The Reason For Asking My 3 Questions

[Steven Y Park, MD]

I asked everyone on this forum the following 3 questions:

1. do you prefer to sleep on your back, side or stomach?
2. did you or do you have cold hands or feet?
3. did or do either of your parents snore and do they have any medical problems?

Overwhelmingly, the answers were: mainly side and stomach only, the vast majority have cold hands or feet, and almost everyone has one or two parents that snore heavily with various degrees of heart disease. Many of you also complain of intense fatigue.

This sounds amazingly like what I see in patients with upper airway resistance syndrome. UARS is a mild variation or precursor to sleep apnea, but it's different in that it's typically seen in young thin women (and men) who don't snore, can't sleep on their backs, have cold hands or feet, have normal or low BP with lightheadedness or dizziness, chronic fatigue and unrefreshing sleep no matter how long one sleeps, various unexplained gastrointestinal problems, hypothyroidism, depression, and many others. Later on, as they gain weight many of these symptoms improve (especially the cold hand and dizziness), but begin to develop high blood pressure, diabetes, heart disease, heart attack or stroke.

Anatomically, they all have relatively narrowed jaws with very narrowed breathing passageways when on their backs. Due to gravity, the tongue (which takes up too much space within a smaller jaw cavity) falls, back partially, and then when in deep sleep, can obstruct completely due to muscle relaxation. If you stop breathing and wake up after 10 seconds, then that's called an apnea. If you stop breathing and wake up anywhere from 1-9 seconds, then you'll wake up to light sleep or be awake, but it won't get counted as an apnea. The minimum number of apneas you need every hour on average to receive a diagnosis of sleep apnea is 5. But if you stop breathing 25 times every hour and wake up after 2-9 seconds, then you're told you don't have any sleep apnea.

There is a significant group of people who stay in UARS, and with the chronic extra stress response due to the inefficient sleep with repeated arousals, their nervous systems and immune systems are heightened. Having a hypersensitive nervous system or immune system can have certain consequences. UARS patients have normal or heightened nervous systems, whereas OSA patients have diminished nervous systems.

Your anatomy is hereditary, so you got your smaller jaws from one or both of your parents. As people with UARS get older and gain more weight, they'll have the classic signs and symptoms of obstructive sleep apnea: severe snoring, breathing pauses, and medical complications such as heart disease, depression, heart attack or stroke.

I can't say if one definitely causes the other but I can say that there's a definitely link between MS and sleep-breathing problems. Some of you already have sleep apnea. I know it's impractical, but it would be interesting if everyone could get formal sleep studies to see how many people with MS have OSA or UARS. One is not exclusive of the other, so if you have a family history of snoring and heart disease, it's important to get checked for sleep apnea.

Snoring is a sign of major breathing problems at night, and is nothing to be laughed at. A heavy snorer should definitely be checked for sleep apnea, since untreated, it raises your heart attack and stroke rate by 3 and 5 times, respectively. Not to mention high blood pressure, obesity, depression, anxiety, heart disease, and Alzheimers (this one's controversial, but there's plenty of convincing evidence). Also, you don't have to snore to have significant sleep-breathing problems.

[uk2]

I have trouble sleeping and wake myself with my throat noices, i also dream all night long which is odd as before i got ill i hardly ever dreamed and its mainly nightmares of the worst and i wake terrified sometimes which is embarrasing being a mum of 3 young kids, i also sweat at night. I went to a ENT due to a feeling of a lump in my voice and a weak voive as the day goes on he told me i had a narowing on one side of my nose but nothing else would this effect my breathing at night.

hope you can help

[sandie490]

Hey Dr Park,

I am not yet dx but, hope to be soon, I am just starting out so we'll see.  Anyway I am a 48 yr old female.  I started out with Fibro, then epstein-Barr, the lupus, then type 2 diabetes, and asthma from birth, and now very possibly, MS. My sister was dx MS recently she thinks I had it first and was misdiagnosed.  We'll see, I've only just started the process.  I am over weight, and I snore at times very loud, according to my hubby. As a child, I was very thin and always cold, and always sick with the asthma.  I had 4 major surguries since 2005, starting with a complete hysterectomy.  The others followed and were from problems from the first surgery. Since my 3rd surgery, I have been sleeping in a recliner. I try to sleep on my side in the recliner, it starts out that way, but sometime during the night I wind up on my back, and I think that's when I will snore.  But when I slept in my bed it was worse, so I personally think the elevation helps a bit. I have not been able to sleep in a bed. My hubby does notice that I snore less in the recliner. I have tried soft mattresses, medium, firm.  It doesn't seem to matter, I seem to snore more, I always slept on my sides by the way, but I seem to wake up in the middle of the night in excruciating pain from head to toe.  It seems some time in the middle of the night my muscles relax too much and that's what happens.   My dad has heart disease,heart surguries, brain aneurysm.  Before the surgery for the heart and brain believe it or not, no high blood pressure or high colesterol, always borderline diabetes, meanwhile, he has 7 brothers, all of which are diabetic, including his mom. My mom has extremely high blood pressure,very slightly over weight, she is on 4 meds for this,and it's still too high, plus she has a history of TB, snores a little, is a breast cancer survivor, and also has a aneurysm near the heart whcih is over 4 cm and drs are watching.
My dad has always snored, they tried to do a sleep study on him but, couldn't because, he is not the same, personality and fears have changed since the brain surgery, and when the put the mask on him for the sleep study, he can't handle it, he feels like he is sufficating, so I don't think they will be able to do it.  
I myself just started having sometimes borderline high blood pressure, am being watched. I have always had normal tests results for any of my heart tests. and cholesterol.  But, when I recently sent to my ear nose and throat dr because of bad noise sensitivity,  when he checked my throat after telling him about my snoring, he said it was a little narrow, and he wanted me to go for a sleep study, but I can't because I am in the process of moving, and it too much right now.  If you could shed some light on anything  with any of our symptoms or problems and the link to MS, WOW what a an exciting prospect!  
Anyway there it is!   THX  Sandie

[scootermom]

This is so interesting! I am a left-side sleeper, cold hands/feet, raynaulds, arthritis (back and feet), rls, pots, and narcolepsy (from a blood test), father was bad snorer, his mom was worse, brother with apnea, .  
I have had sleep study tests as well as the MSLT, which showed everything was fine. My new neurologist said that the test was done incorrectly because I was not told to be off all my meds for 2 weeks before the test. (provigil, mirapex, and clonopin). I was told to take my meds before the test. I've now been off the meds for 3 weeks waiting for everyone's paperwork to go through and will have another sleep study andn MSLT.  Off my meds for rls and narcolepsy. My legs wanna go but the rest of me doesn't!  haha
I have also had an LP done, which was incorrectly done, no blood drawn at the time, to check for MS. I wasn't sure if that was needed again, until my, right side only, leg and arm have gotten temors. I had one whole body tremor which seizure was ruled out because I was awake the whole time. I dont want to do that again.
The only test my dr's haven't agreed on is for POTS tilt table. I was dx 10 years ago. One says have it done again the other says no. Should I?? Also having an autoimmune test.
I am useless since I have been off my meds, can't drive, can't function. After the MLST I'm going back on my meds but can't seem to find out about the tremors.
Sorry this is so long.....I'm in for your sleep study!!  You'd get a lot of volunteers!

[TeriK1972]

I said yes to all your questions.  I sleep on my side or stomach.  I always have cold hands/feet and my father is a  horrible snorer and is a diabetic.  Grandfather and uncle both died from heart attacks.  Over the last two years, I have been sleeping but do not feel refreshed, regardless of how long I sleep.

In December, I had a formal sleep study done and while I don't have full blown sleep apnea, there were desaturations down to 87.  What they noticed was that I sometimes "forget" to breathe. They thought I might benefit from CPAP and I was given a C-Flex machine set at 7 which drops to 3 when I exhale.  I can honestly say, I hate it with a passion.  I have had it for over a week now and have trouble breathing with it. I wake up more frequently with it, had several nose bleeds and now I have a sinus infection from it.  On top of that, I have just about hanged myself w/ the tubing.

It's suppose to help, I am suppose to feel refreshed but I feel worse off now than without it.  

[singinalong]

Hello Dr Park,
I have been told by my husband that I am a LOUD snorer... He said it has only been in the last couple of years. I am up many times through the night, waking up for no reason. I have been put on Trazadone (50mg) for this issue, and it was working for a while, (didnt help the snoring ) but now, I am back in my patterns of getting up a few times in a night. I get up, get a drink, or whatever, then I go right back to sleep again. Any Suggestions???
I found your information very interesting... Thank you so much!!

[Sandyezco]

I'm a 48 year old female who was diagnosed with MS 2 years ago.  At that time, I was also diagnosed with crohn's (I also have a sister with crohn's.) I also have arthritis and at one time was told that I suffer from ankylosing spondylitis.  
My parents have always been very heavy snorers. My mother, who is still living (age 84), has also has many health problems including heart disease (history of heart attack, stroke, mitral & aeortic valve replacement, by-pass), ulcerative colitis, macular degeneration, and crippling arthritis.  Also, I have a brother who has had heart by-pass and another brother who has been recently diagnosed with sleep apnea.  My father will be 90 in March and has some health problems normal for his age.  After reading your post, I thought you might find my background interesting.

P.S.  I am a side sleeper.

[alagirl]

do you happen to have antiphospholipid syndrome, or have you been tested for it?

[Hope75]

Interesting posts.  I c/o cold hands and feet all the time.  But, my feet burn, so I leave socks off, blankets off, even though I can feel that they are too cold.  My doc thinks my anxiety shunts all the blood to the major organs and hence, away from my extremities.  A lack of oxygenated blood in those extremities is leading to neuropathy - per my doc.  What do you think?  After 2.5 years of relapsing/remitting pain, I am at a loss.  Johns Hopkins did a small fiber biopsy that showed excessively segmented nerves.  Their verdict was that there was some insult to the nerves at one time, but are healing.  They don't feel like they are healing this month, but getting worse again.  Thanks for any input!

[Steven Y Park, MD]

Scientists still haven't worked out all the details, but narcolepsy has been shown to be possibly due to a genetic mutation where a person doesn't make enough hypocretin. Interestingly this area of the brain is also involved in other various neurotransmitters that directly or indirectly also can be involved with MS. One possible explanation is that since MS is an autoimmune condition, and since it can affect any part of the brain, perhaps MS can also affect the area of the brain that makes hypocretin.

It also sounds like you may have a strong history of obstructive sleep apnea in your family.

[mom9335]

My adult son has MS.  My husband has always been a heavy snorer and has very high blood pressure.  AND, here is the big question...his mother had Narcolepsy.  I have been reading that the gene(s) for MS and Narcolepsy may be the same.  Your comment?

[young at heart]

Dr.Park,

Thank You for your interest and the comparison of sleep disorders that can effect MS patients.

I sleep on my back---2 back surgeries left me chronic bilateral adheasive arachnoiditis
I have raynaulds
My parents both snore--my mom has high blood pressure,my dad well he's an alcoholic and I don't remember when he was a Drs. last.

I have had an EEG,it was abnormal,but not positive for seizures.
It was the one where you have to be awake for 24 hours.Thats hard for one with MS.I can fall a sleep at the dinner table.Provigil does help some.

T-lynn

[meg321]

thats very interesting, my new Dr is driving me crazy about my sleep problem causing my fatigue and she has set me up for a sleep study. Not sure when but soon.  I have had a sleep problem my whole adult life.

Will let you know when i have it....

hugs, meg

[ChunkyMonkeysMommy]

Wow, very interesting! Thanks for sharing with us! I can't remember the last time i woke and actually felt rested. I'm sure it has been well over six months ago. (My son is 6 months old, lol.) Even before that, I still felt groggy quite often, to the point that I would drive to or from work (1/2 an hour) and fall asleep driving! And if I didn't fall asleep, there were many times that I would be so 'out of it', for lack of a better term, and especially if I had a migraine, that I wouldn't even remember the drive, or would completely miss my turns, after driving the same route for four years.

[PastorDan]

Fascinating information.

As I mentioned somewhere in one of these threads (I think), I am undx for MS, but very frequently seeing what are possibly new signs of it, and working toward SOME dx, preferably NOT MS, of course.  However, I do have OSA, and have been on CPAP for the better part of the past year.  I think our oldest brother might be, also.  (Memory's one of my symptoms lately).  Also, our parents' snoring was often loud enough to wake us up when we were kids.  I have five living siblings and two we lost as infants (in 1962 and 1967) due to breathing problems.  No idea if this information tells you anything, but if it helps, use it.

[opie74]

You are definately on to something!  Even when I sleep for 8 hours, I am not rested.  I have TMJ problems.  When I sleep on my back, my jaw falls and hurts.  I am sure that it causes breathing problems.  When I sleep on my side, my jaw moves to the side and aches.  I did have my toncils out, my turbinates reduced, and my septom straightend last april.  That had made a HUGE difference in the way that I sleep.  I noticed afterward that I would wake up almost hungover from sleep.  As if Ihad not slept in years.  Maybe I had not!  I do have tightly fitting teeth, especally on the top, and I do not usually snore.

[Steven Y Park, MD]

Sorry, I pressed post by mistake before I was finished.

Even at 50%, do you think that all MS patients should get at least screened for sleep-breathing problems? Also, just because you don't have it when younger doesn't mean you can't get sleep apnea later on. hbananas' story could be a great example.

[Steven Y Park, MD]

Thanks for your comments, especially your MS specialist's reporting that 50% of MS patients have OSA or other sleep issues. If you add UARS, I'm sure that number will go much higher.

Even at 50%, do you think that all MS patients should get at least screened for sleep-breathing problems? Also, just because you don't have it when younger doesn't mean you can't get it

[hbananas]

Hi.  I haven't answered anything yet because I'm not diagnosed with MS, just a CIS of Transverse Myelitis.  However, now that you have spilled the beans, here's my response, because it fits so well:

1.  Side exclusively.  Used to like stomach as a kid, but not so much now because it makes my back hurt.
2.  Had cold hands as a teenager.  Now that I'm an overweight 50+ age, they are warm.
3.  Father snored like a chainsaw, was very obese, had type 2 diabetes, hypertension, and died of heart disease.  Mom was petite, but she died of heart disease when she was 49.

I've had a sleep study and am on CPAP, which has helped my fatigue tons.  I have high blood pressure and all that wonderful insulin resistance stuff.  I was having some sort of arousal to my sleep about 40 times per hour during my study, don't remember if that's the AHI index or not--will check later at home.  I had mostly hypopneas, a couple of apneas, and one mixed central/obstructive one.  My MS specialist neurologist is also my sleep doctor, and he sees OSA or other sleep disorders in something around 50% of his MS patients.

[Steven Y Park, MD]

It sounds like you're OK from a breathing standpoint, but in some people, they can have major breathing issues that don't show up on a formal sleep study. This is a very technical explanation, but most people with UARS will have more than the usual spontaneous arousals, some of which are related to slight breathing pauses, but most of which are not.

One possible explanation that I heard from Dr. Guilleminault, a Stanford pioneer in sleep medicine and the person that originally described UARS is as follows: As your airway starts to narrow due to muscle relaxation, there are pressure sensors in your throat that picks up the fact that you're about to stop breathing. It sends a signal to your deep brain areas and your brain sends a signal to the rest of the body (and the tongue) to wake up to a lighter stage of sleep to prevent the tongue from collapsing. All this happens automatically, without you ever being aware, and without any evidence of brain wave activity on the scalp EEG leads since these signals never reach the outer brain areas.

There are other ways to determine UARS and the consequences of inefficient deep sleep, such as inspiratory flow limitation (IFL - seen as flattening of your nasal airflow tracings) and an abnormal CAP analysis (mathematical analysis of your brain waves to detect deep sleep instability. This is all fascinating information that I'm sure you'll see more about in a few years.

[essdipity]

I did have an overnight study in a hospital, and saw all the graphs, etc., it produced. That's why I know it confirmed that I don't have breathing problems.

ess

[Steven Y Park, MD]

Thanks for your suggestion.

Has anyone here on this forum undergone a sleep study, and if so, what was the result?

I'm not clear—did you undergo a formal sleep study or just undergo pulmonary testing in the office?

One possible reason for why you may not be able to get deep, restorative sleep is because in certain individuals with the anatomy that I described earlier, every time you go into deep sleep, because of muscle relaxation, you'll stop breathing temporarily and wake up to light sleep. You'll never know if you wake up at all. If these pauses last for more than 10 seconds, then it's called an apnea. But people with upper airway resistance syndrome can stop breathing 10-20 or more times every hour and will have no apneas on a sleep study. These are the "light" sleepers, prone to waking up with every sound, movement or pain in the body. Also, there is no typical sleep apnea or UARS patient.

[essdipity]

Why not ask the members here whether they've had a sleep study? I had one last spring, and followed up with a sleep specialist who is a pulmonologist. I even had to go through a half hour of breathing tests in her office. As I was virtutally sure, my sleep problems are not from sleep apnea or anything related to breathing. I just don't get anywhere enough deep and restorative sleep.

Many of our members, diagnosed and otherwise, do have sleep problems, and quite a few have had sleep studies. You might be interested in their experiences.

ess

[opie74]

Thank you for all of your time!  I have learned alot!

[sllowe]

Thank you so much for this!

So, you think you can get up some funding for a study? You've already got the participants! Count me in!

Thank you again, Dr.

-Shell