Good Bp, Good Hr, But Symptoms Are Even Worse?

[Synthem]

Howdy DINET friends. I wanted to post an update and share some odd experiences I had in 2014

I'm in a rather strange place right now where my blood pressure and heart rate are in an ideal range, but my symptoms have gotten worse. My tolerance for standing, walking, and other activities has decreased, and I'm fainting more often than I ever have— even before I got a diagnosis and treatment.

I'm wondering if anyone has had this happen at some point in their dysautonomia journey, where their numbers are "perfect" — quote the doctors at my dysautonomia clinic — but nothing else is going well?

The weird thing: One of the instances when I passed out, my heart rate was being monitored the entire time, and my blood pressure was taken frequently. Both were normal for what I was doing, except for a single HR spike that was still considerably norm for me (120)— but I completely passed out. Fortunately, it came on slow enough that I was able to recognize the warning signs and sit down. As soon as my butt hit the chair and I relaxed, I was unconscious. I was standing for ten minutes, glancing up occasionally and moving my arms (but not lifting anything near 1 pound) when this happened. 10 minutes is my max for walking/standing these days.

Here's another odd experience I had in 2014.

In October I went to the ER for spontaneous (and very bad) diarrhea. Gross, yeah. They never figured out what caused the diarrhea, but discovered a UTI and that my potassium was low but not critical. My tachy was ridiculous due to sudden dehydration and low potassium, doing a roller coaster type thing between 130-160 for most of the next 24 hours. They did manage to get it down about 10bpm after 3 bags of fluid. I got worse. Asthma attack happened. VCD happened. Inhaler was not enough. Couldn't take more nebulizer because of tachycardia. Couldn't keep down food or liquids. Passing out repeatedly. Managed to communicate all of this to the Head Physician rather than the doctor who had been managing my case and insisted on sending me home anyways, and eventually they admitted me to the hospital for the next 26 hours.

The interesting part: I ended up being put on extremely low oxygen for the night after I continued to have shortness of breath and couldn't be given asthma meds. It was a miracle. My tachycardia went away completely within a few hours, so did the shortness of breath. I had a few arrythmias due to antibiotics (typical for me) but otherwise, I had zero symptoms while on oxygen. I could sit, stand, walk, talk, without any problem whatsoever. It felt to me as if I didn't have dysautonomia anymore. I was taken of the oxygen about an hour before I went home, and I continued to feel great (despite the infection and antibiotics) for about a week afterwards. My mom was with me throughout this entire affair and told me that I looked (skin color and energy wise) better than she had seen me in a decade or so. Also, no blue lips (which is a common thing for me.)

TL;DR Oxygen therapy at hospital (at 2%) temporarily 'cured' my dysautonomia, I fainted despite having near 'perfect' BP and HR numbers, periods continue to be evil and make dysautonomia 10x worse, medications that lengthen the QT interval kick my butt, and dysautonomia clinic doesn't know what to think about this (except for the period thing— anyone well informed seems to know about that connection these days, which is nice.) P.S. Liquid potassium tastes worse coming back up, if that's even possible.

[looneymom]

When you said that oxygen seemed to make a difference in your symptoms, it made me think about iron. Iron carries oxygen to your cells. Could you have an iron defiencey problem?

[issie]

If you lower the heart rate too low and there isn't enough blood getting to your heart and head, there is also a lack of oxygen getting there. Sometimes the tachy is a good thing when we are having blood flow issues. If you are if a certain subset type - HyperPOTS and possibly low flow. That can explain it. With me I have a higher bp but am more sensitive to the drops which may only put me to a normal bp. With a Hyper subset, many of us also have MCAS. This can cause what feels like POTS symptoms but is due to mast cell degranulation. Can explain the asthma too. Lots of threads on this forum about this.

Issie

[Synthem]

Looneymom, that is a good point and haven't thought about that. My mom suggested yesterday to have my iron levels checked and I should be doing that soon, because I've had that problem once before in life and it's definitely possible that could have a part in it. I'll definitely keep that in mind when I get the labs done.

Issie, it's interesting that you bring this up because I have been thinking about that a lot lately. I think the blood flow is a problem because having a low heart rate tends to make me feel worse. I only take enough beta blockers to keep it from hitting 130-160 on a daily basis, but if for any reason it's lower than mid-90s, I feel wretched. Usually though that corresponds with asthma flares and by the time I use my inhaler, my heart rate is back up and I feel better for it. HyperPOTS is something I've suspected for about a year now, but haven't been able to get any of my treating docs to consider/diagnose/treat for that. Same story with MCAS, I have lots of symptoms that sound typical of that, some of them since I was a kid. I may end up seeing a few new people this year to talk about those two things.

Blood flow I think is definitely a problem for me, we know I have poor circulation but they're not sure why . . . also I have 'thick blood' not good for my flow. Whatever that means. It's one of the mysteries my docs are still confused by. I read the info about protomyxzoa and found the part about its affects on blood and circulation interesting, for that reason.

[issie]

If you have MCAS beta blockers can make it worse.

Some of the people I've researched with have wondered about too thick blood. I have found, for me, using things that thin down the blood help with my POTS too. I use Turmeric and ginger and it helps with pain too. Some people with MCAS use a baby aspirin to cause a slow release or degranulation. The idea is that you may avoid a massive dumping with a slow release. Trying this didn't work for me. I felt worse on it. I seem to have to thick blood too and the presence of biofilms possibly could explain some of this. My mom had problems with blood clots several times in her life. That was one thing that contributed to her death. So I for sure want to do everything I can to prevent this.

Issie

[Singout]

Thanks for this, Bird, I have the same problem. I got neurally mediated hypotension (not POTS, just low BP) over a year ago with a bad M.E. crash and have been housebound ever since due to the (old) fatigue and (new) lightheadedness. The unsympathetic (at least to M.E.) BP specialist here put me on Florinef, which raised the BP numbers but did nothing for my symptoms.

Then also Midodrine when I pushed him (I wore flight pants to the appt!) and small but not larger doses of that seemed to help a bit, but not totally--today is a super-bad day, and it's been getting worse over the last few weeks. He was reluctant to put me on Midodrine b/c he's only interested in the numbers, not the symptoms. Sigh. Looking for ideas to take in that he might consider. Good to hear about the oxygen therapy.

[Katybug]

Early on in my relationship with my pots neuro, he told me that there is research (older research) that showed that there was not a direct correlation between people's symptoms and their "numbers". He said one theory is that a sudden split second change in bp or HR may cause a syncopal event but by the time the vitals are taken the numbers have changed again.

It's why he does his own ttt, even if you've already had one. He has equipment the takes constant HR and BP whereas apparently many ttt have readings taken only at intervals. When he did mine, my heart rate steadily climbed and then stayed steady around 142 but there were 2 moments when I had signify and sudden drops in bp that returned to normal with a couple of seconds. But the drops were enough to make my knees buckle both times even though it was only for seconds.

[Singout]

That's really interesting, it was several brief drops in my BP (although I couldn't feel them) that got my TTT doc to send me to the BP specialist. He couldn't explain them, however, and seems quite happy to (unhelpfully) shrug them off.

[ramakentesh]

In pots there is low stroke volume, reduced cardiac output and reduced blood flow to the beain despite mean arterial pressure being uneffected. You can faint with normal and even high bp

[Synthem]

Singout, I've found that compression garments (that's what 'flight pants' are, right?) are invaluable to me when conventional blood pressure therapies don't help my symptoms. Although it doesn't make a notable difference in my numbers, it can be the difference between being able to do physical activities like going to the grocery store without a wheelchair, walking around the house, etc . . . and being stuck in bed.

Although, a word of warning from my personal experience to anyone reading this who thinks about trying compression stockings/leggings/etc: people seem to have a sweet spot when it comes to the compression level. Too little and it does not work, but too much compression and it makes them worse; and the right amount of compression may vary day to day based on various factors like your blood pressure and the weather/altitude. I know a couple of people who are like this, so it doesn't seem to be a just-me kind of thing. Take that with a grain of salt, though.

Katybug, I think your neuro has a point about the quick fluctuations in BP/HR. I often think that if someone hooked me up to a machine that could take constant readings of my blood pressure down to the second, I would have many of those little 1-2 second drops. That's definitely what feels like is happening, some of the times. I know my heart rate does that with tachy. I wear a polar sometimes and it'll shoot up for all of a second or two, then normalize. But it's enough to kick my butt.

Ramakentesh, that makes a lot of sense and would explain a lot. I'm not sure why my doctors are so convinced that there's a 24/7 detectible connection to numbers and symptoms. (shrugs) I'm not sure about the science, but doesn't exact blood pressure vary throughout the body, anyways? Things I think about.

Issie, turmeric is my best friend. I think I'm one who feels better with mild blood thinners, but maybe it just gives me peace of mind.