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Palpitations & Inverted Sleep?


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DS15 still cannot fall asleep at night until 7-9am and then he can sleep all day.

 

He told me that his heart starts racing whenever he tries falling asleep.

 

Any advice??

 

He no longer self harms and is generally better than earlier this week.

 

I tried the Lempn Balm, but he didn't take it ("it looks weird").

 

Thanks in advance,

T.Anna

DS15

 

Edited to add: That it wouldn't be horrible if he didn't wake me at 4:30am each morning to sit with him and calm him to go to sleep (this used to work). Now I sit there and fall asleep and have him wake me again because he's anxious or just "hang with him" until I need to wake everyone for school.

Edited by T.Anna
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My son (10) has been complaining of shortness of breath and heart palitations too. His sleep has been off since this horrible monster has entered his life. He usually falls asleep every afternoon and says he wakes up often during night.

 

I know they say sleep disturbance is a symptom but are the other things just anxiety?

 

It is so hard sometimes trying to help them :(

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Wow, definitely sounds like his clocks are backwards. Could it be "delayed sleep phase syndrome"? Hormones regulate a lot of when we wake and sleep though I think this pandas mess screws that all up. Melatonin certainly has helped with my sleep wake but I think the treatment for the above mentioned DSPS is different. They work on getting the patient to go to bed an hour earlier each night for a month, over and over, till a reasonable time is reached.

 

Does he have phobias associated with sleep? Scared of the night? I developed psychophysiological insomnia and had to see and still see a psychologist that understands it and tries to help.

 

Beta blockers are really helpful for anxiety heart problems and sleep though can be rather tiring (I'm doing okay now with it).

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Vitamin D also helps regulate sleep, so the next time you do a blood draw, check D levels (D3). This doctor feels D deficiency is a major component of many sleep issues

I think I recall you supplement with D2 but I'm not sure why. I'd always read you need to use D3 in the neighborhood of 1000-5000 IUs depending on your starting levels and time of year.

 

 

also do some googling on magnesium and heart palpitations http://www.livestrong.com/article/445452-lack-of-magnesium-and-heart-palpitations-chest-tightness/

My family takes magnesium at bedtime to help with relaxation (as well as to keep bowels moving).

 

I think a few weeks back when QueenMother and I were pretending we were backseat doctors, these came on the radar but I lost track of where you're at with them.

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He seems much better tonight and eating proper food. He hasn't been to the bathroom since Tuesday so he may be building up to go tonight (he tends to eat more before he goes). I stopped giving him the magnesium around the time of NAC, don't remember why. I will try it again.

 

OT: but just in case I was getting bored, my daughter came home with lice this week...ughh! So we've been busy, DS is happy that they don't like dirty hair.

 

LLM, his Vitamin D is extremely low, we are supplementing with a prescription vitamin D at 50,000, once a week. He's happy because the pill looks like the ones in the movie The Matrix.

 

Thanks as always,

T.Anna

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Wow, you poor thing! Lice too - they used to be my greatest fear before we discovered bartonella. Now I would gladly exchange the bart for lice. Not sure what I would do with both!

 

Before treatment DD had definate trouble sleeping and often complained of palpitations and racing heart. Both of these symptoms resolved after a couple of months of biaxin/rifampin. We also used low dose melatonin with her, just to get her to sleep. We have weaned from that now. She takes about 300 mg magnesium taurate per day. Hang in there.

Edited by rowingmom
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T Anna,

 

When you did your whole slew of tests with Dr. T, did he include thyroid tests as well (TSH, free T3, free T4, reverse T3)? If he did, would you be willing to either post them or PM me the results? Thyroid issues can cause sleep problems, and a neurologist recently confirmed that they can sometimes cause OCD as well. You can be within the normal ranges, but if the ratios are off among the different tests, you can still have a problem.

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LLM, his Vitamin D is extremely low, we are supplementing with a prescription vitamin D at 50,000, once a week. He's happy because the pill looks like the ones in the movie The Matrix.

 

 

Can you help me understand the logic behind once a week supplement? To me, it makes a lot more sense to supplement 5,000 IUs once a day every day. Vitamin D will be processed by the liver and stored in body fat, which will be released as needed. But it always seems better to do a lower/slower approach.

 

From the NIH, which granted is a very conservative source for info: http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/

 

Long-term intakes above the UL increase the risk of adverse health effects [1] (Table 4). Most reports suggest a toxicity threshold for vitamin D of 10,000 to 40,000 IU/day and serum 25(OH)D levels of 500–600 nmol/L (200–240 ng/mL). While symptoms of toxicity are unlikely at daily intakes below 10,000 IU/day, the FNB pointed to emerging science from national survey data, observational studies, and clinical trials suggesting that even lower vitamin D intakes and serum 25(OH)D levels might have adverse health effects over time. The FNB concluded that serum 25(OH)D levels above approximately 125–150 nmol/L (50–60 ng/mL) should be avoided, as even lower serum levels (approximately 75–120 nmol/L or 30–48 ng/mL) are associated with increases in all-cause mortality, greater risk of cancer at some sites like the pancreas, greater risk of cardiovascular events, and more falls and fractures among the elderly. The FNB committee cited research which found that vitamin D intakes of 5,000 IU/day achieved serum 25(OH)D concentrations between 100–150 nmol/L (40–60 ng/mL), but no greater. Applying an uncertainty factor of 20% to this intake value gave a UL of 4,000 IU which the FNB applied to children aged 9 and older, with corresponding lower amounts for younger children.

 

I hate to always sound like I'm contradicting your doctor(s). I have no medical training. I don't know your son's entire background or health profile. But in bteween lice treatments, you may want to do some goggling and reconsider big bang vs. steady drip approach. I doubt your DS has D toxicity, given his extremely low starting point, but bear in mind "The first sign of vitamin D toxicity is an increase in the level of calcium in your blood and urine. MayoClinic.com states that this excess blood calcium can cause the following symptoms: "Nausea, vomiting, poor appetite, constipation, weakness, confusion, heart rhythm abnormalities, and kidney stones." These are severe consequences and you should not risk them by experimenting with megadoses of vitamin D3 supplements." http://www.livestrong.com/article/463745-how-much-vitamin-d3-supplement-can-the-body-absorb-at-one-time/

 

FWIW, in the winter, I supplement my kids with 1 D3 pill @ 2000 IUs plus 1 D3+ Vitamin K2 pill (1000 IUs of D + 45mcg K) daily. In the summer, I only use the D+K pill daily for DD and none for DS because they're out in the sun so much (DS tans darkly and has no issues with his VDR gene, so needs less supplementing) Their D levels are checked a few times/yr.

 

I know your son is in bad shape and needs more intervention but I still advocate lower/more often. And I would definitely add the magnesium back. Based on QueenMother's advice, I'm switching from a Mag glycinate (b/c glycinate can increase glutamate) to a Mag Citrate.

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LLM, I really appreciate your information. DS was on D3, but the numbers were creeping up but still super low. DS doesn't go outside and is mostly sleeping during daylight, So even his brief excursions on the balcony don't help. Dr.T gave me the suggestion about the 1/week for 8 weeks and we discussed the risk of toxicity. It seemed worth a shot, since we can monitor with more frequent blood tests.

 

DS has had an issue with night/day reversal for a long time. It has just gotten worse...he used to fall asleep at 4 and now he can't until 6 or even 8am. And now, it finally bothers him that he cannot fall asleep. It might also be that now he has more energy and is a bit stir-crazy (although too OCD to go outside or shower/change).

 

As for constipation, it is completely how he controls his body. It's the only place he still needs to fight the OCD (everywhere else he just avoids it), so he puts it off until certain days...and then spends a minimum of 3 hours there with 2 boxes of Kleenex.

 

We drew blood on Thursday so I hope to have the vitamin d levels as well as thyroid and everything else.

 

This week has been a far cry from last week at least. We didn't have head banging and since Tuesday night, no crying or rages. Maybe that corner is getting closer (almost off the Luvox too, just down to 50mg and then 25 mg on Monday for a few days).

 

Thanks again, I always enjoy re-thinking our treatment. And often brings these up as my "suggestions" to the doctor.

 

 

Thanks as always,

T.Anna

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Also as far as vitamin D3, I've heard it's better to get it in liquid form and absorb it on the tongue. That's what I do anyways as suggested by an old CFS specialist b/c the pill form wasn't helping at all - sunshine always good.

 

Many sleep specialists say to stop looking at screens (computer and tv) by a certain time at night b/c they stop the production of melatonin. Also in the morning upon awakening it is best to get sunlight as that helps stop melatonin (at the right time) and kicks in cortisol and other good morning hormones.

 

I use a special pair of goggles when looking at screens at night that keep the melatonin going supposedly, sure you could google insomnia goggles - again recommended in "no more sleepless nights" popular book.

Edited by Guest
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