08-23-2021, 05:51 PM
CSA and Diet? your thoughts/experience please.
CSA and Diet? your thoughts/experience please.
CSA and Diet? your thoughts/experience please.
Some background before getting to the diet question and why.
I am a 65-year-old male and I deal with CSA I believe resulted from a traumatic head injury in high school (a serious blow to the base of my scull…knocked unconscious, concussion, no hospitalization). I have known that I frequently stopped breathing while sleeping since my marriage in 1974 when I was 18 as my wife of 47 years will testify.
It never occurred to me I should be concerned until my CSA made a dramatic manifestation of itself in 1993 on the South rim of the Grand Canyon at an elevation of 6600 ft. in the form of Chain Stokes Breathing…For the three nights I was at 6600 ft. I thought I was dying. It subsided when I returned to a lower elevation, so I just chalked it up to the elevation and took no steps for a diagnosis until 2007. I retired from my career occupation of construction in 2006 and took up wooden yacht construction at sea level in Thomaston ME. Within a year my breathing degenerated into a nightly marathon of waking gasping for air, falling asleep, waking gasping for air, repeat-repeat-repeat….
I left the boatyard in 2007 thinking my degrading condition may be related to the work environment and while I still had insurance coverage from the boatyard, I proceeded to have two sleep studies back-to-back. I was convinced from research that what I was experiencing was CSA. From the sleep study reports my pulmonologist insisted it was obstructive while I was still convinced it was CSA. Being compliant I started CPAP treatment. I was told to give it 6 months in a let’s see what happens approach. I got no follow up calls, was not asked to do any follow up visits, gave it the 6 months, and never went back. CPAP had no effect, so I just lived with it. Since then, my episodes settled into a cycle of what I refer to as mild, moderate, and severe. (Not necessarily in that order)
At the time I was inexperienced and had no backup from a forum like Apneaboard…Only recently have I appreciated from members on the Apneaboard that I had to advocate for myself and give no quarter if I expected any help from my providers. I am so grateful for the advice and answers I solicited here at Apreaboard.
On the advice from members, I began to advocate for myself and got the attention I thought was appropriate. However, I have never stopped researching for possible treatments that could/might/maybe have some positive outcome.
As I’ve gotten older the apnea settled into a mild to moderate cycle and my ability to function and work degenerated to the point that last fall (2020) I was only able to work 3 – 4 hours a day 2 – 3 days a week…the rest of the time was for resting as sleep was so elusive.
At this point it was time to see my GP who ordered a home sleep study (no three month wait). With that an appointment was made with a pulmonologist (same one from 2007) this time my pulmonologist spent over two hours with me and concluded…positively…what I was experiencing was CSA and prescribe a Airsense 10 autoset to start with.
After 3 months of treatment and adjustments to settings and equipment it was determined by my pulmonologist that my Airsense 10 autoset had no positive affect on my condition. He decided to move me on to a BPAP machine and scheduled a sleep study.
However about 3 weeks prior to this conclusion...I made a major lifestyle change that dramatically improved my ability to sleep through the night...undisturbed. It should be noted that the first half of the night on my equipment proved pointless (4 hours for insurance compliance) having no effect on my apnea. The second half of the night was always better, off the equipment.
So…I would like to share recent developments and what led to them…I recently happened upon a documentary (Fat-A Documentary). In part of it they spent some time on how a high fat, low carbohydrate diet could dramatically improve/lessen the frequency or totally stop seizures in childhood epilepsy. One person they interviewed in the documentary is J.J. Abrams the Hollywood director who has a son with epilepsy. Abrams sons seizures were dramatically reduced within two days after starting and totally stopped a short time later. Abrams founded the Charlie Foundation (look up the website. Lots of related information.
The foregoing information led to researching Ketogenic diet and its association with neurological disorders like epilepsy.
Additional research led to a plethora of articles on the National Center for Biotechnology Information, US National Library of Medicine website. On the website type in (ketogenic diets neurology) to find the articles.
My conclusion was that since CSA is a neurological issue. The brain simply stops telling a person to take a breath…why not try a high fat low carbohydrate diet.
Consulting my GP, I changed my diet from a well-balanced doctor recommended program to a high fat, low carbohydrate diet...basically a Keto diet.
I continued the use of the of my equipment during the three weeks leading up to my pulmonologists prescribing discontinued use of the CPAP equipment.
I didn’t notice any change while using my equipment until I took a break from using it several days in…I slept through the night with little disturbance. The best night sleep I’ve had in thirty years. I continued the use of the machine while I had it, to see if it might measure some differences. The differences it reported were enough that when I visited my pulmonologist two weeks later…the first words out of his mouth when he entered the exam room were “what have you been doing?” While my events have decrease little, the duration and type of event have.
Before the diet change, one of my complaints to my doctor was that using the equipment was just as disruptive to my ability to sleep/rest as the disorder itself. While I had the machine and didn’t have to remain in compliance for my insurance coverage, I stopped using the machine for two or three days at a time and slept wonderfully. I would then use the machine hoping it would record why? It didn’t…each time I tried to use the machine I had a really disrupted 4 hours use…then I took it off and it was better. The following night without equipment use was yet again wonderful. Tried the equipment…had a terrible night. The machine reported all my apneas as usual.
Based on the machine reports, my doctor ordered a sleep study for Thursday August 19, 2021.
Up until this most recent study my nightly sleep without the equipment has been wonderful. When I arrived for the study, I learned that it was to be done using a BIPAP machine. Having slept so well since the diet change it made more sense to me to do a split study to see if we might set a new benchmark for the second half of the study.
While we waited for the response from my doctor the techs wired me up and put me on the BIPAP machine while waiting to hear back (approximately 30 to 40 min on the machine).
My doctor said yes…that makes sense, so I was taken off from the BIPAP machine for the first half of the study.
I had the worst night in 2 ½ months and ended up not having enough time for the second half of the study. The following nights since, my sleep has been sweet.
Since the diet change, 2 ½ months ago, I have gone from being able to work 2 - 3 days a week 3 – 4 hours a day to 7 days a week 8 – 14 hours a day. I’m self-employed and in the marine construction industry.
A few questions:
Has anyone out there had a similar experience with a diet or lifestyle change? If so, would you share it?
Is it possible that being on the equipment exacerbates my condition?
Is it possible that being on the equipment for the first half of the night disrups the breathing rythm for the rest of the night resulting in a less than best second half of the night?
Does it make sense to request a home sleep study for several nights just to see if through the night I’m having any events even though I’m sleeping so well? (I know it won’t determine what kind of events)
Is it possible that being on the BIPAP machine for 30 – 40 minutes in the most recent study, spoiled the study?
Thank you for your patience…I’m just waiting now to here from my doctor for a review of the study and what the next step is if any.
Kind regards,
BFair2all
CSA and Diet? your thoughts/experience please.
Some background before getting to the diet question and why.
I am a 65-year-old male and I deal with CSA I believe resulted from a traumatic head injury in high school (a serious blow to the base of my scull…knocked unconscious, concussion, no hospitalization). I have known that I frequently stopped breathing while sleeping since my marriage in 1974 when I was 18 as my wife of 47 years will testify.
It never occurred to me I should be concerned until my CSA made a dramatic manifestation of itself in 1993 on the South rim of the Grand Canyon at an elevation of 6600 ft. in the form of Chain Stokes Breathing…For the three nights I was at 6600 ft. I thought I was dying. It subsided when I returned to a lower elevation, so I just chalked it up to the elevation and took no steps for a diagnosis until 2007. I retired from my career occupation of construction in 2006 and took up wooden yacht construction at sea level in Thomaston ME. Within a year my breathing degenerated into a nightly marathon of waking gasping for air, falling asleep, waking gasping for air, repeat-repeat-repeat….
I left the boatyard in 2007 thinking my degrading condition may be related to the work environment and while I still had insurance coverage from the boatyard, I proceeded to have two sleep studies back-to-back. I was convinced from research that what I was experiencing was CSA. From the sleep study reports my pulmonologist insisted it was obstructive while I was still convinced it was CSA. Being compliant I started CPAP treatment. I was told to give it 6 months in a let’s see what happens approach. I got no follow up calls, was not asked to do any follow up visits, gave it the 6 months, and never went back. CPAP had no effect, so I just lived with it. Since then, my episodes settled into a cycle of what I refer to as mild, moderate, and severe. (Not necessarily in that order)
At the time I was inexperienced and had no backup from a forum like Apneaboard…Only recently have I appreciated from members on the Apneaboard that I had to advocate for myself and give no quarter if I expected any help from my providers. I am so grateful for the advice and answers I solicited here at Apreaboard.
On the advice from members, I began to advocate for myself and got the attention I thought was appropriate. However, I have never stopped researching for possible treatments that could/might/maybe have some positive outcome.
As I’ve gotten older the apnea settled into a mild to moderate cycle and my ability to function and work degenerated to the point that last fall (2020) I was only able to work 3 – 4 hours a day 2 – 3 days a week…the rest of the time was for resting as sleep was so elusive.
At this point it was time to see my GP who ordered a home sleep study (no three month wait). With that an appointment was made with a pulmonologist (same one from 2007) this time my pulmonologist spent over two hours with me and concluded…positively…what I was experiencing was CSA and prescribe a Airsense 10 autoset to start with.
After 3 months of treatment and adjustments to settings and equipment it was determined by my pulmonologist that my Airsense 10 autoset had no positive affect on my condition. He decided to move me on to a BPAP machine and scheduled a sleep study.
However about 3 weeks prior to this conclusion...I made a major lifestyle change that dramatically improved my ability to sleep through the night...undisturbed. It should be noted that the first half of the night on my equipment proved pointless (4 hours for insurance compliance) having no effect on my apnea. The second half of the night was always better, off the equipment.
So…I would like to share recent developments and what led to them…I recently happened upon a documentary (Fat-A Documentary). In part of it they spent some time on how a high fat, low carbohydrate diet could dramatically improve/lessen the frequency or totally stop seizures in childhood epilepsy. One person they interviewed in the documentary is J.J. Abrams the Hollywood director who has a son with epilepsy. Abrams sons seizures were dramatically reduced within two days after starting and totally stopped a short time later. Abrams founded the Charlie Foundation (look up the website. Lots of related information.
The foregoing information led to researching Ketogenic diet and its association with neurological disorders like epilepsy.
Additional research led to a plethora of articles on the National Center for Biotechnology Information, US National Library of Medicine website. On the website type in (ketogenic diets neurology) to find the articles.
My conclusion was that since CSA is a neurological issue. The brain simply stops telling a person to take a breath…why not try a high fat low carbohydrate diet.
Consulting my GP, I changed my diet from a well-balanced doctor recommended program to a high fat, low carbohydrate diet...basically a Keto diet.
I continued the use of the of my equipment during the three weeks leading up to my pulmonologists prescribing discontinued use of the CPAP equipment.
I didn’t notice any change while using my equipment until I took a break from using it several days in…I slept through the night with little disturbance. The best night sleep I’ve had in thirty years. I continued the use of the machine while I had it, to see if it might measure some differences. The differences it reported were enough that when I visited my pulmonologist two weeks later…the first words out of his mouth when he entered the exam room were “what have you been doing?” While my events have decrease little, the duration and type of event have.
Before the diet change, one of my complaints to my doctor was that using the equipment was just as disruptive to my ability to sleep/rest as the disorder itself. While I had the machine and didn’t have to remain in compliance for my insurance coverage, I stopped using the machine for two or three days at a time and slept wonderfully. I would then use the machine hoping it would record why? It didn’t…each time I tried to use the machine I had a really disrupted 4 hours use…then I took it off and it was better. The following night without equipment use was yet again wonderful. Tried the equipment…had a terrible night. The machine reported all my apneas as usual.
Based on the machine reports, my doctor ordered a sleep study for Thursday August 19, 2021.
Up until this most recent study my nightly sleep without the equipment has been wonderful. When I arrived for the study, I learned that it was to be done using a BIPAP machine. Having slept so well since the diet change it made more sense to me to do a split study to see if we might set a new benchmark for the second half of the study.
While we waited for the response from my doctor the techs wired me up and put me on the BIPAP machine while waiting to hear back (approximately 30 to 40 min on the machine).
My doctor said yes…that makes sense, so I was taken off from the BIPAP machine for the first half of the study.
I had the worst night in 2 ½ months and ended up not having enough time for the second half of the study. The following nights since, my sleep has been sweet.
Since the diet change, 2 ½ months ago, I have gone from being able to work 2 - 3 days a week 3 – 4 hours a day to 7 days a week 8 – 14 hours a day. I’m self-employed and in the marine construction industry.
A few questions:
Has anyone out there had a similar experience with a diet or lifestyle change? If so, would you share it?
Is it possible that being on the equipment exacerbates my condition?
Is it possible that being on the equipment for the first half of the night disrups the breathing rythm for the rest of the night resulting in a less than best second half of the night?
Does it make sense to request a home sleep study for several nights just to see if through the night I’m having any events even though I’m sleeping so well? (I know it won’t determine what kind of events)
Is it possible that being on the BIPAP machine for 30 – 40 minutes in the most recent study, spoiled the study?
Thank you for your patience…I’m just waiting now to here from my doctor for a review of the study and what the next step is if any.
Kind regards,
BFair2all
