Yesterday, I fell asleep while out of town. I slept a couple of hours when my Service Dog caught my wife's attention. She had her paws up against my chest, licking my face. That is her sign that something is wrong with me. My wife told me she started trying to wake me up and tried for about 30 minutes.

I knew she was trying to wake me up. I heard her words but did not respond. I could not figure out how to wake up. A friend asked me to grip his hand and I did. They knew I could hear them. I just couldn't figure it out. Trying to look at my wife -- it seemed she was -- it was like looking through an opaque window. I could not see her clearly. I thought maybe I had tears in my eyes but she said no. I could not figure out how to wake up.

They put the oxygen cannula in my nose, but I was breathing so shallow I could not activate the pressure demand at 2 LPM.
When she turned it to continuous flow I finally came around.
I walked around some and got to feeling better.

I started to drive home, but got sleepy after a few miles so I pulled over and let my wife drive. That is also unusual.

What kind of disease causes a person to .... not wake up? My Pulmonologist is one of the best in the world. He gave me an article on "PHOX2B Germline and Somatic Mutations in Late-Onset Central Hypoventilation Syndrome" But I had CCHS at birth, it appears to have "went away" or "went dormant", but came back after a severe car wreck in 2001.

Could THIS stop me from waking up? IT SHOULD NOT TAKE 30 MINUTES TO WAKE UP WITH 2 ADULTS TRYING TO GET YOU TO WAKE UP. ANY IDEAS WELCOMED.....thank you...Dave
Central Hypoventilation Syndrome

No replies. Maybe I worded it wrong.

All I can guess is a lack of oxygen. When I get over the Root Canal the tests will start.

They checked the PFO implant in my heart and it is fine. Another reason for my oxygen levels to drop.

We have a lot of smart people on here and we have a lot of people who have had strange things happen to them.

A very smart lady pushed me towards CCHS and ... on paper .... it is a pretty good fit. About 80-90% of the criteria fits me.

Life certainly can be interesting.....

Have you ever done a sleep study?
I think your wording is fine - I am just at a loss at why it would be so difficult to wake up. I think the next step would be a sleep study where they can monitor you carefully and see how you sleep and wake.

Yes, I have done two Sleep Studies.

The first found I have lots of problems. LOTS. Then I went to the best Respiratory Hospital in the USA --- for ten straight years. They did a sleep study that verified I am a mess.

This most recent item is reinforcing I have life threatening respiratory problems.

If we do not solve them I will die. That is NOT being melodramatic, it is a simple fact in life....and death.

I will try to be careful, but I am home alone tonight. I will probably go watch TV in our bedroom, where the oxygen and Ventilator are ready. My Service Dog has saved me twice, I don't want to push it. She will curl up next to me and every time I look at her she is intently watching my face. Wonder why I love that little girl so much..... she is watching me as I type. When my wife gets home, she will take a long nap. Maybe both of us

My sleep study at the National Jewish Hospital was so strange the head of that department in the hospital called my doctor, asking for us to arrange an appointment with him to discuss it.
But our schedules did not allow it. yet.

I WAS REALLY HOPING SOME ONE........ANYONE .... MIGHT REMEMBER THIS HAPPENING TO UNCLE BILL OR THEIR BEST FRIEND IN COLLEGE...WHATEVER. Maybe someone will see it and it will "ring a bell". Thanks for taking a look at it, I really appreciate it. I was afraid to post that for about ten days. It sounds like I am drunk or something. BTW, I don't not drink alcoholic beverages and never have. I have NEVER smoked Pot,
taken Cocaine, or any illegal drug. Never smoked one cigarette.
But I have lung damage from second hand smoke. Go figure.

to find answers to rare things in medicine.

But I have been thinking about you.

I don't think your taking 3 Qualaquin for leg cramps is a safe thing to do.
(I personally have never seen that high a dose-- two being typical in the old days)

Here is a website that lists the potential toxic results from quinine, and your
use is high dose.

http://www.oshmanlaw.com/pharmaceuti...on/quinine.asp

If you suffer periods of unconsciousness, this may be the result of a
cardiac arrhythmia, which quinine can induce.
There are alternative solutions to leg cramps beside quinine. I hope you discuss this with your doctor(s).

This website lists drug accidents reported to MedWatch. Here is the quinine one:
Notice many reactions at the low dose of ONE capsule!
http://patientsville.com/medication/...de_effects.htm

from this site:
http://www.pharmgkb.org/do/serve?obj...DrugProperties

mrsd, you never cease to amaze me. You help so many people, I wonder if you ever sleep. Let me see if I can answer some of these things about quinine. First, and foremost, I listened to you and my PCP. I am down to 2 on one day and 1 the next. I take them just prior to sleep.


Quinine poses serious and potentially deadly risks. These side effects clearly outweigh the potential benefits of using this drug for the treatment or prevention of nocturnal leg cramps. Quinine adverse reactions include:

* Cardiac arrhythmias. This potentially serious condition causes irregularities in the sequence of heartbeats. Quinine cardiac arrhythmias can produce anxiety and, more seriously, impair the heart’s ability to properly pump blood. Drug treatments, artificial pacemakers, and other treatments may be necessary to address this condition. (MY HEART IS PERFECT AT THIS TIME. I WAS IN THE HOSPITAL LAST THURSDAY FOR A BATTERY OF TESTS AFTER IT TOOK A HALF HOUR TO WAKE ME.)

* Thrombocythemia. This is a quinine side effect that causes the body to produce excess platelets, which leads to abnormal blood clotting or bleeding. This condition doesn’t often produce symptoms, though it can cause the formation of blood clots. Symptoms of blood clots can include tingling the extremities, cold fingertips, headaches, dizziness, and weakness. Nosebleeds, bruising easily, digestive tract bleeding, and gum oozing are also possible symptoms. Drug treatment is often required for this serious condition. I DON'T BLEED ANYMORE. I AM ON PLAVIX AND STILL DON'T BLEED. IF I CUT MYSELF I HAVE TO BE TWICE AS DILIGENT IN CLEANING THE CUT AND FOLLOWING UP BECAUSE I DON'T SEEM TO BLEED. MAY THIS IS THE REASON??

* Cinchonism. This condition is characterized by headaches, nausea, ringing of the ears, visual impairment, stomach pain, rashes, diarrhea, vertigo, and vomiting. RINGING IN THE EARS IS FROM VIETNAM AND A FEW THOUSAND HOURS FLYING KC-135 FOR THE AIR FORCE. I DON'T HAVE THE OTHER PROBLEMS THAT I CAN REMEMBER.

* Hypersensitivity reactions. Symptoms of this quinine side effect include hives, skin flushing, fever, facial swelling, and more. I HAVE FACIAL SWELLING (ROUNDING) FROM PREDNISONE.

* Drug interactions. When quinine is taken concurrently with mefloquine, it can increase the risk of seizures, heart arrhythmias, and other serious reactions. Other concurrent drug use may also pose serious risks. MEFLOQUINE? I DON'T TAKE IT THAT I KNOW OF.

* Contraindications. Patients with any of these condition may be at an increased risk of quinine side effects: tinnitus (or ringing of the ears), certain visual conditions, and more.

* Quinine overdose. Another serious risk posed by quinine use is the potential to receive a toxic dose. The difference between correct dose and overdose is very small with quinine. If a patient suffers a quinine overdose it can cause serious damage and may be lethal. Symptoms can include gastrointestinal side effects, cardiotoxicity, visual disturbances, central nervous system disturbances, and more. CNS PROBLEMS? I HAVE THEM.

Since 1969, the FDA has received 665 reports of serious adverse reactions caused by quinine. The agency has received reports of almost 100 deaths caused by quinine. In light of these grave risks, the FDA urges patients not to use quinine for the treatment or prevention of leg cramps. WHAT IS THE OTHER OPTION? MIRAPEX OR SOMETHING LIKE THAT?

mrsd, I would love to quit all the meds. My cramps were so severe I would leap out of bed at 2am or 3am, standing on the ball of my foot, trying to get the cramp to release. It would not.
It never has. I have to BOUNCE 215 POUNDS UP AND DOWN ON THE BALL OF MY FOOT TO FORCE THE CRAMP OUT. I seriously fear tearing the muscle off the bone if I keep that up.

I understand I am a mess. I have never listed all my problems on any forum I can remember. You have seen the list of meds, so you have a better idea of my problems.

I read your posts, download a lot of them to read again later.

After speaking to my Pulmonologist, Cardiologist, Urologist, Peridontist, Gastrointestinalologist, Pain Med doctor and Neurologist about not waking up for 30 minutes.

No one is sure.

Best guess is about what we all thought. My oxygen levels were too low for my brain to work properly. Period. Next step would eventually be death. So I have to devise a plan B.

I NEED TO FIND A VENTILATOR I CAN TAKE EVERYWHERE. I AM NOW FALLING ASLEEP IN OUR CAR. My Toyota Avalon has a built in inverter for running my Ventilator. I am currently getting the SeQual Eclipse for oxygen.

There is some hope I might be "ok" if I fall asleep while hooked to continuous oxygen, titrated to 2LPM. At least I would have a chance.

I have had episodes where I am aware that I am awake but I still feel like I am asleep. I feel like I am paralyzed. It is a very scary feeling and I often have episodes where I think someone is in the house, I think I hear the door bell ringing, the phone is ringing, etc. but I just can not get up. However, it never lasts as long as you have described. My doctor has stated that it is called 'Sleep Paralysis'. It is a temporary paralysis of the body short after going to sleep or right after waking. I would try to explain it but I would get it all confused. Here is more info.

Well, I tried to post a link, but since my post count is less than 10, it won't let me. So, google Sleep Paralysis and you should get a lot of info. The link I tried to provide was from Wikipedia.

Good luck in your search!

Thank you. I was told about "Sleep Paralysis" before and looked it up, but my situation wasn't like that.

When I was asked to squeeze his hand, I did. My wife cradled my head to make sure my airways were clear and she says I moved (a little) to snuggle against her.

You may be right. I have an appointment with my Pulmonologist and Neurologist early next week.

Things aren't getting better on this sleep thing. In roughly the last 20 days my Service/Medic Alert Dog has saved me 3 times. My Pulmonary doctor sent me the paperwork for Ambry Genetics. They also do the DNA/Gene test for CCHS.

A very smart lady who frequents our forum PM'd and has emailed me more info about CCHS and that really fits me.

I found the SPO 7500 Pulse ox machine, which is usually $488 to about $600 on clearance for $199 so I bought it. NOW I can record the data and download it. Plus it has alarms that will sound off if my oxygen levels drop. Now if my hose were to break, the alarm would sound and I would get help or maybe it would wake me up. If I can remember how to wake up. My Apria rig did not allow me to use the software from Nonin. I called Apria today and told them to come get their stuff.

When something serious happens to me or a family member, or even a friend, I like to understand what went wrong. This post is working when nice people like yourself take the time to post your ideas. I am going to look at Sleep Paralysis again. Maybe I read the wrong part of the article. Take care, Dave

Well Dave, I hope you get some quick answers about what is going on. I will pray for you. Please keep us updated!

Blessings my friend,

Addy