I've posted a couple of times I thought I had figured out what is causing my problems. In each case I had only tracked down the source of symptoms but not the underlying cause. Now I got it.
For over 15 years I've had a myriad of symptoms ranging from sleep to neurological to immune related to GI IBS related and CFS/ME like overall. I had gone to the Stanford ME/CFS Clinic run by Montoya over 10 years ago and was diagnosed with CFS/ME. Montoya did very little before I moved on looking for the underlying problem. I always new that my issues seem to stem from something going on in my sleep. But I never really knew if it was the chicken or egg. I had multiple sleep studies at Stanford and others locally and at the Mayo Clinic. I'd seen Stanford, UCSF, Mayo Clinic and John Hopkins doctors. The sleep studies showed less than mild obstructive sleep apnea but I tried UPPP surgery at Stanford and 3 different CPAP machines to be absolutely sure. No luck. But over the years my suspicion about something going on while asleep grew. I was 90% sure that something going on while asleep was the underlying cause. But my O2 saturation was always in the 90% range, my OSI index was <5 and nothing was observable on a camera even if I awoke very very ill. Very mysterious!
In 2021 things got far worse during sleep. So I tried a trick. I put a pulse oximeter on my finger before sleep and as my body started to go into that falling asleep mode, I saw my heart rate begin to drop precipitously. Right up to that feeling I was about to fall asleep in that never never land my heart rate was around 60BPM. That's normal. But as I began slipping away it began to drop at about a 1 BPM per second and around 45-46BPM, I began feeling pain all over my body and very ill. That freaked me out and I awoke, stood up and my heart rate immediately went back to about 60BPM and within a minute or so all the symptoms just stopped. So I used my recording pulse oximeter to record my O2 sat and heart rate all night and it showed my O2 sat was in the 90% range but my heart rate dropped quickly upon falling asleep to the high 30's range. I thought I had it. My cardiologist implanted a pacemaker and my heart then would not go below 60BPM. That relieved maybe 50% of symptoms but not everything. So I arranged a sleep study at Stanford and asked specifically for a nasal CO2 monitor. I suspected my heart was not pumping hard enough and maybe my blood pressure was also low or I was hypo-ventilating. Either would cause my problems and lead to inadequate CO2 exhaustion. If CO2 builds up in your blood, your PH drops and will cause respiratory acidosis.
The Stanford sleep doctor forgot the CO2 monitor on the order and then left Stanford before I could get a read out on my study. Another Stanford sleep doctor said my study looked normal. I asked about the CO2 and because she didn't order the study, copped out. I asked to see neurology because its the hypothalamus running the sympathetic nervous system regulating the heart rate, heart contractility and blood pressure in general. She wouldn't help but requested I get a POTS test. Since my problem was sleep only and not awake and I had passed POTS tests in the past while awake but she insisted even if it was silly.
So I decided to find myself a night blood pressure monitor and simply test myself. I also learned that if one has excess CO2 in your blood due to inadequate exhaustion, hyperventilating will clear it and respiratory acidosis will clear and your PH will return to around 7.4 = normal. So upon awaking and feeling terribly sick, I tried hyperventilating for a few minutes and the ill feeling went away in a few minutes. So I tried taking salt tablets before falling asleep and again after waking around 2-3AM and it stopped my IBS-C constipation and most of the remaining symptoms. By eating salt one increases your blood sodium and where sodium goes water follows and the increased blood volume increases blood pressure. Not a good long term solution but a simple way to increase sleep blood pressure for a few nights. It worked.
So then I got an Omron night blood pressure monitor which does 3 readings during the night. It records ones BP using a wrist mellow cuff at 2AM, 4AM and 4 hours after the sleep button is pushed. If I push the sleep button at 11PM, it will do a recording at 11PM + 4 hours = 3AM. That means I get a recording at 2AM, 3AM and 4AM for example. It turns there is a concept in cardiology called dipping. Dipping means your blood pressure dips while sleeping under the control of the sympathetic nervous system that innervates the heart rate and contractility ( how hard it pumps). Most people dip about 10% and its normal and good. But that's the middle of a bell curve and some people actually have a rise in BP = bad while others can have >20% dipping. Those people are classified as extreme dippers. Its actually healthy for the heart since the heart gets to rest during sleep. But if it goes to low, it can cause hypo-tension and tissue perfusion problems and CO2 exhaust problems. I discovered that my blood pressure dips about 25% give or take every night between awake and sleep. Looks like I'm an extreme dipper.
I don't know about hypo-ventilation yet but if my sympathetic innervation is low to the heart, it could also be low to everywhere including my GI tract, my breathing muscles, my adrenal medulla ( low adrenaline as a blood hormone) etc... Normally the hypothalamus monitors the chemo-receptors ( CO2 mostly but O2 less) and baro-receptors (BP) and adjusts the sympathetic targeted outflow and adrenaline release at the various target organs like the heart etc to regulate respiration during sleep. If this negative feedback control loop gain gets down regulated, the set point can be low or loose and then one gets sleep hypotension or hypoventilation or low adrenal adrenaline hormones or insufficient GI motility ( IBS-C) etc...
I don't know yet if its either one or all of the above but raising my blood pressure via a drug called fludrocortisone relieves my symptoms including constipation. But fludrocortisone acts like aldosterone on the kidney causing an increase in sodium retention similar to my salt test. But it builds up and is now causing my daytime BP to rise. So the trick will be to figure out how to raise sleep BP just enough while not messing up daytime blood pressure. That may be tough.
That's where it stands but I thought others could have a similar problem. It can be very subtle and as you have heard from me, very hard to detect. Plus doctors don't tend to think broadly and it took my investigation to find it even after many sleep studies. Love to hear your thoughts.
For over 15 years I've had a myriad of symptoms ranging from sleep to neurological to immune related to GI IBS related and CFS/ME like overall. I had gone to the Stanford ME/CFS Clinic run by Montoya over 10 years ago and was diagnosed with CFS/ME. Montoya did very little before I moved on looking for the underlying problem. I always new that my issues seem to stem from something going on in my sleep. But I never really knew if it was the chicken or egg. I had multiple sleep studies at Stanford and others locally and at the Mayo Clinic. I'd seen Stanford, UCSF, Mayo Clinic and John Hopkins doctors. The sleep studies showed less than mild obstructive sleep apnea but I tried UPPP surgery at Stanford and 3 different CPAP machines to be absolutely sure. No luck. But over the years my suspicion about something going on while asleep grew. I was 90% sure that something going on while asleep was the underlying cause. But my O2 saturation was always in the 90% range, my OSI index was <5 and nothing was observable on a camera even if I awoke very very ill. Very mysterious!
In 2021 things got far worse during sleep. So I tried a trick. I put a pulse oximeter on my finger before sleep and as my body started to go into that falling asleep mode, I saw my heart rate begin to drop precipitously. Right up to that feeling I was about to fall asleep in that never never land my heart rate was around 60BPM. That's normal. But as I began slipping away it began to drop at about a 1 BPM per second and around 45-46BPM, I began feeling pain all over my body and very ill. That freaked me out and I awoke, stood up and my heart rate immediately went back to about 60BPM and within a minute or so all the symptoms just stopped. So I used my recording pulse oximeter to record my O2 sat and heart rate all night and it showed my O2 sat was in the 90% range but my heart rate dropped quickly upon falling asleep to the high 30's range. I thought I had it. My cardiologist implanted a pacemaker and my heart then would not go below 60BPM. That relieved maybe 50% of symptoms but not everything. So I arranged a sleep study at Stanford and asked specifically for a nasal CO2 monitor. I suspected my heart was not pumping hard enough and maybe my blood pressure was also low or I was hypo-ventilating. Either would cause my problems and lead to inadequate CO2 exhaustion. If CO2 builds up in your blood, your PH drops and will cause respiratory acidosis.
The Stanford sleep doctor forgot the CO2 monitor on the order and then left Stanford before I could get a read out on my study. Another Stanford sleep doctor said my study looked normal. I asked about the CO2 and because she didn't order the study, copped out. I asked to see neurology because its the hypothalamus running the sympathetic nervous system regulating the heart rate, heart contractility and blood pressure in general. She wouldn't help but requested I get a POTS test. Since my problem was sleep only and not awake and I had passed POTS tests in the past while awake but she insisted even if it was silly.
So I decided to find myself a night blood pressure monitor and simply test myself. I also learned that if one has excess CO2 in your blood due to inadequate exhaustion, hyperventilating will clear it and respiratory acidosis will clear and your PH will return to around 7.4 = normal. So upon awaking and feeling terribly sick, I tried hyperventilating for a few minutes and the ill feeling went away in a few minutes. So I tried taking salt tablets before falling asleep and again after waking around 2-3AM and it stopped my IBS-C constipation and most of the remaining symptoms. By eating salt one increases your blood sodium and where sodium goes water follows and the increased blood volume increases blood pressure. Not a good long term solution but a simple way to increase sleep blood pressure for a few nights. It worked.
So then I got an Omron night blood pressure monitor which does 3 readings during the night. It records ones BP using a wrist mellow cuff at 2AM, 4AM and 4 hours after the sleep button is pushed. If I push the sleep button at 11PM, it will do a recording at 11PM + 4 hours = 3AM. That means I get a recording at 2AM, 3AM and 4AM for example. It turns there is a concept in cardiology called dipping. Dipping means your blood pressure dips while sleeping under the control of the sympathetic nervous system that innervates the heart rate and contractility ( how hard it pumps). Most people dip about 10% and its normal and good. But that's the middle of a bell curve and some people actually have a rise in BP = bad while others can have >20% dipping. Those people are classified as extreme dippers. Its actually healthy for the heart since the heart gets to rest during sleep. But if it goes to low, it can cause hypo-tension and tissue perfusion problems and CO2 exhaust problems. I discovered that my blood pressure dips about 25% give or take every night between awake and sleep. Looks like I'm an extreme dipper.
I don't know about hypo-ventilation yet but if my sympathetic innervation is low to the heart, it could also be low to everywhere including my GI tract, my breathing muscles, my adrenal medulla ( low adrenaline as a blood hormone) etc... Normally the hypothalamus monitors the chemo-receptors ( CO2 mostly but O2 less) and baro-receptors (BP) and adjusts the sympathetic targeted outflow and adrenaline release at the various target organs like the heart etc to regulate respiration during sleep. If this negative feedback control loop gain gets down regulated, the set point can be low or loose and then one gets sleep hypotension or hypoventilation or low adrenal adrenaline hormones or insufficient GI motility ( IBS-C) etc...
I don't know yet if its either one or all of the above but raising my blood pressure via a drug called fludrocortisone relieves my symptoms including constipation. But fludrocortisone acts like aldosterone on the kidney causing an increase in sodium retention similar to my salt test. But it builds up and is now causing my daytime BP to rise. So the trick will be to figure out how to raise sleep BP just enough while not messing up daytime blood pressure. That may be tough.
That's where it stands but I thought others could have a similar problem. It can be very subtle and as you have heard from me, very hard to detect. Plus doctors don't tend to think broadly and it took my investigation to find it even after many sleep studies. Love to hear your thoughts.
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