Is there a potential fix for this (medical)?

Parent Cafe
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I’m not exactly sure why I need to defend myself on an anonymous message board, but let me just add that I DID allow for stress/radiation, etc to be the cause for some time. It made sense. A BT is stressful and radiation can do weird things. I can even believe radiation is the cause of the breathing issues now considering the timing and nothing else (related) seeming to be wrong.

The actual timeline started from BT being diagnosed and treated roughly 4 1/2 years ago. This is also when other things were checked out to be sure the rest was ok - found carpal tunnel via nerve testing and fixed that within a year post radiation.

Three months post radiation - check up - “these” issues. “Radiation + stress - they’ll go away.” Fine. Wait.

Three months later nothing had changed. “Sometimes it takes longer. They’ll go away.” Fine. Wait.

At six months post radiation the radiation doc said none of the issues would be due to radiation at that point and none were due to the tumor itself (except vision issues) due to the location. Check with someone else for the cause. Fine. Make other appointment. Go to other appointment. “Are you tired?” No. “Let’s check with an ENT for the ear/jaw pain + hearing pulse.” Ok.

Make that appt. “Nothing is wrong with the ear/jaw - no additional tumors or cysts or related issues with balance or hearing loss. Trigeminal nerve issues - probably caused by radiation. The radiation doc is wrong saying it’s not caused by this. Take Gabepentin if interested.” Not interested. Don’t want the fatigue that I don’t have and not particularly interested in the suicide warning that comes with the med either. Keep in mind the stress from medical appts, then add the stress of not getting answers and still dealing with issues. Now add in disagreement among the docs about the cause. There are other issues I haven’t mentioned that also aren’t explained.

Go back to PCP. “Take the meds.” No. Can we check vascular? I toss in symptoms - esp hearing pulse - into google and come up with a reputable site saying if it’s not due to tumors/cysts, then it’s usually vascular. “Stay off google. Let’s try another ENT.” Why? There’s no hearing or balance loss. “I really think it’s all stress. Can you think of ways to eliminate stress from your life?”

Yes. I can reduce dr appts, so immediately cancelled all others I had. Then came the battle of dealing mentally with living with the issues with no hope of a fix. That was admittedly very shaky times, but life won. I can now successfully deal with the issues, though naturally always look for ways to improve if I come across something.

Add another year or so - I don’t keep track anymore. I admit there are things like flu shots and tetanus boosters - plus who knows what other sort of “typical” things can happen, so use connections to get a local PCP again keeping far away from discussing much in previous issues. The Fe issue happened (low Fe Sat routine test - work provides these multiphasic blood tests at low cost - take Iron, two months later (maybe less) I make the connection from increased symptoms and new issues (like fatigue) “whoa that’s wrong,” drop Iron, all is well). On my own I was hopeful reducing Fe intake with food might get rid of the chest pains because adding Fe REALLY increased them - same feeling. It didn’t pan out though. Bummer.

Last fall. Breathing issues become super apparent, so I decide it’s probably routine and might have some fix/assistance (asthma) with the previous Navy diagnosis and head back to PCP. Get tested for asthma (Nov last year). Results are “normal.” Really? Then WTH is it? “Out of shape.” Uh, ok… seems very unlikely, but who knows? Slightly up what I’m doing and definitely remain constant with it instead of taking days off. No improvement. Routine visit and I bring it up again - sent to pulmonologist.

I think that catches folks up to date.

I don’t think I’m out of line. I think I’m more vested in what’s going on with my body and whatever it is doesn’t fit the textbook of how things are supposed to look, so doesn’t fit an easy answer. IF I could do things on my own I’d play around with a few other tests (esp vascular) to see if that’s a problem (if so, then take the results to a doctor for a “what now” assessment), but without fatigue being an issue it’s not supposed to be as far as they are concerned, so not worth testing. With my mom’s unexpected diagnosis I’ve also wondered if some form of cancer is possible - never any tests or thoughts about that from any of us - but… will hope that the time involved mean that one isn’t likely.

Otherwise, I’m committed to living with things making the best of what I can via whatever method I can (keeping noise on in the house “stops” most of hearing the pulse, keeping a high salt intake and low fluid intake stops most headaches - I just have to pray it doesn’t kill my kidneys, pure dealing with trigeminal pain, enjoying never getting hungry - hey - there’s one perk!, etc).

So… is this just another one of those or something that can be fixed/helped? I was leaning toward the former when starting this thread. (“Radiation” - and it could be that. It’s plausible.) Now my mind isn’t sure. I am keeping on with June’s appts and will make more decisions as needed afterward.

Sorry for any typos. I’m not proofreading. I actually have life to return to, but the idea that I haven’t given doctors a chance just isn’t reality.

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ps If dropping the dr appts/stress had fixed the problems, they’d have been right and I’d still be grateful. It had no bearing. I more or less knew that would be the case because life between dr appts is not terribly stressful. Dropping the stress meant dropping the dr appts.

Radiation being the cause is still a possibility, though the radiation doc said no, so who knows? I just know that for me, it was very wise to move on and I’m not getting myself back into that situation even if with different symptoms. Health issues are either fixable, helpable, or not. If not, fine. I’ll handle them on my own.

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Thanks for the recap, Creekland. But one thing that strikes me is that you’re going through your PCP (is that a requirement)?

I wonder if you would have far better answers if you saw specialists…i.e. cardiologist and pulmonary doc (maybe one different than you already saw) not ENT. As much as I like my PCP, specialists are the ones to go to for these kind of issues. Top specialists. My husband’s doctor recommended his own cardiologist to my husband, and he is phenomenal.

I wish you could just bypass your PCP, and if not, just request to see a specialist to get some answers. They would take you far more seriously. A PCP shouldn’t be dealing with these issues.

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Just wondering if you’ve been evaluated for pulmonary arterial hypertension, PAH.

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

Hope you are able to get some answers. I know how frustrating it is to gave to go round and round until you get them.

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The fact they (may have) only said they ruled out X because some one symptom wasn’t there, doesn’t mean they didn’t do their due diligence, explore the range of hints, suspicions, markers.

Over several recent threads, you’ve asked about a host of medical problems. You’ve expressed your concerns. But also in there, a number of times you’ve said, "Well, I’m not going to do this " or “I’ll wait on that.” Eg, waiting post graduation. Or not going to ER. . At times, you’ve been adamant about that. It’s confusing, at odds with itself You’re “committed to living with things making the best of what I can,” but still terribly worried sbout various details. Your pcp says, “Take the meds.” It seems, as written, that you said no.

When I asked about depression, I didn’t mean from the present medical mysteries. I wondered if depression, perhaps back to the BT, is driving these medical inquiries now. I am not disputing your symptoms. But something is coming through here. It’s not uncommon for a bad health experience to cause unending anxiety and hyper-vigilance. Of course.

You don’t need to explain to me or go into details. I believe you have symptoms. We all wish you well.

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I believe thinking “what will be, will be” while simultaneously researching and thinking about causes, treatments and outcomes is probably causing more stress than following up with providers and their recommendations. Meditate, practice yoga and/or see a therapist to help with the stress but please don’t bury your head in the sand and forego medical care.

When the next episode occurs, call your PCP and state that you are short of breath and having chest pains. Then follow up when they undoubtedly tell you to head to the ER. When there, just state the symptoms and your medical history, not any guesses from your research.

Better yet, make an app now with a cardiologist, or if you must, first your PCP, and tell them, shortness of breath and chest discomfort on any normal everyday life exertion and the episodes are increasing. Please take this seriously!

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It can take months to get an appt with a cardiologist. You should tell your PCP you want a referral now so you can make the appointment now knowing you will probably have to wait a few months to actually get in.

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When I went to the emergency room in the middle of the night for a suspected heart attack, the cardiologist diagnosed costochondritis and told me I was right to go to the ER because I couldn’t be expected to tell the difference between a heart attack and costochondritis.

It was weird. I woke up in the middle of the night with severe chest pain. I admit, I went to Dr. Google, who said Go to the emergency room. I thought to myself, this can’t be a heart attack, but am I willing to bet my life on it? I wasn’t. So I called 911.

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double post - not sure why TBH.

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@busdriver11 Why go through a PCP? Because 4 1/2 years ago I was told (by Johns Hopkins) that this was how things are done. I started there with an eye appt due to the double vision - that got quickly switched to an eye/neuro dr who handled tumors. They asked who my PCP was. I didn’t have one - didn’t need one - hadn’t really had any health issues since pregnancy and the little bit I had was covered by Urgent Care places. They told me to get one and that person would handle everything from there. I opted to find one local (to me - JH is sort of close, but not local). The two systems didn’t work well with each other, so I switched to JH as they had handled the tumor itself superbly (in my limited experience). That cost more money with no different answers, so is the point where I broke things off. When I decided it was worth it to have “a” local doctor for basic issues, I opted to use connections to get a different doctor locally.

From what little bit I’ve seen locally, specialists offices around here always ask who referred me. For this last appt I didn’t even get to make the appt initially. I was told one would be made for me. My (perhaps incorrect) assumption is the doctor offices require it. I know our health share does not.

@HImom No, that one hasn’t been checked out. At least there’s no swelling in my legs or racing pulse - not ever.

@lookingforward By concentrating on just the threads and not knowing the rest of my life, I can see where one can draw that conclusion. I just went and looked at all the threads I’ve started to see just how many there are. Obviously, there’s this one.

Last month I asked about milk thistle for my mom - Stage IV cancer - and about concussions and blood numbers (due to a text from my sister - her issues, not mine). Two health threads, but neither about myself.

In March I asked about statins - totally unrelated to this and due to those basic blood numbers coming back with high cholesterol. That is still something I need to decide about, but not until after I get Sept’s numbers. It’s on hold. I haven’t even thought about it recently, but it counts as the second thread with my health issues.

I also started one in March regarding my mom and incorrect diet advice she was given - a PSA of sorts - not a health issue of my own.

In Feb I started one asking about Hemochomatosis due to DNA tests and thinking that might be the answer to tie everything together. It wasn’t. Such is life. Topic finished. In hindsight I never needed to start that one, but yes, I was hopeful a plausible solution was on the horizon. I think that merely means I’m human.

That makes three threads I’ve recently started about my own health issues. Prior to that one goes back 2 or more YEARS with the most recent one being what to do after I received someone else’s health bills in the mail along with mine.

I suppose if one wants to substantiate the rest of what I’ve mentioned health-wise with threads from the time, it can be done - carpal tunnel and all. There are 5 threads dating back to 2013 that deal with my health issues at those times. Perhaps that is too many. I don’t have anyone to compare numbers with. I know it’s appealing to get opinions from here because it’s a wider and more experienced group than I have in my local circles.

When health issues are front and center I like to get a bit of info to make decisions from, but they aren’t always front and center in my life - even when the threads are new/active. They’re just decisions I need to make and I don’t feel I have enough info to go on, so want more. I might indeed be a little more leery of just trusting a single person at this point considering it was one single decision that drastically changed my life three decades ago. I also know I am not going to get into the no-win stressful scenario of two years ago, so more leeriness there.

Actually having a life outside of medical issues is WHY I’m ok with putting things off - or rather - leaving them at the currently scheduled times. Being ok with death as a result if I’m wrong is another reason I’m ok with it all. I’m past fearing death.

Not going to the ER is mainly due to having had these episodes for a long enough time… and they haven’t killed me yet. As with the cancer idea, if it were something deadly, I think it would have. It’ll be checked out - just next month instead of disturbing that actual “life” I have now, esp since that life is coming up with a major stepping stone as my youngest son graduates a handful of states away from me and I plan on happily being there.

@my-3-sons The shortness of breath and chest pains aren’t necessarily connected. The shortness of breath always comes with a certain level of exercise with the bar on that gradually getting lower. There are no exceptions to that. The chest pains are not predictable. They aren’t there with typical daily shortness of breath deals, or if they already are there, exercising to that level doesn’t change the magnitude for better or worse. I’m unsure about higher levels as I don’t do that often.

FWIW, at the pulmonologist’s office I saw my doctor’s note with the referral. It mentioned “very concerned” on it. I think both doctors are taking things seriously at this point. It’s just not on an “Emergency” time frame, but I’m not sure it has to be. At this point, they aren’t the ones ending the search for a cause. I wasn’t sure if I should be based upon my preferences.

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So you are always going through a PCP because someone told you this was how it was done? Do you want to go through your PCP, who doesn’t seem to be helping? You don’t have to do that if your health insurance doesn’t require it. Call your health insurance company and confirm you can go to a specialist without a referral, if you have any doubt.

Yes, when we go to specialists, they ask us who referred us. I just say that we don’t need a referral, but they were recommended by so and so.

If your insurance doesn’t require a referral, you should feel free to see any specialist you like, whom your insurance will cover. No permission required.

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I’m giving you this from United. Some plans require a note from your primary doctor before you visit a specialist, such as a surgeon or therapist. This may be the case if your plan requires you to have a primary doctor. Without this referral, you may not be able to make an appointment — or your health insurance may not pay the claim.

The idea, I believe, is having one pro manage the various parts of care.

“keeping a high salt intake and low fluid intake stops most headaches”
Btw, high sodium can trigger headaches/migraine, as can dehydration. High sodium can cause angina.

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The goal is to avoid a cardiac emergency! They often don’t end well. Can you have your med school son read this thread? He more closely understands your medical history and personality. I hope you understand that we are all concerned about you and are trying to help. We are well intentioned!

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I used to work for a specialist. We asked who referred so my doc could send your doc a note about the findings.

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This one, I think, is helping. I have not felt brushed off. I just didn’t share as much with her to begin with due to previous experiences. My original plan with heading back into the medical world was just to keep it with current things - not to dust off old (albeit recurrent) things. Therefore, her recommending statins due to current blood tests isn’t offensive or anywhere near out of line. My opting to wait six more months to see if the trend continues is one we talked about together. When I mentioned the breathing issues we discussed pulmonary vs vascular and esp with the old diagnosis, pulmonary seemed like it should get checked out first. She still felt that way after asthma tested inaccurate.

I heard from the pulmonologist’s office roughly two hours ago. He still feels a plain echo should be fine. Granted I didn’t update him regarding the more recent chest pains, but I also just ran in from the barn due to an oncoming storm with dime sized hail (short run, but enough to get my pulse up to 137 with (totally expected of anyone) breathing issues (not bad, but noticeable) and there are no chest pains (so far). BO stayed high (98%) as per the phone. Pulse returned to 74 quite quickly. BO stayed the same (and I think 98% could easily be 100%). By comparison, more couch potato"ish" hubby made the exact same run and had a high pulse of 116 with a BO of 95%. He was not out of breath (much). The same few minutes later our stats were equal (74 pulse, 98% BO).

I’m not convinced there’s a cardiac issue either. Seems if there were that would be as constant as the other things are.

Radiation side effects of some sort might have just gotten a boost as the correct idea. Perhaps it’s just telling my heart to beat more quickly than it needs to? (Yes, a guess.)

This has been discussed (with the drs) too. I’ve played around with levels that work and keep at it. Headaches are essentially gone (or are due to lack of caffeine which I also try to keep relatively constant, but occasionally miss on, esp when traveling). Na fasting blood test levels stick right around the bottom level of normal, sometimes one tick higher. Their (dr) conclusion was “if it’s working, keep at it.” High sodium is probably also relative. Anyone eating out regularly at fast food is going to have more than I get adding more to food at home. Our home menu is mostly healthy and I take my lunch to school 100% of the time. When traveling I don’t have to worry about keeping track 'cause restaurants take care of that automatically. There’s no difference I can tell in any symptoms when we travel vs not. (That thought came up long ago thinking of possible allergies…)

True on avoiding one… and no, I rarely bug med school lad at school. He has enough on his plate. We only occasionally talk about things on his breaks. I keep him updated when appts are going on and their results, but I keep my other lads and family updated too.

I thoroughly get that folks want to help even if we end up disagreeing. That’s why I’ve turned to this forum when I have. I like having a large set of info/data to think about when I’m not sure about something rather than a single bit of input I blindly follow. There will be whittling through stuff, but I’m ok with that (on more than just health issues really - even buying cars or whatever). If I didn’t find these things helpful, I’d just quit responding (or sharing). It’s a simple enough stop. I’ve been on this forum more than normal due to this thread just to get new ideas. Otherwise I’m mostly lurking on various college threads to glean info about some of those I don’t know about - still contemplating that for next year at school (which won’t happen if we relocate flat instead).

That said… I’m going to graduation next week. The next appt is mid June and will just be a regular echo followed by official BO testing. From there I’ll see what’s suggested. IF chest pains show up with other symptoms, I’ll see what I can convince myself to do. Without other symptoms doing anything else is unlikely.

Got interrupted typing this by a call from youngest son (the soon to be graduate). Still no chest pains from the “hail’s coming” run (and yes, we got hail), so exercise/quick stress is probably not connected to chest pains.

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I didn’t see where you mentioned this, but it sounds like a no-brainer for them to make certain that you don’t have a pulmonary embolism. Chest pain and shortness of breath, I’d assume they would have considered that? A chest X-ray doesn’t rule it out at all. I don’t mean to scare you, but if you hadn’t thought of this, you need to. It is surprisingly common. They can fix you up with blood thinners, if they catch it in time.

https://www.medicinenet.com/pulmonary_embolism/article.htm#pulmonary_embolism_definition_and_facts

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I guess I don’t know what they’ve considered and what they haven’t. I know the chest xray was normal and very little else has been tested aside from typical blood tests and brain MRIs (which aren’t recent, but I doubt anything has changed there either).

But actually, I’m on here to give a mini conclusion before a break. For whatever reason, I’m not even going to try to guess - cardiac issues, costchocondritis, adrenalin drop, psychosomatic, or fill in your own - shortly after I finished posting that last post the chest pains returned. What was actually worse at first was the trigeminal pain in the ear - that was as bad as it gets very similar to being hit with cold or wind, so the two might be connected.

To say it was frustrating is a big understatement and you can change frustrating to whatever word you want too.

I got up to walk around wondering if that would make it worse and give me incentive to get it checked out, but it improved the ear to a much more normal level… so who knows? If it were cardiac it should have gotten worse. I did dishes and went to bed. I’m still here this morning albeit with a much stronger feeling of being sure I avoid future “outside of my normal” exertion events even if it means getting stuck in the barn during a hail storm. Really, the only reason I can see being valid to do something is if a toddler were to run in the road or something. I just have to learn to think first rather than not.

Today I’m off to school - most likely my last day for our school year since school ends right as we return.

It might be dumb, but I suppose I’ve set in stone that I’m getting graduation in before anything else. If I hadn’t started this thread I wouldn’t think anything of it. It’s not “clearly” cardiac (to me) and I’d be super annoyed to miss this trip over a “non” issue (or an unexplainable issue) as most other things have ended up. If I’m wrong and the worst happens, I’ll admit I don’t care. At least then I wouldn’t have to worry about health issues. My lads are grown and will do fine. Dh would get the life insurance and do fine - heading out on the sailboat he’s been wanting me to get and live aboard. If y’all don’t hear from me ever again, you can use this story to teach from and more “normal” people might benefit.

Assuming the worst doesn’t happen, I can deal with this stuff in June and see where it ends up and I’ll update it.

FWIW, don’t be concerned if you don’t hear from me during our trip. Checking out CC when we’re traveling and doing things isn’t generally top of my “to do” list. I check news, email, and get daily lumosity games in if I can (sometime my lads hooked me on). That tends to be it.

For now I’m off to school.

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I’m surprised you are only having an echocardiogram instead of a stress echo, where they see what’s going on when you exercise, since that’s when you’re having symptoms. I’ve had both and my docs say that stress echos are much more helpful to see what changes occur when you exercise.

Because I’m allergic to sulfites we have never had me have any dye injected in my stress echo tests. I used agitated saline for my recent test and just exercised in the one I had many years ago.

Best of luck to you in figuring out what’s going on. It can take persistence and some determined detective work to figure it all out.

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That’s not necessarily true at all.

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We all know by now that you should have it checked out but since you are going to wait, then I want to wish you a wonderful vacation and Happy Graduation to your son. What an exciting time. I hope you feel well.