult to pinpoint what triggers our symptoms. I know that I am very sensitive to the seasonal changes - not only the temps but also barometric pressure changes.   In the winter I am OK as long as I stay inside - the cold is bad. In the summer I have to stay inside b/c the heat worsens my symptoms. The only positive thing I can say is that even if I cannot always tell WHY my symptoms flare I can always rely on knowing that they will improve again. We all have flares and we all know how frustrating they are, especially having to recondition after being mostly bedbound - or at least having to be very inactive. But eventually things perk up again and we can start the slow journey of becoming active again. I hope this will be the case for you. 

Also - sometimes dysautonomia changes and we need to either change the dosage of our meds or try new ones. I was on the same meds for 3 years now and recently had to decrease some of them and start another.

Thanks for helping on this forum @pistol. 

21 hours ago, WinnieBlue said:

Ive been battling illness for 15 years. Im 29 now. I started having my PoTS symptoms at about 13. I just learned about the actual diagnosis about a year ago when my symptoms got so bad i had to quit my job. I get presynscope when i stand in one place too long. The symptoms i thought were pretty bad, until i experienced really bad symptoms and now the previous symptoms dont seem so bad! I use to have dizziness, nausea, lightheadedness  and extreme muscle fatigue plus a doubling in my heart rate when standing. 

Now the past 2 weeks I can hardly stand for longer than 1-2 minutes and I go into presynscope. my oxygen and bp drop and my bpm will shoot up for a minute or so and then drastically drop down to 45-50. I havent fainted in 12 years because i learned to recognize the symptoms and sit before I do but they have intensified and I hardly even have time to sit myself down now. I dont know why the symptoms have worsened but it scares me. I think the bitter cold has something to do with it. I have remained painfully cold and the reynaulds in my hands and feet has pretty much been acting up all day nonstop even indoors. 

My main question is how long can you stand before fainting? Im still okay if im walking say through the grocery store at a fast pace but if im walking around my house or standing to talk to someone, clean, or practice hygeine im out after only a minute or two. I use to go about 5-10 minutes long on bad days and 10-12 on good days. Also is this the new norm or have you had fluctuations in the severity of your symptoms? 

I used to be able to swim 8 months ago (pre cancer medication) and I could do photography and music. But now I can only sit up for a few minutes before I start passing out. I too have the dystonic seizures. I'm frightened that I will never do these things again.