Dysautonomia flare

[angelloz]

I have been doing pretty well for several years with low BP and tachycardia. Suddenly the past two weeks have been back to the way I was years ago. What happened? I am now 63 years old. In the experience of all of you which is most likely. 

1. Even though fully vaccinated I had Covid in early February. Could this be a delayed reaction?

2. I am decreasing my migraine triptan medication which is a vasoconstrictor but I have done this before with no I’ll effects. 
 

3. I have been diagnosed with lipedema( not lymphedema  ) and have decreased my salt very slightly. 
 

I am feeling pretty low after having come so far. I have been doing 10,000 steps a day. Today I can barely stand for any length of time. 

Edited March 14, 2022 by angelloz
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[MomtoGiuliana]

So sorry.  The one thing I have learned is there is often no clear trigger for a flare up.  Some of the worst flare ups I have had there was no apparent trigger for.

I've also had things happen, like surgery, or other stresses. and have had no flare up after.  

If you were doing so well, you will get there again--in my experience.  I know it is very scary and frustrating.

[MikeO]

2 hours ago, angelloz said:

I have been doing pretty well for several years with low BP and tachycardia. Suddenly the past two weeks have been back to the way I was years ago. What happened? I am now 63 years old. In the experience of all of you which is most likely. 

1. Even though fully vaccinated I had Covid in early February. Could this be a delayed reaction?

2. I am decreasing my migraine triptan medication which is a vasoconstrictor but I have done this before with no I’ll effects. 
 

3. I have been diagnosed with lipedema( not lymphedema  ) and have decreased my salt very slightly. 
 

I am feeling pretty low after having come so far. I have been doing 10,000 steps a day. Today I can barely stand for any length of time. 

Angelloz sorry to hear you have taken a step backwards. To be honest i cannot fathom why the dysautonomia symptoms keep rearing up. Back in the fall of 2019 i could have sworn i caught covid two folks at the office went on a cruise and when they came back were coughing, a week later i was coughing and had breathing issues. Lasted two weeks. I have been struggling since.

Seeing you were able to do the steps hang in there. I would reach out to your doc and let them them know you have had a significant change as to how you feel. 

Not saying covid is the root of my issues but i also have been diagnosed with lipedema. It is manageable. Have you made any drug changes outside of the triptan? 

[Sushi]

6 hours ago, angelloz said:

I have been doing pretty well for several years with low BP and tachycardia. Suddenly the past two weeks have been back to the way I was years ago. What happened? I am now 63 years old. In the experience of all of you which is most likely. 

1. Even though fully vaccinated I had Covid in early February. Could this be a delayed reaction?

So sorry! My electrophysiologist is seeing tachycardia in people who have had Covid and don't have a history of dysautonomia, so if you already had tachycardia, it would seem possible that  Covid could aggravate it (according to my EP's experience).

[Pistol]

@angelloz - I had COVID last fall, really bad, with immune issues afterwards. Although I never really became extremely POTS symptomatic afterwards - I have also never went back to pre-infection status. I would not be surprised if the virus would be the cause of your downward-spiral, it was for me. I am 55, and I can definitely say that aging also plays a role in how I recover from illness, especially viral illness. 

I am so sorry you are going through this. 

4 hours ago, MikeO said:

I would reach out to your doc and let them them know you have had a significant change as to how you feel. 

I totally agree, there may be things your doctor can prescribe or recommend for you to get back on your feet. 

[Relax86]

@angelloz, 

I think we joined around the same time in 2012.  Since then I've tried to periodically post here that I was able to get better. I can't quote myself but I think sometimes I said I was 85% or 90% improved since my POTS started. One of the main reasons I try to stop by and post is to give people hope. I still battle the feeling of these symptoms and try to stay hopeful except...... recently I've been back on the struggle bus. I've had some return of my dizziness, stomach issues, extreme fatigue etc. I could go into more symptoms but it's just a mysterious collection of them that appeared for no reason (again). 

Here in NJ there's early spring weather, but also weird wind storms and storms affect me. There's less people masking and more people around me with things like stomach bugs and regular viruses. I'm vaccinated and boosted (moderna) and had no trouble with them. I usually react to everything as many of us in this forum can attest to. I don't believe I've ever had covid. I did a home test Saturday night b/c I was feeling so so off; luckily it was negative. 

So it's just me, and my perimenopausal self, and my POTS popping back in to say that these flares still happen. I don't always know why, but thankfully they seem to subside. I hope yours does soon also. POTS is pretty terrible, I wish we would all get better. 

Tracy 

[bizbiz]

Sorry to hear you are experiencing a flare up of symptoms.

I've had three episodes similar to what you describe, (where all of my old symptoms returned and I felt like I was back to 'square one'.) From my experience, these relapses are only temporary. Some may last longer than others (like the current one), but I always return back to my baseline where I lead a fairly normal and very active life

I hope you start feeling better soon.

[Yhoun]

I’m also currently flaring and frustrated. I felt pretty good last week, I was on vacation from work and was able to do things I hadn’t done in a very long time, mostly because of the pandemic (like going to the movies). And then suddenly a couple of days ago, I couldn’t stand without feeling faint. I felt a little better yesterday, and then worse again in the evening, and not so good today.  I had COVID in December, had a similar flare to this one in January (had to work remotely for a couple of weeks), and my worst fear is that the virus has made my POTS worse and that this will continue. So overall I’m pretty bummed today.