Sleep Study

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So, over all my POTS symptoms are pretty manageable right now. I still get tachycardias and feelings like I'm going to pass out, but they are usually restricted to mornings. I'm able to do most of the activities I enjoy, so long as I don't try to do them all in the same week or something.

But my fatigue is still overwhelming. I work part-time, and if I want to be able to do a minimum of household chores, socializing, and exercising, I can only work about 10 hours a week. If I work 20 hours a week I'm literally unable to do anything else - I just work my 20 hours and sleep the rest of the time; I can barely even wake up long enough to eat, let alone cook. I'm worried because I'm starting grad school in the fall - just part-time, but I'm genuinely worried my fatigue will keep me from being able to keep up with the work.

My doctor wants me to do a sleep study, to see if I have sleep apnea or something else that might be interfering with my REM sleep and making me so tired. But I'm really, really in dire straits financially right now (because I can only work 10 hours a week!), and I have a huge deductible on my health insurance -- so if I got the sleep study, I would have to pay for it out of pocket. Obviously I don't want to do this unless there's a good chance it might be helpful in some way.

For those of you who had sleep studies, did it help you find new ways to treat your fatigue? Or was it just more information that didn't really influence your course of treatment?

any advice is appreciated!

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[issie]

Sometimes they can do a sleep study at home if there are money issues. In my case, I did it in the sleep lab. I do have apenea. I think if I could get used to the CPAP it might help because at times my brain isn't getting enough oxygen in the night. But the machine is HARD to get used to. I think it causes me to have more issues in one sense, because it definitily affects my nerves and that causes your pulse to go up etc. I do feel better when I use it though. I've found that sometimes if I take a Bendyrl or something that will help me fall asleep, I do better. Recently the dr. told me to put it on and keep the light on with it on and read or watch tv so your body gets used to it before you try to go to sleep. That does help. I think there are allot of people with sleep issues and that could be causing tiredness. There are other sleep issues other than apenea. Talk to the Dr. about your money issues, maybe he can work out something for you.

[Christy_D]

My son did a sleep study, he has insomnia. They did discover he has restless leg syndrome, but wouldn't treat it with meds because they didn't know if it would interfere with his POTS. So, basically for us, it was just one more diagnosis to add to the list. (By the way, he didn't have insomnia the night he did the study-par for the course).

They wanted him to see a sleep psychologist to change his habits. This had no effect, they didn't understand anything about POTS and how he is sick daily and needs to lay down, etc....

Christy

[mkoven]

totally worth it. turns out i do have apnea and have been on cpap for 2 years. it has helped MANY issues. apnea not only makes you feel lousy, it is also really bad for your health. i am less tired, fewer headaches and general aches, fewer odd neuro symptoms, better rested.

[Guest humanb4monitor]

AS the person who has the worst sleep disorder in the world....in the world......IF you do not snore, are not awake a lot and walking around and not constantly dreaming like me, don't waste your time because if it ain't common, it won't show up. IF you feel poopy in the morning all the time, yes, something may be wrong. But if you wake ok and rested and the fatigue starts later, well you do have POTS and that's a symptom. My 1st move is always lab work if you can $$$

THYROID, Potassium, electrolytes and I do not knw how old you are but the FSH will show every single horomone count you have.

Sleep studies fantasize about fitting to everyone. For people here like the c-pap--that is GREAT. I wish it was that easy for me. I wish more than anything.

I am also taking in what people were saying on the adrenal site yesterday about glutton and carbs.

My fitness waning is my biggest loss ever. Ever.

[Guest tearose]

Well, I've done two studies. Both were nearly the same. I have hundreds of micro bursts of awakening that I am unaware of. It is contributing to non-restorative sleep. It makes it frustrating to see the results and know that there is no way to treat it. It is understood as my ANS firing up to elevate my bp while I am sleeping.

If you are found to have a treatable situation then it is worth it. Like with apnea you can use a cpap. If you are like me, just understanding why sleep in not restorative is validating and worth it.

good luck

tearose

[PotsMom]

I have hundreds of micro bursts of awakening that I am unaware of. It is contributing to non-restorative sleep. It makes it frustrating to see the results and know that there is no way to treat it. It is understood as my ANS firing up to elevate my bp while I am sleeping.

Tearose,

That is interesting - thanks for sharing. That makes sense - it's frustrating that nothing can be done about it but like you said it is validating nonetheless. Do you have insomnia as well as lack of restful sleep?

I would love to have a sleep study done for my son as getting to sleep and getting restful sleep are huge problems for him. However, we too are in a very high deductible situation so it is out of pocket. I feel it's going to be like everything else - may provide validating information but nowhere to go from there as far as treatment. So hard to know what to do.

My daughter takes Neurontin (gabapentin) for her restless legs and that has helped give her more restorative sleep. We tried it briefly with my son and it didn't seem to work for him.

[Dizzysillyak]

Well, I've done two studies. Both were nearly the same. I have hundreds of micro bursts of awakening that I am unaware of. It is contributing to non-restorative sleep. It makes it frustrating to see the results and know that there is no way to treat it. It is understood as my ANS firing up to elevate my bp while I am sleeping.

If you are found to have a treatable situation then it is worth it. Like with apnea you can use a cpap. If you are like me, just understanding why sleep in not restorative is validating and worth it.

good luck

tearose

Sorry to hear this .. I had a couple of ideas though but you may have already tried this. On another board I belong to there is a group of us that have to eat something late at night because our glucose levels drop too far when we're sleeping if we don't. Or at least that's what we think is happening. I'm not so sure that there isn't an adrenal connection to this now .. Protein and a small carb work best for me. If I don't do this I won't sleep through the nite.

Also, this may respond to theanine. I take theanine for nocturnal myoclonus, which is uncontrollable jerking when I enter REM. I'm sorry but I'm too tired to remember the details tonight ... But if you google theanine, you'll see how it works. I've been using it for a year now and it's still working for me. Klonopin is the traditional alternative for this but Klonopin is known to have some serious side effects down the road.

When I first started having nocturnal myoclonus I could sleep through it so I had no idea I was being awakened when I entered REM. No REM, no restorative sleep ... At some point, my jerking became so intense that I would clear the bed if it happened in my abdomen.

This could've been self diagnosed if I'd had a video camera though. Or even someone who saw me doing this in my sleep.

I was wondering sleep apnea or other sleep disorders could be self diagnosed. Those of us without a lot of money need to look at this ... There are some conditions that are common with sleep apnea ... maybe that would help ..

[Guest tearose]

PotsMom, no I don't have insomnia, if anything I am good for a nap nearly anytime.

Dizzysillyak, Interesting that sometimes I do snack before bed but I must be careful because I also tend towards occasional bouts of gastroparesis where I will not digest food and then wind up with acid and undigested food that forces up and I dislike throwing up at 3 in the morning.

I do tend towards warm milk or bread if I do snack and in small doses I manage well.

I take 1-2 little naps during the day as needed.

[Dizzysillyak]

Dizzysillyak, Interesting that sometimes I do snack before bed but I must be careful because I also tend towards occasional bouts of gastroparesis where I will not digest food and then wind up with acid and undigested food that forces up and I dislike throwing up at 3 in the morning.

I do tend towards warm milk or bread if I do snack and in small doses I manage well.

I take 1-2 little naps during the day as needed.

Napping during the day can be an indication of not sleeping well at night. I take mini naps too though. I have to lay down due to OI every few hours, but then once my body stops feeling so shakey, I'll fall asleep for a few minutes. How long are you sleeping for ?

Milk and bread would cause me to wake up during the night. I don't know if you have food intolerances but gluten and casein have been shown to create opiods in autistic kids as well as some adults. Um, like me ... There are countless stories about this though ... soy and corn affect a lot of people too. Docosborne at GFAB has some great info on this.

I had gastroparesis all the time until I went on this diet and started taking probiotics and digestive enzymes. Have you tried this ? I'd definitely start with the supplements though .. it's much easier and it helps a lot of people ...

I usually eat couple of bites of left over dinner (meat is a must) between 8 and 10 pm. 8 would be better but I tend to forget it .. It just hit me, I take Solgar essential aminos during the day and they help calm my appetite I wonder if they'd work for me at night too ...

[mkoven]

the thing is it's really impossible to know if you have something treatable like apnea without a sleep study. i thought there was no way i had it. and my husband never noticed it. i'm very grateful to have one health condition that is very treatable and does improve my quality of life. and only a sleep study could capture it. i don't look like the sterotypical apnea patient, which is what took so long for me to be diagnosed.