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friday7
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I was wondering if anyone has taken anything that has improved to only your ability to fall asleep but your ability to stay asleep. Or the quality of your sleep. From what I hear a lot of these problems we have can be due to lack of REM sleep. I had two sleep studies done and in both I hardly got and REM sleep. I had hoped a sleep specialist would be of help but they really only were looking for sleep apnea. Is there nothing you can do to improve your REM sleep?

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Ashwagandha has helped some. I have to break a tablet into 1/4 because I'm so sensitive to things. Also Lemon Balm helps some. You can get a tincture and make a tea with it. It's a real problem and all of us are looking for an answer to this one.

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Guest tearose

I hear you! I am also a graduate of two sleep studies with documented non restorative sleep. That, plus getting up to pee...well I understand your frustration.

So, once you do all the things you know to do like a soothing drink, a restful pre sleep phase and meditation, the only way I function better is now I allow myself to nap when I need to during the day. It may be anywhere from 10-45 minutes and it helps me feel refreshed and ready to go on with the day.

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Our son Mason's has really struggled with sleep since being diagnosed. Most days, he would be up to 2-3 in the AM then only sleep to 8:00-8:30 every day. It was taking a very heavy toll on him and my wife.

Our Dr recommended that we try Melatonin tablets at night.

They have been a blessing for us and the only thing that has worked in his treatment so far. He takes one tab each night and is asleep within an hour of taking it. He sleeps most of the night through other than getting up to go to the bathroom from all the fluid intake.

This has him on a somewhat normal schedule of bed between 10-11 and getting up around 7:00.

I understand that Melatonin is not for everyone, but in our case it has helped tremendously!

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I used to have lots of trouble falling asleep and feeling wired, only to wake at around 3:30 every AM with falling BP/a terrible sense of malaise/diarrhea/tachycardia/shortness of breath (I think now these were the MCAD anaphylactoid episodes). This went on for so long I thought I was going to go nuts from lack of sleep.

I got immediate and significant improvement after starting doxepin 20 mg before bed. I still have some episodes of insomnia, but nothing like before.

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My son was also prescribed Doxepin, but 20 mg didn't help. He now takes 50mg, plus melatonin and he is out like a light. When we adjusted his meds this month we went down on the doxepin and he was again up all night. So for him, 50mg (at one point he was on 175 mg for his POTS issues) takes care of the sleep issue.

Christy

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It seems like most of have this struggle - but with everything else we're on sleep meds are just one more unwelcome Rx. I've had unrestful sleep for about 7 yrs now (way before any dx) - so you could say it was one of the major signals my body was trying to send me that something was wrong.

I've tried a number of Rxs that didn't help. Hydroxyzine did help, but like Mason's Dad & Lenna - I've been on 6mg melatonin for the last year per my pots specialist, who said it's pretty benign (albeit clearly not for everyone here). They have me take 3mg around 7:30p and 3mg when I go to sleep. I fall asleep faster but still feel like I wake up 5x/night. Wake feeling totally unrested. Grrrr :(

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Is Mason getting restful sleep? My son takes 6 mg. of Melatonin at night and it definitely does help him sleep, but he never wakes up feeling rested.

Mason sleeps much better. Before Melatonin, he was up every 30-60 minutes. Now he sleeps several hours and may only wake once or twice during the night to go to the bathroom.

Restful? I'm not sure as he still feels awful every morning upon waking, but on the surface he is sleeping more which has to be a good thing.

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