I've tried everything and nothing helps. Any tips?

[jcunningham7]

I'm a 25 year old male who's had symptoms of sleep apnea since I was about 12 years old and I was officially diagnosed with severe OSA about 5 years ago at the age of 20. I'm slim/in shape, exercise regularly, never have smoked and have no other health problems. I have tried pretty much everything under the sun to combat the excessive daytime sleepiness including surgery to open my airway, CPAP, and Provigil and nothing seems to work for me. I always seem to wake up in the morning more tired than I went to sleep the night before. I've went to a second ENT doctor and he told me my surgery was done perfectly and there was nothing else he could do. I've had a second sleep study done a couple of months ago and had my pressure retitrated to 11 cwp and also tried a new style of mask. I've taken caffeine pills a few times and the energy boost only lasts for about 25 minutes before I'm tired again. I've had blood and urine samples taken and the only thing my doctor found was that I had low vitamin D levels, for which I have been taking supplements and my current levels are in a healthy range. Most recently, I was prescribed Provigil which does very little for me. For very short periods of time, maybe 30 minutes or so, while on Provigil I'll have a laser like focus with no energy gain and yet somehow I still get a major crash soon after and I'll want to do nothing but sleep. I've heard that people who suffer from depression can have problems with their energy levels as well, but I have no other symptoms of depression and I'm always in a good mood. I want nothing more than to wake up every morning feeling fully rested. Is there anything left to try?

[Todzo]

I'm a 25 year old male who's had symptoms of sleep apnea since I was about 12 years old and I was officially diagnosed with severe OSA about 5 years ago at the age of 20. I'm slim/in shape, exercise regularly, never have smoked and have no other health problems. I have tried pretty much everything under the sun to combat the excessive daytime sleepiness including surgery to open my airway, CPAP, and Provigil and nothing seems to work for me. I always seem to wake up in the morning more tired than I went to sleep the night before. I've went to a second ENT doctor and he told me my surgery was done perfectly and there was nothing else he could do. I've had a second sleep study done a couple of months ago and had my pressure retitrated to 11 cwp and also tried a new style of mask. I've taken caffeine pills a few times and the energy boost only lasts for about 25 minutes before I'm tired again. I've had blood and urine samples taken and the only thing my doctor found was that I had low vitamin D levels, for which I have been taking supplements and my current levels are in a healthy range. Most recently, I was prescribed Provigil which does very little for me. For very short periods of time, maybe 30 minutes or so, while on Provigil I'll have a laser like focus with no energy gain and yet somehow I still get a major crash soon after and I'll want to do nothing but sleep. I've heard that people who suffer from depression can have problems with their energy levels as well, but I have no other symptoms of depression and I'm always in a good mood. I want nothing more than to wake up every morning feeling fully rested. Is there anything left to try?

Hi jcunningham7!

Well you could try pulse oximetery guided optimal breathing. I was listening to a Dr. Park expert interview series (Sleep Apnea Subjects) on Buteyko breathing. The discussion about over breathing, hyperventilation, blood gas changes and results, and the methods to reset the sensors to produce better results appealed to me but it seemed that there was no good feedback in the system. Then it occurred to me that if you were breathing too little the heart would beat faster to overcome the need for O2 and if you were breathing too much the heart would beat faster to overcome the closing down of the blood vesicles due to a lack of CO2. While using my pulse oximeter to find the lowest heart rate while holding exertion constant I also noted that the SpO2 reading becomes a good guide. For me now an SpO2 reading of 95% at my desk is good and 96% while doing moderate exercise will be very near the lowest heart rates.

Since I started doing this:

My AHI is normally less than 2 and breathing stability is good.

I have lost 30 pounds.

My feet are warm

I have enjoyed a summer smelling flowers instead of rushing to the pharmacy for allergy meds. (note: a stuffy nose, I find, is one of the first signs I am breathing too much).

I have moved from needing 15 cm/H2O CPAP pressure to needing 8 cm/H2O.

I am more productive.

Well, you wanted something else to try.

I currently have a pulse oximeter in a little belt pouch on my hip - less than $50 from Amazon (Concord Sapphire). When not helping me learn to breath better it is checking my pulse rate as I climb hills doing a bit of interval training. I find this much more convenient than putting on a chest strap for a heart rate monitor.

In terms of how this helps PAP, I believe that the better trained breathing reflexes prevent breathing effort related arousals and so keep sleep from being fragmented - so - with consistent sleep less sleepiness.

Have a great week!

Todzo

[jcunningham7]

Thanks I will definitely have to give that a try! And I will look for that interview as well!

[Pugsy]

Are you currently using the cpap machine? If so at what pressure and which machine...make and model?

[jcunningham7]

Yes, I'm using a Devilbiss DV54. My pressure is at 11.

[archangle]

Welcome.

Please sign up for an ID and fill in your equipment on your profile.

Are you checking your data and your AHI numbers on your IntelliPAP machine?

[Janknitz]

Everyone above has given you good advice. You want to check your data to make sure you're receiving optimal therapy (few leaks, low AHI, staying within your pressure range), and checking things out with an oximeter just to be sure is a good idea as well.

Have you had a MSLT--Multi-Sleep Latency Test, which (according to Wikipedia) is used "to test for narcolepsy, to distinguish between physical tiredness and true excessive daytime sleepiness, or to assess whether treatments for breathing disorders are working. Its main purpose is to discover how readily a person will fall asleep in a conducive setting, how consistent or variable this is, and the way they fall asleep in terms of REM sleep and other brain patterns. This can be used to identify and differentiate between various sleep problems."?

If that checks out, you need to keep looking elsewhere for what may be going on.

Have you had your thyroid tested? It's very important to get a copy of the actual lab results--don't just accept your doctor's word that it is "normal" because the lab norms are NOT accurate for determining the presence of thyroid issues. If your TSH is between 2 and 5, it will be considered "normal", but lab values over 2.5 indicate a problem. Most lab panels don't test everything that should be tested--you need Free T4, Free T3, and rT3 included along with the usual TSH and total T4 in the standard lab panel. Many people have subclinical hypothyroidism--plenty of symptoms but the blood work does not tell the story. A good endocrinologist (there are very few "good" endocrinologists unfortunately) or naturopath will treat symptoms to see if it helps.

It is also helpful to have your INSULIN levels tested--when I had untreated insulin resistance, I was constantly tired and had little enrgy because my blood sugar levels were going up and down constantly. A Paleo style low carb diet has made a huge different in my energy. Good real whole food nutrition may do wonders.

[DavidCarolina]

Sounds like good advice above. Im really sorry youre strugging with this, especially at such a young age. Id highly recommend getting immersed into this forum. Its a wealth of information and support. You need that. You might run across something that helps. I personally read a lot of older posts and pick up stuff.

Have you considered using 02 into your cpap, or bipap? Do you have a narrow airway?

Keep fighting for answers. Some people have even found relief with tracheotomy (sp?) to bypass their
mouth structure. You will find a way to manage this if you stay persistent. I know everybody on here will
try to help.

[sybert1ger]

You're experience really echoes mine. I've had several sleep studies inclduing an MSLT. According to my doctor and my machine, my apnea is being well controlled. I've seen numerous other doctors over the past 6 years to investigate other potential issues but no silver bullet has come up. I wake up every morning feeling as if I haven't slept and if I'm lucky it doesn't get worse from there.

I've recently found a second sleep specialist in my area so I want to go see him for a second opinion but since I started treatment I've gained 60lbs and every doctor I go to tells me its because of my weight. I need to lose weight before I see him and I'm trying but I had these same symptoms back when I was in shape.

I haven't given up but it is very frustrating. If you find anything that improves your tiredness please share the wealth!

[AHI15]

Hi,

I'm in a similar boat. I have mild/moderate OSA though, which I don't believe began until recently as I had a AHI=0 PSG 16 years ago, but my tiredness began 19 years ago, at about age 26.

I think I'm sleeping a little better on average with CPAP, but it's not making any perceptible difference in my energy levels, fatigue, etc. I also have good mood and don't qualify for a depression diagnosis.

I've used caffeine until becoming totally tolerant to it over a 6 months span.

Next Nuvigil, which worked for a few months despite exacerbating insomnia, then finally pooped out so it only causes insomnia and little daytime help.

Ultimately you have to keep working to find a cause, rather than papering over the EDS symptoms with meds. A priority would probably be to first rule out narcolepsy.

After that, you might consider what I will be interested in doing after my first 6 mos. on CPAP, if it doesn't prove effective to fix EDS: get another PSG to see what sleep architecture looks like under CPAP?

Right now I've just discovered all the stuff about thyroid T3 (which mine is low, but I need to take another test to confirm that it wasn't caused by a ketosis diet). Unfortunately, there is a big schism between conventional medicine and "alternative medicine" about thyroid treatment and "adrenal fatigue."

Re the thyroid, I'm tending to agree with the non-mainstream here, that the conventional thyroid treatment approach is idiotic. Basically, if your TSH is normal or they medicate you to get TSH within range, then they tell you you are well. If you still feel bad, then they tell you you're depressed. But they deny the significance of T3, which after my readings I'm convinced is extremely important.

Then there is "adrenal fatigue." This one I'm more skeptical about, as it seems to be a potential new fad/scam by alt. med. people to sell lots of supplements, with nearly nonexistent science supporting their use. However, it is fully plausible in my mind to have low cortisol levels correlate to low energy. I do have a low mid-morning cortisol level, so that is another thing I need to find out what it means.

It was only because of people in this forum that I requested my doctor to test these things. He wouldn't have done so. Now he doesn't seem to know what to do about them, except refer me to any old endocrinologist.

The lesson, you have to direct your own investigation into what is keeping you from having normal energy. Consider Drs. to be just gatekeepers. They are nearly useless as scientists, unless you are lucky enough to get a real good one. Also spend extensive effort selecting specialist Drs. Don't just go to the one recommended by your Dr.

Good luck.

[Todzo]

Hi,

I'm in a similar boat. I have mild/moderate OSA though, which I don't believe began until recently as I had a AHI=0 PSG 16 years ago, but my tiredness began 19 years ago, at about age 26.

I think I'm sleeping a little better on average with CPAP, but it's not making any perceptible difference in my energy levels, fatigue, etc. I also have good mood and don't qualify for a depression diagnosis.

I've used caffeine until becoming totally tolerant to it over a 6 months span.

Next Nuvigil, which worked for a few months despite exacerbating insomnia, then finally pooped out so it only causes insomnia and little daytime help.

Ultimately you have to keep working to find a cause, rather than papering over the EDS symptoms with meds. A priority would probably be to first rule out narcolepsy.

After that, you might consider what I will be interested in doing after my first 6 mos. on CPAP, if it doesn't prove effective to fix EDS: get another PSG to see what sleep architecture looks like under CPAP?

Right now I've just discovered all the stuff about thyroid T3 (which mine is low, but I need to take another test to confirm that it wasn't caused by a ketosis diet). Unfortunately, there is a big schism between conventional medicine and "alternative medicine" about thyroid treatment and "adrenal fatigue."

Re the thyroid, I'm tending to agree with the non-mainstream here, that the conventional thyroid treatment approach is idiotic. Basically, if your TSH is normal or they medicate you to get TSH within range, then they tell you you are well. If you still feel bad, then they tell you you're depressed. But they deny the significance of T3, which after my readings I'm convinced is extremely important.

Then there is "adrenal fatigue." This one I'm more skeptical about, as it seems to be a potential new fad/scam by alt. med. people to sell lots of supplements, with nearly nonexistent science supporting their use. However, it is fully plausible in my mind to have low cortisol levels correlate to low energy. I do have a low mid-morning cortisol level, so that is another thing I need to find out what it means.

It was only because of people in this forum that I requested my doctor to test these things. He wouldn't have done so. Now he doesn't seem to know what to do about them, except refer me to any old endocrinologist.

The lesson, you have to direct your own investigation into what is keeping you from having normal energy. Consider Drs. to be just gatekeepers. They are nearly useless as scientists, unless you are lucky enough to get a real good one. Also spend extensive effort selecting specialist Drs. Don't just go to the one recommended by your Dr.

Good luck.

I think that Dr. Ted Belfor puts it well when he says that “CPAP is a mechanical solution to a physiological problem”. When I think about it - placing splints on things seems to be all of what modern medicine knows how to do anymore. It is sad.

My approach anymore is moving toward learning how to best treat my body so it can treat me well.

On the list to do today is to clear a space in my home to start working on my rotator cuff. For generations my family has been pretty much couch potatoes – professionals – but couch potatoes. I have been working against that. Upper body strength I have never seen so first I now know, from a previous try, that I must strengthen my rotator cuff so I can build the rest without hurting myself.

Recently my daughter noticed that my chin has come forward notably. So I think my effort to move toward 10,000 steps a day (a bit over 4 miles a day for me) has caused enough of a change in my gene expression to produce an actual physiological change in my body.

As I have done a bit of reading up on thyroid I note the connection with the muscle and CNS systems. So I wonder – if you move a lot more and “strain for gain” might some genes designed to respond to such “apparent need” respond with better thyroid balance?

Food – well I do try to find and consume enough good veggies to make it half of what I eat. I just say no to GMOs – corn chips actually scare me. My training as a cook is well used finding good healthy food prepared from scratch – no preservatives. I worked for years with a dietitian – do read on healthy food constantly – my food habits have indeed changed.

I do not have and will not get TV in my house. I think that TV would be bad for me mentally, emotionally, and spiritually.

I think Obstructive Sleep Apnea is a reaction to our modern lifestyle. We are more connected to our machines than each other. Our food is produced in fields of chemicals – so - what might that do to the soil ecology and microbiome. Spirituality is lost in the roar of media.

I think that if we want to be less sick, we will need to change how we live.

I hope we find our way,

Todzo

[archangle]

I think that Dr. Ted Belfor puts it well when he says that “CPAP is a mechanical solution to a physiological problem”. When I think about it - placing splints on things seems to be all of what modern medicine knows how to do anymore. It is sad.

My approach anymore is moving toward learning how to best treat my body so it can treat me well.

On the list to do today is to clear a space in my home to start working on my rotator cuff. For generations my family has been pretty much couch potatoes – professionals – but couch potatoes. I have been working against that. Upper body strength I have never seen so first I now know, from a previous try, that I must strengthen my rotator cuff so I can build the rest without hurting myself.

Recently my daughter noticed that my chin has come forward notably. So I think my effort to move toward 10,000 steps a day (a bit over 4 miles a day for me) has caused enough of a change in my gene expression to produce an actual physiological change in my body.

As I have done a bit of reading up on thyroid I note the connection with the muscle and CNS systems. So I wonder – if you move a lot more and “strain for gain” might some genes designed to respond to such “apparent need” respond with better thyroid balance?

Food – well I do try to find and consume enough good veggies to make it half of what I eat. I just say no to GMOs – corn chips actually scare me. My training as a cook is well used finding good healthy food prepared from scratch – no preservatives. I worked for years with a dietitian – do read on healthy food constantly – my food habits have indeed changed.

I do not have and will not get TV in my house. I think that TV would be bad for me mentally, emotionally, and spiritually.

I think Obstructive Sleep Apnea is a reaction to our modern lifestyle. We are more connected to our machines than each other. Our food is produced in fields of chemicals – so - what might that do to the soil ecology and microbiome. Spirituality is lost in the roar of media.

I think that if we want to be less sick, we will need to change how we live.

I hope we find our way,

Todzo

Hogwash. This is the kind of new age superstitious nonsense that makes people forgo effective treatment and die or suffer serious side effects unnecessary. It sounds like sweetness and light, but it kills people.

Apnea is like having a broken arm. You need to have the bone set and get a cast. After that, worry about lifestyle changes that led to weak bones and stuff like that.

Yes, the exercise and weight loss is probably a good thing. You've still got to treat your serious, no questions asked, mechanical breathing problem first.

[Todzo]

I think that Dr. Ted Belfor puts it well when he says that “CPAP is a mechanical solution to a physiological problem”. When I think about it - placing splints on things seems to be all of what modern medicine knows how to do anymore. It is sad.

My approach anymore is moving toward learning how to best treat my body so it can treat me well.

On the list to do today is to clear a space in my home to start working on my rotator cuff. For generations my family has been pretty much couch potatoes – professionals – but couch potatoes. I have been working against that. Upper body strength I have never seen so first I now know, from a previous try, that I must strengthen my rotator cuff so I can build the rest without hurting myself.

Recently my daughter noticed that my chin has come forward notably. So I think my effort to move toward 10,000 steps a day (a bit over 4 miles a day for me) has caused enough of a change in my gene expression to produce an actual physiological change in my body.

As I have done a bit of reading up on thyroid I note the connection with the muscle and CNS systems. So I wonder – if you move a lot more and “strain for gain” might some genes designed to respond to such “apparent need” respond with better thyroid balance?

Food – well I do try to find and consume enough good veggies to make it half of what I eat. I just say no to GMOs – corn chips actually scare me. My training as a cook is well used finding good healthy food prepared from scratch – no preservatives. I worked for years with a dietitian – do read on healthy food constantly – my food habits have indeed changed.

I do not have and will not get TV in my house. I think that TV would be bad for me mentally, emotionally, and spiritually.

I think Obstructive Sleep Apnea is a reaction to our modern lifestyle. We are more connected to our machines than each other. Our food is produced in fields of chemicals – so - what might that do to the soil ecology and microbiome. Spirituality is lost in the roar of media.

I think that if we want to be less sick, we will need to change how we live.

I hope we find our way,

Todzo

Hogwash. This is the kind of new age superstitious nonsense that makes people forgo effective treatment and die or suffer serious side effects unnecessary. It sounds like sweetness and light, but it kills people.

Apnea is like having a broken arm. You need to have the bone set and get a cast. After that, worry about lifestyle changes that led to weak bones and stuff like that.

Yes, the exercise and weight loss is probably a good thing. You've still got to treat your serious, no questions asked, mechanical breathing problem first.

Hi archangle!

I do treat with CPAP and have for over nine years. Using all of the above and Pulse Oximeter Guided Breathing to help my breathing reflexes get back in line my need for pressure dropped from 15 cm/H2O to 8 cm/H2O in 300 days.

Have a great week!

Todzo