Blood pressure fluctuations

I’ll try my best to lay everything out clearly for you all.

My mom has always been someone with low blood pressure—usually sitting around 90/60 or up to 105/60. About four months ago, she had carotid artery surgery, but during the procedure, she actually suffered a mini-stroke. On the surface, it didn't seem to leave any lasting damage. The side they operated on recovered nicely, though the other carotid is about 50% blocked.

Then, about two and a half months after the surgery, she hit a rough patch where her blood pressure went totally haywire for about ten days. We were watching right in front of us as it would spike up to 200/100 and then plummet back down to 100/60 within thirty minutes. I can't even begin to tell you how exhausting that is for her. After those ten days, things finally leveled out. We did the whole works—heart tests, kidney checks, thyroid, blood work—and everything came back clean.

Things were fine for three weeks, but now it’s starting all over again. Given her recent surgery and the fact that she’s lived with low blood pressure her entire life, the doctors just gave her Tinidil to take as needed and nothing else.

The problem is, she’s allergic to most medications. Because of that, nobody wants to risk prescribing anything else for her blood pressure without extensive testing first. But honestly, trying to run tests while her pressure is swinging wildly every 10 or 15 minutes just isn't an option right now.

So, here’s what’s weighing on me. If I took her into the hospital, would they actually be able to do anything better than we are at home? All the tests we were advised to do have already been completed, and since she can't take other meds, I feel stuck.

Or should I just keep a close eye on her at home and hope this crisis passes quickly?
To be honest, I'm terrified that something serious might happen to her. 😢

It must be incredibly draining and frustrating for your mother and your whole family, but every hypertensive crisis is an emergency. You need to take her to the hospital or the ER every single time one occurs, especially if she shows severe symptoms like dizziness, chest tightness, pain anywhere, or fainting... the risks involved include stroke, heart attack, kidney failure, or heart hypertrophy leading to eventual decompensation... this definitely needs medical treatment... I wonder how they haven't identified the pattern of oscillations yet? Have they ruled out a pheochromocytoma? To me, this looks like a textbook case... and perhaps there is an issue with the carotid sinus, which contains those baroreceptors responsible for blood pressure regulation

Sam Hall15 said:It must be incredibly draining and frustrating for your mother and your whole family, but every hypertensive crisis is an emergency. You need to take her to the hospital or the ER every single time one occurs, especially if she shows severe symptoms like dizziness, chest tightness, pain anywhere, or fainting... the risks involved include stroke, heart attack, kidney failure, or heart hypertrophy leading to eventual decompensation... this definitely needs medical treatment... I wonder how they haven't identified the pattern of oscillations yet? Have they ruled out a pheochromocytoma? To me, this looks like a textbook case... and perhaps there is an issue with the carotid sinus, which contains those baroreceptors responsible for blood pressure regulation

Her primary doctor gave her an emergency referral for inpatient care at internal medicine to figure out what was causing everything during her last episode. So she goes there, they look over the labs from the ER, and then they just send her home because they claim they don't know what else to do. Honestly, I was already losing my mind by then.

She’s been to the ER twice now. They ran blood work, did chest X-rays and heart scans, gave her Tinidil, and sent her right back home. And get this—we were sitting there waiting for two or three hours before that, and I actually collapsed in her arms a couple of times.

When I call the emergency line, they basically tell me there’s nothing they can do, other than drive her to the hospital just to get more Tinidil.

I mean, I am totally flying blind here! 😢

All those symptoms—the dizziness, the chest tightness, any kind of pain (headaches, etc.), or those brief moments where she blacks out for a few seconds... yeah, she's got them all.

Wait, what exactly is a pheochromocytoma? Let me go Google that real quick.

And about that "maybe they messed up the carotid sinus" part—how would I even know if that's what's happening?

The thing is, it isn't constant. She'll be fine for a few weeks, and then it just hits her again. Right now, I'm just waiting for it to pass... She's lying in bed taking the normabel (per the doctor's orders), and I'm checking her blood pressure every 45 minutes while she deals with these massive headaches and tries to sleep.

I am seriously on the edge of a breakdown. I'm at a loss for words and I have no idea how to help her.

Dr. Lovricevic was her surgeon, and he mentioned that based on the Color Digital results, everything looks okay for now, but he admitted we might never actually find out why her blood pressure is swinging like this. 😢

So I just spent some time looking up what a pheochromocytoma actually is. I was at the nephrologist's office earlier with those lab results from the ER.

The nephrologist mentioned that the blood work from the emergency room looked fine.
But it makes me wonder—should he have picked up on anything based on those initial tests, or is this something that definitely requires more digging and extra testing?

Look, darkpuma5, based on what my own family has dealt with, I’ve got to be blunt: you need to pull some serious strings immediately. You either find a heavy hitter—someone with real clout—to get you admitted for a full, exhaustive workup, or you bypass the system entirely and go private. Waiting around for some overworked doctor to actually care about your case is a gamble that usually ends in tragedy. And when it does, nobody takes the blame, leaving you or your loved ones to deal with the permanent fallout.

The only other move is to play dirty. Be relentless, be a nuisance, and start threatening to call the local news or grab a camera crew. Maybe then they'll suddenly find the motivation to act... but honestly, it's a crapshoot, and fighting that kind of battle is absolutely soul-crushing.👎

Angela Wright said:Look, darkpuma5, based on what my own family has dealt with, I’ve got to be blunt: you need to pull some serious strings immediately. You either find a heavy hitter—someone with real clout—to get you admitted for a full, exhaustive workup, or you bypass the system entirely and go private. Waiting around for some overworked doctor to actually care about your case is a gamble that usually ends in tragedy. And when it does, nobody takes the blame, leaving you or your loved ones to deal with the permanent fallout.

The only other move is to play dirty. Be relentless, be a nuisance, and start threatening to call the local news or grab a camera crew. Maybe then they'll suddenly find the motivation to act... but honestly, it's a crapshoot, and fighting that kind of battle is absolutely soul-crushing.👎

Ugh, look... It’s not like I’m just sitting here with my hands folded waiting. 😢

I actually took her to a private cardiologist because that was the recommendation, given how bad her vitals have been looking lately. Honestly? The exam turned out great. It was such a relief to see that her heart and the surrounding area are actually in pretty good shape.

But we were told she needs to see a nephrologist ASAP. I called the specialist over and over, and after being brushed off for two days, our primary care doctor (after three separate calls!) finally gave us an emergency referral. We managed to pull that off too, even though they originally tried to schedule us three weeks out. So, we've ruled out kidney issues.

Then we were told to consult with her surgeon. I actually ended up ditching work for a day just to corner him at the hospital. I know, I know—it feels tacky to hunt doctors down like that, and I felt so embarrassed doing it, but he was incredibly understanding. He actually sat down to talk to me, gave me some guidance on what to do next, and told me I was doing the right things.

Next step: we went to a private clinic for thyroid hormone testing because we wanted fast results to catch everything in time. And guess what? Those levels are normal too.

Now I’m calling ERs and they’re turning me away.

Look, money isn't even the issue here. I don't have a fortune, but I'll spend every last cent I have if it makes her feel better. I'm just stuck. I don't know where to turn anymore. I need help. 😢 Where do I go? Who do I talk to?

darkpuma5 said:Ugh, look... It’s not like I’m just sitting here with my hands folded waiting. 😢

I actually took her to a private cardiologist because that was the recommendation, given how bad her vitals have been looking lately. Honestly? The exam turned out great. It was such a relief to see that her heart and the surrounding area are actually in pretty good shape.

But we were told she needs to see a nephrologist ASAP. I called the specialist over and over, and after being brushed off for two days, our primary care doctor (after three separate calls!) finally gave us an emergency referral. We managed to pull that off too, even though they originally tried to schedule us three weeks out. So, we've ruled out kidney issues.

Then we were told to consult with her surgeon. I actually ended up ditching work for a day just to corner him at the hospital. I know, I know—it feels tacky to hunt doctors down like that, and I felt so embarrassed doing it, but he was incredibly understanding. He actually sat down to talk to me, gave me some guidance on what to do next, and told me I was doing the right things.

Next step: we went to a private clinic for thyroid hormone testing because we wanted fast results to catch everything in time. And guess what? Those levels are normal too.

Now I’m calling ERs and they’re turning me away.

Look, money isn't even the issue here. I don't have a fortune, but I'll spend every last cent I have if it makes her feel better. I'm just stuck. I don't know where to turn anymore. I need help. 😢 Where do I go? Who do I talk to?

Essentially, you need someone who will actually sit down, organize all these test results, and make sense of them. The real headache is that there isn't a single doctor overseeing her care, but honestly, that’s just how the entire American healthcare system works.
I don't get why they aren't hospitalizing her for a full, thorough workup; maybe some geniuses in a boardroom will finally connect the dots from all those scattered files.
It might be worth re-running all the tests while she's in that "good" phase, then doing them again once the symptoms flare up. You'll likely see a discrepancy, and that's usually where the answer hides.

I'd suggest trying the thyroid hormone panels one more time. My old man deals with similar stuff, and he had his levels checked twice—once they looked fine, the second time they were absolutely off the charts. His blood pressure fluctuated too, though not quite like your mom's, but his resting heart rate would spike to 130 bpm out of nowhere. He was also taking normabel, but it didn't do a damn thing for him.

Diagnosing a pheochromocytoma via standard blood work isn't straightforward. While technically possible if you test catecholamine levels, that isn't part of a routine panel, so I suspect your mother hasn't had those specific tests done. Another factor is that pheochromocytomas cause spikes in blood pressure; if the blood isn't drawn during one of those hypertensive episodes, the results might come back normal. A simpler alternative is testing urine, as the metabolites produced by the tumor will show up there. If seeing a nephrologist is difficult right now, perhaps ask a primary care physician to write a referral for lab work—ideally a 24-hour urine collection.
The other possibility is carcinoid syndrome, where a tumor produces excess serotonin, leading to hypertension, headaches, nausea, and breathing issues... if you want to rule that out, you should check serotonin levels...
Good luck, and please keep us posted on how things are going, okay?

Quick update on where things stand. My mom is totally siding with Dr. House on this one—it’s all just so confusing. 😉

Her first major blood pressure spike happened back in May 1999. It lasted about a day; they stabilized her at the ER and sent her straight home. She actually drove herself there, and we ended up carrying her back inside!

After that, she’d have a spike maybe once a year. They’d bring it down at the ER, and everything would seem fine.

The thing is, for the last 20 or so years, she’s had blood in her urine, and nobody has ever been able to figure out why. Finally, a really sharp nephrologist at the Mayo Clinic decided enough was enough and insisted it was time to get some real answers. She spent three weeks undergoing testing at the Mayo Clinic, where they were constantly running urine tests and doing every scan imaginable. I can look through her records—she has all the results printed out on A4 sheets—just let me know which specific ones you want me to check. Long story short, out of all those tests, the only thing they found was that one kidney is smaller and more cystic, but the function is perfectly fine. Nothing else.

During those scans, they also discovered that her left carotid artery is about 90% blocked.

That’s when all the carotid testing and surgical prep started.

While waiting for the surgery, if her blood pressure even touched 130, she wouldn't be able to walk anymore.

But those previous spikes used to be super RARE, usually lasting just a few hours or maybe a single day.

Right after the surgery, she had extremely high blood pressure for two days—hitting close to 200—but they managed to get it under control.

And now, we're dealing with these two episodes that last anywhere from a week to ten days.

I’m assuming they probably checked her adrenal glands during those three weeks of testing over at the Mayo Clinic.

But if it *is* a tumor, wouldn't that have shown up somewhere in the last eight years?

Given how much time has passed since those first symptoms appeared, a tumor seems less likely now—specifically regarding carcinoid syndrome, though a pheochromocytoma could certainly persist that long... I wonder if they ran a urine test for vanillylmandelic acid. Those hypertensive crises really need to be investigated and addressed, as they pose such a high risk for a brain hemorrhage... Is there a discharge summary available from when she was at the Mayo Clinic for those tests? If you'd like, feel free to send it via DM.

Sam Hall15 said:Given how much time has passed since those first symptoms appeared, a tumor seems less likely now—specifically regarding carcinoid syndrome, though a pheochromocytoma could certainly persist that long... I wonder if they ran a urine test for vanillylmandelic acid. Those hypertensive crises really need to be investigated and addressed, as they pose such a high risk for a brain hemorrhage... Is there a discharge summary available from when she was at the Mayo Clinic for those tests? If you'd like, feel free to send it via DM.

I'll scan everything and send it over in two or three days. I've been pulling 12-hour shifts lately, so I'm just physically wiped out. 😢

Thanks so much!

Regarding that VMA thing—I actually think they did run it, because I remember something about an "unusual acid" being mentioned. I'll get everything sent over soon.

I was truly moved by how much you care for your ailing mother.