Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

[Abrin]

Throwing out high and low numbers ends up with meaningless data because if you throw out the 15 to 20 and the 75 to 120 numbers, you end up with the average of 20 to 75, or an average of that which is around 35 to 40. Not sure what that tells you.

All I can tell you is the way that most algorithms work when it comes to heart rate and heart rate variability is that they always throw out the high and low averages whether people are healthy or not, They are considered to be anomalies in the data. (*shrugs*)

 

[CedarHome]

Here are 3 readouts from my Oura ring.

.

Oura is pretty expensive... are you getting anything out of it? Can you recommend it?

I've read that some people really like the sleep info they get from it and use it to improve sleep.

Of course you'd have to wear it ALL THE TIME

 

[CedarHome]

Here's a good/ helpful article on someone's experience with HR monitoring
http://www.occupycfs.com/exercise-testing-and-results/

 

[Learner1]

Oura is pretty expensive... are you getting anything out of it? Can you recommend it?

I've read that some people really like the sleep info they get from it and use it to improve sleep.

Of course you'd have to wear it ALL THE TIME

Oura costs is in the same price rangee as other trackers. I've had mine for 3 years. It's attractive, durable, and fuss free to use, other than charging it every 3-5 days, a process that takes 20 min.

I've found it more useful than something like a Fitbit, as I'm not trying to train for athletic performance. It captures a variety of activities, including being fully immersed in water, and allows me to track my activity level by hour, day, week, or month, and has allowed me to see changes brought in by various interventions.

The sleep tracking has been helpful, as well as nighttime heart rate. It also lets you capture a "moment" to check in if you feel particularly good or bad.

This review discusses it. I have weight lifted quite a bit with it on with no problems, with dumbbells up to 20lbs and on machines.

https://www.nytimes.com/wirecutter/reviews/oura-ring-sleep-tracker/

It's greatest value has been in monitoring my health and response to treatments, as well as overall volume of activity. The app that comes with it is very useful in sharing feedback with doctors. In one case, it showed a response to s particular pharmaceutical that increased my energy 30% over time, sustained for over a year - this is for a drug that's pricey, not well-known and difficult to get, and my doctors were impressed and went to bat with my insurance to keep me on it. I don't know if a Fitbit or Garmin would be as effective.

 

[Learner1]

All I can tell you is the way that most algorithms work when it comes to heart rate and heart rate variability is that they always throw out the high and low averages whether people are healthy or not, They are considered to be anomalies in the data. (*shrugs*)

They are not anomalies in the data. The 75 to 110 numbers are when I'm at my best. The 15-30 numbers are when I'm recovering from IVIG and on Benadryl. It's a very predictable pattern. Averaging them to 45-50 says nothing about my health.

The beta blocker propranolol also dampened my HRV values, dropping them significantly, to 20-30 for a long time, no matter what I did. I switched to metoprolol and it's allowed more variability as described above.

But, as the beta blocker and diphenhydramine and my IVIG treatment have had significant impacts on my HRV, and probably the other MCAS and POTS meds and maybe my hydrocortisone and thyroid hormones, I really don't trust that HRV is an accurate representation of my overall health or heart health.

I think the only thing that I can conclude is that the drugs have a major impact on my HRV. I also think that the HRV studies on unmedicated ME/CFS patients may be interesting for researchers, but for patients trying to get better, they're useless. What would be useful is measuring it on patients with adrenergic and muscarinic antibodies linked to POTS, medicating them with various beta blockers, calcium channel blockers, and acetylcholine increasing substances as well as various MCAS meds, and. Rituximab, to find combinations that work best for TREATMENT OF ME/CFS patients, so people can get their lives back.

 

[Abrin]

They are not anomalies in the data. The 75 to 110 numbers are when I'm at my best. The 15-30 numbers are when I'm recovering from IVIG and on Benadryl. It's a very predictable pattern. Averaging them to 45-50 says nothing about my health.

The beta blocker propranolol also dampened my HRV values, dropping them significantly, to 20-30 for a long time, no matter what I did. I switched to metoprolol and it's allowed more variability as described above.

But, as the beta blocker and diphenhydramine and my IVIG treatment have had significant impacts on my HRV, and probably the other MCAS and POTS meds and maybe my hydrocortisone and thyroid hormones, I really don't trust that HRV is an accurate representation of my overall health or heart health.

I think the only thing that I can conclude is that the drugs have a major impact on my HRV. I also think that the HRV studies on unmedicated ME/CFS patients may be interesting for researchers, but for patients trying to get better, they're useless. What would be useful is measuring it on patients with adrenergic and muscarinic antibodies linked to POTS, medicating them with various beta blockers, calcium channel blockers, and acetylcholine increasing substances as well as various MCAS meds, and. Rituximab, to find combinations that work best for TREATMENT OF ME/CFS patients, so people can get their lives back.

I think we have some miscommunication going on. I wasn't talking about anomalies in your data. I completely agreed with you that it is more than possible that certain medications could make heart rate variability tracking less useful to some people.

I was only talking about when there is anomalies in my own data and how the whole concept of data analysis as a whole throws out very high or very low numbers as an anomaly.

 

[CedarHome]

Oura costs is in the same price rangee as other trackers. I've had mine for 3 years. It's attractive, durable, and fuss free to use, other than charging it every 3-5 days, a process that takes 20 min.

I've found it more useful than something like a Fitbit, as I'm not trying to train for athletic performance. It captures a variety of activities, including being fully immersed in water, and allows me to track my activity level by hour, day, week, or month, and has allowed me to see changes brought in by various interventions.

very helpful, thank you!

 

[Booble]

I'm going to be negative Nelly on this one. I tried doing some research on HRV and the majority of it seems to come from relatively lame "medical" sites or sites trying to sell or promote the technology devices.

The medical reports I'm seeing show HRV being useful for predicting survival after myocardial infarction and things like that. Also an indicator of anxiety.

Are you sure this isn't just something that is being measured for consumers because these devices happen to be able to measure it?

 

[Abrin]

I'm going to be negative Nelly on this one. I tried doing some research on HRV and the majority of it seems to come from relatively lame "medical" sites or sites trying to sell or promote the technology devices.

The medical reports I'm seeing show HRV being useful for predicting survival after myocardial infarction and things like that. Also an indicator of anxiety.

Are you sure this isn't just something that is being measured for consumers because these devices happen to be able to measure it?

All I can tell you is that tracking my heart rate variability for the last 4+ years was the biggest game changer when it came to my health after reading an article about it on Health Rising. I've never had a major crash since I started tracking it using the EliteHRV app and I used to previously crash so badly that I was unable to go to the bathroom or feed myself on my own for weeks on end.

I am not an expert in the subject so I have no idea whether it will be helpful for other people. All I know for sure is that it changed my own life. I am not cured by any stretch of the imagination but my quality of life went up majorly.

 

[Booble]

That's great, Abrin. I don't begrudge you that at all!

I was just surprised because I was thinking this was an actual medical thing doctor's track for our purposes.
But hey, whatever works. Information and data is always a good thing if you have come up with a way to make it work for you.

 

[Learner1]

Are you sure this isn't just something that is being measured for consumers because these devices happen to be able to measure it?

From similar research I've seen, it does seem to be helpful for cardiac patients. I just question it's use in ME/CFS patients who are actually getting their problems treated.

All I can tell you is that tracking my heart rate variability for the last 4+ years was the biggest game changer when it came to my health after reading an article about it on Health Rising. I've never had a major crash since I started tracking it using the EliteHRV app and I used to previously crash so badly that I was unable to go to the bathroom or feed myself on my own for weeks on end.

I am not an expert in the subject so I have no idea whether it will be helpful for other people. All I know for sure is that it changed my own life. I am not cured by any stretch of the imagination but my quality of life went up majorly.

Glad that it helped. Can you answer a few questions so we can understand the context, please?

How is your POTS being treated? Do you have hyper or hypo POTS? What are your pulse and BP sitting or lying down and standing, before and after?

How is your MCAS being treated?

How much do you exercise now vs. before? How far can you walk? What made the difference?

How were you able to manipulate your HRV?

Do you have PEM? What are you taking for it,?

Are you taking anything that affects acetylcholine?

Thank you!

 

[Abrin]

Glad that it helped. Can you answer a few questions so we can understand the context, please?

Of course! I am always glad to help. We gotta have each others backs after all.

How is your POTS being treated? Do you have hyper or hypo POTS? What are your pulse and BP sitting or lying down and standing, before and after?

It isn't being treated. I never went after an official diagnosis of ME/CFS because there was a five year waiting list to get in to see someone and it was out-of-town and I am way to sick to have ever been able to get a driver's license and taking public transportation is out of the question because it would be to exhausting. My father has ME/CFS so I was very familiar with the symptom set when it happened to me too.

How is your MCAS being treated?

Ditto to above.

How much do you exercise now vs. before? How far can you walk? What made the difference?

I was bedridden on and off before. Right now I can walk a maximum of 3000 steps. I haven't been able to expand my envelope a lot when it comes to walking yet but being able to do body-weight exercises is a complete new thing to me. What made the difference was that I wasn't crashing regularly and I was able to see when I was overreaching through tracking my HRV.

How were you able to manipulate your HRV?

I didn't manipulate anything. I just kept track of the data I was getting and looked for patterns.

Do you have PEM? What are you taking for it,?

I do have PEM. As explained above. I am not taking anything for it. The only medicine I am currently taking is modafinil for an 'unrelated sleep disorder'.

Are you taking anything that affects acetylcholine?

I don't know. I must admit I don't know the first thing about acetylcoholine.

If you have any more questions, just let me know. ❤

 

[Abrin]

That's great, Abrin. I don't begrudge you that at all!

I was just surprised because I was thinking this was an actual medical thing doctor's track for our purposes.
But hey, whatever works. Information and data is always a good thing if you have come up with a way to make it work for you.

It might be? I remember seeing an abstract listed in another thread on the forum but I must admit I didn't read through it.

https://forums.phoenixrising.me/thr...n-individuals-with-cfs-me.78790/#post-2327372

 

[Rebeccare]

I just got a Fitbit (my mother-in-law had an old one she wasn't using anymore), and it's been really enlightening over the past few days to wear it and just see what my heart rate is while doing various activities. I knew that my heart rate went up when I did, but I didn't realize quite how much it went up by! The Fitbit started vibrating while I was in the grocery store perusing the produce aisle and congratulated me on getting my heart rate into the 'fat burning zone.' Although a racing heartbeat wasn't something I thought was worthy of congratulations, it was nevertheless helpful for me to have an alert that it was happening. Already I'm shifting some of my routines in order to minimize these spikes whenever I can.

Apparently the Fitbit records your HRV overnight. So even though it isn't being monitored continuously, maybe it will still be helpful information.

It's also going to be so helpful to have data to show my doctor!

 

[CedarHome]

The Fitbit started vibrating while I was in the grocery store perusing the produce aisle and congratulated me on getting my heart rate into the 'fat burning zone.'

Yes... I've been shocked by how much of the day the fitbit thinks I'm "fat burning" while I think I'm.... trying to buy vegetables or cook dinner or do anything other than lie on the couch.

The tricky part seems to be figuring out what my own comfortable vs. challenging heart rate range is. I'm still new at this and experimenting.

I do wish I had started tracking heart rate a year ago so I have some objective measure of capacity!

 

[Learner1]

Of course! I am always glad to help. We gotta have each others backs after all.



It isn't being treated. I never went after an official diagnosis of ME/CFS because there was a five year waiting list to get in to see someone and it was out-of-town and I am way to sick to have ever been able to get a driver's license and taking public transportation is out of the question because it would be to exhausting. My father has ME/CFS so I was very familiar with the symptom set when it happened to me too.



Ditto to above.



I was bedridden on and off before. Right now I can walk a maximum of 3000 steps. I haven't been able to expand my envelope a lot when it comes to walking yet but being able to do body-weight exercises is a complete new thing to me. What made the difference was that I wasn't crashing regularly and I was able to see when I was overreaching through tracking my HRV.



I didn't manipulate anything. I just kept track of the data I was getting and looked for patterns.


I do have PEM. As explained above. I am not taking anything for it. The only medicine I am currently taking is modafinil for an 'unrelated sleep disorder'.



I don't know. I must admit I don't know the first thing about acetylcoholine.

If you have any more questions, just let me know. ❤

Thanks for sharing Given your answers, it doesn't sound like you've solved your problems at all. Treating these issues has allowed an increase of up to 19,500 steps on a very good day, but, as noted, the meds dramatically shift HRV, making it not very useful.

It is not necessary to have an ME/CFS specialist to solve these problems. One needs a cooperative doctor, though.

 

[Abrin]

Given your answers, it doesn't sound like you've solved your problems at all.

That is your opinion.

 

[Learner1]

That is your opinion.

Sorry, I didn't mean to be harsh. But, you seemed to indicate that normalizing HRV led to a cure, which does not seem to be the case, unfortunately.

In many cases POTS is caused by autoimmune antibodies and substances that increase acetycholine can help reduce symptoms, but they can negatively affect HRV. But I'm not sure that's important. Functioning better is, I think.

 

[Abrin]

Sorry, I didn't mean to be harsh. But, you seemed to indicate that normalizing HRV led to a cure, which does not seem to be the case, unfortunately..

I don't mean to be harsh either but you are making some MAJOR assumptions about my intentions.

I never said it was a cure. I never even insinuated that it was a cure

I never said it would help every single person with ME/CFS.

I discussed my personal experience with tracking my heart rate variability in a thread on heart rate variability where someone asked a question about what devices people were using for tracking heart rate variability.

I was kind enough to answer all your questions to which you then declared that I hadn't solved my problems at all.

So...here we are.

I am not an expert in the subject so I have no idea whether it will be helpful for other people. All I know for sure is that it changed my own life. I am not cured by any stretch of the imagination but my quality of life went up majorly.

If you'll look up to post #109 you will see that I specifically used the words 'not cured' in this thread because I wanted to be very careful that I was not making the insinuation.

 

[Learner1]

I don't mean to be harsh either but you are making some MAJOR assumptions about my intentions.

I never said it was a cure. I never even insinuated that it was a cure

I never said it would help every single person with ME/CFS.

I discussed my personal experience with tracking my heart rate variability in a thread on heart rate variability where someone asked a question about what devices people were using for tracking heart rate variability.

I was kind enough to answer all your questions to which you then declared that I hadn't solved my problems at all.

So...here we are.



If you'll look up to post #109 you will see that I specifically used the words 'not cured' in this thread because I wanted to be very careful that I was not making the insinuation.

Thank you for clarifying.