Hi, everyone. I have been struggling with symptoms from my (always been) low blood pressure - headache, lightheadedness, episodes of sudden pre-syncope, fog, etc. I’ve seen many doctors, but they’ve done a lot of shoulder-shrugging and told me to drink even more water (and, side note, most have still never heard of EM).
When I was on the Mayo Clinic page about low blood pressure, I saw that they mention a specific medication - midodrine (Orvaten) - as a treatment for orthostatic hypotension, saying that the drug reduces the vessels’ ability to expand, thus raising blood pressure.
This bit about vessels made me think of my (primary) EM instantly, of course. So I thought I’d check in here - anybody have experience taking this medication? Or any other experiences to share with EM and low blood pressure?
Yes yes yes!!! Have not tried the medication, but about a month ago I passed out and fell and hit my head. I ended up in the hospital, confirmed orthostasis and tachycardia. I have always had low blood pressure too. Was given an abdominal binder to wear when I go to bathroom at night and some isometric exercises to do. But one of the most illuminating things was a visit w dietitian. I am supposed to have 10,000 mg sodium per day!!! Yes, that much!!! She said I shouldn’t even be drinking plain water, put a salt packet in it. Everything that goes in my mouth needs to have a little salt. Hydration is important too but those people telling u to just drink more water are missing half the equation which is SALT!
Oh my goodness, Sarah! Thank you SO much for this reply! (Apologies for not seeing it sooner - I used to get an email notification of replies here, but got nothing this time - and spaced on checking. Oops!)
The question of sodium intake has been floating around in my head in a major way this week! It’s really hard to find good info relating to raising low bp, since there is so much focus on lowering high bp. I was just talking to a friend the other day about how my whole life, it has seemed like general “for everybody” good advice to not eat too much sodium, not realizing that that advice might be harmful for some.
So reading your reply is one of those moments because it aligns with the only “something I could try” I’ve found, since doctors have been of little help. I hadn’t thought to speak with a dietitian yet, which I feel silly about because my diet tends to be very repetitive and light (thanks, GERD). I probably only get anywhere from 400 to 2000 mg of sodium a day, since I haven’t gone to a restaurant in ages and try to “eat healthy” at home.
So, two quick questions, if you see this:
How quickly did you feel better after upping your salt intake?
Would you mind expounding on what exactly those exercises are, that were suggested to you?
I have always had low blood pressure. My rheumatologist tried me on a blood pressure medicine. He said it might or might not work as a treatment for EM.
It was an epic fail. I almost collapsed on a walk with my family. The only thing I’ve been given for EM is Cymbalta and low dose aspirin. When I make myself take the aspirin, the least bump or scratch will rip my skin open. And it really doesn’t help that much.
Hi! I have EM and orthostatic hypotension, which was diagnosed after I passed out at home and was admitted to the hospital. The cardiologists there did a tilt table test and my blood pressure tanked – that’s how they diagnosed the orthostatic hypotension. My blood pressure is always low, but I’ve become more symptomatic since the EM developed and I think they’re connected.
I followed up with my regular cardiologist after I got discharged from the hospital. He’d already been having me increase my salt/fluid intake and now suggested trying a small dose of Florinef/fludrocortisone too. It’s a medication that tells your kidneys to retain more sodium and fluid, which boosts the blood pressure. I think it’s helped a little bit, along with the extra salt and compression socks.
My cardiologist also suggested walking for 30 minutes every day to improve my vascular “strength” and I think that’s helped both the orthostatic hypotension and the EM! I still get flares almost every evening, but they aren’t quite as intense. I suspect that for some people, there’s a connection between EM and autonomic dysfunction that causes stuff like tachycardia and orthostatic hypotension.
Wow, I’m sorry to hear that happened. It’s wild how little we know about how different treatments/meds will affect us individually. Do you by chance know the name of the medicine that made you collapse?
Birdsong, thanks for the reply! Seeing a cardiologist has been on my “next possible steps” list for a while, but I am in the US and healthcare is prohibitively expensive, especially when I have seen specialist after specialist and gotten no real help, but big bills over and over. I plan to see a cardiologist as soon as I can manage, and will definitely keep your experience in mind. It’s so helpful to hear people’s stories that help me be prepared and know things to ask for/about.
Summer has been rough, but I’ve been getting out for walks anytime the weather settles down enough. Sometimes getting up very early to walk before temps get over 70 (this is so hard for a major night owl, though! ). But we keep getting these heat waves/domes with highs in the 90s. Ugh. I did get a little stepper machine that I’m using on days I can’t go outside, and I hope it helps my circulation, but should be good for general health either way!
Hi LibbyK! I’m also in the U.S. so I hear you on the crazy healthcare costs, ugh. I was already seeing a cardiologist because I have a type of heart disease, so he started treating me for my low blood pressure/orthostatic hypotension issues too. The wait times to see specialists is a whole other painful thing – I hope you can get in to see someone soon! My cardiologist didn’t know much about EM, but the dermatologist who diagnosed me consulted with my cardiologist and they kind of work together. I feel pretty fortunate to have them both.
And I hear you on the summer heat! UGH. It gets hot/muggy where I am too and it’s miserable. I do try to walk as early in the day as I can, but even that is sometimes not enough to manage the heat. A stair stepper seems like a great thing to have – I’m going to look into this. It would be nice to have in the winter too when the sidewalks are snowy/icy.
Good luck and keep us posted about how you’re doing!
Hi. I also have extremely low blood pressure. Do you know if EM is related to or causes low BP? The earliest I can get in to see a cardiologist is 5 months from now. So crazy how long the wait is to see a specialist.
so.cal, I don’t know if EM is related or causes low BP, but my EM is very clearly genetic from my mother, and she has also always had low BP. Might be two separate things that I happen to have gotten from her, though.
I have a general update for the thread while I’m here: Turned out, I had a B12 deficiency that was becoming serious right around the time I posted initially last spring. It was causing BP drops that resulted in my fainting, and also caused migraines, dizziness, drunk/drugged feeling, tinnitus, palpitations, nausea, a variety of scary visual disturbances, and debilitating brain fog.
I have found that extra sodium (on top of lots of hydration, of course) like Sarah1 suggested above helps some with my low BP in general, but the fainting episodes and swimmy feeling didn’t really start to improve (they’re about 90% better now) until after months of significant B12 supplementation. Unfortunately, but unsurprisingly, EM remains unchanged.
So if any of you find this thread because you’re experiencing fainting (or those other symptoms) — get your B12 checked, if you’re able!
Look into liquorish root. My functional neurologist has me on it and just one dose a day has boosted my blood pressure enough to help. PS: Don’t get the DGL kind – it doesn’t have the right cofactors.
moments because it aligns with the only “something I could try” I’ve found, since doctors have been of little help. I hadn’t thought to speak with a dietitian yet, which I feel silly about because my diet tends to be very repetitive and light (thanks, GERD). I probably only get anywhere from 400 to 2000 mg of sodium a day, since I haven’t gone to a restaurant in ages and try to “eat healthy” at home.
). But we keep getting these heat waves/domes with highs in the 90s. Ugh. I did get a little stepper machine that I’m using on days I can’t go outside, and I hope it helps my circulation, but should be good for general health either way!