Questions About Sleep Studies

[bkweavers]

My teenage daughter is still having bad insomnia. For her, it's that she can't fall asleep. Once she does fall asleep, she sleeps fairly well. She's been on trazodone for about 6 weeks now and is now at the point where the dosage can't be increased. We've already tried melatonin and Benadryl which stopped working. I called the doctor again today and now she wants a sleep study for her. She's never had one in the 6 years of POTS.

I have a few questions for those of you who've had one done. What do they do during it? Is it considered outpatinet or in? Was it worth it to you? What do they find out from it?

I'm just not sure that I'm willing to spend the time and money on this especially since it may not show anything. I also want to get her thyroid checked again since insomnia can be a symptom of hyperthyroid. (She has congenital hypothyroidism.) She also is getting her wisdom teeth taken out next week so I don't want to schedule it yet and I'm hoping to do my homework on this before I decide.

Any other info you can provide would be helpful. Thanks!

Brenda

[SeattleRain]

What dosage of Melatonin was she taking? Most Melatonin supplements are really high - 3mg to 5mg.

"The researchers also discovered that the typical health food store dosage of melatonin, which is about three milligrams (or 10 times the dosage in the study), is less effective in treating insomnia. In addition, the higher dosage can cause potentially serious side effects, including hypothermia (low body temperature)."

The correct dosage would be 0.1 - 0.5mg with 0.3mg being the sweet spot in the clinical studies.

I myself have had trouble falling asleep for years so I can understand how frustrating it can be... I've thought about going to get a sleep study but am worried I'll just stay up all night and won't be able to fall asleep.

[issie]

Yes, some have issues with melatonin - and it can cause depression issues too. It is a suppressant. With some of the meds, some people have paradox reactions to them and they will do the opposite of what is supposed to happen.

I have sleep apnea and having the sleep study was beneficial to me. Because my O2 was dropping in the night and that can affect your heart and all kinds of things. I had many times where I stopped breathing too. They put some wires connected all over your body pretty much and have you "try" to go to sleep. They see what you do with a camera while trying to sleep. Monitor your heart rate and respiratory system to see how that goes. Then if it's found that you stop breathing in your sleep either with Central (in the brain) apnea or obstructive apnea - they put a machine called a CPAP on you with a mask to force air down your throat and keep it open and keep you breathing. Some of the machines have different settings on them to force breathing if that stops with a central problem. It is a good thing to check out and rule out with our issues.

Mine was considered out patient and I had it done --several times --at Mayo.

Issie

[seattle chris]

I have had three sleep studies. The facility where I had my last test was quite nice but it is hard for me to sleep soundly with all the equipment hooked up. The test captures a whole sort of data including sleep stages, apnea events, oximetry, heart rate and limb movements. They provided me some pretty good information and found that I stop breathing quite a few times during sleep (but fortunately my O2 levels didn't decline much). They gave me a CPAP machine but I have had difficulty using it due to the pressure I get in my head. At a minimum, I try and avoid sleeping on my back to prevent apnea episodes. I would recommend taking it if the cost is acceptable.

[SeattleRain]

I have had three sleep studies. The facility where I had my last test was quite nice but it is hard for me to sleep soundly with all the equipment hooked up. The test captures a whole sort of data including sleep stages, apnea events, oximetry, heart rate and limb movements. They provided me some pretty good information and found that I stop breathing quite a few times during sleep (but fortunately my O2 levels didn't decline much). They gave me a CPAP machine but I have had difficulty using it due to the pressure I get in my head. At a minimum, I try and avoid sleeping on my back to prevent apnea episodes. I would recommend taking it if the cost is acceptable.

How much did it cost, if you don't mind me asking? Is that something insurance would help cover (if you know)?

[issie]

I have had three sleep studies. The facility where I had my last test was quite nice but it is hard for me to sleep soundly with all the equipment hooked up. The test captures a whole sort of data including sleep stages, apnea events, oximetry, heart rate and limb movements. They provided me some pretty good information and found that I stop breathing quite a few times during sleep (but fortunately my O2 levels didn't decline much). They gave me a CPAP machine but I have had difficulty using it due to the pressure I get in my head. At a minimum, I try and avoid sleeping on my back to prevent apnea episodes. I would recommend taking it if the cost is acceptable.

Have you tried a different mask? I went with one that has nasal pillows and it doesn't seem to be as intense pressure as the other type mask. And I don't get claustrophobia as bad. I like it better. I have to sleep reclined with it too. I just prop a lot of pillows under me. I've tried not using it and it does make a difference with how I feel and my POTS.

Issie

[roxie]

I've had two sleep studies. They are very awkward but we found u have an extremely crazy heart rate at night. My heart consistently spikes over 190 & 200 but will also drop to 30 in a matter of seconds and then spike back up again. No wonder I'm so tired.

[looneymom]

So glad you posted this. My son is having the same problems and our neurologist is in the process with our insurance to get a sleep study done. My son has also been on transodone and has also been put amitriptyline for pain issues. He is able to fall asleep but does not stay asleep. He is in a differnt position in bed everytime I check up on him at night. By noon he has circles around his eyes. It is my understanding that insurance will normally pay for this procedure. I have been told that my son will be staying overnight and that more than one type of sleep study can be done to rule out other things.

[khaarina]

The problem with a sleep study for insomiacs is that if you don't sleep enough, you don't get any real answers and you've wasted your time and money. I slept a total of 3 hours during mine and all I found out was that I have trouble falling asleep (lol), I move a lot when I'm asleep, and I grind my teeth. I suggest first doing a throrough investigation on any health conditions she may have that could be causing the insomnia (you mentioned thyroid problems) as well as side effects of any medications she is taking. I suspect mine might be caused by my beta blocker or my thyroid/thyroid meds.

[blinkofani]

Honestly, I think sleep studies are the most ridiculous test ever for people who have sleep difficulties. My issue is not with falling asleep but staying asleep. They put the most disgusting goo in your hair and stick numerous wires to your head, face, chest, arms and legs. Your face is literally covered in tape and you also have a strap across your chest to measure breathing. I am shocked when people actually say they slept enough for any results to be valid. For me, not only was it the unbelievably frustrating attempting to fall asleep and stay asleep but I also had a screaming toddler next door to me. I will never ever agree to one again. It was a complete waste of time as I slept WORSE than I typically do at home.

[bkweavers]

Still confused if it's worth it for her! What some of you said about being unable to sleep while the study is going on was one of the reasons I wonder if it's worth it! When she first became sick, insomnia was one of her worst symptoms but that had improved up until last fall. She did have an increase in her thyroid medication last year and so I think we're going to look into that first before we go ahead with the sleep study.

This is sometimes the frustrating thing to me about doctors. They really don't know what to do so they just throw more tests at you. I've learned to do my research now before saying yes to everything.

Thanks for the info,

Brenda

[Katybug]

I think you should also know there are two types of sleep studies...nighttime and daytime. I have trouble falling asleep but am ok once I am asleep (now, when all this started 6 years ago I couldn't sleep at night for 2 hours straight.) It is weird to try to fall asleep with allthe stuff on you, but, it is worth it to try. They can tell quite a few things from the test. In addition to very mild sleep apnea, they also were able to report several spikes of tachycardia. But, my daytime study was even more revealing. I was diagnosed with severe daytime hypersomnia (a cousin to narcolepsy). It explained the sudden and overwhelming attacks of fatigue during the day where I would feel like I was literally going to collapse, not faint but collapse. The daytime study uses the same equipment but you stay awake for 2 hours and then lay down and try to take a nap. They give you up to 20 minutes to fall asleep. If you fall asleep, you are allowed to sleep for 15 minutes and then they wake you. They are looking for several things but the big things are how quickly you fall asleep and if you hit REM sleep during the 15 minute nap.

Here's something that I find interesting that I just recently came across by accident. I have never met one person in the "normal" non-POTS, non-EDS world with hypersomnia or narcolepsy. I realize that these people are out there but it doesn't seem like there are lots of people with this diagnosis. But, a few weeks ago, on the EDS forum, someone asked about narcolepsy and it became a very active thread with many respondents. The respondents either had one of these diagnosis or had a child or children with the diagnosis. I can't prove it scientifically, but, it seems strange to me that it's relatively hard to come across people with this diagnosis elsewhere but it is so easy to come across lots of people with it on the EDS forum. I just bring this up because many with EDS also have autonomic dysfunction of some sort.

I can't tell you what's right or wrong for your daughter but I can say that confirming empirically that I truly was having a physical, uncontrollable problem staying awake during the day helped me emotionally and helped me learn one thing I can do to help manage my overall health. It also made a couple of my doctors sit up and take more notice of my complaints as these tests were conducted shortly before my POTS dx. It gave me the courage to push my doctors. It also made me take a long hard look at a few things about my lifestyle. For example, I have censored myself since then to very limited driving, only close to home, and only if I feel really good that day. I also realized that I need to listen to my body about sleeping. When, I feel a little fatigued, I take a rest or a nap. This helps manage my situation overall because if I don't rest/nap when I first feel the need, and wait until that overwhelming feeling hits me, I usually end up in bed for days unable to recover and sleeping for about 20 hours out of the day.

[seattle chris]

I have had three sleep studies. The facility where I had my last test was quite nice but it is hard for me to sleep soundly with all the equipment hooked up. The test captures a whole sort of data including sleep stages, apnea events, oximetry, heart rate and limb movements. They provided me some pretty good information and found that I stop breathing quite a few times during sleep (but fortunately my O2 levels didn't decline much). They gave me a CPAP machine but I have had difficulty using it due to the pressure I get in my head. At a minimum, I try and avoid sleeping on my back to prevent apnea episodes. I would recommend taking it if the cost is acceptable.

Have you tried a different mask? I went with one that has nasal pillows and it doesn't seem to be as intense pressure as the other type mask. And I don't get claustrophobia as bad. I like it better. I have to sleep reclined with it too. I just prop a lot of pillows under me. I've tried not using it and it does make a difference with how I feel and my POTS.

Issie

I should probably give it another try as it will probably help my symptoms to some degree. I may try adjusting the flow strength first. I have the nasal pillows but I was getting cold sores.

[seattle chris]

I have had three sleep studies. The facility where I had my last test was quite nice but it is hard for me to sleep soundly with all the equipment hooked up. The test captures a whole sort of data including sleep stages, apnea events, oximetry, heart rate and limb movements. They provided me some pretty good information and found that I stop breathing quite a few times during sleep (but fortunately my O2 levels didn't decline much). They gave me a CPAP machine but I have had difficulty using it due to the pressure I get in my head. At a minimum, I try and avoid sleeping on my back to prevent apnea episodes. I would recommend taking it if the cost is acceptable.

How much did it cost, if you don't mind me asking? Is that something insurance would help cover (if you know)?

My test cost $386 out of pocket but the price will vary greatly based on insurance coverage and provider negotiated rates.

[issie]

I should probably give it another try as it will probably help my symptoms to some degree. I may try adjusting the flow strength first. I have the nasal pillows but I was getting cold sores.

The one I use is the Opus 360 - it has a swivel hose and you can put it up on top of your head with a strap and it doesn't hang down. I used to have it down - but, realized it stays out of the way better up and it makes it more comfortable - not being down around your mouth.

That was really cheap for a sleep study. Mine at Mayo was in the thousands.

Issie

[Batik]

I had a sleep study about eight years ago, and it was useless. All that sleep centre dealt with was sleep apnoea and narcolepsy. I had a circadian rhythm disturbance, Non-24 Sleep Wake Cycle (I was on 25 hour days), so problem #1 was that I wasn't falling asleep when they thought I should. They put me to bed at 9pm and got me up at 7am. This was not my normal sleeping pattern. They also failed to feed me, so between that and the sleep deprivation, I ended up collapsing on the floor at one point, whereupon they just stepped over me. Anyway, it sounds like the sleep study showed up problems with deep sleep, but the doctor completely ignored them and just wrote me a condescending letter telling me that I should make more effort to get over the insomnia. N24 isn't actually insomnia, and even if it had been, that's not a useful response.

If you think she may have sleep apnoea or narcolepsy, go for it. If it's looking like something else, have a chat with the sleep centre and see what they are likely to do. Mine didn't recognise circadian rhythm disorders at all, the sleep lab techs had never heard of them, and I wish I'd known that before waiting a year.

In terms of treatment, look up darkness therapy. This is about getting your body to produce its own melatonin. In my experience it works fantastically, whereas I found that taking melatonin tablets didn't do a thing for me. It's about light exposure. Blue light tells the body that it's morning time, encouraging serotonin production and suppressing melatonin production. This was fine when humans were living outdoors, but now we have artificial lighting, and computers, TVs and phones all produce an awful lot of blue light. Blocking the blue light, either by using orange light bulbs and computer screen filters or by wearing orange-tinted glasses, makes your body think it's in darkness, so that it starts producing its own melatonin. A couple of websites: personal blog, In Search of Mornings and Lowbluelights.com.

[dpeeps]

My neurologist wants to send me for a sleep study, but I haven't done it yet. My issue is staying asleep. I fall asleep just fine, but wake up between 2:00-3:00 AM, heart racing. Anyway, I heard somewhere that Magnesium helps with sleep. Not trying to push it here, just noticed that my insomnia is about 75% better since I started taking it. I have no idea if it will work for others, but I believe it has helped me greatly. I don't feel any different with any other symptoms - the Magnesium only seems to help with my insomia problem.

[looneymom]

My son just had a sleep study this last Friday. My husband and I are glad that it was done. Our son was able to get through the test but because of some problems noticed, he was hooked up with the mask. The technician told us he was borderline but could not give us details. She was monitoring him for several things and his legs were jerking during the test. We are hopeful that this test will give us more answers about his POTS condition.

[TCP]

I had the oxymetry test done and I have been referred to a sleep specialist and maybe a sleep study. I have multiple problems with sleep and various weird conditions and they are getting worse. I think coming off the Nortriptyline did me no favours at all as my sleep is more fragmented and the SA has got far worse. My gut muscles are in constant spasm and it's making me feel so ill and the neuropathy has worsened. Good luck everyone as I think this is awful!

Zzzzzzzzzzz.....

[Lethargic Smiles]

I take ambien most nights... It's not the best drug, but for now it helps get me much needed sleep.

[TCP]

Good luck everyone as I know sleep is so important to our wellbeing.

[Lethargic Smiles]

I don't think anyone has answered what they do during a sleep study, so I thought I'd share. I had it done before I was diagnosed as a measure to rule out sleep issues as what was going on. Although I didn't learn anything from it (except I HATE sleep studies), I think it is good to rule out sleep problems. If your daughter isn't getting adequate rest from sleeping for whatever reason, that could really stall the success of treatments she may try.

Please excuse my lack of medical terms. I don't know much about the terminology for sleep study tools. You arrive at night in jammies. I had asked for there to be a fan in the room since I always sleep with one. The room is sort of attempted to be set up to look like a normal bedroom and there is a camera in the corner so they can watch you and see how much you're moving and such. They put electrodes all over you, similar to an ekg. They put something (I can't remember if they is electrodes, I think they were) on your legs to measure movement. They use goopy stuff to put electrodes on your scalp to measure brain waves. The stuff comes out pretty easily the next day with a shower. Lastly, they put this little thing by your mouth (a little stick type thing) to measure air blown out through the mouth and something (oxygen mask nose attachment) in your nose to measure air blown out that way.

Then, they say do your thing and sleep. I read for about 30 minutes then tried to go to sleep. I woke up all night long, at least once an hour for most of the night. Most people I've talked to had trouble getting to sleep, but didn't wake up over and over like I did.