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@sleepstate

I totally agree! I have Type one Narcolepsy, opiates are the only medication that keeps my brain awake and prevents cataplexy without the severe agitation stimulants cause. I've taken them for 29 years and not out crawling the streets looking for drugs. With all this addiction paranoia, Drs are afraid to prescribe them. My Dr does but the dosage is half what I need to have any kind of real life. My good friend has multiple chronic pain conditions, she has no life left. All there is is pain day and night because due to office policies, her meds have been reduced 4 times in 18 months. People with chronic conditions that require controlled medications are the ones left suffering, paying the price for addiction, going undermedicated and without medication more often than not. It's terrible what is going on. We can't go on vacations or trips where we'd be gone when our meds run out or we have to just go without them and instead of having good times with family spend it suffering. It's not bad enough having a condition that takes so much from your life, from your family's, because of all the restrictions I've missed out on most trips I had the opportunity to go on. It's just not worth going when I'll be too tired to do anything but sleep and ruin everyone else's time. My medication limits my life further. If my Dr goes on vacation when my meds are due, I go without until he gets back. I missed a trip I have always wanted to take because my Dr left on vacation 2 days before my medication was due and 3 days before I would have to leave for a 2-week trip. There was no sense in going. I get there's a problem with addiction but setting up a system where patients who depend on controlled medications for quality of life and will the rest of their lives are increasingly being denied adequate medication or having to go without it altogether is cruel. I want to move closer to my kids, I'm afraid I won't find a Dr willing to prescribe my meds. I'm close to an invalid without them. I can't carry on conversations, can't make decisions, can't process what people say I'm too busy fighting the extreme fatigue. My body feels like I'm walking through wet cement doing anything. I can't live like that, I wouldn't be able to take care of myself alone. It's not right what they're putting patients through, it's downright cruel!

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Replies to "I totally agree! I have Type one Narcolepsy, opiates are the only medication that keeps my..."

Dear Sleepstate,
Wow!
Good luck to you. Everybody is different. To hear of your problems is comforting in a crazy way that there are other people in pain also.

Those white jackets don’t listen to us

An example:
Two years ago after major surgery, I was in the ICU waking up. They had intubated me, and locked down my left wrist and right wrist to the bed, in order to prevent me from taking out any tubes or IVs or intubation tubes.

I couldn’t breathe! I’m on my

I have severe, severe sleep apnea. I have been using a CPAP machine religiously for 30 years, before it was trendy.

Obviously, I could not talk. I signal to the nurse to give me a pad of paper and a ball point to write on.
I wrote “I can’t breathe!”

She replied that the tube was providing 21% oxygen. My second note said I was not getting any oxygen or any air going to my lungs because my esophagus had collapsed because of my severe sleep apnea.

There was a guy in the hall that I signal to, with my right index finger to come towards me.
I pointed towards my CPAP machine which was over there on the shelf.

After writing more notes, they finally released my arms and I pulled out the intubation hose and replaced it with my CPAP pillows.

I really thought I was going to die, because I could not breathe. the nurses, and everyone were very smart, however, they did not read my charts, which showed that I had severe sleep apnea.

I told the nurse “21% oxygen? How about close to zero? Because none of it was getting through my windpipe.”

Dear “white lab coats” out there, please listen to your patients. Sometimes, sometimes, we know more about ourselves than you know about ourselves.
Please listen to us.

Please listen to us.