RecipeForDisaster

I’m inadvertently trying this now - I have aseptic meningitis from IVIG, and was prescribed oral steroids for it (plus the IV pretreatment I always get). We’ll see what it helps! I’m starting with 10mg prednisone, which is probably not enough. I can take 20mg.

Oddly, I have stubbornly low BP regardless of position. I feel worse upright, partly because my BP is really too low to stand (I do anyway) and partly because of that decrease in cerebral circulation. My HR is similarly too fast all the time, though controlled with beta blockers now. To make things more complicated, I hate cities, traffic, traveling to hospitals, etc. and always have much better BP readings while there. It’s still trending down each visit, but 30 points or so higher than what I would be at home an hour after getting there.

I go to Brigham and Womens, and they did find HYCH. It doesn’t explain everything, but at least it’s a label. Still, one of my local cardiologists pronounced my TTT Doppler results as a normal response. It said "37% decrease in cerebral blood flow compared to normal"…. Umm…

They are worried about too much blood volume in heart failure. Knowing helps them to manage diuretics and stuff. The kidney disease may have been in reference to dosing a Med - many have special dosing in that case.

I’ve messed around with taking DDAVP the same day as fluids, before, after… I have to be a little careful because DDAVP and 2L fluids on the same day makes me swell up and get migraines. I hoped that would be the ticket - combining them.

IV iron helped my ferritin levels and anemia, but not really how I was doing. IVIG helps my neuropathy, but hasn’t helped the low BP/autonomic dysfunction and stuff. It’s only been 6 months and I’m supposed to give it 1-2 years. IV fluids seem to help me for a time period about equal to how long I run them - I do 2L a day, and if I stay connected for 36 hours, I am better for another 36 hours after that. It’s worth it, but not great. I really want to find my root cause, too. And I’d love to get my blood volume tested. I can feel my sodium dipping. It’s not a good feeling. I know I have to back off on DDAVP in that case, but I also get daily migraines if I take it daily. I pee far too often, unless I am getting fluids IV vs. drinking them, and then I don’t!

Did you have a blood volume test? I know I’d feel better with daily fluids, but I have to watch it, so I have some veins left to use for fluids, iron, and IVIG. I don’t think mine leak, but while I’ve cleared a nephrology workup, I just seem to discard anything I drink, no matter how salty.

I need IV fluids, too. I use DDAVP which helps somewhat, but I have to be careful of low sodium levels. I eat 15+ grams of salt a day(along with 4L fluid orally), but still run low. I didn’t tolerate fludrocortisone due to migraines, edema, and not a whole lot of benefit, but that’s unusual. I’m on a slew of other meds, too. I use IV fluids when things are really bad - because I can’t have a PICC or port.

I’m very interested in having this done. I haven’t had any doctors interested enough to order it, partly because they don’t know what they’d do with the results.

Good to know. My friend loves her carvedilol. I can feel palpitations at a HR of 70, but they are worse and different over 90. I happen to do pharmacy for a living I hate being on this side of the bench…

Yeah, I always look at Cost Plus, but they don’t have all meds yet. Ivabradine is $85 a month copay. I can ask my cardiologist about Canada, but we went back and forth for months about how I could or could not swing it, so I am betting he doesn’t want to do it this way. I have to be really careful with my asthma and am on low doses of both my beta blockers - I also have to try not to lower my BP at all. It’s tough to rock the boat. I also really like the anti arrhythmic property of the acebutolol, which I take in the morning, because I don’t feel PVCs during the day anymore.

I only take acebutolol in the morning, because it disrupted my sleep, too. I take metoprolol at night. I am still thinking about trying ivabradine, maybe through a Canadian pharmacy - though I think my doctor would have offered that if he deemed it an option. He knows I didn’t try it sheerly due to cost. I can’t use bystolic because of asthma.

Me, too - if I listen to the warnings, which get "louder and louder", I don’t usually pass out. That makes me sound less sick than I am. I am frequently having to sit or abruptly lay down to avoid passing out. If I don’t, I’ll lose my vision, hearing, and ability to stand, usually in that order - though lately it’s been a nice surprise to see which one will go first. That normally happens in public or in other situations where I really don’t want to sit on the road, or something like that.

Another non-POTS-er here - I have dysautonomia and HYCH, plus autoimmune small fiber neuropathy and lots of other stuff. It can be called orthostatic intolerance, orthostatic hypotension, etc. I have a lot of labels, but POTS isn’t one of them. I would agree that the other stuff is slower to diagnose… but most of the treatment overlaps.

For me, yeah, not really. I think it it was too slow, they would have been impressed. I think they are more ruling out dangerous stuff, at least in my case. Without having data showing whether you’re standing or sitting, I can’t imagine they could use it for POTS. I bet they’d be excited about a HR in the 30s, particularly if it’s a big, dramatic drop like that! I don’t have POTS, but do have HYCH, formerly known as just dysautonomia, orthostatic intolerance, etc. They diagnosed this with cranial Doppler during a TTT. I had 2 inconclusive TTTs before that… I didn’t pass out during them, but I usually don’t when I am stressed from the trip to a big city, parking woes, etc.

I wouldn’t get my hopes up that something helpful will be seen. I guess you don’t want it to… I’ve worn these for a month at a time 3 times, and my HR hit 180+ from walking around the first time… no one was concerned. They won’t be able to see what you’re doing or the position you’re in, although you can hit the button and record that info in the diary. They are usually looking for arrhythmias and really out of whack rates (although I am surprised 180 doesn’t qualify). I had a lot of PVCs, and they did care about that. I also had a run of ventricular tachycardia, and bigeminy. Again, those got their attention, but my usual dysautonomia stuff was not really of interest to them. YMMV!

They are all at least a little bit useful, or they’d be out. A lot of them write 1-2 Rxs or I like their hospital system or something. A few are really trying. I’m just a complicated mess, I know that.

I have 2 EPs, a couple of plumbers, and 6 total cardiologists. None have been too helpful on this… but one did recommend ivabradine. When it turned out to be too expensive, he put me on acebutolol during the day instead, and it helps somewhat. I still take metoprolol at night. The acebutolol has helped my PVCs a lot.

I can’t drink any wine, even homemade/natural, and I don’t do well with one whole drink of any alcohol. I also feel worse if my HR is over 75-80 while resting. I’ve heard the same - "normal HRs go up to 90”. I ask if they can sleep when laying down with a HR of 90… also very low anxiety here. Interesting about the ivabradine - did it help the pounding directly, or just the rate?

I didn’t think ivabradine would help with pounding, just fast rate - if you think it helped, I may try it!

This is one of my most uncomfortable symptoms, which makes it hard to sleep at night. Beta blockers help, but not enough. IV fluids help the most. Anything being "off" makes it much worse - any kind of infection, lack of sleep, eating too much, etc.

Yes, mine is near the top of the range and I don’t know why (I sure don’t eat that much protein). Lactated ringers sticks around longer than saline does for me. Hopefully I’ll be able to get it again soon… it was on back order. I’m back to being nauseous, unfortunately. I ate as much as I could over the weekend! I almost feel back to my usual crummy self again - I finished my fluids mid day on Friday, so I’m not surprised. That is wonderful - I love to see people getting to get potential help, especially if it’s outside the box thinking,

Very interesting! Do you know where your usual serum albumin runs? Mine is on the high end. I’m getting IV fluids and have been for 3 days now - the nausea I’ve had for weeks is GONE. I want to eat! I never feel like that anymore.

Great advice. I’m more than a decade in, and since I have gotten worse, with more illnesses joining in over the years, it’s gotten muddier. I’m on so many types of therapeutics and see a lot of different specialists. I do know what helps, and that I’d be much worse off without these tools. One thing I did with my doctor list is to emphasize and prioritize things on the list, so they would know if it was just something I was mentioning in case it was a clue, OR something I really needed help with. I always try to go into an appt with 3 or fewer "big ticket" items - stuff I desperately needed solved, tests I needed ordered, etc.

Yes - I’m getting my fluids now and each liter will be run over nine hours! It makes a huge difference for me. An hour or two for a liter would not help me much if at all.