Low blood pressure

My daughter has suffered from POTS symptoms for a long while now. Current dr is now trying to alleviate some of those with medication bc previously we were just waiting for things to clear up as we treated Lyme. Four years later, the POTS symptoms remain. As stated in my previous post about thyroid and adrenals, we should be getting some lab work back soon which will hopefully shed some light on where she stands there.

However, there is another issue which hasn’t successfully been addressed for some time now. Blakeley’s blood pressure stays around 90/65 or around in those numbers consistently. She feels like crap all the time (weak, fatigue, dead body, etc). Also like her “body has the feeling right before you pass out.” I have read old threads about Lyme and low BP but am not really finding answers. She is taking 1 mg Florinef but BP remained the same. Drinks a ton of water only, adds great amount of salt. Dr prescribed midodrine which raises standing BP; however, Blakeley has not tried it bc it says not to take when lying down. So, if half her day is spent lying down, i don’t understand how that would work.

Any guidance or has anyone seen success w midodrine? Any other options? Do you know if a BP that low would make you feel like doing anything for 5 min is going to be a struggle?

POTS is tricky, and the standard advice has changed a lot even just over the last decade, making most doctors and websites ill-informed (even if they were well-informed about it ten years ago).

What was her blood pressure before she became chronically ill? Was it ever taken at home back then, or only during doctor appointments (when it's likely to be elevated due to "white coat syndrome")?

I ask because my BP has been about 90/60 my whole life, as has my dad's, and he's never had anything resembling POTS. Mine does not get higher when I am doing well. If something happens that makes it decrease (like a major barometric pressure drop, or significant dehydration) then POTS symptoms do occur for me, so maybe people with low baseline BP are more susceptible to POTS, but it's also just normal for some people, so would not necessarily need to get higher for symptoms to abate, depending on the person's baseline.

Is it possible that Blakeley is over-hydrating? Even with the right amount of salt (a lot!) too much water can deplete electrolytes and therefore not increase blood volume (which is the goal for POTS sufferers). I made this mistake for a long time, and my symptoms turned around when I increased salt and decreased water. The rubric my POTS specialist recommended was my weight in pounds divided by two, in ounces, per day. (So if I weigh 120 pounds, then I should have 60 ounces of water per day - plus more if I sweat.) I have read that this is not the rubric for everyone, and that people with obesity should drink less than this rubric suggests. Plus at least two teaspoons of salt.

My improvement from POTS occurred at the same time that I improved in most of my other symptoms as well. Around the same time, I did the following, which got me to about 85% of my pre-tick health in the course of a month. I'm outlining all this to say that I'm not sure which element had the most effect, because I did them all at the same time, and all can have a positive impact on the nervous system and calm an over-reactive system.
- switched to a low-histamine diet and supplements
- started taking curcumin and quercetin
- increased salt intake and decreased water intake
- started moving my body regularly with recumbent restorative yoga (and then regular restorative yoga once I was no longer bedbound)
- DNRS limbic system retraining
- stopped revving up my immune system with immune boosters and switched to immune modulators (these aren't hard-and-fast categories, but basically I stopped elderberry, echinacea, and olive leaf, and added a medicinal mushroom mix)

My dysautonomia specialist was open to prescribing midodrine, florinef, and other drugs people try for POTS, but she said they work about as well as placebos (so they DO work, just not in a surefire way) and that most of her patients improve fast once they deal with their over-taxed nervous systems and balance their salt and hydration properly, and end up not needing to try medication.

In the early 2000s, researchers though that exercise helped POTS patients improve, but later studies showed the opposite. Those of us with post-exertional malaise know very well that exercise can do much more harm than good depending on the context! But my specialist was careful to recommend whatever type of movement your body can manage, so as to keep lymph and blood circulating well, without wearing yourself out. If that means massage or sitting on a porch swing (rebounding) then that's fine. If she can do restorative yoga or light pilates or even dancing while lying down, then great. Eventually moving on to a few low yoga poses or other light exercise, even for a few minutes, could be helpful. This is also important to prevent deconditioning.

The general recommendation to do nothing and wait for it to resolve just isn't sustainable unless you want to lead a life from your bed, and should not be considered medical advice! A few years ago, I was admitted to the hospital because I could not sit up in bed without my heart rate shooting up to 155, and they tested me for whatever they could think of. When they didn't discover anything they were familiar with, the head of cardiology at a major Boston hospital read to me from the Wikipedia entry on POTS on his phone (facepalm!) about how if I just wait, then POTS will resolve on its own. This is why people with POTS spend months or even years on waiting lists to see one of the few legitimate dysautonomia specialists! But I finally saw one, and she was helpful, but her advice was simple.

I meant to add also that if you want to avoid drugs, and/or want a route that can be tried very gradually, then another way to raise blood pressure is by supplementing licorice (not DGL, just the regular form). Also Panax ginseng, St. John's Wort, guarana, vitamin E, and vitamin K.

It would be helpful to look into her supplements to see if she's taking anything that decreases blood pressure.