Daughter So Sick Despite Decent Blood Pressure

[JuneFlower]

So I read somewhere that the good or bad blood pressure actually does not correlate with how badly people with POTS and dysautonomia feel. Many people still experience migraines, fatigues, abdominal pain and severe nausea and insomnia when their vitals are ok.

Does anyone know why? Does anyone else have this? How do I know all those bad symptoms are POTS related?

June

[gjensen]

June, if blood pressure was representative of how I felt, I would never have visited this board.

I have a decent drop of blood pressure when I first stand, but it normalizes and then rides just a little high. I get high blood pressure in my spells, but otherwise I have good blood pressure.

When I am upright, I still feel like I am going to faint. I am dizzy, short of breathe etc. In short, it says nothing about how much blood is getting to my brain. It certainly does not represent how I feel.

[Bigskyfam]

Same here.

[Becia]

And here.

[JuneFlower]

thanks everyone. Ok I thought this might be true. I kept hoping I would find a direct correlation. Then that would mean, once her pressure got better, she would get better. But no….

June

[Christy_D]

Same for my son, bp/hr and had no correlation to how he was feeling. I had a chart, tracked it daily, but it did not provide any insight. Symptoms could be horrible and vitals just fine, no rhyme or reason.

[Chaos]

Conversely my BP/vitals can be bad and I actually don't feel terrible at times. But yes, my vitals are frequently fine and I have a boatload of symptoms.

That is one of the reasons I found my cardiologist wasn't as helpful as my neurologist. Once my VS stabilized on meds, the cardiologist figured it was all good. Neuro seemed to be more aware of all the other symptoms that go along with POTS and knew that wasn't the case.

Makes me wonder if this phenomena isn't where the neuro-immune-endocrine part of this whole thing comes in. Seems like most of the POTS specialists focus on the cardiac and neuro aspects but the immune and endocrine pieces aren't being addressed. Think that's a big part of the picture they might be missing.

Edited April 2, 2014 by Chaos

[yogini]

how is her heart rate if BP is normal?

[Freaked]

Our systems have to work very hard to keep BP normal. So if my BP is normal, half the time it's cos my heart is through the roof and my blood vessels are constricted in weird ways. Still makes you feel lousy.

[LastUnicornLady]

I, too, can feel pretty bad even when everything points to "fine". Once getting on medication, my heart-rate stopped getting so high upon standing, but I was still having migraines, abdominal pain, nausea... the whole shebang. I just wasn't fainting as much.

[Chaos]

Someone else on here (Sue? Katybug? Can't remember, sorry.) pointed out once that their doctor had mentioned (regarding blood sugars) that although the number you observed upon testing might be fine, that there might have been a sudden or rapid drop that preceded that normal number which caused your symptoms and which you didn't see. I often wonder if that might not also be happening with our VS.

[bunny]

It depends how you define what a "good" or "normal" blood pressure is.

When I first started down the POTS/NCS journey, the cardiologists I saw tried all sorts of medications to make my body act "normal". The medications made the numbers look pretty, but I felt *******. After awhile of playing med roulette, I decided to skip them for a week and felt quite a bit better. Numbers looked bad, but I felt (relatively) good. The ultimate conclusion was that my body's normal isn't the same as the textbook normal. It was only then that I remembered what a frustrated hospital Dr told me after I woke up from a coma due to anorexia -- "Your body may look the same, but it'll never run the same way again. You might as well throw out the textbook because your body obviously hasn't ever read it." Probably the wisest and most accurate words ever spoken to a Dr to me.

I am curious if anyone else experiences something like this, where they find their body seems to work better at non-textbook normal values. Mine feels better on the low end of things, but it's a narrow window between low/feeling good and too low/feeling rough.

[Katybug]

Chaos - I don't know about blood sugar but my POTS neuro has said to me that research has shown that there isn't a correlation between vitals and symptoms. And he also has specialized equipment for his ttt that monitor constant bp and hr. Most ttt take periodic readings. He uses this specialized equipment because there are sudden severe fluctuations in both bp and hr that regular monitors can't catch. For example, during my test with him, my bp seemed fine the whole time, then all of a sudden at 37 minutes, it plummeted for about 5 seconds and then climbed back to a normal rate for more. My hr doubled at 3 minutes and stayed there. No one had ever captured my bp plummeting lime that before and we conjectured that it was because it happened so fast and only for a few seconds.

[JuneFlower]

yeah thanks everyone. It doesn't seem to correlate with symptoms. Her pulse is 100 or so or less now with all the meds she is on. It's still high but acceptable according to the cardiologist. She is seeing a neurogastroenterologist soon. So hopefully they will have another take on things. It's just there was one time where she felt awful and I took her b/p and it was non existent. I guess sometimes it is connected.

June

[Becia]

Bunny, I LOVED the doctors quote.... So much, I'm gonna use it myself, lol. Very true, our bodies are not by any definition normal according to texts and readings, our bodies are unique. Just like my HR will never respond the same way my housemates might (he's a super athlete, he gets headaches just looking at my HR sometimes when its up there... "No wonder you feel the way you do!")

[looneymom]

I'm sorry your daughter feels so bad. I think the connection to POTS is immune or Autoimmune related. If you just have plain old POTS and nothing else mixed in, then the POTS medications normally work. I have read this from several sources and MAYO told us the same thing on our visit. Even if this is the case, many patients still have a rough time of getting up and going. POTS is mentally and physically challenging on the patient and caregiver.

In the beginning, our cardiologist told us that it shoud take about a year and Tyler's body should get over this. That theory went out the door a year later after Tyler had been on medications and then caught the flu. His body never did bounce back. All I can tell you, is that I'm sorry that you are not seeing the results of a quick recovery. POTS is a rollar coaster of a ride. Don't give up searching for the cause.

[trappedat20]

It's funny I saw this post because I have been wondering the same thing. When I first got sick and was diagnosed with Dysautonomia my blood pressure and heart rate were all over the place. They were not consistent at all and didn't make any sense. Sometimes I would stand up or go down the stairs or something and my blood pressure would bottom out and my heart rate would soar. Other times I'd do the same thing and my blood pressure would be completely outrageous and through the roof. Around early December I started working out in the Gym and later that month I started going to chiropractor which I have now quit. My blood pressure has been reading fine ever since. Here's the thing though, my dysautonomia has actually progressed a lot. I feel a lot worse than I felt a few months ago. The only screwed up vital signs we've been able to catch is that my heart rate is insane and likes to be normal at rest, but when I do something it thinks it's perfectly acceptable to go to 200+bpm to the point I stop breathing and either have a seizure or pass out.

We're really looking at that right now but the thing is I know that if we normalize my heart rate it will probably stop the seizures and passing out, but I'm still going to feel just as crappy. So, I think it's related to a certain point. In terms of passing out, seizures ect. your vitals will usually read as something being off ( in my case it's my insane heartrate), but besides that you can feel like absolute crap and have your vitals read normal. I miss when my blood pressure was insane because I wasn't having seizures back than and people took me more seriously. I feel way worse now, only I look a little dumb when someone takes my vitals and my blood pressure is normal.

[Chaos]

Katybug- I was thinking that same thing. Unless we're hooked up to a beat-to-beat monitor like they use at the autonomic testing centers, it's impossible to know what's really happening with our VS. A once-and-done reading isn't going to tell us anything given how fast our numbers can change.

[JuneFlower]

Thanks everyone,

Rachael,

So my daughter has POTS for sure but also very low blood pressure. Sometimes she passes out. That is technically not a symptom of POTS. So I am still searching for answers. But even when her pressure and pulse are ok, she still very ill. I guess it is not really an explanation of the symptoms. I wonder if it is auto-immune. If so, what is the treatment? How do they know?

MakeMeErised- seizures are scary. I hope the neurologist gets to the bottom of that. I didn't know that a high pulse could cause seizures.

June

[trappedat20]

@Juneflower if your pulse goes extremely high than it's not pumping oxygenated blood efficiently and you're not really getting enough oxygen. If you're not getting enough oxygen you can pass out, or if it's bad enough have a seizure. It's related more to the fact you're not getting enough oxygen if your pulse is incredibly high. I'm not talking about like 150 or something. I'm talking about at least 200+bpm. At least. I don't know yet how high my pulse actually gets but when I've recorded it at 185ish it doesn't feel anywhere near as bad as when it's so fast I have the seizures so I imagine it must be incredibly fast. Only tests will tell though.

[yogini]

It is certainly possible to feel very sick with POTS and have your vitals (both HR and BP) normal. My doctors didn't realize this and when I first got POTS I spent months searching for other things that could be causing my symptoms. I am sure now for me it was "just" POTS; that doesn't mean that's the case for your daughter and you should keep searching for answers if you think something else is going on. I would also look at the side effects of the meds she is taking. Meds can cause a whole host of symptoms on their own.

[JuneFlower]

yogini- yeah we took her off of all her meds except the necessary cardiac stuff.

[yogini]

I am a big supporter of meds as they enabled me to get better, so I was not suggesting she should not take them or reduce them. Just pointing out that you may want to look into the side effects of what she is taking to see if they could be contributing to her symptoms.

[JuneFlower]

As I said above, she is only on Midodrine and Nadolol. We stopped anything else months ago. There was no change in her symptoms. Without the prior mentioned meds, her blood pressure is non existent and she passes out.

[looneymom]

Hi June,

Tyler has low blood pressure but he never passed out on us. However, when he was able to walk in the beginning, he would get very dizzy after about 5 minutes of walking. He said he just felt strange all over when this happened and he did not want to continue to walk because of how he felt. Some POTS patients do pass out. I always thought this could be a symptom because of low blood pressure. Our cardiologist was not knowledgable about underlying conditions in the kids. He had to learn along the way (with a mom doing constant research on other causes).

However, our cardiologist went to a meeting last year and was able to visit with other big name cardiologist (like Dr. Grubbs) that was treating POTS patients. I don't know if other cardiologist look for underlying causes. I had to take my son to other specialist. If you think this is autoimmune, I would research the symptoms to see if you could make a connection to a doctor that specializes in the area. It's frustrating trying to do this work but it has paid off for Tyler. I finally feel like I am getting some answers for Tyler.