Jyoti

Because our POTS situations and origins may differ, it is always challenging to name a thing that works for everyone. However, I can say what works for me. Relatively, of course, because nothing other than avoidance really works. Like @MaineDoug, I use box breathing, often. I also use a breathing technique that sometimes works even better for me, with a 3 count inhale, 7 count exhale. The exhale part of the breath activates the parasympathetic so lengthening it can give your body a cue, I think. I also use ice on my neck and back of the head. This can be really helpful for me. I am not sure why, but I am pretty confident that all my troubles start in the brainstem/neck, and that when there is even the tiniest bit of inflammation there, things get worse. So ice does help. Maybe it is just an more forceful invitation to the parasympathetic as well? If it is really bad, I use something called Serious Relaxer by Wishgarden---an herbal tincture. I'm not sure if I am allowed to mention it here, but it has gotten me out of a few impossible scrapes.

Very much so, in my case. I don't want to be a voice of doom (and obviously, there are plenty of people like @Pistol for whom this isn't the case), but my life went from challenging to almost impossible at menopause. I'd be very curious about bio-identical hormones if I was approaching menopause. In fact, I would do all I could to limit the impact it might have. Good luck to you! I hope you can thread the same needle that Pistol has.

I've gotten cranio-sacral therapy (and/or osteopathic manual medicine, which is CST's parent) for decades, and I will say this: there is a wide range of skill and intuition in its practitioners. It is an extremely delicate art/science and it can have profoundly positive effects, but for those of us with issues of blood and fluid flow in and out of the head, it becomes critical to be sure you are seeing someone who can handle your body with exquisite capacity. Not always easy to find! I have recently started seeing someone very gifted. But even so, there have been ups and downs. The first time I saw him, I was completely symptom-free (all of it--ME, POTS, MCAS, HSD, AAI) for 24 hours after the treatment. It was miraculous. Two days later I had onset of the most horrible headaches in my life. I believe the cerebral spinal fluid levels got unbalanced and pressure built up in my skull. This man took the challenge on and when I saw him for the third time, he relieved 50% of my symptoms for three weeks, which is significant. He told me the other day that as the body learns how to hold these treatments, it is possible to take them deeper, which leads to greater healing. I don't really expect miracles, and I do know that with systems like ours, even a slight tweak can be upending. But I have found it to be one of the most effective treatments I have had--because I have a great practitioner. If your dizziness doesn't dissipate, I'd ask the person who did your treatment to fix it @Stacey. Or at least consider that. If you think they are listening to you and your body. I've done that before and it has been successful in terms of righting what went wrong.

I thought of you while reading that part, @MikeO! Canary in the coal mine?

Some interesting stuff here, including the STAT/Lumia situation we have discussed on DINET, Sjogren's and more: https://www.healthrising.org/blog/2024/06/30/lauren-stiles-dysautonomia_international_whats_up_doc_/

Know exactly what you mean and how you feel @Sarah Tee!

I don't know about stair climbing, but I have had several episodes in the last couple of weeks where my legs seems just a tad disconnected from my brain. I sort of stutter-walk, not able to just flow--I have to remind my leg of what it is up to. I am looking at tethered cord or other lumbar spine nerve problems, so it kind of makes sense in my case. It may in fact be not at all like what you are experiencing @MTRJ75, but since I have been watching and wondering--it is on my mind and sounded a tiny bit similar.

I distinctly recall in my early days being confused about this, @Sarah Tee. I know I read that the drop in BP was both not relevant and then it was. As I said--I was confused and went looking for documentation, which I did not find. But I know your curiosity is well-founded. Even if we know clearly what the criterion is today. And to be honest, so many diagnostic criteria DO change. BP, cholesterol--the bar keeps moving. Which we hope represents an expanded understanding. Still...it can leave people in limbo. (Great BP one day and the next, once the upper limits have been dialed downward and you have a hypertension diagnosis. (Same person, same body, same health.)

I don't know, @Sarah Tee. I went on that hunt a few years ago, likely for similar reasons. And did not find anything definitive. My neurologist, who has been treating dysautonomia since the late 1960's, was happy to affirm that I have POTS along with neurologically mediated syncope (which causes my BP to drop), thus causing both the elevated heart rate and the BP drop. His training from way back may allow him to see things a little more liberally than is the norm now?

My left side is a mess too! From the top of my head to my toes. The things that clearly are out of alignment are all on one side. At least we can know that this is not unusual? Still...it is curious. I wonder why bones on the left side of your skull would end up misaligned, @Sushi?

Same as @RecipeForDisaster. I've tried the gamut of dosages, tried compounding pharmacies to exclude problems with fillers and still....nothing. I did not have trouble with sleep on it--just.....nothing.

So easy to just flow into feeling good, strong, capable, alive....and totally forget the underlying reality. I do it w-a-a-a-a-y too often! Hope your knees recover soon.

Fantastic news, Doug! I've been thinking of you and looking forward to hearing how things went.....so glad you are able to make such a happy report.

I always notice a correlation between tachycardia, narrow pulse pressure and high diastolic. That reading pictured looks exactly like many of mine. I don't know about the impact of mitral valve prolapse but in my case the high HR goes with the other two most of the time. Have you learned about the cause of your tachycardia?

A well-earned congratulations, @Sarah Tee! I really hope this is a helpful step toward improving things for you. It is all so resonant for me, and inspiring too. I have developed what I am sure is intracranial hypertension alternating with a cranial leak of CSF fluid. I am confident that it is stenosis or impingement of my internal jugular veins, blocking the outflow of CSF. But of course you go to a doctor and tell them you have it all figured out? You ask for the tests that will either prove or disprove it all? No. Not likely. So I am in the early stages of trying to cajole and nudge various doctors into ordering the tests I need. Anyway--this is about celebrating that you got yours after loads of money spent and yards and yards of patience and strategic craftiness! We look forward to hearing what the tests show.