It took 30 minutes to wake me up. Why?

This is a medical condition and it concerns my problems with breathing but if my question is inappropriate, I will apologize up front.

In the last 4 months I have fell asleep sitting up several times. It has taken my wife from 30-40 minutes to wake me. Even with a Professional Lifeguard (RN) they could not wake me up for approximately 30 minutes. I was breathing so shallow I did not activate the Pressure Demand Regulator on my M-9 bottle. They had to turn it to continuous before I finally woke up.

I am not looking for medical advice, just brainstorming as to what it might be. I am hoping one of you has seen something like this. If this is an appropriate question, I can give additional info. My Pulmonologist did not think it was too serious (after a long, long session in the MRI where they determined I don't have any lesions in my brain). Thank you for your time.

BTW, I breathe ok on the Respironics BiPAP Auto SV unit. At least I wake up each day, so that means it shoved air in me overnight.

OMG!!! Are you sure you weren't dead?

according to Stanford Medical:

Significant problems waking up in the morning combined with a strong preference for a very late bedtime are symptoms of a specific type of insomnia called delayed sleep phase insomnia, which occurs when a person’s biological clock does not match the time he or she tries to sleep. Many people with this problem call themselves “late night owls”. Although the problem can be experienced in all age groups, it is most pronounced among teens and young adults. About 7% of teens and young adults have great difficulty getting out of bed in the morning and cannot fall asleep until very late.

http://insomnia.stanford.edu/clinservices/wakeup.html

But you don't mention you stay up late, or how long you actually do sleep, sounds like to me this happens when you simply fall off in a nap. If you are needing a nap or doze off, well you still are not getting the sleep you need at night. If you are still on all those exotic medications, I would towards them as the cause.

It also sounds like you are in deep sleep (Stage 3 / 4) when this happens, most difficult place to wake a person.

Do you have a hearing problem?
Have they tried pinching you to wake you?

Obviously it is out of the realm of your doctor's expertise, I'd ask them to refer you to Stanford Medical Sleep Center for an evaluation, maybe they could come up with some ideas for more easily waking you, what would happen if there were a fire and you needed to get out in a hurry?

My guess is you would be toast

Stanford is not all that far from Sacramento.

Man I don't have a clue. What Snoredog says makes some sense but you need to be careful. Breathing that shallow has got to be causing your blood oxygen level to take a nose dive. Please be careful and try not to let this happen to often.

Jerry

I had a lot of info I typed out, then transferred to a Word file for later posting.

Sleep? Encore Pro says I average over 8 hours a night for the last month or so.
Drugs -- I have had these "can't wake me up" spells while on HEAVY morphine usage and since I quit morphine. So drugs don't seem to be the culprit. In fact,
if I take a 5mg Valium right now I may not wake up until 9am if left alone. (Valium was suggested as part of the detox from morphine, but I did not
need it.)
PSG? I can talk to my doctor about it. They did a PSG at the National Jewish Hospital last summer, but things do change inside us.

I usually get to bed between ten and eleven pm, sleep until 6:30am to 8am. Being medically retired, I set my own schedule, depending on how I feel.
I sleep with the SV unit on, so I get enough air. I wore the SPO 7500 pulse-ox overnight a couple of times and found I was 93-98% most of the time. With this
current case of Bronchitis, I sometimes get to coughing and will leave the bedroom so my wife can get to sleep. Last night I was up until 3am, then went to
bed and got up at 6am with no problem. IT IS THE NAPS THAT I DON'T WAKE UP FROM. CCHS is diagnosed two ways. By exclusion and by a DNA test. I was born with what sounds like CCHS. We did the DNA test and mine is ok. But they know close to 10% of the people who have CCHS do not have the DNA problem. Short version, when you go to bed at night your brain/CNS tells your heart to beat and for you to breathe. My brain does not recognize I don't have any oxygen in me. At NJC they did a test where the ran my pulse-ox down to 18 and I did not know it. I knew my chest was getting warm, but I was still talking to them and if it had been a normal person, at around 88 or so their brain should be screaming to breathe deeper, faster, etc. That 18 adjusts out to a 15 at sea level. I am sure they told me the name of the test, but I have forgotten it. Part of me is curious as to what would happen if they ran my pulse-ox to zero. Would my brain finally register that I don't have any air in me???

I do have a hearing problem, but when someone is a couple of feet from my ear yelling at me, I can hear them easily. Also, they have shook me, asked me to squeeze their hands (and I did) and I knew what they wanted .... I just couldn't remember how to wake up. I was confused as to what they wanted.
When I wake up in the morning, after a night on the SV, I wake up quite easily and usually am out of bed within a couple of minutes.

Has anyone pinched me? Not that I know of. The Pulmonologist suggested a cold wash cloth. That might do it.

It happens in the 1pm range. I prefer not to eat lunch, so it isn't that I have eaten a big meal and I am sleeping it off. When I was eating chocolate my wife blamed it on a "candy high"...then the drop. BUT I am not eating any sweets right now, nor have I for almost a month. I am eating nothing but fruit.

I never thought about a fire happening. If I am asleep on the SV, I would be fine. If I were asleep in my Lazy Boy in the Family Room, I might be toast.
However, when my Medic Alert Dog sees me asleep, she hits me with all 40 pounds in my chest. Both front paws and "punches" my face with her nose. She also tries licking me. She has woke me up 4 or 5 times like that. My wife would not leave me alone for a few months, until she realized our dog can seem to tell when I am in distress. After one of those "wake ups" she will sit right in front of me, staring at me very intently .... like when she wants her dinner or wants someone to throw her ball for her. When I am here alone she is rarely over 3 feet from me. Since I got so sick in our bathroom one day, she even follows me into the bathroom if I don't lock the door. She wasn't exactly trained to do this .... she just seems to know.

So, in summary, in Sept 2006 I quit breathing 3 times during a Bronchoscopy. Each time requiring the Pulmonologist to gently pull the camera back out of my lungs, up through my Vocal Cords and out my nose. Then put an oxygen mask on me, THEN yell in my ear until I started breathing again. After 3 straight times he said he had enough. He found I had "smokers lungs" from 2nd hand smoke exposure and something else .... I can't remember right now. At NJC
they ran my pulse-ox down to 18. During my PSGs my Oxygen levels were in the 70s at one time or another (I don't understand some of the wording.) and
if I remember correctly, NJC said I have about 20% of my air trapped in my lungs from either small airway damage or disease (so take QVAR and I did).
I have had Chronic Bronchitis for many years. My mom told me I was born with Bronchitis. My lungs produce sputum 24/7 and have for many years. Yuk.
I was diagnosed and treated for Vocal Cord Dysfunction, asthma and allergies in Sacramento. NJC tested me and said they don't think I have allergies.

When I am sleeping in a chair I tend to breathe VERY shallow. Shallow enough it did not activate the Pressure Demand Regulator on the M-9 bottles. If I slept for 30 or 40 minutes with very shallow breathing like that........ it makes me wonder how much oxygen my brain is getting. Oh, and I have no known Lesions in my brain per extensive MRI work. If a person walks into your house, sits down, visits with you, when you leave the room for a few minutes and come back, you find they have fallen into a "deep sleep" where you cannot wake them by yelling their name or shaking them violently ---- What would you think????????? What would you do????????

Again, I am brainstorming. I am NOT seeking medical help. I was at least an RT might see this and tell me what kind of test runs a person's Pulse-Ox down to 18. (15 at sea level). Snoredog had some good advice and Stanford might be the place I need to go. Thanks for your help, I really appreciate it.

That's scary stuff there, with the low oxygen and shallow breathing, and forgetting to breathe. I think I'd want some answers. My curiosity would end long before finding out what happens when my oxygen gets to 0% though!! My situtation is not even in the same league as yours in complexity.

As far as deep sleep goes, I used to get like that fairly often when in my recliner, and after a long reprieve, had a spell of "it" last weekend. I felt the familiar foreboding, was minutes from home, left abruptly, ran in the house and collapsed in a chair. That was at 3:30 in the afternoon. My daughter said she tried to wake me up a few times (I responded she said), but it was 1am before I stumbled from the chair to my bed and machine and slept till 9am. It felt like I was coming off from being anesthesized. Unusal in that I haven't had a good night's sleep in many months now.

In your situation, are you careful to wear your machine even when napping? Maybe you could understand those spells if you saw some data and oxygen monitoring during those times. Best wishes at sorting it all out.

Kathy

I have NO IDEA! But that is ONE FINE DOG you have there!!! Is she prescribed to you for your sleeping disorder? I've never heard of that. What a great idea!!!!

Cheers,
Barbara

That it happens when napping might be a clue. I used to take power naps lasting about 10-15 minutes. I'd sit as you do in a chair mostly upright, and would be out in under a minute. I'd wake with a terrible electric shock running through my body that would practically make me stand up. Does that ring a bell?

Another thing I've experienced is sleep paralysis where I could hear but not respond or make my limbs move. After a few minutes I could feel the blood start pulsing in my arms & legs.

Those are the only things I can think would relate. Logically, if you o2 drops so low as indicated, that should cause the body to restrict blood to extremities to save the internal organs. That could make your arms & legs seem paralyzed but allow you to hear.

Our kids were in town around August 8th for my birthday. I was talking with them when I heard my words slurring. I now recognize some of the precursors to my "falling asleep". I excused myself, went to bed with my SV and oxygen on and slept for a couple of hours before my wife woke me. I had never heard my speech slur like that. Sounds like I am drunk. I was not ready to get up, but I did. Some of the kids live a couple hours away, so I went back in for awhile.

Do I take naps with my SV? Yes. Oxygen too.

My dog? She is registered with our county as an Assistance Dog/Service Dog/Medic Alert Dog/Therapy Dog and my baby puppy. She is 4. My wife teaches the classes and she has taught her more than some of our kids. When my wife's knee was replaced about 18 months ago, she trained my Service Dog to get the clothes out of the dryer, put them in the basket, then drag the basket to back of the house for her. I suspect she figured it was easier to train Tolly (her name) than to train me. When she was around 2 our youngest grandson jumped in the pool and it was a little deeper than he thought it was. He came to surface sort of crying and scared. She launched off the wooden deck, cleared all the concrete and landed within a few feet of him. She has webbed feet. She circled him until my wife told him to grab the hair on her shoulder and she proceeded to tow him to the steps. NOT the side of the pool. She was a family member for sure after that. She is a Portuguese Water Dog. Her sire was Ace, top PWD on the North American Continent when she was born. They are an incredible breed. There are other stories where she has amazed us with her intuition and intellect. Her kennel is next to my side of the bed at night. With a smoke detector/CO2 detector on top of it. Sorry, easy to get carried away with her. Before I forget, I have a prescription stating she is necessary for my continued good health or something like that. Having saved me all these times in the last few months, I typed a summary about it and had it entered into my medical records. I will carry the prescription with me if we travel with her (Hawaii some day .... I have been there dozens of time while flying in the Air Force, but my wife has never been, so one day we will drive over to Travis AFB and see about getting a "hop" to Hawaii. USAF complies with ADA they said.)

I have Restless Legs Syndrome and Fibromyalgia (per my Neurologist), then there is my lower back. Beyond mortal man's ability to heal with surgery, that is why I got on the morphine to begin with. I have carpal tunnel caused by a disc or something in my upper back, Vocal Cord Dysfunction, Chronic Bronchitis,
CCHS (diagnosed by exclusion and common sense), asthma, smokers lungs from 2nd hand smoke, about 20% of the gases are trapped in my lungs due to either damage or disease to my small airways, drank drano at 3 years old, so my Esophagus is not in great shape, 4 skin cancers cut out (due to serving several hundred days in Sunny South East Asia), just had the roof of my mouth removed so they could sew it to my gums (drano caused it), and what else? Urinary tract problems made worse by morphine.... oh .... sitting down? Sometimes ya gotta just laugh ... the Air Force gave me what the Flight Surgeon said was a new miracle drug for poison Ivy in the 70s .... it is a cousin to Prednisone .... uh ...Benasone 5% I think the medical records said. I used it several times before I realized it had taken the skin pigmentation from my hands. I have to wear SPF 45 in the winter too. After the Occluder was put in my heart June 2007 it seems to be in good shape for now.

No electrical shocks when I sleep. Not yet anyway. Sleep Paralysis is not it either. I looked that up before. While i was "asleep" that time, I heard the guy tell me to squeeze his hand, so I did. I KNEW they wanted me to wake up, I just couldn't remember how to do it. So I don't think I was paralyzed.

Still brainstorming. Some good ideas so far. I am hoping to get an idea here, then approach my Pulmonologist with it. Never mind the complicates stuff,
I would still like to know what would cause me to hit 30cmH2o for approximately 30 straight minutes. Too weird. I have spoken with a couple of RTs around here and they have never had a patient do that.

Wow - I hope you manage to get some helpful advice on here.

Tolly sounds like an awesome dog - would love to see a couple of photos of Tolly if you ever get chance.

There is so much that we don't know about animals - I think I read a few months ago about a couple of dogs with particularly great sense of smell, who were actually able to detect Cancer... does this ring any bells with anybody ?

Mike

I think that part of the reason that medical professionals have been quiet on the subject is because they have not seen anything like yourself. As you look through posts, at first you sound like a hypocondriac. But then as you keep reading you realize that you really have serious health problems. I honestly have never seen anything like your case. I would say that I would not use a oxygen conserving device and would always be on continuous oxygen. I am also wondering if you have ever been tested for narcolepsy or cataplexy. Most people know what narcolepsy is. But cataplexy is uncontrolled muscle weakness or feeling aware of your surroundings, but not being able to comprehend what to do. Kind of like sleep paralysis, but not really. When you see someone in the movies that has narcolepsy they really have narcolepsy and cataplexy. THe narcolepsy is when they fall asleep and the cataplexy is when their head hits the table, or they hit the ground. I cannot offer any more that to suggest that you research cataplexy and see if that sounds like you. I am so sorry that I do not have anymore to offer. I can say that I have had cancer twice in the last few years and you have to keep looking for people that will help you. Just because one Doctor says one thing you have to search until you get an answer that you can live with.

I second KansasRT. The slurring sounds like low oxygen in the brain (like being drunk). I don't recall if you have an oxymeter (not the right word) but you can get an inexpensive one that gives a snapshot score on-line. That's what my dad did and it's really helped.

My dad has the lung disease COPD and has an oxygen bottle with a long hose in the house. When he feels a little tired he checks his o2 and if below 90 wears the nose thing for a time. He sleeps with it often but not every night. The long hose lets him wander around the house without a problem.

You have a CO2 detector in your bedroom, but have you checked the whole house for carbon monoxide? I know it happened at the doctor's office also, but it's another thing to eliminate.

The direct link seems to be the lung disease. According to my dad the only thing they can do for him is give him oxygen. Of course he's 87 and I'd guess you are in your 60's (same team, same war). Reminds me, did you come in contact with Agent Orange? That may be one they don't see every day and one of the symptoms is the neurological cessation of breathing (central apnea?).

My brain is pretty well stormed for now. If I come across anything else I'll let you know. Also, if you get it nailed down, please let us know.

I think that part of the reason that medical professionals have been quiet on the subject is because they have not seen anything like yourself. I HAVE BEEN TOLD THAT BY MORE THAN ONE DOCTOR. BUT YOU WOULD THINK NJC WOULD HAVE SEEN SOME OF THIS.

As you look through posts, at first you sound like a hypocondriac. I AGREE. BELIEVE ME, AFTER PASSING EACH OXYGEN TEST, PFT, PST, METHCHLOMINE CHALLENGE TEST... MULTIPLE TIMES, HAVING MY PULSE OX CHECKED AT EACH VISIT, WITH IT IN THE LOW 90S... I THOUGHT IT WAS ALL IN MY MIND. THEN I DECIDED TO FIGHT BACK. I BOUGHT THE SPO 5500 AND MY PULMONOLOGIST TOLD ME TO LOG MY PULSE OX SCORES. I DID FOR WEEKS. HE HAD FAITH IN ME. AFTER MY VISIT TO NJC, BEING TESTED WEEK AFTER WEEK, THEY FOUND THE HOLE/TEAR IN MY HEART AND FIXED IT. SO I PROVED TO MYSELF IT IS NOT IN MY HEAD.

CCHS - WE SENT MY DNA IN AND IT CAME BACK NEGATIVE. I DID NOT HAVE THE DNA MARKER, BUT BASED ON WHAT MY MOM TOLD ME AND THE DIAGNOSIS BY EXCLUSION, ALL THAT MAKES SENSE IS CCHS. I WISH IT WEREN'T. MY BROCHOSCOPY SEEMS TO BACK IT UP. MY PULSE OX DOWN TO 18 WITHOUT ME KNOWING IT SEEMS TO BACK IT UP. MY BRAIN DOES NOT KNOW WHEN I AM OUT OF OXYGEN. SO IF I FALL ASLEEP WITHOUT MY VENTILATOR AND OXYGEN HOOKED UP ... IF A VCD ATTACK HAPPENED AND I COULD NOT BREATHE, WOULD I START AGAIN? NO ONE KNOWS. NOT EVEN ME.

But then as you keep reading you realize that you really have serious health problems. I honestly have never seen anything like your case. THANK YOU. YOU DON'T KNOW HOW MUCH IT MEANS TO ME TO HAVE THOSE OF YOU ON THIS FORUM TAKE A MOMENT TO THINK ABOUT IT, OR MAYBE ASK A FRIEND, ETC.
THE ANSWER IS OUT THERE (SORRY X FILE FANS), I JUST NEED TO FIND IT.

I would say that I would not use a oxygen conserving device and would always be on continuous oxygen. I DO. PLATINUM XL5 2 LPM PRESCRIPTION.

I am also wondering if you have ever been tested for narcolepsy or cataplexy. I HAVE NOT, UNLESS NJC DID IT AND I DID NOT KNOW. LORD KNOWS THEY DID MANY, MANY TESTS THAT I DID NOT UNDERSTAND. I WILL GO ASK MY PULMONOLOGIST ABOUT IT. I LOOKED CATAPLEXY UP. I WOULDN'T RULE IT OUT. IT IS SURE A STARTING PLACE.

Most people know what narcolepsy is. But cataplexy is uncontrolled muscle weakness or feeling aware of your surroundings, but not being able to comprehend what to do. Kind of like sleep paralysis, but not really. When you see someone in the movies that has narcolepsy they really have narcolepsy and cataplexy. THe narcolepsy is when they fall asleep and the cataplexy is when their head hits the table, or they hit the ground. I cannot offer any more that to suggest that you research cataplexy and see if that sounds like you. I am so sorry that I do not have anymore to offer. THIS IS GREAT. I WOULD NEVER HAVE THOUGHT OF THAT. EXCELLENT SUGGESTIONS. MY WIFE HAS TAKEN TO WATCHING ME VERY CLOSELY AND IF MY HEAD FALLS TO ONE SIDE SHE IS YELLING FOR ME TO WAKE UP. OR TOLLY IS IN MY LAP LICKING MY FACE OR "PUNCHING" ME WITH HER NOSE. WE STILL HAVEN'T FIGURED OUT HOW SHE LEARNED TO DO THAT.

I can say that I have had cancer twice in the last few years and you have to keep looking for people that will help you. I REMEMBER YOUR HEALTH ISSUES AND HAVE SAID MORE THAN ONE PRAYER FOR YOU. WITHOUT GETTING PERSONAL ON HERE, I ADMIRE YOU AND WISH YOU THE BEST. AND DON'T WORRY, I WILL KEEP LOOKING.

Just because one Doctor says one thing you have to search until you get an answer that you can live with. I AM ON MY 4TH RESPIRATORY TYPE DOCTOR. HE IS A GOOD ONE. THANKS AGAIN FOR GIVING THIS SOME THOUGHT.


I second KansasRT. The slurring sounds like low oxygen in the brain (like being drunk). I don't recall if you have an oxymeter (not the right word) but you can get an inexpensive one that gives a snapshot score on-line. That's what my dad did and it's really helped. I HAVE AN SPO 5500 AND 7500 (RECORDS AND PRINTS) AND A NONIN 9600 FROM APRIA. I MONITOR MY PULSE OX, BUT HAVE TO ADMIT YOU ARE RIGHT, I AM NOT RECORDING MY PULSE OX WHEN I AM FALLING ASLEEP IN THE DAY. GOOD IDEA.

My dad has the lung disease COPD and has an oxygen bottle with a long hose in the house. When he feels a little tired he checks his o2 and if below 90 wears the nose thing for a time. He sleeps with it often but not every night. The long hose lets him wander around the house without a problem. I AM SORRY TO HEAR ABOUT YOUR DAD, CHRONIC BRONCHITIS IS COPD, AND I HAVE A 50FT OXYGEN LINE LIKE THAT TOO.

You have a CO2 detector in your bedroom, but have you checked the whole house for carbon monoxide? I know it happened at the doctor's office also, but it's another thing to eliminate. WE HAVE 2 SMOKE DETECTORS WITH CO2 DETECTORS ABOVE OUR HEADS, ONE IN THE HALL NEXT TO THE GARAGE AND ONE ON TOP OF TOLLY'S KENNEL.

The direct link seems to be the lung disease. According to my dad the only thing they can do for him is give him oxygen. Of course he's 87 and I'd guess you are in your 60's (same team, same war). Reminds me, did you come in contact with Agent Orange? That may be one they don't see every day and one of the symptoms is the neurological cessation of breathing (central apnea?). YOUR DAD IS RIGHT. NO CURE FOR CHRONIC BRONCHITIS OR CCHS. I HAVE LEARNED TO BREATHE THROUGH VOCAL CORD DYSFUNCTION ATTACKS ... IF I AM AWAKE. AT NIGHT, I REALLY THINK VCD IS THE REASON I HIT 30 CMH2O SO MUCH.
I WAS EXPOSED TO AGENT ORANGE ON MULTIPLE OCCASIONS, AS WELL BEING FOGGED WITH MALATHION (MOSQUITO ABATEMENT), FOGGED WITH DDT,
HAD EITHER ONE OR TWO BREATHES OF HYDROCHLORIC ACID (FELT LIKE I WAS HIT IN THE CHEST WITH A SLEDGE HAMMER. I FELL TO THE GROUND AND WAS ABLE TO CRAWL A SHORT WAYS TO SAFETY), EXPOSED TO ASBESTOS WHILE RIDING MOTORCYCLES IN THE HILLS WEST OF I-5. OUR DIRT BIKES WERE KICKING UP A LOT OF IT UNTIL A RANGER TOLD US ABOUT IT. WE WENT HOME IMMEDIATELY.

My brain is pretty well stormed for now. If I come across anything else I'll let you know. Also, if you get it nailed down, please let us know. THANKS AGAIN FOR TAKING TIME TO THINK ABOUT IT. I CERTAINLY WILL. EVERY IDEA MIGHT REMIND SOMEONE ELSE OF SOMETHING.

have you been to a GOOD Cardiologist??

Has there ever been any discussion with one about a pace maker? The same signals and nerves that control your breathing are similar ones that control your heart rate.

While you don't appear to have Narcolepsy, you appear to have that disorder where you suddenly get the urge to sleep and you are out within minutes. Have you ever worn a halter monitor during these periods of sleepiness?

Sorry, I cannot remember what the disorder is called but it is extremely rare, I learned about it during a medical documentary about a year ago. It was a young teenage girl that had it, she would be sitting and talking with friends and just collapse into sleep, they would see her go out and catch her. It was NOT narcolepsy. The moral of the story is she suffered with it for most of her life, they installed a pace maker and she never had another collapse again.

I never believe a word a Neurologist says, at most they are only guessing and most of the times they can't fix it if they know what it is.

have you been to a GOOD Cardiologist?? YES. I HAVE BEEN TO 6 CARDIOLOGIST, COUNTING NJC AND COLORADO UNIVERSITY. I AM USING ONE OF THE TOP RATED CARDIOLOGIST'S IN THE SACRAMENTO MAGAZINE. THEY SEND OUT .. UH ... SOMETHING LIKE 3000 QUESTIONAIRES TO HEALTH CARE PEOPLE, ASKING WHO THE "TOP DOCS" ARE IN VARIOUS AREAS. MINE IS IN THE TOP GROUP. HE IS PRETTY THOROUGH, BUT NOTHING LIKE A PACEMAKER HAS BEEN SUGGESTED BEFORE. CERTAINLY IS AN IDEA I WILL TALK TO MY PULMONOLOGIST AND CARDIOLOGIST ABOUT. THE "CANNOT WAKE UP" THING IS NEW SINCE I SAW THE CARDIOLOGIST, THANKS FOR REMINDING ME.

Has there ever been any discussion with one about a pace maker? The same signals and nerves that control your breathing are similar ones that control your heart rate. NO. I THINK IT IS OUR HIND BRAIN, THROUGH THE CNS THAT TELLS OUR HEART TO BEAT AND FOR US TO BREATHE. I AM CONCERNED THAT ONE NIGHT THE PART THAT TELLS MY HEART TO BEAT WILL QUIT WORKING. DURING MY LAST CARDIAC CHECKUP HE TOLD ME EVERYTHING WAS GOOD.
I HAD HYPERTENSION OF THE ... UH ... RIGHT SIDE OF MY HEART, CAN'T REMEMBER THE TERMINOLOGY, BUT THE OCCLUDER IS SUPPOSED TO HAVE FIXED THAT. THEY WERE VERY, VERY CONCERNED I MIGHT HAVE A STROKE IF I REMEMBER CORRECTLY. CONFIRMED IT ON WED., TOLD US ON THURS, APOLOGIZED BECAUSE THEY DID NOT HAVE AN OPENING THAT DAY AND PUT IT IN MY HEART FRIDAY. THE SURGERY TEAM WORKED WITH ME UNTIL SOMETHING LIKE 10PM ON A FRIDAY NIGHT. THEY COULD NOT LEAVE UNTIL I WAS STABLE OR SOMETHING LIKE THAT.

While you don't appear to have Narcolepsy, you appear to have that disorder where you suddenly get the urge to sleep and you are out within minutes. Have you ever worn a halter monitor during these periods of sleepiness? I HAVE NOT WORN A HALTER. I DON'T REMEMBER DOING THIS PRIOR TO MAY 2008. THE PART ABOUT JUST FALLING ASLEEP AND NOT WAKING UP. I THOUGHT ABOUT ASKING "WHY DO I FALL ASLEEP AND IT TAKES 30 MINUTES TO WAKE UP" ON WEBMD, BUT MY PULMONOLOGIST CONTRIBUTES TO IT. WHEN WE ASKED ABOUT IT, AS I SAID, HE SUGGESTED USING A COLD WASH CLOTH, ETC. TO WAKE ME UP.

Sorry, I cannot remember what the disorder is called but it is extremely rare, I learned about it during a medical documentary about a year ago. It was a young teenage girl that had it, she would be sitting and talking with friends and just collapse into sleep, they would see her go out and catch her. It was NOT narcolepsy. The moral of the story is she suffered with it for most of her life, they installed a pace maker and she never had another collapse again. I CAN'T EVEN SEEM TO CATCH A NORMAL COLD ANYMORE. DUE TO MY DETOXING RIGHT NOW, A COUPLE OF DOCTORS HAVE SORT OF SHRUGGED THEIR SHOULDERS AND SAID I NEED TO GET THE MORPHINE COMPLETELY OUT OF MY SYSTEM BEFORE THEY START TESTING ME.

I never believe a word a Neurologist says, at most they are only guessing and most of the times they can't fix it if they know what it is. THE NEUROLOGIST I WENT TO IS THE TOP RATED NEUROLOGIST IN THE AREA. HE SEEMED TO FIXATE ON MY RLS AND MENTIONED MY FEET "BURNING" IS FIBRO MYALGIA AND DID NOT SAY ANYMORE ABOUT IT. I WANTED TO DISCUSS CCHS WITH HIM, BUT HE BRUSHED ME OFF ON THAT ONE, TELLING ME TO SEE MY PULMONOLOGIST.
I WAS DISAPPOINTED IN HIM. HOWEVER, IT WAS ONLY THE FIRST CONSULTATION AND I HAVE NOT BEEN BACK. WE HAD BAD AIR HERE FOR SEVERAL WEEKS AND THEN I GOT THE BRONCHITIS.

WE ARE GOING TO A FAMILY REUNION TODAY. 72 MILES FROM HOME. FIRST TRIP FOR ME SINCE APRIL 10, 2008. I AM PACKING MY SV, E BOTTLES OF OXYGEN, SPO 5500 AND 7500, NEBULIZER, MEDS, A COUPLE OF M-9 BOTTLES...... IF I GET SLEEPY, I CAN HOOK UP THE SV AND OXYGEN, TAKE A NAP. MY WIFE WILL DRIVE BACK. I SEEM TO START FALLING ASLEEP AFTER 2PM .... TWO PM TO SIX PM PER MY WIFE. I DON'T EAT LUNCH MOST OF THE TIME, BUT I HAVE TRIED EATING LUNCH AND IT MAKES NO DIFFERENCE. SHE BLAMED IT ON A SUGAR HIGH FOR AWHILE, BUT I QUIT SWEETS AROUND AUGUST 1ST, AND IT IS THE 31ST, CAN'T BLAME SWEETS ANYMORE.

EMILYJEM, THANK YOU FOR THE KIND WORDS. I DO GET DISCOURAGED AND FRUSTRATED, BUT REALLY FIGHT THE DEPRESSION AND PITY PARTY NOTIONS I MIGHT HAVE. TOO MANY PEOPLE ARE WORSE OFF. I HAVE MEDICAL CARE AND A GREAT WIFE WHO HELPS ME. PLUS TOLLY. SO I AM PRETTY LUCKY.