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susan downing

Posts: 1
Joined: Aug 20, 2011


Posted by @susandowning, Aug 20, 2011

How do i live a life of freedom with this disease ? They say I cannot drive, yet there is no public transportation where I live so friends and husband must take me everywhere.



Posts: 1
Joined: Nov 14, 2011
Posted by @lpnlinda, Nov 14, 2011

Sounds like you are pretty frustrated. I know once I was put on medication that I was able to do many things and my life changed immensely.

Grama Teri

Posts: 9
Joined: Dec 30, 2011
Posted by @gramateri, Jan 10, 2012

Are you seeing a sleep specialist? Have you had a sleep study (PSG) and MSLT? There are many wonderful medications out there for narcolepsy, and there is no reason you should not be able to drive or lead a useful and productive life because of narcolepsy. Look for an A.W.A.K.E. support group in your area or check out to find answers. Find a sleep specialist or if that’s who you’re seeing, get a different one! You can feel well again, believe me. God bless.

Sarah E

Posts: 5
Joined: Nov 21, 2012
Posted by @sarahe, Nov 21, 2012

I was (mistakenly) diagnosed 20 years ago with narcolepsy, and spent 15 years taking very high doses of amphetamines & methamphetamines.

Four years ago, a little girl who had spent the night with my daughter told her that I was going to die. She said that her dad sounded like I did when I slept, and he had to sleep with a machine so he wouldn’t die. When my daughter told me this, I immediately knew she was describing sleep apnea & I called the sleep doc for another test.

Bingo, I have obstructive sleep apnea and now have a cpap. Try going cold turkey off of amphetamines, NOT a picnic!!!

My husband had been diagnosed with obstructive sleep apnea several years before, and was told to stop smoking, lose 30 lbs, and get a cpap. He said the doc was nuts and didn’t even try to do anything the doc had recommended.

In 2006, he had a massive heart attack, he had less than 2% odds of surviving, was put in a coma for 7 weeks, had an LVAD implanted, and had to wait 7 months to get on the heart transplant list, because they will NOT put anyone on that list who smokes or drinks alcohol. I spent most of that year living at The Cleveland Clinic.

His diagnosis? Severe heart failure, which could have been avoided by simply sleeping with a machine & following the doc’s orders.

I just want people to understand that sleep apnea is NOT just loud snoring and a suggestion to remedy certain behaviors is NOT just idle talk!

You can & will die from sleep apnea if you don’t treat it!

I am currently sleeping with my much hated cpap machine, and am looking into the Pillar Method. My husband? He got a new heart, lived 4 1/2 years, then died from lung cancer.


Posts: 46
Joined: Sep 15, 2012
Posted by @anon56837187, Nov 21, 2012

I am glad that you finally got the right diagnosis and is being treated properly. You might be able to help me with my symptom of waking up with feeling heave pressure in my chest every morning. Could this be sleep apnea for my GERD medication does not help at all. Thanks! Hope you feel well continuously.

Sarah E

Posts: 5
Joined: Nov 21, 2012
Posted by @sarahe, Dec 8, 2012

I’m not sure about having heavy pressure on your chest when you wake up as being a symptom of apnea. On the few nights that I can’t use my cpap, I have a sore throat and soft palate the next morning. I also have GERD. You can go to the website and read posts by people with apnea, and you can ask questions there too! Somebody there may have symptoms like yours, and it is a great site for info! Good luck to you, and please let me know if you find the info you need!

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