Heart Rate Variability and ME/CFS

Dear All,


I wanted to create a thread about Heart Rate Variability. There are many "signals" that identify this topic as a possible Game Changer to ME/CFS -according to the software i use- but also to other diseases (hypothesis).

As many of you know, in 2011 i started logging my symptoms through an app and then used certain types of analysis to try to identify what differentiates my "symptom-full" vs "symptom-free" days.

Many patterns were found and this process gave me several insights in learning how my body works and which symptoms had a special meaning (one of them being tinnitus).


These "signals" led me to go out there and buy a heart monitor strap, connect it with my phone and start looking straight away at the HRV patterns.

I am happy to say that the patterns of symptoms i found back then correlate perfectly with changes in the HRV. So -for me- the next target is to see how i can increase my HRV which essentially means increasing the activity of the parasympathetic nervous system over the sympathetic.

In this thread i will post hopefully useful insights and it would be great if any of you could add your results of your HRV readings and if / how it affects your symptoms.

 

You mentioned tinnitus. Can you tell me a bit more about that (or link me to a previous discussion of it)?

I ask because I've noticed that I get a tinnitus-like something* when I'm at my worst or declining, and I'd be very interested to know if its something more widely experienced.

* I say "tinnitus-like" because I'm not convinced it's actually tinnitus. I have sensorineural hearing loss and have had tinnitus as an adjunct of that for my entire life. The thing I get when sick is nothing like it - it's more of a throbbing, ringing sensation than a sound. I've never been able to figure out the right combination of words to be able to search for it to see if it's a common thing or not.

Apologies for going way off topic in the very first reply, especially when you created this thread so that HRV discussions didn't derail a different thread!

 

This is not off topic at all and thank you for mentioning this. It is not tinnitus, you are right. Some people i asked feel as if their hearing is impaired for a few seconds. Sometimes there is ringing which lasts 2-3 seconds. I also had SSHL and my hearing took many hours to come back.

So this "tinnitus" signifies a crash according to my observations. It may be possible that if you eat specific foods , you will have more occurrences of tinnitus. One of them being whey protein or anything that contains monosodium glutamate.

EDIT : This "tinnitus" almost always happens in one of the ears (=unilateral)

 

Recall that Ron Davis mentioned about mercury levels :

 

Interesting.

We have done 2 hair tests, around 6 months apart to track electrolyte/ cation status
The second test showed improvement in electrolyte ratios , but a high level of mercury ( not high previously) and increase in aluminium levels.

My assumption was that improvement in methylation due to some supplements had started to release these materials from tissues where they had been stored...

 

That's very interesting indeed. Sounds like the same thing. It's always unilateral for me, and always on the right hand side. The actual ringing/throbbing never lasts for more than a few seconds, and it pulses far too quickly for it to reasonably be pulsatile tinnitus. Thanks - good to know I'm not going insane after all!

 

If any of us want to follow along with your HRV experiment can you provide some details - type of strap, app used, frequency of measurement would be helpful.

 

Sure, i use a POLAR H7 strap and the application is called EliteHRV. I use an iPhone.

Link to the app : https://elitehrv.com/

@feeb Have you noticed getting dry/flaky skin especially in the winter time after each tinnitus incident?

EDIT : I take several measurements per day because i am experimenting to find what best increases HRV at the moment

 

Wow, how much synchronicity. I just bought a polar H7 to track HRV in the Elite HRV.
The 1st picture is of a meditation session, the second one is of me having a walk with pseudoephedrine and Mestinon (for alpha 1 stimulation)

Sorry if you can't see the images well. I use redshift at night to block blue light.

 

In the first year I was ill, I monitored HRV everyday and really worked hard to find patterns. Unfortunately there was no correlation between my HRV and symptoms. I stopped using it.

 

This is my morning log. Results as expected , showing abnormal sympathetic activity

 

I don't know, I'm afraid - I have very dry skin anyway, so I use a fairly bulletproof skincare regime to control it!

The only associations I've made are the usual swollen glands, sore throats, and general-feeling-of-being-unwell, so as you've noted it's strongly correlated with a crash.

 

So after many confirmations and recordings of HRV, i found what works for me better in increasing HRV. Ordered by largest effect, descending :


1) Slow Breathing, 5 seconds in, 5 seconds out
2) Submerging head in ice cold water
3) Gargling
4) Humming


I also have preliminary results from Machine Learning runs : HRV gets a top ranking of importance for ME/CFS symptoms.



I will post more soon.

 

Slow breathing makes sense. Gargling also since it stimulates the vagal reflex. But ice water? I thought sudden cold activates the Sympathetic arm of the ANS.

Maybe our ANS is so messed up anything that shakes it up works.

 

Good questions @Trish, working on them (the second one i will probably not able to quantify easily)

 

Please see below :

https://www.researchgate.net/public..._nervous_system_and_adaptation_to_cold_in_man

 

Hi @mariovitali

Thank you for your work on this, and exciting news on your other recent thread that collaborations will happen soon!

Regarding your post about mercury - many know that amalgam fillings release mercury. There is of course mercury basically everywhere - in the air, water, the food we eat. However, it is very unfortunate, to put it mildly, that the dental industry has placed so many mercury fillings for well o ver a century. This industry has had compartmentalized thinking, as have others. They said mercury is locked into people's fillings. This has been proven false. They said it's just a little bit of mercury - but Health Canada has said the fewer mercury fillings the better. Why put a known neurotoxin in people's bodies?

Thank you again for your work on this, and I wish you much luck with your collaborations.

 

So you're saying that wandering around Newcastle at 2am in a blizzard in February, wearing a T shirt in subzero temperatures, is good for people?

That's clearly why I was doing it then, and my quest for a kebab was just an excuse

 

OK good point there : i say that we should investigate more on the subject of vagal activation under controlled conditions

EDIT : I believe that Dr Morten is being researching the response of ME/CFS patients to cold.