Forum · Excessive Daytime Sleepiness EDS

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[-] Angie +0 points · about 2 years ago

I was diagnosed with OSA in my mid-fifties, and have used a CPAP since that time. I also have a liver condition (primary biliary cirrhosis) which causes fatigue, and I was prescribed Modafinil (Provigil). It improved my level of alertness to a surprising extent for many years. In 2011, I underwent a liver transplant and after about six months, was allowed to resume taking the provigil. When I went on Medicare, I found the cost of the Modafinil to be prohibitive, and was forced to attempt using other medications to treat the EDS. After experiencing disastrous results with Ritalin and other stimulants, my will to live decreased considerably. It seemed futile to undergo a transplant that left me with no quality of life, and quite frankly told my doctors about my utter despondency. I was eventually connected with a sleep neurologist who wrote a "prior authorization", declaring the medication as essential to my ability to function. Even though I have used a CPAP for years, I am still dependent on Modafinil in order to awaken enough to function. Even with the medication, my thought processes are sluggish at best. My memory is poor, and prioritizing tasks is a huge challenge. I do not have ADHD, but have many of the symptoms. This causes serious misunderstandings with my spouse and friends, and is battering my self-esteem. My dentist recently offered to include me among his test group of patients to use an appliance that will supposedly prevent the snoring and allow me to be free of the CPAP. He has enjoyed 100% success with his test group thus far, so I'm willing to give it a try. The only reason I'm doing this is because of my hope that it will improve my sleep enough to make a positive difference in my waking hours. As it is, I'm considered to be cognitively impaired. I want my mind back! I'm seeking solutions and empathy.

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[-] Sherry +0 points · about 2 years ago

Wow, your body has been through a lot. I am so happy that you have found this site to contribute your experiences. This is a collaboration between patients and physicians to collect data that will make a difference for all who are suffering from Sleep Apnea as well as an outreach to those suffering who are undiagnosed. Everyone's experience shared through the surveys and forums makes a difference in the research which can only benefit all of us! I personally do use a CPAP machine but I also have a dental device like you are speaking of. It will be interesting for you to explore the differences! I hope that you will share your feedback with the community here! As long as we are all continuing to try new things and seek new opportunities we have hope for new interventions and modalities that will make a difference. You may even ask your spouse and friends to join this site in an effort to gain more understanding of how Sleep Apnea could be contributing to your ability to function. It is often so difficult for others to put themselves in your situation when they have no awareness. I wonder if you may reach out to a physician who may take a more holistic approach as there could be some sort of vitamin depletion that is underlying. Most importantly take care of yourself and do whatever it takes to feel good about you. There is such a mind and body connection. When you feel good about you, your body will follow. What is the one thing you can do right now to feel better about yourself? Do that! There is a book that I have never read but the title has become somewhat of a mantra: "What you think about me is none of my business."

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[-] SusanR +0 points · about 2 years ago

Hi Member652017,

Thank you for sharing your experiences--I echo Sherry- you have really been through alot and Sherry provides really good advice!!.

If not done already, it may be helpful to have your doctor carefully review all the medications you are on to make sure that none are contributing to fatigue, sleepiness or difficulty concentrating (these three symptoms are often inter-related but can be due to different problems).

Some people do have "persistent" sleepiness even when treated for sleep apnea. In these instances, its important to make sure you really are sleeping well on CPAP (or other treatments)--that is that you are getting into deep stages of sleep without interuptions due to even subtle breathing problems or other causes of "arousals". It is also important that you are getting enough sleep every night (most adults need between 7 to 8 hours per night, but that can vary-some people need more).

One theory of why some patients have continued sleepiness despite what appears to be adequate sleep apnea treatment relates to the effects on the brain's alerting systems due to years of untreated sleep apnea. Do you know how long you may have had sleep apnea before it was diagnosed and treated? Understanding why some people with sleep apnea have so many problems with sleepiness and others dont is a really important question. It may be a question we as a network want to try to answer as one of our research priorities.

You may want to read the recent post by Dr. Donjalic on memory and sleep, too, to learn more about the brain and sleep!

Hang in there--take good care of yourself, encourage your family and friends to support you, and hope other members here will offer advice that is helpful, too!

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[-] Sherry +0 points · about 2 years ago

Susan, I would like to read Dr. Donjalic's post as well. Can you tell us where to find it?

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[-] Kyle +0 points · about 2 years ago

Dr. Donjalic's post can be found here: https://myapnea.org/blog/does-sleep-influence-memory-and-brain-plasticity

It's a really interesting post!

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[-] Arlene +0 points · about 2 years ago

i can relate completely to your comment; "I want my mind back." i have learned allot over the last several years about the body's need for oxygen; the importance of sleep, etc etc etc Do you monitor your Vit. D levels? When Vit. D gets too low, this creates 24 hour feeling fatigue. There is also a relationship with fat soluable vitamins, A, D, E, K. to sleep. [which, i don't completely understand] Also, since it is blood that carries oxygen - do you also monitor your Ferritin [stored iron] levels? When Ferritin goes below 50, this can impact sleep; brain function; and thyroid function. I have experienced now personally, that my Ferritin was kept at 10 for over 5 years to try to control a bone marrow/blood issue and the result of that, is now severe restless leg.... Ferritin is very important and when too low for your body ~ is a major source of fatigue as well. there is lots of great info on the web when you google 'low ferritin impact on body"... might be worth looking into.

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[-] BrainsNeedSleep +0 points · about 2 years ago

Angie, you sure are going through one version of absolute misery. And you are not the only one with cognitive impairment -- WHO considers you impaired, and did you have testing? I really would like to know.

I have had sleep disorders including apnea probably all my life, and went undiagnosed for 12 years of specifically complaining of exhaustion, poor sleep, and eventually "I can't think my way out of a paper bag." If I hear one more MD say "well, women YOUR age..." There is some truth to that, but for many beleaguered docs in the age of HMOs and other changes to our "healthcare" system, perhaps it was an easy way out, and no further inquiries were made. Eventually, I didn't habe the brain power to push it, either.

Sleep apnea causes frontal lobe damage in many, and the frontal lobes of our brains are where the "executive functions" are such as you mention, like sequencing activities, planning, follow-through, etc. I had symptoms of early-stage dementia, and watched my parents go that route without any treatment for their sleep disorders. The CPAP brought me maybe 75% back to my "normal" brain (debatable with a life-long condition). You know what brought me back to how I felt 15-20 years ago? And I am a skeptic and have a doctorate, for what that's worth...I heard Dr David Perlmutter on PBS talking about his work and book "Grain Brain." Long story short, I tried his dietary recommendations (and only a few of the supplements -- I eat poorly) for two weeks. After one week, I had enough energy to get through the day...for four days in a row...by the end of the second week, I was firing on all cognitive cylinders. ??? Diet made this much difference? No way! So I went off and ate my usual. By the end of the first 6-8 days, I was getting exhausted again. By the end of two, I was clearly getting "stupid" again. I went back on the plan and stayed there...fell off after surgery, but am back on as of this week.

The PAP treatment I think is crucial, but for some, if not many, of us there are other factors contributing to the cognitive malfunctions. SusanR made some fabulous points and she should know, and Arlene also is knowledgeable, but in addition you might want to go to the library and read Perlmutter's (well-referenced) work and see what you think.

It is terrifying to lose brain function, it is incredibly frustrating for docs to say "but you look fine," and for neurologists to test "what direction would you be going if..." when it's the five errands that must be done but in what order when one thing depends on another, and it all gets utterly overwhelming -- when we KNOW we should be able to do this effortlessly! And never mind the inability to make decisions....

Good luck! You have company in that experience.

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