Found my problem - it was obvious!

[pgrovetom]

Well I found the answer. Turns out it was hiding in front of my face - and stupid doctors faces also. My blood pressure was low. So low barely any oxygenated blood was passing through my capillaries perfusioning my tissues. It appears my sympathetic nervous system was not innervating my SA node ( heart rate) or myocardium ( heart contractility) sufficiently while sleeping. Everyone's BP dips during sleep ( almost everyone) to give the heart a rest. But this averages around 10-15% for most people. But some people dip far more and if >25% are called extreme dippers. This doesn't cause too many problems when you are young but as one ages, the overall delivery of O2 declines for many reasons and it becomes more and more an issue. Turns out I'm about 30% which is not good. I can now measure this on an overnight Omron BP monitor which records 3 recordings each night. So after many nights, its easy to see both deep sleep and awake and sometimes near on another in time. I can have my BP in the 89/55 range while asleep and 20 minutes later when awake its 140/91.

So that's the answer to my CFS/ME problem. Very basic physiology. Because its blood pressure, my O2 saturation looks just fine. Even places like Stanford don't monitor BP during sleep studies which explains why they didn't catch it. DUH! The FDA has not seen fit to approve an overnight BP monitor so there is no easy way to check yourself. Doctors can order an ambulatory monitor for one night but they need to think of it plus its a hassle and one night's readings are not very thorough if one also has insomnia. The whole thing shows how the medical doctors are not that creative, rather lazy and most are downright stupid. They just happen to have gone to medical school rather than welding or car repair. Make sure your doctor is smart and creative. Dumb doctor's are half the problem. What kind of doctor doesn't think of blood pressure when presented with my facts. A dumb one.

The solution is raising sleep BP just enough to get by. Turns out a drug called Fludrocortisone does just that by mimicking aldosterone in the Kidney RAAS system. So by taking the right dose just before sleep my symptoms stop 100%. Its tricky getting the dosage and timing right but it works.

 

[Hip]

Interesting. Looks like the medical name for low nighttime blood pressure is nocturnal hypotension or extreme dipping (the extreme dipping referring to the excessive drop in blood pressure at night, beyond the normal 10-20% dip).

And you find fludrocortisone before bed rectifies your nocturnal hypotension, and puts your symptoms into complete remission.

For the benefit of anyone else who might have nocturnal hypotension rather than ME/CFS, are there any particular symptoms that you experienced which are a tell-tale sign of nocturnal hypotension? Or were you symptoms just standard ME/CFS symptoms?

Did you have any unusual symptoms which are not standard ME/CFS symptoms in the Canadian consensus criteria, which would give the game away that nocturnal hypotension could be the issue?

I am just interest to know what sort of symptoms might alert someone diagnosed with ME/CFS that they actually have nocturnal hypotension.

 

[pgrovetom]

If your doctor keeps telling you its OSA but CPAP does nothing and sleep studies show nothing, suspect sleep hypotension. If you wake up feeling very ill and have trouble just walking to the bathroom, suspect sleep hypotension. If the myriad of mostly neurological symptoms only seem to occur after you have actually slept, day or night, suspect sleep hypotension. If the symptoms include long term constipation, suspect sleep hypotension. If you awake with a really awful sick feeling and hypo-ventilate for a minute or so to get rid of the excess CO2 and that ill feeling stops, suspect sleep hypotension. If you fall asleep and awake only a few minutes later with the symptoms, get up and walk around and the symptoms stop, suspect sleep hypotension.. If you just want to be sure and an extra few hundred dollars, order an Omron Nightwiew BP monitor and check your sleep BP over a few weeks, you will know one way or the other.

Normally the Sympathetic Nervous System monitors the BP sensors in your Aorta just above the heart and increases the adrenaline outflow to the heart AVS node and myocardium to prevent the pressure from going to low. But there seems to be "feature" of this negative feedback system where the threshold for the sensor pressure is adjusted downward so the heart is given a rest while sleeping. When this adjustment goes to low, one experiences sleep hypotension.

 

[Hip]

If you wake up feeling very ill and have trouble just walking to the bathroom, suspect sleep hypotension. If the myriad of mostly neurological symptoms only seem to occur after you have actually slept, day or night, suspect sleep hypotension. If the symptoms include long term constipation, suspect sleep hypotension. If you awake with a really awful sick feeling and hypo-ventilate for a minute or so to get rid of the excess CO2 and that ill feeling stops, suspect sleep hypotension. If you fall asleep and awake only a few minutes later with the symptoms, get up and walk around and the symptoms stop, suspect sleep hypotension.

Thanks, that is very useful and informative.

I can have my BP in the 89/55 range while asleep and 20 minutes later when awake its 140/91

This study says that the prevalence of nocturnal hypotension in the general population is 9.1% (when defined as a nighttime blood pressure of less than 90/50). And if you use a looser definition of less than 100/60, then 45% of the population have nocturnal hypotension.

So presumably nocturnal hypotension often does not usually cause the sort of symptoms you have experienced, otherwise 9% to 45% of the population would be ill with these symptoms.


So perhaps nocturnal hypotension only causes major symptoms when combined with some other (unknown) condition. Maybe if you have a condition which tends to constrict the capillaries to start with, and then on top of that you have nocturnal hypotension, then maybe that's when symptoms may appear.

For example, Raynaud's causes excessive constriction of small blood vessels.

 

[lightandhope]

My BP is usually 89/40 ish during the day. And has been low my whole life. That is normal for me. I don't think this will be a solution to ME/CFS for most people, but grateful it helped you!

 

[Viala]

Interesting, did you also get PEM after exertion, physical or mental?

 

[pattismith]

Thank you for sharing your story, it may help many other people!

Do you have hyperbicarbonatemia in blood? (or high alkali reserve?);

 

[pgrovetom]

Thanks, that is very useful and informative.





This study says that the prevalence of nocturnal hypotension in the general population is 9.1% (when defined as a nighttime blood pressure of less than 90/50). And if you use a looser definition of less than 100/60, then 45% of the population have nocturnal hypotension.

So presumably nocturnal hypotension often does not usually cause the sort of symptoms you have experienced, otherwise 9% to 45% of the population would be ill with these symptoms.


So perhaps nocturnal hypotension only causes major symptoms when combined with some other (unknown) condition. Maybe if you have a condition which tends to constrict the capillaries to start with, and then on top of that you have nocturnal hypotension, then maybe that's when symptoms may appear.

For example, Raynaud's causes excessive constriction of small blood vessels.

The numbers I used are while taking fludrocortisone. Because of the nature of the symptoms, I have not done recordings without fludrocortisone so do not know how low it gets.

 

[pgrovetom]

Thanks, that is very useful and informative.





This study says that the prevalence of nocturnal hypotension in the general population is 9.1% (when defined as a nighttime blood pressure of less than 90/50). And if you use a looser definition of less than 100/60, then 45% of the population have nocturnal hypotension.

So presumably nocturnal hypotension often does not usually cause the sort of symptoms you have experienced, otherwise 9% to 45% of the population would be ill with these symptoms.


So perhaps nocturnal hypotension only causes major symptoms when combined with some other (unknown) condition. Maybe if you have a condition which tends to constrict the capillaries to start with, and then on top of that you have nocturnal hypotension, then maybe that's when symptoms may appear.

For example, Raynaud's causes excessive constriction of small blood vessels.

That son Fludrocortisone. I have no idea how low it gets without Fludrocortisone so that was just an example of how much it can dip. Its not representative of no Fludrocortisone or before the drug's help.

 

[Hip]

The numbers I used are while taking fludrocortisone. Because of the nature of the symptoms, I have not done recordings without fludrocortisone so do not know how low it gets.

Ah OK, so you nighttime blood pressures could be really low, and maybe that low pressure on its own is enough to create major symptoms.


Is there any alternative to buying an expensive nighttime blood pressure monitor to check for nocturnal hypotension? I mentioned your nocturnal hypotension story in another ME/CFS group, and someone related to your symptoms, and wanted to test for nocturnal hypotension. They asked if it was really necessary to buy a nighttime BP monitor.

I suggested that if you have an ordinary BP meter, and someone to assist you, you could try to fall asleep on the sofa in the evening say, with the BP meter cuff already attached to your arm, and then ask someone to quietly activate the BP meter while you are sleeping, and note the reading.

Do you think that might work?

 

[pgrovetom]

Ah OK, so you nighttime blood pressures could be really low, and maybe that low pressure on its own is enough to create major symptoms.


Is there any alternative to buying an expensive nighttime blood pressure monitor to check for nocturnal hypotension? I mentioned your nocturnal hypotension story in another ME/CFS group, and someone related to your symptoms, and wanted to test for nocturnal hypotension. They asked if it was really necessary to buy a nighttime BP monitor.

I suggested that if you have an ordinary BP meter, and someone to assist you, you could try to fall asleep on the sofa in the evening say, with the BP meter cuff already attached to your arm, and then ask someone to quietly activate the BP meter while you are sleeping, and note the reading.

Do you think that might work?

I doubt a regular arm based cuff BP monitor would work since the pressure it applies is rather strong and would likely wake you up. Even though the Omron device is also a cuff on the wrist, it inflates really gently and slowly and rarely wakes me up. It also took many nights to get enough readings to be sure what I was seeing was real. I had to compare its results against my regular upper arm cuff monitor while awake numerous times at different BP levels to be sure the readings were fairly close. Another option is ask one's doctor to authorize an ambulatory BP monitor which is similar to the Omron. The problem I see here is I doubt they give more than one night like a home pulse-oximeter test. I doubt one night is sufficient but is better than nothing. I had whittled my sleep problem down to where BP was my main suspicion after years of seeing doctors and getting tests to no avail. The $200+ I spent on the Omron seemed cheap given everything I had been through and how it was high on the suspicion list. I was right. Another trick I also used but did not mention was using salt to artificially raise my BP and see what happened.

If you take about a 500mg salt tablet twice a night or a cup of saline water just above 0.9% sodium chloride or isotonic raising your blood sodium causing water to be absorbed into the blood raising BP by increasing volume. If this causes sleep symptoms to stop, you found your problem. It should be done twice a night so your kidney doesn't readjust in in the early morning. I'm trying to say use salt to raise sodium levels to artificially raise BP to test it by simply raising your BP while sleeping. If your doctor will give you Fludrocortisone, it works about the same way but is more easily controlled. Salt is way cheaper than an Omron.

 

[Hip]

If you take about a 500mg salt tablet twice a night or a cup of saline water just above 0.9% sodium chloride or isotonic raising your blood sodium causing water to be absorbed into the blood raising BP by increasing volume. If this causes sleep symptoms to stop, you found your problem. It should be done twice a night so your kidney doesn't readjust in in the early morning.

That sounds quite simple to do, I will pass that info onto him, thanks.

 

[Nat kea]

What is the dosage of fludrocortisone? Do you take it at night?

 

[Byles]

Very happy for you Pgrovetom and thanks for sharing all the details. Also thank you Hip for asking the right questions

 

[pattismith]

@pgrovetom

sorry to ask again, do you have hyperbicarbonatemia in blood? (or high alkali reserve?);

I have low blood pressure and poor blood flow to the brain and muscles and try to understand if my condition relate to your in way or another!

 

[kushami]

I’ve worn a standard cuff-type 24-hour monitor and can confirm that it may not be a great way to check your blood pressure overnight.

Unless you are a deep sleeper, it will wake you up when it activates, giving you a bit of a start, and no doubt affecting your blood pressure.

Also, wearing the gadget is somewhat disruptive in itself, and you can’t get used to it as it is only for one night.

My results showed that my BP was not dipping by the normal amount overnight, but my doctor and I agreed that it might not be accurate given that I had been awake most of the night. (We mostly needed results to look for elevated daytime BP.)

 

[kushami]

The Omron NightView looks like the model. It seems to be available in the UK but not Australia, the US or Canada. Presume it is available in Japan (Omron is a Japanese company) and perhaps some other Asian countries.

I might buy one if it becomes available in Australia in the next year or two. When I’m not well, putting on the cuff model can be a bit of a pfaff.


Edit: Just found some reviews in German, so it’s obviously available in Germany. Wrote a summary of what they said then accidentally deleted it. But do have a mosey around reviews if you can. People thought the wrist device itself was good, but didn’t like the preset nighttime measurement intervals, and a few didn’t like the app.

I think it requires you to use an app (I could be wrong), which would rule it out for me.