---

[The following was just received and tragically illustrates the deadly nature of sleep apnea. It is treatable!--and prompt action can save lives. I truly appreciate Ms. Roane's having shared this letter with us and hope that it will make a difference for others.)

To Whom It May Concern,

I just finished reading the emails from B describing her husbands bout with sleep apnea. I, too, wish I had known more about the effects of sleep apnea before my ex-husband passed away last week of the complications. Approximately 28 years ago now, I was awakened in the middle of the night with him not breathing. He had been snoring as he always did but for some reason he stopped. I know it was for only a few seconds but it seemed like minutes. I awakened him and told him what had happened and he thought I was crazy.

As the years went by, his drinking became heavier and heavier and also he was taking 5-6 Tylenol with an alcoholic drink before he would go to bed. He come to weigh around 400 pounds and almost unable to walk. His days consisted or eating, drinking and sitting in a chair. He was not even able to walk to the bathroom so he used a urinal on a daily basis.

Then one day, when his wife returned from work, he was incoherent and acting very strange. She checked his blood sugar, because he was also diabetic, and that was fine so she called his doctor and took him right to the ER. They admitted him and sent him to a room. During the night he had trouble breathing so they transferred him to ICU and put him on life support. He remained there for 3 weeks, had a trach put in and was given a 20% chance of recovery. They were able to gradually wean him off the respirator and transfer him out of ICU where he lived for another 4 days then died of a heart attack. This man was only 53 years old.

I understand he had a lot of medical problems working against him, but perhaps if more was known about sleep apnea by the public, it may give other individuals out there and their families an opportunity to seek help before it's too late.

Please feel free to use any or all parts of this email in your site in hopes that it may help someone else or someone's family member.

Jean I. Roane

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Dr. Clark:

I am a person with narcolepsy. I would like to spread the word about NADH as a possible treatment in disorders of hypersomnia.

NADH has been found to be effective in some cases of Chronic Fatigue and Fibromyalgia. It is being studied in Parkinson's Disease, Alzheimer's, Attention Deficit Disorder, Depression and Multiple Sclerosis.

This is the first non drug being investigated by the FDA for its potential in treating the above mentioned disorders. To my knowledge,no studies are being done by sleep researchers.

Neurotoxic effects from amphetamines may also be mediated by NADH.

For what it is worth.-- RZ

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JUST READ YOUR SITE'S HOME PAGE AND SEVERAL OTHERS RELATING TO SLEEP APNIA AND GERD -- COULDN'T HELP WISHING I'D READ IT A MONTH OR SOONER. I'VE SUFFERED FROM GERD FOR YEARS, OFTEN WITH LONG PERIODS OF TIME WHEN I'D WAKE UP NIGHTLY VOMITING -- AND THIS PAST YEAR OR SO I'VE BEEN IRRITABLE, OFF-TEMPERED, I GUESS YOU COULD SAY, AND COULDN'T SEEM TO PERFORM DAILY TASKS ASSOCIATED WITH MY JOB. STRANGE THAT ONLY MY HUSBAND CONNECTED THE SLEEP APNIA WITH THE ACID REFLUX. HE SAID THEY WERE MAKING IT WORSE -- SO I ATTACKED THE GERD FIRST, AND HAVE BEEN TAKING PRILOSEC FOR OVER A YEAR. HOWEVER, I'M STILL NOT SLEEPING, SO I HAD A SLEEP STUDY DONE A MONTH AGO AND WAS DIAGNOSED WITH MILD APNEA, AND HAD SURGERY ON THE UVULA LAST WEEK. AT THE SLEEP STUDY, NOBODY CONNECTED THE TWO PROBLEMS, NO pH CHECK WAS DONE WITH IT -- WHAT A WASTE!

I'VE PRINTED OUT TWO ARTICLES AND WILL TAKE THEM HOME TO MY HUSBAND -- HE'LL GLOAT, I'M SURE, THAT HE SAW MORE THAN DID TWO SPECIALISTS OVER THE COURSE OF A YEAR OR MORE.

THANK YOU FOR THE INFORMATION -- MAYBE I CAN PASS IT ALONG TO SOMEONE ELSE WHO NEEDS IT. -- DG

---

>Dr. Clark,

> > As one of your patients who has been AWAKE for 2 years now, I want all

> >of your present and future patients to know that if they follow all of

> >your advice as closely as they can, they will be awake too.

> > For those of you with narcolepsy who believe that following his

> >suggestions doen't work, take it from me. Within 45 minutes after

> >eating 3-4 ounces of turkey, I get an uncontrollable desire to sleep and

> >I stay that way for 2-3 days. After being awake this long, I don't

> >think I'll ever eat turkey again. Also, with greatly limiting my intake

> >of sweets, caffeine, peanut butter, apples and dairy products, I have

> >achieved the best control of sleepiness I have had in years.

> > Also, exercise and taking your medication as prescribed helps.

> > In order to achieve good control of your symptoms, you must follow his

> >advice as closely as you can.

> > Isn't it worth it to be AWAKE?

> > Also, if you have sleep apnea as I do, follow his advice very

> >carefully about you CPAP or BiPAP, it could mean life or death to you!

Kathy from W. Va.

[Comment: I was happy to receive the above and to know how well Kathy is doing. And her letter makes some important points, in my opinion. It truly appears that little details can make a big difference.

I've never thought that pills alone could be the entire answer. After all. we don't treat diabetics by giving them insulin and then telling them, "OK...now that you have medication, you can do whatever you please!--from eating pies and cakes to drinking a case of beer a day." Instead, patients seem to do best if they make every effort to render themselves more responsive to the lowest amounts of the mildest drugs that will help them.

Kathy indicates to me that if anyone would wish to contact her with questions, they can do so by e-mail at ksue8@hotmail.com.

My thanks to her for sharing her experiences! -- RWC]

---

 

[TIP FOR PATIENTS WITH HYPERSOMNOLENCE]: I HAVE REALIZED SOME RELIEF FROM MY HYPERSOMNOLENCE BY WEARING FOAM EARPLUGS AT NIGHT. BY FILTERING OUT THE COMMON BACKGROUND NOISE PRESENT IN MOST HOMES, I SEEM TO SLEEP MORE SOUNDLY AND WAKE UP MORE REFRESHED. I WAKE UP LESS DURING THE NIGHT SINCE USING THE EAR PLUGS. I HAVE BEEN ABLE TO CUT DOWN ON MY MEDICATION. --I.C.

---

[TIP FOR PATIENTS USING POSITIVE AIRWAY PRESSURE FOR SLEEP APNEA]: TO KEEP VELCRO FROM STICKING TO AND PULLING OUT HAIR, TAKE AN OLD PAIR OF PANTY HOSE. CUT OFF LEGS, LEAVING 6-8" ONLY OF EACH LEG AND TIE THEM TOGETHER. PULL SEAT PART OVER HEAD. YOU LOOK LIKE A 'BAG LADY' BUT IT WORKS! --E.M.

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[The following was sent by one of my patients with narcolepsy who is participating in research trials of an experimental drug for narcolepsy (gamma hydroxybutyrate) in Cincinnati.]

Doctor Clark:

I thought you might be interested in my experience with the GHB study.--

SLEEP STUDY

I arrived at the Tri State Sleep Clinic at 2:00 p.m. on Saturday along with 3 other women who have narcolepsy. That in itself was an interesting experience. We were all extremely different, but so much alike. None of us had ever been around anyone with narcolepsy, so we had a lot to talk about. It's a good thing too, because we had a lot of time to kill. We filled out a lot of forms, watched a movie, and did some reading. Next time, I am taking a deck of cards or a 'bored' game LOL. Oh yea, and my own pillow! Anyway, they have you there that early so they can take a blood and urine test and get it to the lab and back before it closes. You can't be pregnant or on any other non prescribed drugs. They run this test each time you come. You could be a nun and they still will give you a pregnancy test.

Along with Barb Branigan who is in charge of setting up the study was Dr.Borgan from Orphan Medical, Dr.Sharf, and Dr.Berlowitz both from Tri State. All very nice people by the way and they care so much about people with narcolepsy.

At 7:00 we had a very nice meal from the Boston Market of low fat food. We will eat the same thing when we stay overnight in August, (not leftovers) --this is to keep the study consistent. You have to eat low fat foods because fat interrupts with the effectiveness of the drug.

Around 9:00 a group of special nurses came in. They decided to use a catheter to draw the blood samples instead of sticking us each time. I was relieved to hear that, but now upon reflection, I am not sure it would really matter, except for the fact it keeps you from looking like an intravenous drug head. They take blood samples almost 20 times. It's every 17 minutes the first hour and once every half hour afterwards. Believe it or not, you hardly notice. My arm is a tiny bit sore and I have a small bruise, but that's it.

They put us to bed at 10:00 and we were given a double dose of GHB which is also called Xyrem and sodium oxybate. A double dose is 4 1/2 grams. From now on, I take half that amount twice nightly mixed with 2 oz. of water. You mix both doses up at the same time and keep them by your bedside. GHB has a slightly salty taste to it, hence the name sodium, but it is not at all offensive, at least it's not to me. It's better that drinking Alka Seltzer plus! LOL.

I remember thinking OK when is this stuff going to work and then the next thing I remember was one of the blood draws where I was smiling. I was feeling so good about the quality of the sleep I was getting. I'm not sure exactly what time it was when Barb came in to escort me to the bathroom. I felt a little like I had to much to drink.

In the morning I felt a little drowsy but that went away really fast. I didn't feel that way this morning, and I am sure it had more to do with sleeping at the clinic and having blood drawn than anything else. I go back in two weeks for a checkup and I will keep you all posted as to how I feel. At this point I am sure it is to soon for me to say, but something tells me this is going to be a wonderful drug for all people with narcolepsy and I am so glad that I have the opportunity to be involved with getting it approved. For me, just the fact that I will not be getting up for those midnight trips to the fridge is gratification enough.

For those of you who can fit the qualifications for this test, I urge you to participate in it. You must have either cataplexy, idiopathic hypersomnia, or sleep paralysis and be within 20% of your ideal body weight. Please call Barb Branigan at 513/671-3101. You have to call ASAP. You won't be sorry you did, and of course there is no charge to you. They will even provide transportation if necessary.

Ciao for now, K.

---

[Another e-mail about the Cincinnati GHB study from another person with narcolepsy]--

At least 4 people are still needed for the GHB study in Cincinnati ASAP. Orphan Medical really, really, really needs people to participate in order to get GHB approved. So if you think you can help and that GHB can help you, please call Barb Branigan 513-671-3101 to discuss.

You do NOT have to have cataplexy. It is 6 month study and they arepaying participants $500 to take part. For females: You must not be pregnant or trying to get pregnant for the course of the study. The sleep center will also reimburse and help you find transportation to the sleep clinic. You ARE allowed to stay on your current meds.

If you are not satisfied with your current treatment, please consider taking part. They have had such great success with people - from eliminating cataplexy and hallucinations to helping decrease EDS. I go for my first dosing on July 10 and am so anxious to try it. I'll report back on the results. --L.

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[Thoughtful suggestions just received from a twelve year old contributor who is one great observer! Outsmarting one's problems beats the alternative approach of turning to pills, any day of the week.]--

I am 12 years old and sometimes can't get to sleep til 12 when I try going to bed as early as 8. A few simple techniques that I have found useful are:

1.Count your breaths. Inhale=1, exhale=2, so on and so forth. Stop and go back to 1 at around 6 or 7.

2.Do a body sweep. Starting at your toes, flex your toes, then your feet, then calves, and work your way all the way to the head muscles.

3.Do an eye massage. Start by your nose, and gently with your thumb massage down the eyebrow line, stopping and staying in that spot every 1/4 inch.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~NOW~~~~~~~~~~~~~~~~~~~~These were all techniques to get you to sleep tonite if you're reading this at 2am. Here are some to do that should help long-term.

1.WATCH what you eat. Nothing with too much sugar or caffeine, and absolutely NO food at least 3 hours before you go to sleep. If you do that, it will keep your metabolism running overtime.

2. Get plenty of exercise. That will help tire you out. I noticed that when I was in overnite camp, I fell asleep much more easily after a day of much physical activities, then I do when I sit around the house all day.

3.Use your bed ONLY for sleeping. No reading, working, watching TV or any other activities in bed. That will associate you that your bed is SLEEP time. SO when your ready to go to sleep, get in bed. If you wanna read, do it on a sofa or something.

IF NOTHING WORKS, CONTACT YOUR DOCTOR; HE SHOULD BE ABLE TO HELP YOU WITH MEDICATION.

Good Luck. --Julian Root

---

The following series of e-mail letters was sent to me by a woman in Virginia who graciously gave me permission to reproduce them on The Sleep Site. They have appeared in the section on sleep apnea but I believe their vital importance warrants their placement on The Forum page as well.

Why is it important to share them with you? Because they illustrate all too vividly what severe, untreated sleep apnea can do to patients and their families.

Sleep apnea is a potentially dangerous condition. In the absence of effective treatment, it can kill people. However, it usually kills gradually, a bit at a time: with progressive complications and repeated intensive care unit admissions.

The following letters depict a tragedy that almost certainly could have been prevented by timely, appropriate outpatient care.

I really don't know where else to turn - my husband who is 69 years old and very overweight is having a problem with sleeping - about 5 years ago when he was in the hospital with dehydration and flu, he had an attack of apnea -stopped breathing and the doctors inserted a tube down his throat and put him in intensive care for three days which is the time he did not regain his facilities.

Everything seems to have gone well since then, he is still on high blood pressure medication, he had only one kidney - but other than this he seemed to be okay - now in the last two weeks he has gotten out of bed in the morning, come downstairs and falls asleep - most of the time while reading the paper, drinking coffee etc. He has fallen asleep on the toilet, on the side of the bed, etc.

Also he is experiencing a shortness of breath a lot - He used to snore before the apnea, but since then I have not heard him snore or gasp for breath while he is asleep. Right now it is 11:20 am and he has already fallen asleep three times each with a length of over 30 minutes. Sometimes talks or is not aware of where he is when he awakes - I need help -doctor's appt is two weeks away.

---

Dear Dr Clark - With my thanks to you for your quick answer to my questions and for your honest reply that my husband should be in the emergency room - I took him last Tuesday to the emergency room and they admitted him to the hospital immediately - they thought at first it was a heart problem - I thought it was a mini stroke - put him in a telemetry unit at first - he kept sleeping the whole time and about 1 am he finally stopped breathing and all hands were around his bed - he was then put in CCU and hooked to a lot of machines, etc.

He spent one day in CCU and then put him in ICU - the doctor said that his heart is damaged and that his lungs were really bad - that after his apnea episode 5 years ago that he had 5 more years of damage to the lungs. Guess he will be on the respirator for quite awhile. I do wish that I knew more about it. From what they are saying now, he could not breathe alone now at all.

But I do want to thank you for your quick reply - it meant a lot to me - I will keep you updated if and when he should ever leave the hospital.

I am in Va and only wish that I were closer to central Ohio - ...your letter was the help I needed - I thought that this was serious and that he should be seeing someone - many thanks -

---

I am sorry that I have not contacted you before this - today has been two weeks since my husband has been put in the ICU unit and still no light at the end of the road - we know he has sleep apnea and that when he entered the hospital his oxygen in the blood was at 63 percent - as I told you before he was incoherent at that time and we thought that he was having a mini stroke - the doctors at the hospital thought that it was his heart and after all was said and done they said yes - it was a very bad case of apnea -

Right now he had been intubated for 12 days and they finally removed that -tried him last night on a C-Pap and he was very agitated by that - they thought that it would be best to intubate him again, but he finally listened to them and decided that he would breathe well for everyone - today he seemed okay, he is still in a daze and says some things that are incoherent - They have a breathing mask on him and he is doing ok with that, but this evening they are going to try the C-Pap or Bi-Pap and see what that does - if he cannot tolerate these, then the ENT doctor will talk to us tomorrow and they want to do a trach on him which will help with the breathing -

My question is not, are they doing the right thing and going about it the right way?…

Thanks, B.

---

Just wanted to keep you informed - my husband is going into the fourth week in the hospital now - he was in ICU for 15 days and then put in a unit called Stepdown - this unit is not as busy as the ICU - not as many doctors walking around and this was not good - one doctor was passing my husband's bed and saw he was blue and said he revived him there and they put him back in ICU where he stayed another couple days - Again he was put in Stepdown and he seemed to do okay, but they kept trying to get him to breathe on his own - sometimes with a soft mask and other times with the oxygen lines. After much talking they tried again with a Bi-Pap and the face mask was so bad - didn't really fit and he had sores all over his face and the back of his ears.

He is now in Telemetry and being monitored all the time - the reps from the C-Pap company came to the hospital yesterday and now he has a C-Pap that fits and that we will be able to rent for a year and then buy it.

He will be transferred next week to a nursing facility for rehab and then finally home - I am afraid that we will be looking at a total of two months by the time he comes home.

Believe me, this apnea is a terrible thing - people do not realize how dangerous it is to the point of being life threatening.

Thank you again for your kind words. --B.

---

Thank you for your reply - my husband spent another bad night in the Stepdown unit of the hospital - I was with him this morning when the doctor said that they are looking at a trach now - since the C-Pap and Bi-Pap didn't do so well for him - under normal times he is living with 85 percent oxygen in his blood - today it was in the 70's and before it was 60's - I do wish I knew more about this -

I am meeting with the ENT man later on today and will discuss the trach more in detail and find out what they plan if this does not work -They had mentioned the other operation, but he is 70 years old and they don't want to do a major surgery on him in his condition.

You asked about using anything I said on the web site and I think that if this would help anyone - anyone at all - that it would be good - I think that people should be more educated about Apnea and know the dangers of this -

I have almost lost my husband twice now on this hospital stay alone.

Thank you for everything. --B.

---

Ultimately, I received the following e-mail letter. My heart goes out to B. What occurred was a needless death that was preceded by immense suffering. May B's kindness in sharing her painful experiences help protect others from similar tragedies.

I hadn't written in a while - had my husband in the hospital for so very long and they finally released him to rehab where he did not do too well. He came home a week and a half ago and never gained any strength - he died this morning of a massive coronary which was brought on by the apnea - this is a terrible thing and I hope that you have impressed people of the serious nature of this disease.

I felt so very bad that my husband had to endure so much in the hospital - even to the point of having a trach put in only to have nothing help in the end.

Thank you for all your good thoughts. --B.

---

 

[Some kind words from a patient who battled sleepiness for years without medical help]--

Just wanted to say:

1. How truthful the statements on your web page are.

2. Dr. Clark is one of the most caring health care provider I have ever encountered. He truly does care about his patients: clearly an unique quality.

3. Dr. Clark's professionalism is complimented by his knowledge, not only in sleep disorders, but his overall knowledge as a physician.

4. I suffered for many years with a sleeping problem and voiced this to my primary physician but my dilemma continued. During an appointment made for my son, I encountered Dr. Clark's literature on narcolepsy. I recognized I was not alone. After my scheduled appointment, Dr. Clark retaliated with support and dedication then perpetuated a treatment regimen.

5. Thanks. --CW, Ohio

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[I just received the following from a woman who fortunately "stuck to her guns" and insisted upon getting a diagnosis rather than pills. Physicians who turn to prescribing antidepressants whenever patients complain of being tired, take heed. Sleep apnea is common and dangerous. It also is easily diagnosed and treated. To miss this condition is serious and not consistent with prevailing standards of care.]

I want to tell you a story of how neglectful some of the doctors are when it comes to diagnosing sleep apnea.

I am a female, age 65 and strong and healthy and active and do not look much over 50. I like to travel with the younger crowd and come from a family of strong German stock with no disease in the family line.They all are dying in mid to late 80's.

I recently was diagnosed with sleep apnea after a night in the sleep clinic in Norfolk General in Virginia. I have a moderate case, stopping breathing 24 times an hour while sleeping on my left side. It is a moderate case but causing my severe symtoms. I am told it would have been more had I been lying on my back. My oxygen level dropped to 82%. After 4 hours of sleep I was awakened and put on the CPAP machine to finish the night . After only 4 hours of good sleep I woke to feel like a million dollars. There was the body I used to know , the one I have searched for for 13 years. The body I kept telling the doctors was there, somewhere.

My doctor admits he was at the end of his rope. He is the 4th doctor I have had and I swore I would stay with this one. So, he tested for thyroid disease and then the sleep clinic. It was only when I told him I was losing the healthy body I usually could feel at a distance and felt like I was preparing to die. I was so tired when I woke in the morning I was not sure if I was alive. A stuffy forehead headache. Staggering to get to the kitchen for a cup of coffee. When I talked I would have to stop to breathe because I would get out of breath. I was worried for my life and told the doctor "now is the time; find the problem or I will find another doctor".

He at first suggested I try Prozac. I had come to see him so many times with no problem he could find and with the files of the other doctors, he had come to feel I must be depressed or a problem . I refused and stood my ground. It worked and now I will watch my health myself more often. I don't have another 13 years to waste.

Now, I have a machine at home and most important is the heart. This was my big worry. I now have a heart that does not beat so hard that I can feel it all over my body, Now I have normal blood pressure. Now I have the energy to exercise and swim and walk without being so exhausted I have to go to bed. I have a problem now of forgetting all the old times when I would stop work and go take a power nap. I usually felt better because it was most likely the best sleep of the day/night. It is like looking over my shoulder expecting to see something following me and it is called exhaustion and now it is not there.

I feel wonderful and recently, for the first time, did my share of driving a 12 hour drive without going to sleep at any time during the trip. Usually I slept day and night while my husband had to drive.

I wish I could tell more tired people that the day problem has a night cause. I am well informed but I did not know this.

Wherever this is going, you may quote me.

----B. H., Sligo, North Carolina

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[Excellent suggestions from a teenager who has realized that common sense measures are often the best approach.]--

Just a small bit of advice from a teenager that has learned through experience, but still ignores his own advice: make sure you have not a care in the world before you lie your head down by sorting it out beforehand (if not actually, mentally) so it does not bother you before or during sleep. Perhaps the most common cause of lack of sleep is an overactive brain and once this is under control, sleep will come instinctivly. Also, make sure you are at ease with yourself and if not, make every attempt to combat the problem.

----M.T.

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[Dealing with severe cataplexy is an important topic, since this symptom of narcolepsy is frequently misunderstood and dealt with as if it were something else. The following e-mail shows how concern of others can be invaluable to the afflicted person.]--

A. S. wrote:

A FRIEND OF MINE EXPERIENCES SEVERE ATTACKS OCCASIONALLY. WHAT WE HAVE FOUND TO HELP IS ICE EITHER ON HIS FOREHEAD OR THE BACK OF HIS NECK. THIS SEEMS TO WAKE HIM UP IMMEDIATELY. HE SAYS HE CAN HEAR EVERYTHING THAT WENT ON AROUND HIM WHILE HE WAS OUT. ACTUALLY IT IS VERY SCARY IF YOU'VE NEVER EXPERIENCED SOMEONE HAVING AN ATTACK.

Ms. Sanfilippo, I'm glad for your concern for your friend and the fact that you have found something that helps his cataplexy. It is odd that certain things seem to help some individuals but not others. Some would prefer to be left alone (perhaps embarassment over requiring assistance prolongs the episodes in such individuals)--while others will hope that those around them will move their arm a certain way, put a damp washcloth on their forehead or some other measure that tends to work for them.

Cataplexy can be frightening in appearance. It sometimes is mistaken for an epileptic seizure, faint, or cardiac arrest. It certainly is helpful if narcoleptics with cataplexy forewarn friends and family members of their attacks and what would be most helpful to do when they occur.

People remain conscious during cataplexy, unless they doze off--the problem is a limp muscular weakness or paralysis.

I appreciate your input; it is a topic that really warrants inclusion on The Sleep Site and I'll post your comments on the Forum page. Thank you --Dr. Clark

---

 [From Aaron and Kristina]:

TRY 15 MINUTES OF STRETCHING BEFORE BED.

  

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[From D. and R.]:  

I had a heck-of-a-time trying to keep a chin strap on - either it would fall off forward or backwards, but would never stay - I tried many different kinds on the market. THEN I found a strap for Orthodontic Night-Head gear and velcrowed my chin strap to it. It looks like a "Juliet Cap" and STAYS PUT!!

---

[From Lynne S.]:

Hi Dr Clark,

I thought I would pass on what how I have been able to keep my bed in the RT [reverse Trendelenburg--head above feet in a straight line] position and how I stay off my back. I went to the lumber store and bought 2 2x10s both 10 feet in length. I had both pieces cut in half creating 4 5 foot long pieces. With 3 inch nails I nailed 2 pieces together and then nailed the other 2 pieces to the outside of the original pieces. I have a solid sandwich of wood, 8x10x5 feet long. I took the casters off the the bed frame and placed the boards under the head of my bed. It looks funny but it works.

Instead of tennis balls I bought wiffles balls made with slots instead of holes. I threaded a piece of material through the wiffle ball and put snaps on the material. I then put snaps on the back of my pajamas. It is easy to do, I don't need 1 tennis ball per piece of clothing, I can take them off to wash the pajamas, and best of all if I want to lounge around in my pjs in the morning I have nothing permanently attached to my back .

---

[Another tragic death related to sleep apnea that carries a vital message. Sleep apnea can be worsened by any medications that cause sedation, sometimes with lethal results. Both medical personnel and the general public must become aware of this critical fact!]

My wife suffered from Crohn's disease, fibrositis, ankylosing spondylitis and sleep apnea: quite a lot for a 32 year old. Because of severe pain in her right side, the result of many operations and scaring inside her stomach, it was agreed an operation was needed to find the cause of this pain. The first operation found my wife had many adhesions and a twisted bowel. The doctors spent approx. 3 hours fixing the problems as best they could; 4 days later my wife required further surgery because of a blockage in her bowel. Again doctors spent 3 hours operating ,this time to remove a small section of her bowel which had stuck together. After both operations, my wife spent about 10 hours in ICU. She was then taken back to her room to recover. Because my wife was in hospital for 6 weeks before they finally decided to operate, where she needed pethidine every day because of the pain, following the second operation she required large doses of pethidine and morphine. It seems she required large doses because she had been using so much over the past weeks.

The first morning after the second operation at 4:45 am, a nurse walking past my wife's room did not hear any snoring. Sensing something was wrong, she went in to find my wife had stopped breathing and her heart had stopped. She was last checked at 4:00am. The staff managed to get her heart going again but they could not get her to breathe by herself. It was explained to me later that day my wife had suffered severe brain damage, so severe they were almost positive she was brain dead.

It turns out they were right and 3 days after she was found, I gave the doctor permission to turn the respirator off and let her rest in peace.

The only explanation they could give me goes like this. Because my wife was so heavily sedated, at some time just after 4:00am she stoped breathing and because ofthe amount of sedatives in her brain it could not wake her up again, around 20 minutes later her heart stopped and it must have stopped for at least 20 to 30 minutes, causing severe brain damage .

The only advice I can give is if someone close to you suffers from sleep apnea and they have to take large doses of sedatives or pain-killers, someone has to be with them continuously until the medication level decreases, whether they're in hospital or not.

I wish I knew then what I know now; my wife would still be alive.

---J. G.

---

[Yet another tragic death from sleep apnea that undoubtedly could have been prevented. Many people with sleep apnea play roulette every night when they sleep! To allow them to go on doing so, when prompt treatment could save their lives and health, is inexcusable. Also, it is crucial to realize that first, weight loss does not necessarily eliminate the problem, and second, that the physician should take appropriate steps whenever warranted to protect the patient against complications during the weight loss process.]

I share this story in memory of my brother in law who died at 33 years of age. As I sit here and cry looking over your information, I am infuriated at his lack of care after being diagnosed three years prior with Apnea. All he was told was that he needed to lose about 30 lbs. of weight.

I am afraid to share your WEB site with his widow (my younger sister). You see, she has 2 young boys to raise by herself now. The awful tragedy is that this did not have to happen, nor should have. My brother in law was on a fishing trip to Florida with his father who first noticed that his son stopped breathing for long periods of time. He just laughed when his Dad told him that he was afraid to fall asleep and sat up all night watching him because he had stopped breathing so many times.

At the insistence of his Dad, he had the sleep study done. He started to gain weight mostly around his abdomen. At his request, my sister put him on a sensible diet. Results were moderate which frustrated him terribly. Then he started to sweat profusely and was put on a diuretic and blood pressure medication. He developed bronchitis two weeks before his death and was put on an antibiotic and inhaler. I now suspect he was in congestive heart failure.

Coroners report, his heart fibrillated and just stopped. The ER personnel worked on him for 2 hours before pronouncing him a DOA.

My realization is that not breathing right causes oxygen deprivation which in turn causes the heart to beat wrong. Try holding your breath until you cannot. The nervous system, heart and lungs react violently sensing eminent death. Oxygen is the life blood of every living cell in your body. Why are we so stupid as not to realize that every major organ in our bodies depends on life giving properties blood brings. Oxygen in turn must be present in blood for this to occur. The heart and lungs begin to suffer and fail first. Hypertension is sure to set in and as a result, other organs such as the kidneys are sure to begin failing.

If I had only known then what I just found out. How horribly awful, to know that he could still be alive today. He would be 38 years old.

What good is any testing procedure if there is no effort made to treat the illness?

Please pay attention to your loved ones' sleeping habits. If they snore and stop breathing turn them on their side to see if they stop and begin to breath normally. If they stop snoring but still seem to skip breaths and then gasp for air they have apnea. If someone is just complaining of being constantly tired even upon just awakening they are probably not breathing right and may already have, or develop apnea with all its ugly results. If you love them, take aggressive action, because their health care provider certainly may not.

---O.F.

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[Some suggestions on combatting sleeplessness!]

I have had good results by relaxing along w/ deep breathing. e.g. inhaling through nostrils and exhaling by mouth. I count breaths to 60 and start over at 1. I sometimes take about 4ounces of warm milk. I also change beds. All of the preceding have helped me to get thru the night and to have a good day. I can find some humor in the problem noting that "each night is an adventure." I hope that this helps someone.

---R.A.S.

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[One patient's experience with trazodone and restless legs. Has anyone else noted similar improvement with this medication?]

When I was placed on the antidepressant medication, Trazodone (100 mg; 50 mg. at various times), I found that my RLS symptoms went away. Thinking that this was just a coincidental "remission" of RLS, I did not put much faith in there being a connection.

However, over the last seven years, I have found that there is a definite correlation - for me.

Recently, while on a 22-hour trip, RLS was particularly active and disturbing, as well as interfering with our travel.  Since I could not stay awake long enough to be of use driving, I took a 50 mg. tablet of Trazodone (my usual pm dose).  My symptoms abated.

I haven't heard of anyone else experiencing this, so perhaps this is truly an anomaly.  But, if it could help someone else...

--M.B

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I want to warn potential buyers about Sleep ------- [a strap worn under the chin and over the top of the head, marketed heavily via e-mails as a purported treatment for sleep apnea].  I bought it and it did NOTHING!!  It costs over $65, is a couple pieces of stretchy cloth sewn together and it doesn't work, and they won't refund your money.  Buyers should read the fine print.... they only refund for manufacturer's defects.  Please share this with potential buyers of this product.  Thank you.  N. J.

I am not surprised by this reported experience. I see no compelling reason why this device should work and certainly question the advisability of the manufacturer's glowing claims in their advertising. -Dr. Clark

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I have another horror story for you. In May of last year (2002), I was diagnosed with severe OSAS, and they gave me a [CPAP machine]. The problem is that the machine functions but it doesn't cure the problem. The machine they loaned me to test my sleep apnea was a self titrating machine. This cured my problem!!!! As you can see, they gave me the wrong machine, and now won't order the right one. 

How is that for treating people? The first 3 months after I got the CPAP machine I called [the HMO] many times to tell them that I still was not sleeping. They said I needed to give the machine more time so I could adjust to it, which I did for up to a year with no effect!!!!!!!! 

P.S. They never did an actual titration study on me, because they just used a machine to hook up to a computer to check me out. Is this a sleep study????????? --S.B.

I'm sorry to hear what happened to you. Standard practice is definitely to do a formal titration study, which is far better than in-home short cuts or using an auto-titrating device. The latter are not always adequate because oxygen levels typically are not monitored. If your sleep apnea was severe with drops in oxygen levels, you still may not be adequately treated on an auto-titrating even if you are not snoring and feel well. One can drop oxygen levels from excessively shallow breathing in REM sleep which may not cause any symptoms (nor snoring), but instead, serious complications. -Dr. Clark

 © Copyright 2006 Robert W. Clark M.D. Inc.