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Why do I get good days and bad day's?


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Just wondering if anyone can answer this. I had 4 decent days (hardly any symptoms) and then the past two days have been terrible! 

How can that happen....what changes in the body to make you feel so ill again. The good days I didn't over do things. Is it because the ANS decides to just start dysfuntioning again. I just feel like I can't even stand today. 

Pots is so debilitating I still can't get my head round it all. 

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@Nin - the Ups and Downs of POTS are ( unfortunately ) part of the deal. It took me years to understand that feeling good does not mean I am cured - and getting bad again after a good spell does not mean this is it from then on. There are so many triggers that can set us off - weather, diet, heat or cold, stress, illness, too much or not enough exercise, allergies, overstimulation … the list seems endless 😕! I kept a diary of my days for a while and figured out some of my triggers. There are different ones each season - right now it is insect bites and allergies, as well as heat intolerance.  And sometimes I can just tell that after 3 good days I am due for some bad ones soon … the trick is to enjoy the good days and be hopeful on the bad ones. Hang in there 🤗

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42 minutes ago, Pistol said:

@Nin - the Ups and Downs of POTS are ( unfortunately ) part of the deal. It took me years to understand that feeling good does not mean I am cured - and getting bad again after a good spell does not mean this is it from then on. There are so many triggers that can set us off - weather, diet, heat or cold, stress, illness, too much or not enough exercise, allergies, overstimulation … the list seems endless 😕! I kept a diary of my days for a while and figured out some of my triggers. There are different ones each season - right now it is insect bites and allergies, as well as heat intolerance.  And sometimes I can just tell that after 3 good days I am due for some bad ones soon … the trick is to enjoy the good days and be hopeful on the bad ones. Hang in there 🤗

I just bought a diary, I will start writing. I think I need to learn to accept my condition, but I just can't.  Maybe I will one day. I think if you learn to accept, the bad day's won't feel so bad. Then like you said enjoy the good days. No problem here with insect bites....it's pretty cold at the moment 😟 

Well I did speak to Dr Gupta after so hopefully when I do get more medication I will feel a lot better. Thank you 😊

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9 hours ago, Nin said:

Well I did speak to Dr Gupta after so hopefully when I do get more medication I will feel a lot better. Thank you

@Nin - that was fast!!! I am glad you got to talk to him and I hope any advice he gave you will be fruitful!!!

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I also have good and bad days. And I have good and bad seasons. And good or bad years.

I suspect that there is some kind of "unstable equilibrium" phenomena in our autonomic systems. That is, our autonomic systems respond to the variable stressors by striking up some kind of equilibrium, which is sometimes good for our functioning and sometimes no good. I've noticed that after I exercise, I may be tired for two days.  

I tend to feel worse when I fly, but once I flew to Orlando Florida and when the plane landed I was electrified with energy and went sprinting through the airport. 

Nothing makes sense. It is crazy and frustrating. 

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I have a POTS flare up now for 9 weeks. I think the stress of lockdown, work and school is what set it off. I have been miserable. Prior to this incident, I hadn’t had a flare up in 10 months and that only lasted 3 days. Hope to get better soon. The doctor keeps saying I will, but I am frustrated. I truly feel with everyone in this situation.

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1 hour ago, Notwhattheyc said:

I have a POTS flare up now for 9 weeks. I think the stress of lockdown, work and school is what set it off. I have been miserable. Prior to this incident, I hadn’t had a flare up in 10 months and that only lasted 3 days. Hope to get better soon. The doctor keeps saying I will, but I am frustrated. I truly feel with everyone in this situation.

That's what I was thinking today it must be a flare up. It's been nearly a week I've been feeling this bad. I mean the best of times are terrible, but this past week has been horrific. 

Do you ever get a certain time of the day you just may get a spurt of energy and are able to actually do things? I had that today. I was in bed for about 2 hrs I just couldn't get up and then later on pottering thinking what happened earlier and how am I able to to what I'm doing now ok. I'm just constantly trying to figure it out in my head!

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Wish I knew what triggered my worse days but as others say it just seems part of the deal of POTS and ME.

My symptoms vary a lot and not easy to spot patterns in terms of diet and activity,particularly as sometimes reactions for me are delayed.

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23 hours ago, Notwhattheyc said:

I have a POTS flare up now for 9 weeks. I think the stress of lockdown, work and school is what set it off. I have been miserable. Prior to this incident, I hadn’t had a flare up in 10 months and that only lasted 3 days. Hope to get better soon. The doctor keeps saying I will, but I am frustrated. I truly feel with everyone in this situation.

I'm dealing with the same.  I think a lot of it for me is stress induced and then there is nothing else to focus on other than how crappy I'm feeling.  My cardiologist today said most people with POTS get better in the 3rd or 4th decade of life....really now?  Wouldn't that be nice.  I know teens can outgrow it sometimes, but I'm going on 10 years and got diagnosed at 29 after being sick for 5 years already, so it's not looking good lol.  Can I ask what you attribute to your better days?  Anything specific you were doing that was helping?

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