Slow sleeping heart rate and CFS and my new pacemaker

[Pgrovetom]

I was diagnosed with CFS at Stanford years ago and helped fund the Robert K. Naviaux 2016 metabolomics study. I had a myriad of symptoms and played wackamo with them for years while seeing dozens of doctors. I always knew my problems were related to sleep but didn't know if it was cause or effect. In the last few years I came to discover I had a low heart rate during sleep which was starving my body and brain of Oxygen while sleeping. I finally convinced my doctor and cardiologist it was responsible for many of my problems which were worsening. I had a pacemaker implanted 3 weeks and most of my bodywide problems have resolved and I feel much better. Anyone with sleep related ME/CFS symptoms should make sure their heart is supplying enough Oxygen while sleeping. Lack of Oxygen can cause symptoms everywhere and since doctors operate in specialties, they often don't have a clue that this is the actual problem. They typically think you have sleep apnea but if you test that you don't and its your heart rate while asleep, its a big problem getting help.

 

[ThereseFlower]

I was diagnosed with CFS at Stanford years ago and helped fund the Robert K. Naviaux 2016 metabolomics study. I had a myriad of symptoms and played wackamo with them for years while seeing dozens of doctors. I always knew my problems were related to sleep but didn't know if it was cause or effect. In the last few years I came to discover I had a low heart rate during sleep which was starving my body and brain of Oxygen while sleeping. I finally convinced my doctor and cardiologist it was responsible for many of my problems which were worsening. I had a pacemaker implanted 3 weeks and most of my bodywide problems have resolved and I feel much better. Anyone with sleep related ME/CFS symptoms should make sure their heart is supplying enough Oxygen while sleeping. Lack of Oxygen can cause symptoms everywhere and since doctors operate in specialties, they often don't have a clue that this is the actual problem. They typically think you have sleep apnea but if you test that you don't and its your heart rate while asleep, its a big problem getting help.

I know that sometimes while I am sleeping, my heart rate has been caught in the 40's, but it doesn't stay there all night. I have also suspected sleep apnea, but cannot afford to be tested for that anytime soon.
What would you suggest would be a concern for night-time heart rate? How long a period of time did your rate drop at night and how consistently low was it?

 

[Pgrovetom]

I wrote an entire reply and it got deleted.

Try an Oura ring to monitor your heart rate and o2.
You can buy a cheap pulse oximeter and watch your heart rate as you are about to fall asleep.
You can get a recording pulseoximeter that works with your cell phone on Amazon

Depending on your age and fitness, a heart rate from the 30 - 50 can cause a problem in O2 delivery. A young mountain climber or athlete can usually tolerate a rate in the 30's while an older person in poor shape, it can begin in the 40''s.
Certain drugs ( Gabapentin, opioids...) can make it worse. Coffee can make it worse as adensosine rebounds at night.
Taking small doses of caffeine or theophyline before sleeping and upon each awakening can help by boosting your heart rate a little and modifying your adenosine system ( lowering adenosine)..

Adenosine is ATP's base and raised adenosine can slow your heart by blocking adenosine receptors. Not much. ATP is broken down during sleep to ADP and adenosine.

Its complicated and no doctors can help if you can't prove it and convince them.

 

[Not dead yet!]

I was diagnosed with CFS at Stanford years ago and helped fund the Robert K. Naviaux 2016 metabolomics study. I had a myriad of symptoms and played wackamo with them for years while seeing dozens of doctors. I always knew my problems were related to sleep but didn't know if it was cause or effect. In the last few years I came to discover I had a low heart rate during sleep which was starving my body and brain of Oxygen while sleeping. I finally convinced my doctor and cardiologist it was responsible for many of my problems which were worsening. I had a pacemaker implanted 3 weeks and most of my bodywide problems have resolved and I feel much better. Anyone with sleep related ME/CFS symptoms should make sure their heart is supplying enough Oxygen while sleeping. Lack of Oxygen can cause symptoms everywhere and since doctors operate in specialties, they often don't have a clue that this is the actual problem. They typically think you have sleep apnea but if you test that you don't and its your heart rate while asleep, its a big problem getting help.

Great to hear this!

Same with apnea issues. It's a much bigger issue than people realize.

Too bad most of us have to have a heart attack to get a pacemaker.

 

[ThereseFlower]

I definitely do not want a pacemaker. The newer ones all 'track' you. If I can show a doctor the low nighttime heart rate, could I just get night-time 02 ordered instead? When I finally get Medicare, I mean.

 

[Not dead yet!]

I definitely do not want a pacemaker. The newer ones all 'track' you. If I can show a doctor the low nighttime heart rate, could I just get night-time 02 ordered instead? When I finally get Medicare, I mean.

No idea. Depends on your doc. A CPAP plus Oxygen concentrator setup can be had aftermarket for about $1000-$1500 out of pocket. But you might also want an emergency power supply for those rare times electricity goes out. Probably another $1000 for a 1000W one that will last you two days at least.

 

[ThereseFlower]

Thanks. I didn't know that backup power for one machine with no need for a generator was even a thing available.

 

[Zapped]

I was diagnosed with CFS at Stanford years ago and helped fund the Robert K. Naviaux 2016 metabolomics study. I had a myriad of symptoms and played wackamo with them for years while seeing dozens of doctors. I always knew my problems were related to sleep but didn't know if it was cause or effect. In the last few years I came to discover I had a low heart rate during sleep which was starving my body and brain of Oxygen while sleeping. I finally convinced my doctor and cardiologist it was responsible for many of my problems which were worsening. I had a pacemaker implanted 3 weeks and most of my bodywide problems have resolved and I feel much better. Anyone with sleep related ME/CFS symptoms should make sure their heart is supplying enough Oxygen while sleeping. Lack of Oxygen can cause symptoms everywhere and since doctors operate in specialties, they often don't have a clue that this is the actual problem. They typically think you have sleep apnea but if you test that you don't and its your heart rate while asleep, its a big problem getting help.

I did the same, pacemaker last month after measuring heart rate at a low of 4 beats per minute! Now, my bpm is now at 60 but I still have terrible sleep problem, namely due to underlying anxiety! I am considering going back on benzos after having stopped them cold turkey in Jun, 2021, 19 months ago.
I have not been able to shake this particular post acute withdrawal symptoms and don’t foresee further relief. (Warning: do not make the same mistake by stopping cold, perhaps, if at all!)

 

[ThereseFlower]

Wow, that's a long time to be in withdrawal mode. I felt that when I stopped cold turkey from anti-depressants, plus sinemet and klonopin, etc...seemed like two years to begin to level out.

 

[Zapped]

Wow, that's a long time to be in withdrawal mode. I felt that when I stopped cold turkey from anti-depressants, plus sinemet and klonopin, etc...seemed like two years to begin to level out.

I would have had a really worse time of withdrawal had I not visited a number of YouTube narratives on PAWS (Post Acute Withdrawal Syndrome). The first year w/d was awful and now I am feeling the significant differences w/o benzos over halfway in year two.

While the emotional insights are great the attendant anxiety remains troublesome, again, especially with sleep. This was the case PRIOR to benzo use. It seems I’m having to learn to sleep anew! Did you go through such a phase?

 

[Aidan Walsh]

I was diagnosed with CFS at Stanford years ago and helped fund the Robert K. Naviaux 2016 metabolomics study. I had a myriad of symptoms and played wackamo with them for years while seeing dozens of doctors. I always knew my problems were related to sleep but didn't know if it was cause or effect. In the last few years I came to discover I had a low heart rate during sleep which was starving my body and brain of Oxygen while sleeping. I finally convinced my doctor and cardiologist it was responsible for many of my problems which were worsening. I had a pacemaker implanted 3 weeks and most of my bodywide problems have resolved and I feel much better. Anyone with sleep related ME/CFS symptoms should make sure their heart is supplying enough Oxygen while sleeping. Lack of Oxygen can cause symptoms everywhere and since doctors operate in specialties, they often don't have a clue that this is the actual problem. They typically think you have sleep apnea but if you test that you don't and its your heart rate while asleep, its a big problem getting help.

Did all your symptoms go away entirely? How about exercise are you able to run or lift weights & lead a normal life? Did it resolve all ME/CFS? What about metal allergies like nickel or cobalt do you have any?

 

[buckey]

I wake at, like clock work lol,
3a.m.,..3:12...3:14 etc. Then I'm wide awake the rest of the night until I am able to fall back asleep at about 6:30am, sometimes 7am
It's really bizarre. I think with all my Chem. Sen. And allergy, I'm not breathing properly.i refused the nasal surgery as I know it's a matter of time before the tissue grows back....hence people with multiple nasal surgeries