I am back. New question I need to ask.

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On November 16th I have a sleep study. To say that I have anxiety about this would be like saying I am going to go bungy jumping for the first time. (Fact, I am afraid of heights.)

I have to be there early and the evaluation is 10+ hours so I need to have stuff with me for bed. I am thinking about getting something different than what I normally wear as they are going to give me something to help me sleep.

Not so much worried about some parts of the test but the actual sleeping is going to be weird.

 

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Yep, it’s weird trying to sleep with 30 electrodes attached to your scalp with gel glue goop and at least 10 on your chest. I have to get up to pee at least four times a night and I found it very alarming that I had to call the nurse on hand to come unplug all the electrodes just so I could go pee. I have several doctors who want another sleep study but I refuse. I’m not going through that weirdness again. But I think you should try it once. Most people don’t have to get up as much as I do and they sleep just fine. What are they trying to determine with a sleep study? Sleep apnea?

 

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@snow

Sleep apnea and a few other things. I know how hard I have it just sleeping in the hospital as it is but that is why they set up to give me something to help me sleep.

They also do not want me to have any coffee on the day off. Ugh. Going to have to wind myself down on it so I do not get a headache from not having any.

I have a way of not having to worry about my ostomy already if everything works the way I hope it should. Then, all I have to worry about is my bladder and I am used to but I have to take all the extra stuff I need with me so I can clean up in the morning because the test is from 8pm-6am. That is less time than I am normally in bed for so that will be the big thing. They what to check how long it takes me to get to sleep, and how long I stay asleep. Then they will send me of another test that will map my brain activity.

Also, I have to watch what I eat so that it does not affect me.

 

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Hey @ThatFLGuy;

For Sleep Studies - do you think they can get results and information on bladder spasms? I know for some patients they will do a "double nighter" where they monitor the first night - then will also monitor throughout the day as well as a second night so that they can get results not just for sleep - but for daytime issues as well.

I've never had a sleep study but would find the latter imperative to show my excessive bladder spasms as well as showing the worsening symptoms of pain and excessive urge/urination while resting and laying down - but could also get results as to why I am experiencing pain during the day as well when awake.

I haven't gone back to the urologists as I have been managing symptoms and due to life issues - I just went with there recommendations of wearing continence products. Since then, and being on these message boards - I don't feel alone.

For a sleep study I would just professionally say you require special underwear or briefs to wear at night; and that will assist you in not being a disturbance to the study itself.

Blessings In Christ,
Honeeecombs

 

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I had my first sleep study around 1995. I had suddenly developed Restless Legs Syndrome (RLS) and waking up gasping for air. A quick search of these symptoms on the Web told me what the diagnosis would be: "Obstructive Sleep Apnea" (OAB). I also had started having the first signs of OAB. (No bed wetting though.) I was already taking Ambien to get to sleep.

I had to have the technician unplug me to go to the bathroom, then try to get back to sleep only once.

Since then, I have been using CPAP machines and masks any time I want to sleep.

I suggest that you look up RLS.org for advice on meds and treatment for RLS. They are an organization that gives a voice to those of us with RLS and sleep problems.

You can find some great channels on YouTube for CPAP equipment. If it comes to that, I can tell you that you will have a whole new set of problems to solve. Everyone must figure out solutions for themselves. Nowadays the equipment is much better than when I started. Be sure to insist on a heated humidifier and heated tubing.

 

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@Honeeecombs You’re right about the multiple kinds of studies. The fist one I did lasted 12 hours. The dumb hospital didn’t have any food for those of us having sleep studies because it was considered “outpatient” - I think when you sleep overnight in the hospital it’s damn well inpatient and you deserve dinner and breakfast! So @ThatFLGuy if they tell you to bring food, they mean it - you likely won’t get any from them.

Now the type of sleep study they want done on me is 24 to 48 hours to see if I have microsleeps in the day when I don’t sleep at night. I know I do. I fall asleep at my desk when I’m working sometimes. I have to pull over and take naps in the car. I’ve had to take naps in the women’s restroom stalls. I don’t need a sleep study to tell me this! My brain neurologist thinks I have narcolepsy. I don’t know what I have other than brutal, chronic insomnia, I just know I’ve barely been able to sleep my entire life and the ensuing fatigue is getting harder to endure as I age older and have chronic pain: now I *really* need to sleep, to heal my aching, rotting bones.

I had an appointment to go for the longer sleep study, and I had so much anxiety about having to ask someone to unplug me to get up and go pee in the middle of the night that I just decided it’s a preposterous study. Like why can’t my doctor just decide - based on my reporting - that I have narcolepsy and prescribe me the proper medication for narcolepsy? Why can’t he just *believe me* that my sleep sucks? The medication for narcolepsy is nasty; it tastes like seawater and semen mixed together. You have to take it twice in the night. It’s not some fun drug that anybody would desire to chase after. If he can’t believe me then I don’t need to go into the anxiety-inducing environment of a sleep study just to please him. The electrodes they use seem so unadvanced, like it’s 1950 or something. It makes me angry that they don’t have a better way to measure sleep. They should be able to measure it with a watch or something. My insurance company doesn’t require that sleep study to get narcolepsy sleep meds, so why does my brain neurologist? Why can’t he just trust me? One day I may try a different neurologist. My neurologist is a jerk anyway; he always harps on me about which medications I take that he doesn’t approve of that my psychiatrist has prescribed to me. I keep telling him, “If I don’t take Ambien to sleep, then I don’t get any sleep, which severely aggravates my depression, and I’ll kill myself. I don’t care if Ambien gives me dementia later in life, because I’m not going to reach “later in life“ if I don’t get some effing sleep. So I’m going to take Ambien.”

Anyway, see, look how worked up I’m getting about sleep when thinking or talking about it. It’s because sleep is such a sensitive topic for me because it’s been a lifetime battle for me that began at age four.

And then I fell off a cliff and now I get to be incontinent at night for the rest of my life on top of it, creating even more sleep disruption and even less sleep!!!!!!!!!

But @ThatFLGuy I think you sleep better than I do, so don’t worry about the study, just take your favorite protection and try it. You can always leave the study if you don’t like it.

 

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@MezaJarJarBinks My dad says the same thing about the heated parts.

The reason I had my first sleep study was to see if I have sleep apnea; I didn’t. But that was eight years ago, so I may have it now; runs on both sides of my family. I don’t want to wear one of those devices because it’s yet another thing that would make me even less datable should I decide to try dating again. Also, if I don’t crumple my hair, I can go a few days without washing it. The elastics of a CPAP device would require that I wash my hair daily because of the bizarre kinks it would leave.

 

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I suggest that you look up RLS.org for advice on meds and treatment for RLS. They are an organization that gives a voice to those of us with RLS and sleep problems.

To Original Poster @ThatFLGuy; I am assuming based on your post comment that @MezaJarJarBink's post was not directed towards yourself.

I wanted to take the applicable time to respond on my own behalf because I feel the RLS comment he/she may have remembered based on my extreme leg pain at my Hospital Stay.

An experience that was to say the least - was a horrible experience. I ended up testing positive for Coronavirus post that stay and was discharged prior to my test. It was the fault of the Healthcare system that put my family at risk of being exposed.

Anyway, no leg pain! My legs have felt great since I got over what is known as a "COVID Cold" - even though it was far worse than a cold for my leg pain and dehydration.

No RLS here - I'm not sure if @ThatFLGuy has expressed leg pain or if you are diagnosing based on common symptoms however my pain which causes severe bladder spasms is located between the naval and pelvic floor; inwards where the first urinary schincter would be located.

Thank you for the resources - they may come in handy for those researching into symptoms of OAB.

Blessings In Christ,
Honeeecombs

 

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My first sleep study was '03, for sleep APNEA. Lost track, but about 8+? Only one place was bad, the rest were decent to very good. Medicare wants them every so often. 3 years? They claim it is to make sure you haven't been cheating. Medicare can drop you if you don't follow the rules, which saves them money. Well, the newer machines not only record every night, they transmit it (blue-tooth) to the Doc. The prescription can change, so that's what you might need.
You, my FL friend, are a complicated kinda guy and I bet you'll handle it better than most, too.
Never heard of more than 8 hours a sleep-study, so that must have changed or they might discover it when reading your machine. Some APNEA is intermittent, I heard.
That one bad Sleep Study place? When I was supposed to have the next one, I told the Doc "no way I'd ever go there again". Told her why (politely). She said: they changed everything, rooms and people. Most like it now. She was right, so I guess enough people must have complained. I did; that's me, old motor-mouth. I was actually polite, too!
Tell whomever that you have incontinence. They've heard of it. They've seen it.
Yeah, having to be unplugged (they just unplug, not have to take off) to pee is not the most fun you'll ever have, but these are Medical Personal. They see one whole hell of a lot of bodies, in lot of conditions. They don't stand over you. Well, the ICU can be an exception. You get used to it, there - if you're conscious.
They are very neutral. It's a job requirement. The Charge Nurse keeps track. The docs keep track. The Head Nurse keeps track. They read the patient comments.
APNEA is dangerous to you and anyone you encounter. Driving a car comes to mind. Your health.
I don't have enough hair left to worry about, anymore, but it must be vexing; see the prior sentence.
And, wow! The difference that first day after that first good night's sleep in years!
Hang in there. Go with the flow. Braze it out. Just grumble away to yourself.

 

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@AlasSouth

It is set from 8pm-6am but they also know that I have an ostomy so I have to get up when I need to. The biggest thing for me is finding reasons why I am so tired all the time.

On Thursday I see nutrition again and I am going to have to let them know how bad things are going because some of the stuff on the easy-to-digest list does not break down so I feel like I am only getting just a bit from the food I am eating.

That is part of why I think the study is longer. But the reality is that it will likely take a bit of time to get everything set up so it might not be.

 

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@AlasSouth My father had the same experience when he got his first CPAP; he finally slept great. He completely quit snoring. He had been scaring people when he fell asleep and stopped breathing on airplanes. He had a car crash from being so tired. He owned his own architecture company so he was legitimately very busy and very exhausted, but still he really benefited from the CPAP. I agree that people should be evaluated for sleep apnea if there’s any chance that’s what’s going on. I agree that it can literally save your life.

@ThatFLGuy My sleep study went from 8:00 p.m. to 8:00 a.m. and it was a standard apnea test done eight years ago. The one they want me to have done for narcolepsy is a 24 hour test. The sleeping room was really amazing, like really soundproofed so no sound would disrupt my sleep, and it had one of those beds that inflates and deflates to whatever amount of pressure you want. I actually slept unusually great when I was there, except for waking up to pee all the time. If you’re still sleeping when your test ends, they’ll let you sleep in a little bit. One thing to prepare yourself for is that there are multiple cameras in the room and they will be literally watching you sleep to see if you’re tossing and turning.

It really just sounds to me like you’re not getting proper nutrition which would completely explain your exhaustion. I think it’s actually very simple. I don’t think that there will be anything wrong with your sleep study. But yes, you have to jump through hoops for insurance like AlasSouth said. If you do have sleep apnea and get a CPAP machine, I think you’ll wish you did it sooner. The only negative thing I think I know about CPAPs is that my dad’s machine exhaled cold air onto my mother which she didn’t appreciate. Also, the machines are loud: not great for a partner. But they will make you sleep great and they give you a lot of extra oxygen, which is sort of like being high, like that feeling you get on and airplane in a pressurized cabin.

When my dad had to start peeing in the urinal multiple times per night and it woke my mom up, the reason she had to move to a different bedroom was so she could actually get some sleep without being woken up by him and the noises he makes when he gets up. She’s 73 and works full-time as an LCSW therapist. She takes care of my handicapped father and their house and yard, with zero help from him. She needs her sleep! I respect her for maintaining her personal health. I wish my old bedroom wasn’t occupied, however, lol. There are many studies that say married people sleep better in separate beds anyway and that it’s better for a marriage because both people are sleeping better and in a better mood. Personally, when I have a boyfriend or when I was married, I like to share the same bed. But if I fell in love with someone who snored or used a CPAP machine, we would have to sleep in different rooms because I barely sleep as it is.

 

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@ThatFLGuy Ive never had a sleep study done, so I cant comment, but I hope that it goes well.