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PeterPan

Out of breath with exercise, asthma, something else?

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1 hour ago, PeterPan said:

Yes, I want someone who can check both the heart and VCD angles. I agree it's not safe to *assume* it's VCD.

Ok, so the doc listened to my heard 6 months ago and ran normal blood work. The levels were all brilliant, awesome, fabulous. Yes, tested D at my request (because had genetics had shown it was an issue) and the level I'm supplementing it at is keeping it at top end of normal range. Did thyroid and tidied that. So b12 got you the rest of the way? Basically I just need to run labs and see what the vampires say. 

Is there a trick to the b12 to get the levels right? Like with D, it's top end of the normal range. It doesn't seem like getting things into "normal" gets you to feeling good. So how did you know you had the dose right? And on the forms, are you going with something like the Yasko chart? I *think* the preferred form for me was adenosyl (sp). I'd need to go back and check. I have the contradictory genes, so doing methylated is a super no-no and doing regular doesn't feel good either. I was looking at the bottle that's coming and even the levels in it are pretty low. I'm thinking they aren't going to be enough to get my levels up to happy, but I don't know what happy will be, lol.

And how often would you retest B12 when tweaking? Is that every 4 weeks? 6? Or you can pretty much tell when they're right?

 

I retest B12 every six months.  For me, i started out at 200 ng/DL That is considered normal in the US, but its the low side, where it will keep you alive, but not allow you to thrive.  Wrong form of B12 took me to 900.  I felt marginally better.  After a year, switched to right form of B12. Night and day difference in fatigue and ability to run, slept less,  test number stayed same for a few years and then went to 1100 -- at that point the doc said lay off, and I was getting some anxiety so I did.   I was taking 1000 mcg/day, now just 1000 mcg/week...I arrived at that by how my memory and hunger levels were doing.   From being fatigued all my life, I know if I crave leafy greens and meat, I am low on B12 and maybe D.

I am not using anything like Yasko.  I tried a B complex suggested for my genetic variations but didn't seem to do much.   I am so thankful that my lifelong fatigue is fixed that I really don't want to mess with it any further.  Its very cool to be able to run.  This is the only other person I've read that sounds familiar with B12 levels: https://www.womensrunning.com/2018/03/nutrition/b12-deficiency-dangers_86194 and I don't run at that level or take the same meds.  I was told I was depleted from meds as well as anesthesia, but it was the same fatigue I have felt since puberty.

Edited by HeighHo
correct units
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Just now, HeighHo said:

 

I retest B12 every six months.  For me, i started out at 200 ng/DL That is considered normal in the US, but its the low side, where it will keep you alive, but not allow you to thrive.  Wrong form of B12 took me to 900.  I felt marginally better.  After a year, switched to right form of B12. Night and day difference in fatigue and ability to run, slept less,  test number stayed same for a few years and then went to 1100 -- at that point the doc said lay off, and I was getting some anxiety so I did.   I was taking 1000 mc/day, no just 1000 mc/week...I arrived at that by how my memory was doing.  

I am not using anything like Yasko.  I tried a B complex suggested for my genetic variations but didn't seem to do much.   I am so thankful that my lifelong fatigue is fixed that I really don't want to mess with it any further.  

Fabulously helpful. I can't believe I let this go so long. I'm googling it and you're right, straight down the line, b12 can cause this. It's definitely the easiest place to start. I think I can get the scrip this evening and get it run tomorrow, which gives me results pretty quickly. 

So what's the product you're using? Am I allowed to ask? 

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It was my GP who blew me off btw. He's like your this and that are fine so your b12 will be fine. Hoops, jumping, sigh. But the guy making my plans is a chiro, so he can write the scrip, done. It's the least invasive, least expensive explanation. Then you're at heart problems and VCD, so let's hope it's the B12, lol.

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I use straight from the grocery store methylcobalamin..Nature's Bounty brand.  Its about $5/30 tablets on sale at the grocery store.  Double if not on sale. 

Also, I am told that MMA should also be measured along with B12 when  bloodwork is done,  as B12 can look good but not be good and MMA is what shows the difference.  I didn't get there because I stumbled on to feeling good with the supplements.

I had heart checked out for another issue, so didn't have to go there.  Same for lungs. 

Edited by HeighHo
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Good tips! I'm googling this MMA and that makes sense. 

28 minutes ago, HeighHo said:

 I was taking 1000 mc/day, now just 1000 mc/week

Yeah, I just checked and the B I could tolerate is 18mcg in *2* tablets, lol. Might explain the problem. 

Well fine. This is a solvable problem if it's it. If not, then fine, but I'd rather it's this, lol. And yeah, I can't take a methylated product. I get really irritable really fast. My genetics are the MTHFR and some other issues, so I don't tolerate methyls but don't methylate properly either. It's dopey, lol. There's a version that jumps over it, giving the next stage, and I've never taken that product before. 

Edited by PeterPan
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Oh, apologies for getting B units wrong, you are right with mcg; the ones I have are 1000 mcg per tablet.   I'll blame it on not using my glasses.

Edited by HeighHo
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Following just to see what you find out.   I have similar issues but am not as in shape as you are at all.  I have had open heart surgery, had some lung damage from that, had congestive heart failure twice, and am way overweight...along with being almost 50.
 

That said, I should NOT be this out of breath when I do 10 minutes on the elliptical.  I even yawn walking up hills.  My peak flow though is only about 300, which is low for my age/height.    Next week I go for a breathing test at the primary that takes about 30 minutes and they will do some before and some after use of an inhaler.  I also have an appointment with the cardiologist coming up where I hope they can do an EKG, possibly order a stress test, etc.   My blood work though is all excellent...despite my weight, my cholesterol, sugars, etc. are ideal, my blood pressure is fine and my resting heart rate is 55 according to my fitness tracker (60 might be a bit more accurate).

I just want to know what is going on.  If I am just old and fat...then I will know that and know it is safe to push on.  If I have a heart/lung issue, I want to know that so we can address it.

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Listening to your heart and bloodwork won't show everything. You need an EKG and stress test most likely. Did your GP know you were having exercise intolerance?

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49 minutes ago, HeighHo said:

Oh, apologies for getting B units wrong, you are right with mcg; the ones I have are 1000 mcg per tablet.   I'll blame it on not using my glasses.

LOL, I figured. Well I ordered a KAL adenosyl B12 that should work for me. Doesn't cost much, should arrive pronto. I can hopefully get labs done before then to have a baseline.

43 minutes ago, Ottakee said:

That said, I should NOT be this out of breath when I do 10 minutes on the elliptical.  I even yawn walking up hills. 

I hope you get it figured out! I really don't know. I've decided I'd do better if I had someone like me taking care of ME. I'm always taking care of others and then I put off myself.

34 minutes ago, Ktgrok said:

Listening to your heart and bloodwork won't show everything. You need an EKG and stress test most likely. Did your GP know you were having exercise intolerance?

Well I guess let's see. That would cost me a ton of money. If the B12 levels come back with no issue at all (like mid-normal or higher), then that's going to be concerning. I'm definitely taking it seriously. The only question is with whom. I probably need the B12 no matter what.

I'm not sure this is exercise intolerance. I'm getting through 4 vigorous workouts a week. I'm fine if I take breaks, and I've been this way in shades for several years now. It's not suddenly appearing. 

It's a shame there's not an in-between option on ways to know if you're having heart problems or not. When the doc suggested a thyroid ultrasound, the hospital wanted $600. I hate to think what they'd want for heart, laryngoscope, and these other tests, sigh. I have a $10k deductible so *I* will be paying for this. So I'm not gonna let it go too long, but I'm at least going to do the B12 labs and start low and work up. 

And yes, he knew I was low energy, not feeling optimal. It's why I got a GP after 17+ years of avoiding all doctors like the plague. Even managed to have two babies without them. I like this new GP guy I got, because he listens and is ok to work with. He listened to my complaints, ran labs, and when we were mutually happy he said see you in the fall. So I was just rolling with it. Having it be to this DEGREE is more recent. It's moving from annoyance to problematic. At the same time I'm increasing the exertion significantly AND have been out of the B supplement I was taking. So if it's at all possible it's the Bs, it would be good to get that cleared up. Also, I don't think the guy doing my plans is going to let me keel over on his watch. Just a little liability there, lol. He's at the gym every night, so if I don't do what he thinks is right he's gonna kick my butt. And I wrote him what happened last night and today, so he knows. 

Edited by PeterPan

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Chris Masterjohn has some good info about genes and B vitamins. Here’s a video he made but he has more on his site.

https://chrismasterjohnphd.com/2018/01/09/mtrr-genes-vitamin-b12/

Besides weighing yourself, you might want to look into getting a DEXA scan once or twice a year to see how your body composition has changed. Universities have sometimes done these for about $100 but I’ve read about centers popping up dedicated to the DEXA scan.

https://dexascan.com/locations/

It’s still probably a good idea to try to find someone who can help you figure out if something is going on with your heart. It’s a drag but one of those better safe than sorry situations. I had to do that myself for a heart murmur. More to ease my doc than myself! But all was good. And most likely, that will be your case, too. 🙂

 

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1 hour ago, BeachGal said:

Chris Masterjohn has some good info about genes and B vitamins. Here’s a video he made but he has more on his site.

https://chrismasterjohnphd.com/2018/01/09/mtrr-genes-vitamin-b12/

Besides weighing yourself, you might want to look into getting a DEXA scan once or twice a year to see how your body composition has changed. Universities have sometimes done these for about $100 but I’ve read about centers popping up dedicated to the DEXA scan.

https://dexascan.com/locations/

It’s still probably a good idea to try to find someone who can help you figure out if something is going on with your heart. It’s a drag but one of those better safe than sorry situations. I had to do that myself for a heart murmur. More to ease my doc than myself! But all was good. And most likely, that will be your case, too. 🙂

 

Ok, more to look into! I'll go look at that article. It has taken me a while to sift through the genetics results I got, and there are genes that sort of mystified me or didn't get prioritized. That MTRR is one of them,.

That DEXA scan sounds interesting. Our Y has a scale that will crank out percent bodyfat. It measures body impedence, so you enter data and it takes a bit and does its magic and gives a printout. It's free, and it's at least relative to itself. But you're right, I've been planning to do it and haven't gotten it done. Seems to me the only reasonable way to track what's happening, given my frame size. 

Well I had an interesting time at the gym tonight. I used one of the VCD breathing strategies extensively. It took a while, because first I wanted to see if I could actually FEEL what was tight or whether that region was tight. 

What I noticed quickly was that squatting and deadlifting result in tightening that area. So then I tried doing the VCD exercises between sets. I found if I did them enough I could get significant, noticeable release. There's sort of a point where the tension in the neck releases (which is very hard for me to feel) and then it releases down to my collarbone, which is much easier to feel. So that gave me a baseline, like do them till you get that release and are back to baseline.

Doing that, I had ZERO panting, did not fatigue, was FASTER between sets, felt STRONGER on my reps. I think started exploring how I could do the VCD exercises *during* the sets. At this point I was doing free weights. So instead of doing the VCD before and ignoring my breathing during the rep or letting it be random, I was now trying to integrate the VCD breathing into the reps. That's a little complicated! I can see why people are going to practitioners and using scopes, lol. So with some work, I actually got to where I was able to do that even.

End result? My lifting was faster, my recoveries were faster, and I was strong enough at the end of the weights to go ahead and do the cardio portion which I had been breaking off for another day due to fatigue. So I did a workout he thought should take 60-90 IN the 60-90. And I finished STRONG! 

I think when I thought I was tired, I was actually feeling pain from the tension. And yes my interoception is that bad that I would misread it like that. I was flabbergasted when I actually started feeling my larynx area to realize I was hurting. Well I'm not sure it was my larynx, so we'll say my neck and lower neck. But yeah, I was misreading what my body was feeling. With the VCD exercises, zero pain, zero fatigue.

The other bonus is that because I was using so much mindfulness to do the body scanning for this, I was crazy focused in my sets, lol. Sometimes my mind wanders and it's hard to pull it all together in the lifting. You have to think about so many things at once. So not only did I not hurt, but I was really focused and present and organized in my movements, which made them more strong. This was my heavy week before deload, so I was lifting more and doing it faster and better. And zero panting. I could tell if I had NOT been doing the VCD exercises it would have gone there pronto. That was very obvious. I mean, that cardio portion is no slacker, lol.

12 minutes with 5 reps each, keep cycling through the list:

-dumb bell clean to push press with 20 pounds (that's two dumb bells, each 20 pounds, so actually 40 pounds)

-kettle bell squats with 30 pounds

-wall balls with 18 pound ball.

I did that last, so by that point I was experimenting with bringing the VCD into the movements. That's really, really hard. I can hardly remember all the steps on that clean to push press gig anyway, lol. But as long as I did that, I was golden. If I let it fall apart, I had to stop and organize myself and do it right, bringing in that breathing with the looseness. I stopped between sets on that, so like I cycled through the clean to push press, squats, wall balls, then stopped to make sure my breathing was all the way calm, then went through the list again. Previously I had done 4 sets of that in 10 minutes. I got through 5 1/2 sets in 12 minutes AND came out strong, totally calm.

That's crazy compared to this morning, isn't it? 

So then, on the way out I got to gab with the guy who makes my plans. He's like yeah, read your emails, no it's not the labs, yes it's your breathing. So we'll still do the labs, but that was a big deal to realize if I am really attentive to how it's feeling and how I'm breathing (not even just whether I'm breathing but the specific way) and taking that area back to loose before proceeding, I'm fine. I've done that cardio circuit three times now, and it was NEVER so calm as this. Usually I sound awful, panting, needing breaks. With the VCD breathing, I was faster, stronger, getting more done, and I pretty much left like all the other people at the gym, quietly. 

Wild, eh? Never would have believed it. But it's wicked hard to VCD breathe on top of the movements. It's worth it, and I suppose the timing and practice will become automatic. It doesn't really address whether it's a VCD thing or a heart thing or what, but it worked. And it's not really accurate to say I was using the breathing breaks to do LESS, as I was actually doing MORE. Like I can literally say from my notes, my times, etc. that I did more in less time, with no panting. 

Edited by PeterPan
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Wait...you said that before you were breathing randomly, not paying attention to your breathing, during lifting? Yeah, that will mess you up! You are always supposed to breathe slow and steady, exhaling as you lift. Otherwise you tend to tighten up, hold your breath, etc which is really stressful to your body. 

I'm glad the focused breathing helps. Breathing is important 🙂

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Well I feel really well this morning. It does seem like changing the way I was breathing to the VCD techniques made a difference. I did more, faster, and I feel less fatigued today. I feel sort of my hyperactive ADHD self, like I should, which is kind of fun. :biggrin:

Edited by PeterPan

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Got the blood drawn today on the B12, folate, and homocysteine, so now just waiting for the vampires to report. 

Talked with a friend about the heart thing, and she's like well stop being an idiot, you're over 40, a baseline with a cardiologist is normal. But what she was describing was so far beyond (stress test on table, pumping you with drugs, blah blah), so I haven't sorted that part out. 

If the B12 comes back GREAT, that really undercuts the B12 argument, seems to me. I don't know. Then I'm left with definitely needing to see someone. So it's just tick tock. 

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I now have a cardiology appointment. It's not until mid-May, but it's made. And it's with the university, so they can do all kinds of swanky stuff like MRIs with exercise, the only place in the state, top of the line. Oh, and the lady I talked with on the phone had done the VCD and double evals, so she knew exactly what I was talking about. She gave me the name of the other place to call (otolaryngology), said I can't get it all under one roof.

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18 minutes ago, PeterPan said:

I now have a cardiology appointment. It's not until mid-May, but it's made. And it's with the university, so they can do all kinds of swanky stuff like MRIs with exercise, the only place in the state, top of the line. Oh, and the lady I talked with on the phone had done the VCD and double evals, so she knew exactly what I was talking about. She gave me the name of the other place to call (otolaryngology), said I can't get it all under one roof.

I'm glad! It probably isn't your heart but that's not a chance you want to take. 

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On 4/17/2019 at 6:04 PM, HeighHo said:

Oh, apologies for getting B units wrong, you are right with mcg; the ones I have are 1000 mcg per tablet.   I'll blame it on not using my glasses.

How long did it takes to see change? And you took 1000 mcg a day initially or more?

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Just a total aside while I'm here at the gym , this VCD breathing while running is tricky! I think my tendency is to inhale very shallowly but exhale forcefully. It would explain the crazy high peak flow maybe.

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2 hours ago, PeterPan said:

How long did it takes to see change? And you took 1000 mcg a day initially or more?

 

 

Yes, 1000 mcg daily.  Started with cobalamin then switched to methylcobalamin after a year.  Felt better the next day. Felt like superhero when I switched to methyl form, the feeling the next day was exactly what the doc had predicted.  Didn't have the genetics results back then, but when I rec'd them, they confirmed the need for methyl.

so, probably had 3 months worth from start to next check up and then it held steady around 900. I get checked every 6 months. When it rose to 1100 i figured I had restored what was depleted due to anesthesia and the doc had me stop.  

Edited by HeighHo
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So I’m late to this topic, but have lots of experience with this. VCD’s gold standard diagnosis is laryngoscopy while experiencing symptoms. They will actually see the chords twitching. 

Are you taking your albuterol before exercise? Your breathing pattern may change and cause some bronchoconstriction. Asthmatics are notoriously good compensators so if your oxygen dropped while exercising I’d be really concerned. If I’m struggling to keep my breathing paced well, singing along to a song actually helps a lot. 

There is such a thing as an exercise stress test so you could ask your primary doc about that. 

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9 hours ago, blondeviolin said:

So I’m late to this topic, but have lots of experience with this. VCD’s gold standard diagnosis is laryngoscopy while experiencing symptoms. They will actually see the chords twitching. 

Are you taking your albuterol before exercise? Your breathing pattern may change and cause some bronchoconstriction. Asthmatics are notoriously good compensators so if your oxygen dropped while exercising I’d be really concerned. If I’m struggling to keep my breathing paced well, singing along to a song actually helps a lot. 

There is such a thing as an exercise stress test so you could ask your primary doc about that. 

After I got the asthma diagnosed I took my inhaler and peak flow meter with me to the gym to be sure I was ok. I've *occasionally* needed it with exercise and it's a very distinct feeling, yes. I did the step test with the peak flow and pulse oximeter before and after, and my numbers actually went UP, which blew my mind. 

Yeah, I think that exercise stress test is what the cardiologist will want. I'm being told the docs won't want to diagnose VCD without excluding heart problems, meaning I have to see both. I'm not inclined to cancel the cardiologist at this point, because I'm not convinced the B12 is the problem. If I exclude heart problems, it leaves the VCD, which all things considered I kinda feel like I don't need formally diagnosed. If breathing techniques are the main answer and I'm doing them, then that's where I can save money. Doesn't seem smart to save money skipping the cardiologist.

14 hours ago, HeighHo said:

Felt better the next day. Felt like superhero when I switched to methyl form, the feeling the next day was exactly what the doc had predicted.

Interesting, well I guess we'll see. Thanks!

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Well I'm waiting to get back my labs. Meanwhile, I was thinking about this and realizing the weird wheezing sound I was making inhaling to lift was stridor. It's a known component of the VCD, and I've been doing it for some time, not sure how long. So I think we're a definite on the VCD. Doesn't mean more couldn't be going on, but given that I'm now realizing I have a key symptom (stridor) and that doing the special breathing helps, that's probably the most reasonable explanation. 

So meanwhile, here are two articles exploring whether inspiratory muscle training can help. Apparently in *some* people it does. I seem to be tolerating the Powerbreathe device fine, so I think I'll go forward and see what happens. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2465184/

https://www.atsjournals.org/doi/abs/10.1164/ajrccm-conference.2012.185.1_MeetingAbstracts.A3623

On April 16, 2019 at 11:25 PM, sangtarah said:

The only effective technique for VCD, they said, was a breathing pattern to relax the vocal cords. 

You could check out the inspiratory muscle training, see what you think. I got the middle and upper level of the Powerbreathe. My ds tried the lowest setting on the middle and it was too hard. So if your dd wanted to try it (given the flip coin chance that it could help), you'd want to start with the light model.

https://www.powerbreathe.com/plus

Oh, and I've done three workouts now using the VCD breathing and am getting great results. It's taking a lot of effort to breathe that way, mainly because every single exercise needs a different pattern. I'm recovering between sets more quickly, am getting through more, and am able to do more weight/exertion more comfortably. Basically it's a 10% bump just by getting the breathing under control. And I'm no longer tired after workouts the next day. I actually got through my two mile run with just one break of maybe 3 minutes. That was run 2 laps, walk 1 lap, but still that was the workout that a week ago I had to stop over and over and over because I was left panting uncontrollably. And this time I just did it, boom. Amazing.

Edited by PeterPan

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