Another comprehensive post, thank you. I seem to have the high blood pressure symptoms with raised heart rate every time I stand and sit with my feet on the floor (although not as bad). I use the visible wearable and try to keep within my envelope of energy limits. But some days I just have to do things!!
Thank you so much for reading—I hope it was helpful! Totally understand how tough it can be to slow down on days when things need to get done.
I’ve also found that sitting upright can sometimes make symptoms worse, not just standing. I’m curious if you ever experience tremors or shakiness when your BP or HR spikes (if you’re comfortable sharing). The high BP you described reminded me a bit of what’s seen in the hyperadrenergic subtype.
I'm sorry to hear that, I find the tremors to be quite scary in my experience. I've recently been reading about the potential connection between MCAS and hyperadrenergic POTS. It may be something I write an article about in the future and will let you know if I come across anything helpful.
Another great piece. I particularly liked the breakdown of the role each electrolyte playa in the body. I'd definitely appreciate tips/recommendations for choosing electrolyte packets. And I've shared this post with others!
This is so great! I dream of 6 months of no flare ups so I LOVE reading about successes like these. But I couldn’t agree more about just having these ready and a plan for any flare ups because the last thing you want to do is be scrambling to research or stock up on some of these things. My Fitbit has been great to help recognize patterns of success but also what has been leading to my crashes. It has taken my symptom tracking just that one step further. I just posted a note about this on my page but I recently found out that my state offers a window tint medical exemption which I just finalized and was able to update the window tint on my vehicle and that alone has been a huge help in regulating my body temp and mitigating my sensitivity to light when I’m having to be in the car, especially for long drives to doc appointments.
I truly believe it is possible with the right support! And from what I’ve read in your posts, it sounds like you are making positive steps 🫶🏼 I also loved using my Fitbit for tracking HR and patterns, such a helpful tool 🙌🏼
What you mentioned about the window tint medical exemption is so cool, this is the first I’ve heard of it! I learn so much from other LC and chronic illness people here about resources and support. I can totally relate to light sensitivity, so thanks for letting me know!
Thank you so much for your kind words—and an extra special thank you for your contribution through Buy Me a Coffee! You’re my first supporter there, and it truly means a lot to me. Part 5 coming soon 💓
Another comprehensive post, thank you. I seem to have the high blood pressure symptoms with raised heart rate every time I stand and sit with my feet on the floor (although not as bad). I use the visible wearable and try to keep within my envelope of energy limits. But some days I just have to do things!!
Thank you so much for reading—I hope it was helpful! Totally understand how tough it can be to slow down on days when things need to get done.
I’ve also found that sitting upright can sometimes make symptoms worse, not just standing. I’m curious if you ever experience tremors or shakiness when your BP or HR spikes (if you’re comfortable sharing). The high BP you described reminded me a bit of what’s seen in the hyperadrenergic subtype.
Yes I do after standing too long and for longer periods of sitting with my feet on the ground (showers and on the rare occasion I have to drive)
I'm sorry to hear that, I find the tremors to be quite scary in my experience. I've recently been reading about the potential connection between MCAS and hyperadrenergic POTS. It may be something I write an article about in the future and will let you know if I come across anything helpful.
Another great piece. I particularly liked the breakdown of the role each electrolyte playa in the body. I'd definitely appreciate tips/recommendations for choosing electrolyte packets. And I've shared this post with others!
I had fun assigning job titles to each of the electrolytes 😂 I will add electrolyte types/brands to my lineup! And thank you for sharing 🙏🏼
Yes! These are all such great tools of support 🩷
Thank you! In my experience it is really the simple strategies that have been the most helpful 💓
This is so great! I dream of 6 months of no flare ups so I LOVE reading about successes like these. But I couldn’t agree more about just having these ready and a plan for any flare ups because the last thing you want to do is be scrambling to research or stock up on some of these things. My Fitbit has been great to help recognize patterns of success but also what has been leading to my crashes. It has taken my symptom tracking just that one step further. I just posted a note about this on my page but I recently found out that my state offers a window tint medical exemption which I just finalized and was able to update the window tint on my vehicle and that alone has been a huge help in regulating my body temp and mitigating my sensitivity to light when I’m having to be in the car, especially for long drives to doc appointments.
I truly believe it is possible with the right support! And from what I’ve read in your posts, it sounds like you are making positive steps 🫶🏼 I also loved using my Fitbit for tracking HR and patterns, such a helpful tool 🙌🏼
What you mentioned about the window tint medical exemption is so cool, this is the first I’ve heard of it! I learn so much from other LC and chronic illness people here about resources and support. I can totally relate to light sensitivity, so thanks for letting me know!
Another excellent post, thank you!
Thank you so much for your kind words—and an extra special thank you for your contribution through Buy Me a Coffee! You’re my first supporter there, and it truly means a lot to me. Part 5 coming soon 💓
You’re doing great work - I’ll be sharing this post in my own upcoming post as well ☀️
Yes please, me too💧
Hydration recipes please
You got it! It will be next up after the final part of the decoding dysautonomia series 🫶🏼