Is there a potential fix for this (medical)?

Parent Cafe
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Oh I don’t believe it’s being out of shape either, nor does anyone in my family. They’ve seen the decline. It just made sense when it was the progression of asthma so it’s something we learned to adapt to without questioning it much.

I’m pretty sure the reason it stresses me out so much is a control issue. I’m a problem solver. It’s what I do with my job/life/family. It’s what I’m the best at online with games (Lumosity) reaching the 99.9 percentile for all age groups even among their millions of users across the world. It’s what I tested best for in my AF days. If there’s a problem, I want it tackled and quickly solved in a way that makes sense. When/if I can’t do what I want to do to solve something I walk away and disengage. That’s rare. Most folks give me free rein - even at school. They like the results.

So… I get to medical issues and that’s not the way our system works. I have to convince people I’m even telling the truth, and if successful with that, wait for “whatever” while going to pointless appts (like the upcoming one where I’ll hear “pulmonary is fine”). Lots of waiting and I don’t even get to see my own results first, not to mention I’d have preferred a conclusive BO test rather than one where I could have told them there was unlikely to be an issue.

I agree that whatever this is isn’t common/typical or it would have been solved long ago. I wanted to dig in and figure it out, but got told no without further (vascular) testing. I made the decision to walk away and decreased stress. Life was good for a bit. Same health issues, but I learned to live with them and was stress free comparatively.

Then I jump back in thinking this one would be an easy no brainer health-wise and it’s back to the same old problem system-wise (maybe health-wise too). My brain wants to walk away and disengage. It can’t handle not being in charge, esp since it’s my body. It tells me it’s not worth it all - just deal with the health issues until I can’t anymore, then call it a good life and see what the next one is like.

It’s all interesting in the brain and cognitive sense and undoubtedly has given me far more compassion for others in similar situations (health-wise or other stress points), but at the same time it’s super frustrating to have figured the “brain” problem out and still not be able to “master” it effectively dealing with the system the way we must without stress building up.

So… the plan I can do if they tell me it’s an out of shape issue is test it. If they’re correct, I’ll get back in shape and be happy I was wrong. If they’re wrong, such is life. I’ll have my answer. Quite honestly, having come up with that plan has helped today be a better mental day. I suspect it’s because I’m back in control. My brain is relatively happy again.

If they suggest other things I’ll figure that out then based upon options, but their waiting forever certainly hasn’t helped my time frame for getting things checked out (more system issues).

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@eyemamom, does your son have a PFO (patent foramen ovale…i.e. hole in his heart, very common)? That is often associated with migraines, however, sometimes only cardiologists will check for this.

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Just wondering if you’ve ever been evaluated for Pulmonary Hypertension. Some of the symptoms seem to fit and it is not that well understood except by specialists. Anyway, just a thought.

https://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/symptoms-causes/syc-20350697

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@HImom it definitely sounds worthy of checking for and it seems like the echo I had should be able to rule it in/out, esp with the lung function testing they did earlier (showing lungs were fine).

This current dr (pulmonologist) I like as I haven’t (yet) gotten the sense of not being believed. The only reason I’d consider skipping his next appt is because it really seems they’ve ruled out pulmonary/lung issues - esp with no call regarding the echo. Maybe they don’t call though. Maybe it’s not as much of a “get going now” thing as the BT was even if something is off. I was hoping results would show up online, but no such luck. I prefer having results prior to appts so I can be better informed helping me know what questions to ask or what to expect, but again, that’s not always the way our system works.

If it’s radiation and a signal off in the brain I’ve no clue what can be done. At least that possibility makes sense. None of us can remember if we noticed the decline starting prior to radiation or not.

If it’s plain ole regular cardiac then I’d really just like to know. That’s possible too considering both sides of my family have had issues. As weird as it sounds, that might be my best hope since most of these things are fixable to an extent. My dad had his first heart attack at age 47 and is still doing relatively well at age 75.

And if it’s a weirder vascular issue (middle son has mentioned some as things he’d expect they’d check if all symptoms go together for one cause), then I’ll probably never get it figured out.

It’s not my call regarding what to check or when. Such is our system. I wish we had one where I could do research (as with this thread or reputable health sites), do various tests to check for things that seem possible, then take any results to the appropriate doctor when something stands out. With our system we have to convince doctors there’s a problem and hope they are concerned enough and knowledgeable enough in that area to order the right tests. Each test that comes back “normal” merely convinces them there’s nothing actually wrong, esp when there’s an easy answer like stress, hormones, radiation, or being out of shape. So many of my things potentially have a vascular cause that it boggles my mind (and stressed it out in the past) that they won’t even check for something along those lines merely because I don’t have fatigue. Even when I was doing PT for carpal tunnel issues, the therapist asked if they’d done various vascular tests when I told him what was going on. Nope.

In the end, they could be correct. It could be stress (but it should have gone away when I reduced stress or be better/worse under stress), hormones, radiation, or being out of shape. I’d just feel better with that diagnosis after testing for vascular things rather than just jumping to the conclusion.

But that’s all the old stuff. Time will tell if this follows the same path or not. If so, my appts will end next week and later this summer or early fall I’ll see if it’s an in shape issue or not. One way or another it’ll be figured out.

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@eyemamom–Has your son tried Aimovig? Brand new for prevention of migraines.

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@gouf78 - he’s going today to a new dr where he hopes to get a prescription for it.

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@Creekland I truly do understand what you’re saying about control etc in your post #160 and I am glad you aren’t just thinking this is due to aging.

But I do think it’s possible to be a little more aggressive in questioning your doctors. I totally get that you have to wait and hear the pulmonary guy say it’s all fine. But I also think it’s fair to call your primary or a cardiologist or someone and say, things are not getting better and I am getting worse and get an appointment ASAP. And if that doesn’t work, there is always the ER option.

As I believe I said earlier, the ER isn’t always for big, huge blood spurting emergencies. Patients get told to go there from a routine doctor appointment because the ER can run different tests quickly and hopefully come to a Dx or at least rule out the really bad stuff.

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@gouf78 - he just called. This new drug requires pre-authorization and it is a once a month injection. The other option is a kind of milder opiod taken like a listerine oral strip. So like Creek - we’re waiting once again.

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@eyemamom --out of curiosity has he ever tried taking daily Magnesium for prevention?

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@eyemamom, have they considered a patent foramen ovale?

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It actually is best diagnosed by a pulmonary hypertension specialist (rather than a pulmonologist or cardiologist) and I believe a definitive disgnosus requires a heart cathater. I have met several folks with pulmonary hypertension and they all had a very difficult time getting an initial diagnosis and the correct treatment until they found a good specialist.

There ARE treatments for pulmonary hypertension, IF that is what you have.

What area of the country do you live in? Are there good teaching hospitals near you? They tend to be more likely to have specialists that MAY know more about things like pulmonary hypertension.

I agree that it’s tough to wait and wait and have docs that dismiss or minimize your symptoms.

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@surfcity I think what you suggest could work well for a new problem. I’m pretty sure at this point I need to walk a fine line as there’s bound to be enough on my chart suggesting “stress” and similar. If I were to go to the ER or get demandy elsewhere and more turned out fine with tests, it would add to the “Boy who cried wolf” situation and I’d ultimately get nowhere if it’s something more unique.

I’m hedging my bet that it very likely could be an incorrect signal from the brain to the heart. I’m hopeful that the rapid rise in pulse from 65 to 145 with just minor exercise for < 6 minutes is enough to have them pursue something along those lines.

If there really were a wolf waiting to eat me, it’s already had plenty of chances to do so in the past. “Knowing” it was just a progression of asthma problem I hardly gave my body a break from anything with the thought that pushing the envelope would at least keep the lung capacity I have. NOW I have temporarily backed off. I don’t carry water buckets (much) any longer, etc. We aren’t hiking mountains. I don’t push anything beyond everyday walking/laundry and small stuff (for the most part) - just in case. The impatience of wanting to know is frustrating, but since I don’t think this has the highest odds (since I’m still here), I don’t want to put extra obstacles in the way of getting the rest looked at (if possible).

@Himom We’re in between Johns Hopkins and Hershey. JH handled the BT, but they were among those who felt vascular didn’t need to be checked out. Well… the radiation doc said it wasn’t radiation so I should check elsewhere. The regular doc said it was radiation so there was no need to check elsewhere. Neither gave referrals with “not my job” and “no need” as reasons. I haven’t had contact with either in over a year now. The regular doc is no longer there (as per a letter I got not long ago). The PCP I have now is local to me. She’s getting this (new) stuff investigated. I’ll see where it ends up walking that fine line mentioned above. I know she’s already predisposed to not think there’s an issue - esp cardiac/vascular because I asked. I don’t know if that will continue post echo and the pulse increase with the BO test or not. She’s the one who said I should just get in shape previously.

My semi back up plan (as in, something lingering in my mind as a possibility) is to head to med school lad’s med school once he has more influence and experience. He tells me he knows folks there who WOULD check it out. The difficult part to that is it’s 6 hours (one way) away and it’s not like it would be just a single appt. My mind also questions if he’s right or not. Let’s face it, if JH wouldn’t, why would anyone else? Would they just repeat the same things getting the same results (aka “not this”) and stop at the same point? That’d be a huge waste of time and money.

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Living in the shadow of Johns Hopkins personally and professionally - they aren’t THE best at everything. Some stuff they’re mediocre. So just because they didn’t piece it together doesn’t mean someone else won’t. My mother in law got a lot of radiation as a child and she has all kinds of weird autoimmune diseases now. Nothing really definable, but there is definitely something there for her as well.

@gouf78 - he takes magnesium and vitamin d. The nurse called the pharmacy to get his history of medicines, they looked at it and were like okay, you’ve pretty much taken everything.

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Just saying. The fact a little more exercise brings this on doesn’t mean it can’t be a fitness issue. A cardiac rehab patient, eg, would strain as she passed her bar, heart rate would go up, etc. . But the goal is to raise that bar. Regular walking won’t do that. Its a matter of raising your heartbeat a target amount for x minutes, over time.

You’ve described being winded carrying laundry upstairs. It’s still possible, ehethe r they find something or not, that youll need tbe right training routine.

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About migraines, have his eyes been checked by an MD specialist? More than routine.

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Well, Peter Rowe at Hopkins is very good at helping figure out if it may be an Orthostatic Intolerance issue. I’ve been very pleased with my emails from him. If he isn’t available, one of the folks he works with or trained may be. He was helpful for us with our kids. Their heart rates would be pretty irratic when they changed position. They and we weren’t “just out of condition” either. I would suspect they also have someone that can help if it’s Pulmonary Arterial Hypertension.

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@lookingforward I’ll ask what I’ve asked before. Can someone “lose” shape for minor things? I’m not looking to increase anything. I’m not trying to go from couch to 5K.

I’d like to be able to continue doing things I previously did, but am slowly losing the ability to do from mountain hiking on down to these really small hills. Couch potatoes come to our place, do the same walk, and have no trouble with it - unless they have a medical issue or advanced age. Many of the things that are starting to cause problems now - leading me to finally get the “asthma progression” checked into - are things I do pretty much every single day, and have done pretty much every single day. I never took time off to get out of shape. I’ve never been a couch potato. Even if I had to be “off” for some reason or another, that would be causing it’s own issues with pain in my body. It happens when we’re traveling, esp visiting relatives. (This is a symptom med school lad feels is also vascular caused.)

Too little exercise = bad. Too much = bad. The window of what’s right is decreasing even as I stay active doing these things.

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Apparently @eyemamom has blocked me. :open_mouth: Could someone ask her if her son has been checked for a PFO (patent foramen ovale), which is a major trigger for migraines. If that’s the problem, I doubt any vitamins, supplements or medications will help. PFO’s are very common, about one in four people have them.

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@Creekland when you were thinking it was asthma, did a doctor ever do the test where they give you an inhaler and then you exercise to see if it makes a difference?

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Yes, we lose strengths as we age. Look at the elderly around us. Or think of that old expression we heard from older folks, “I can’t do xx like I used to.”

I’m not diagnosing.
Menopause can also throw in a wrench.