Heart Rate Variability and ME/CFS

Yes, I believe he is. Will be interesting to see the results.

My own anecdotal observations of cold water effect:

I have significant issues with OI and blood pooling in the feet and this is unsurprisingly particularly bad when taking a hot shower. A shower seat stops me from fainting altogether but that's about all.

My shower takes a little while to heat up and the cold water coming out initially is very, very cold. I've taken to directing that painfully cold water on to my lower legs (knees down) and feet. The idea was that it would constrict the blood vessels and thus reduce the blood pooling once the shower heats up. I don't know if my hypothesis of the mechanism is correct - maybe it has something to do with sympathetic/parasympathetic/vagal tone/HRV instead? - but it is quite effective. I get through my shower much better.

I only measure HRV once a day, about 4 hours after I have my shower. There is no difference between days when I do have a shower and days when I don't (only comparing 'good' days with or without showers, and excluding PEM days when I never have showers and when my HRV is down because of PEM). So if there is any HRV effect at all it looks to be a very short term one.

 

And my anecdotal observations of cold ambient temperature effect:

Late last winter I thought I'd noticed a correlation between feeling colder and feeling better, so this winter I'm monitoring the relationship more closely. So far it seems to fit. The observations:

• Staying constantly at a slightly uncomfortable cold temperature reduces overall ME symptoms.
• It increases HRV*.
• It decreases resting HR.
• It does not allow me to increase my activity level before triggering PEM.
• It may speed up recovery from PEM.
• It's a fine line. Getting too cold causes PEM.
• It has side-effects: it increases my Raynauds and I've just made the highly unwelcome aquaintance of chilblains for the first time in my life. And of course I'm uncomfortably cold all the time.
• It causes a marital struggle for control of the heatpump remote.

As with the cold water effect, my hypothesis here was that it's to to with constricting the blood vessels in the extremities and having more blood available in the core and brain. But who knows, maybe there's some sympathetic/parasympathetic effect as well or instead.

* I should note that I don't measure pure HRV but some sort of HRV-based algorhythm used by my Polar wrist monitor. I'm too lazy to fiddle with a chest band but am considering getting the Oura ring when the new model comes out for Android (the iPhone one is already out - if anyone has any experience with it I'd love to know).

 

Ouraring (First Generation) An example of my measures, don‘t observe the symptoms in relation to hrv...but hrv is clearly low; i‘m milde/moderate

 

I am tagging @Perrier @ScottTriGuy @feeb @Ravn @Andy @rvallee @diwa @wigglethemouse just to make sure you will see this. Within 3 days i see major differences both in HRV but my symptoms as well :

This is how it looks today :




These are snapshots from the recording process. On the snapshot below observe the 2 valleys. These are extra heartbeats (arrhythmias) :





and here things are more smooth (no valleys). This is from the same recording just today :




Before continuing, arrhythmias (irregular heartbeat) was a problem i had when i had ME/CFS symptoms :

https://forums.phoenixrising.me/thr...onomic-dysfunction-in-mecfs.59420/post-978223


In the past 15 days i started dieting , i would eat my last meal at 20:00 the latest. I then began seeing some old symptoms one of which was irregular heartbeat. Then tinnitus came back and then some fatigue. Within 3 days the motility is restored in my gut, there is no bloating, no constipation and i feel more relaxed ( i was getting anxiety attacks for no reason)

I believe that this happened because of norepinephrine that kicks in to generate lipolysis (= to lose fat). i started reading on ways to lessen norepinephrine and found this :

A yet more interesting quality of magnesium is that it is an NMDA inhibitor (that keeps the excitotoxicity which shows as "tinnitus" - cc @feeb - this is a hypothesis) :


https://www.sciencedirect.com/science/article/pii/S1044576584710128


Interestingly, melatonin (cc @wigglethemouse ) is also an NMDA inhibitor :

https://www.fasebj.org/doi/abs/10.1096/fasebj.21.6.A1277-c


So all i did is start on a very safe dose of magnesium, 250 mg per day. This was a game changer.


Everything is restored apart from sleep (i opened my eyes 2-3 times during the night but was able to go back to sleep immediately). My racing heart rate is now back to 60.


HRV is also a game changer -at least for me- and i will inform SolveCFS about its potential value.

 

More coming up :

 

Sure, around 15-20 days ago (cant remember exactly) i began dieting. The plan was to eat small portions and have the last bite by 20:00. In the first 4-5 days of the diet i began having old symptoms. A bit of tinnitus, my intestines were somewhat bloated. As time passed by within these 15 days my symptoms got much worse. On 5th June i had an Ultrasound at my Liver and Gallbladder area and the doctor said that there was a lot of gas and that i should try to relax because this is the sympathetic nervous system kicking in. This is when it all started coming together.

I began looking at the sympathetic / parasympathetic aspect and found the document of the MEAssociation discussing HRV. I purchased the belt 4 days ago and immediately started getting my HRV. The first reading was a mere 39 (=sympathetic system in overdrive). I began researching more and found magnesium and the role of epinephrine. 3 days ago i started taking magnesium and the supplements that i already take. I began having immediate improvements both in symptoms and HRV. Today was the first day that i woke up without any issues.

 

I am just reporting on what happened to me and will be reporting whether this amelioration of symptoms continues. Obviously I do not want to suggest with my post that magnesium stops ME/CFS!

 

No problem whatsoever !

 

I've actually been taking a 125mg magnesium citrate supplement daily for about 2 months. It seems to have neutralised the suicidal depression I was plagued with every month around ovulation (the reason I started the supplementation in the first place), but it's not made the slightest bit of difference to any M.E. symptoms, including the tinnitus. Will be interesting to see if your observations hold for you longer term.

I've been recording HRV for about 20 days or so and to be honest I've not really noticed any patterns as yet with regards to symptoms. But my HRV will change throughout my menstrual cycle, so I don't expect to be able to draw any useful conclusions from it for another 4-5 months or so. This kind of data tracking is certainly a long game!

 

@Trish,

I was out and couldn't write a proper reply. I wanted to say looking back at all of my posts since Phoenix Rising that i do appear to be over-confident and over-excited. I guess the reason for this was that i wanted to keep going, to have strength to find a solution and to go to the root of the problem.

I do appreciate anyone giving reality checks and i want to Thank you and others who do these reality checks. We definitely need them so as not to be biased.

Unfortunately i cannot say much about Petter Brodin's -from Karolinska- email on what they found. I can say that the vagus nerve may deserve a very close look. I hypothesise that HRV and Vagus stimulation may be applicable for a subset of ME patients. We shall see.

@obeat

Thank you for your post which mentions Mestinon which is an acetylcholinesterase inhibitor.

During my 15 day crash period i made the mistake to try two of these (Mestinon was not tried). I do not know if it is prudent from my side to say which of these 2 were but i feel that i must discuss at least one of them because it added to my problems and i will explain why i think is so.

One of them was the active ingredient Galantamine (aka Reminyl) which is an acetylcholinesterase inhibitor. What i failed to identify before taking it however is that Galantamine increases Glutamate :

I hypothesise that Glutamate along with Liver disease may be the missing pieces of the puzzle *if* a subset of ME patients does not respond to an acetylcholinesterase inhibitor assuming that such a medication is found to be ameliorating ME symptoms to some patients.

EDIT for clarification : I hypothesise that the action of Glutamate is not beneficial to ME patients

 

A couple of studies I found by Googling that may be of interest to the discussion.

https://www.sciencedirect.com/science/article/pii/S0306456506000313
https://sci-hub.se/10.1016/j.jtherbio.2006.01.004

Open access, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4411165/

Open access, https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0072658

 

Do you mean that patients should supplement with glutamate if taking acetylcholinesterase inhibitors?
I think galantamine was trialled about 25 years ago?

 

No I hypothesise that glutamate induces excitotoxicity and therefore will not be beneficial to ME patients and may induce further symptoms. Again, please note that this is a hypothesis

 

There are soooooo many variables it is often hard to see what has been the cause of a downturn and what has a an effect on an upturn. I hope you have found something for you.

May I suggest that if you think Mg is having the positive effect that you stop it for a few days and see if HRV gets lower. If it does go lower restart Mg and see if HRV increases. I know this is hard if you think something is working, but remember if it's not the Mg causing the improvement you may be adding something your body doesn't need.

Many of us think we have found the next great thing, only to discover it no longer works, or it wasn't the thing that caused the improvement after all.

Do you also wear a HR watch that tracks daily resting HR? I was intrigued by @diwa post that shows resting HR inversely correlates with HRV with HRV lagging resting HR slightly (did I get that right?).

 

I also have a irregular heartbeat. Or anyway I'm not sure if it's the right term but I regularly skip beats. Beat-beat-skiiip-beatbeat-beat-beat etc.

I have no idea how to check for that. My heart has been checked several times and it's apparently fine but I've had those skips for a long time and either it's normal or it wasn't noticeable with the tests I did.

I used a Fitbit for a while and it doesn't seem to be part of the data. I guess you need a specific device for that?