@HImom Hmm, no, that hasn’t been ruled out. I still meet with the cardiologist again next month, so will research it a bit and ask if he doesn’t bring it up. Thanks for the suggestion. I definitely would prefer a return to normal if at all possible. If not, then just knowing things is helpful.
If anyone else has suggestions, feel free to let me know. This thread has been useful for me far beyond what I had hoped for.
Generally, MDs skilled in dysautonomia are the ones most helpful in POTS (Postural Orthostatic Tachycardia Syndrome). Both my kids had and still have it. H has it mildly and I have it a bit. It was challenging finding folks who know about it and can treat it properly. As I mentioned, Peter Rowe at Johns Hopkins is very good at it.
Good luck! After nearly 2 decades, D has finally found a cardiologist who is willing and able to try to help her address her POTS issues. Stanford didn’t have anyone they recommended, but the USC rheumatologist she’s been seeing for a number of years finally referred her to an informed cardiologist who thinks it may help improve her stamina substantially if the POTS can be properly addressed. We are cautiously optimistic.
There could be alot of causes for what you are experiencing but GERD can do it as well.
GERD can cause increased heart rate with exercise? I thought that was heartburn related. This isn’t heartburn related.
My daughter was diagnosed with atypical asthma that was not asthma but severe reflux. If you are refluxing you can be aspirating and not know it. Years and years of doc visits and er’s.
GERD can cause “silent reflux,” which I and many folks with lung conditions have. I have NO heartburn but I do have my breathing condition worsened when I reflux (even though I can’t tell). Having a 24-hour pH probe is the “gold standard” to finding out if you are refluxing, even though you don’t know it. It can be ordered by your lung doc or primary care or a GI doc.
I agree that the PH probe is the gold standard. Barium test can also show refluxing. The refluxing was affecting the pulse rate. From personal experience many doctors except one ever considered this. The pulmonologist was always baffled yet the inhalers helped to a degree. The heart tests were normal. And refluxing isnt necessarily acidic which is why medication doesnt neccessarily work.
Doctors are trained to look for horses when they hear hoofbeats, not zebras. You may be in zebra territory, where I have lived with my family for some decades now. On the other hand, I know nothing about radiation and things that can’t be treated, but at least these things CAN be tested for and SOME can be treated for better symptom control.
Creekland I am glad you got the heart tests done and they were okay. At least now you can rest easy knowing you have ruled out the big, scary “horses” hoofbeats (to use HImom’s analogy. I wish you luck in sorting out whether there are zebra’s involved or whether this is still just radiation.
I think radiation is the zebra. Then couple that with my physical body not reacting typically to many things. The fun one yesterday was my BP. Understandably (for me) it was high going in (155/88). It’s high at almost any doctor appt (not elsewhere), mostly when I feel like I’m going to have a battle (since it was perfectly fine with things like carpal tunnel or donating blood - no battle). Nothing there is atypical (I think). But when the nurses were trying to find veins for the two different IVs - requiring four nurses and six different tries since my body likes to hide veins - the BP went down to 132/71 and continued lower into the totally normal range. I mentioned that surprised me given the “love” of various needles poking into and around my body. They said it surprised them too.
Who knows why our physical bodies do what they do?
I pretty much missed all radiation side effects, both at the time and afterward. I was told there’d be hair loss, burns, digestion issues, and my thyroid would die. None of that happened. I did lose taste (which returned) and lost any feelings of hunger (which still hasn’t returned) and the tumor stopped growing (phew, because by missing the side effects, I wondered if it would have any effect at all).
Then I have to get all these other things later (sigh). Hearing pulse, trigeminal nerve pains, probable miscues from the brain to the heart/lungs(?), word switching in conversation, and whatever else I’m forgetting, but those are the main ones.
Such is life I guess. It could be worse.
Still no regrets about checking out the heart. I was so certain I knew what this one was from way back with the Navy diagnosis that it took me by surprise when that was nixed. In the end I was right that I’ve pushed it so much over the past couple years just from being wrong in my thoughts that I would have been already dead if it’d been cardiac, but what if it were just a horse and I’d been lucky? I can return to pushing it now without worry that I’ll keel over on friends/family. It’s a good, safe, feeling.
FWIW, that’s how I know it’s not a case of being out of shape. No one I know (of my age) gets out of shape by doing what they do daily or weekly on a regular basis, esp when all one is talking about is stairs or hills - and they push it to keep doing it (and more) for years. Sooner or later one gets IN shape by continuing to do things. It doesn’t go the other way and lose shape from what one used to be able to do - not until well past 50 for these basic types of things anyway.
It’s an additional plus to think that my purposeful lifestyle changes likely made a difference from my family line too. I was beginning to think genetics made that all pointless and wondering if I should even teach about it anymore at school.
Doubtless the doctors will say I’m just out of shape - esp if those other thoughts (on here) are pretty rare and not universally known. So long as it’s not deadly, I’m ok merely disagreeing and learning to live with this. H is actually optimistic about moving somewhere flat. We’ve been wanting to get him nearer to sailing waters anyway. I’ve got a potential buyer for our remaining breeding herd (ponies). Changing life will eliminate most of the breathing problems for at least a period of time. I’ve learned to live with the rest and will just have to keep doing that.