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sleep and POTS
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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sleep and POTS

Hi
Have a 10 year old daughter with probably POTS, definite autonomic instability with cardiac involvement, more recently increased chest pain as well as pulmonary issues.  She is really having more difficulty sleeping, lying awake for several hours each evening, anyone have any experience with this as well as the use of melatonin for it, really trying to minimize medication use but she is really getting fatigued.  Thanks
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875426_tn?1325532016
I don't know if this will help any, but I find if I go to bed later than a certain time frame, I can have a much more difficult time getting to sleep.  Has your daughter been going to be later than she used to?  Melatonin is something a doctor I used to have in another state said they really don't recommend on a long term basis but I've had different loved ones take it.  It can help as a sleep aid but used to give me headache so I didn't want to take it.  Valerian root is another over the counter sleep aid- they come in capsules at Walmart.  Is your daughter not getting enough exercise?  This can make a difference as to how you sleep as well, I think.  Of course, exercising in the evening or being on the computer late can be stimulating activities that can make it more difficult to fall asleep.  And a rapid heart rate can keep one awake, but if she's having that in bed, it's likely not POTS she has.

Since you say probably POTS, as well as her having chest pain & pulmonary involvement, I'd recommend a trip to the cardiologist and see if she couldn't get diagnostic heart testing and a tilt table test.  And also, getting her iron, ferritin and TIBC or total iron binding capacity levels tested as well, because low levels of iron in the blood can cause rapid heart rate which can lead to shortness of breath.
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Avatar_n_tn
Thanks for the suggestion, she is actually very athletic, nothing changed with bedtimes, but her symptoms have been changing over the last few months with the start of hormonal changes in puberty.  She has been diagnosed as probably having POTS by two different large Children's hospitals (Seattle and at Stanford), has been seeing multiple cardiologists since infancy and has quite a few autonomic nervous system symptoms, including instability in temperature, Raynaud type symptoms, tachycardia, hypotension, dramatic temperature instability (temp 106 when sick is not unusual) also has history of confusional migraines that have migrated to normal migraines and now some new pulmonary symptoms and visual changes.  She has been under the care of pediatric cardiologists since 4 months of age, they all concur that she definitely has autonomic nervouse system instabilities, they are both feeling like this is POTS but obviously it is not really common to be diagnosed in infancy and now we are trying to see what puberty will bring.  All that being said, she is extremely active and positive but really feeling sleep deprived in last couple of months.  Trying to find the least invasive way to help her feel as well as possible, she "just wants to be as normal as possible" in her own words
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Avatar_f_tn
My 15 year old son has extreme sleep issues with his dysautonomia.  He sometimes will go 36 hours without sleep and then sleep for 24 hours, or just a few hours of sleep,etc.  His sleep is very erratic.  His medication for his dysautonomia also has a sedation medicine in it, that at first it knocked him out but no longer helps.

As for the melatonin, he was taking that for a while, but I read on one of the websites that people with autonomic dysfunction should avoid melatonin. (It may have been on dinet.org, I'm not sure).  So, I can only confirm that he too has sleep issues, but they haven't been resolved yet.

Christy
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875426_tn?1325532016
Wow- 106 degrees!  I believe that's a risk for brain damage if it's sustained for long enough!  Have they ever MRI her hypothalmus (responsible for temperature control) and the pineal gland (internal alarm clock) to see if there were any cysts or tumors?  I just saw online that melatonin (natural of course) is produced by the pineal gland!!! I knew from nursing school days that it was the internal alarm clock.  A quick look at some side effects of melatonin tablets tells me it doesn't look like a good fit for someone with POTS.

A look up of valerian root reveals it can potentially cause low body temp.  In me, it has occasionally caused maybe a bit of headache and some loose stools.  It looks like it is best used for 4-6 weeks at recommended doses.  I haven't done that- I just used it occasionally.  Why not ask your doctor if it would be okay to take for your daughter & worth a try?

  So they've always said probable POTS but never confirmed that diagnosis with a tilt table test then?  It seems like that is the gold standard they have for diagnosing it.  And going through puberty at the young age of 10- has that prompted any endocrine testing to see if anything is amiss with any pituitary hormones?  Pituitary tumors (specially dedicated dynamic MRI w/and w/out contrast is used to find these), if large enough/certain location, can cause headache and visual change (particularly they look for peripheral vision problems)...has she ever had a field of vision test?  They say one in five people have a pituitary tumor.

  I have POTS and a pituitary tumor that may have messed up my periods royally, though it isn't large enough to cause visual changes in me (I do get visual disturbance at times w/migraines though).  I know I didn't always ovulate from a small amount of testing I had done prior to my hysterectomy.  I hope they check out her FSH, LH & estrogen, etc. since she has already started puberty!  Also, hyperthyroidism in children and adolescents can cause rapid pulse and insomnia- have they ruled that out as an issue with a check of TSH, free T 4 and possibly free T 3?

It's good that your daughter still has a positive attitude and desires to be as normal as possible- sounds like a very mature thing to say!
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Avatar_n_tn
She has had a tilt table, has had multiple MRI's, CT's, cardiac testing galore including stress tests, echos, full endocrine work ups, full neurology work ups, she has a lot of things going on but they still think she has POTS plus a few other bonus diagnoses probably, sibling also has significant tachycardia and autonomic instability as well but hasn't required as much medical intervention so we are still holding and watching things tease out at this point.  She has a cardiopulmonary stress test scheduled in a couple of weeks and opthalmology tomorrow to further assess the visual changes and other new sx.  I am kind of at a point that we have been dealing with this for so many years and so many different evolving symptoms that we are just trying to focus on things with her that we can actually offer relief and help her feel more comfortable and also be able to cope with this...  She is 10 with a more mature attitude than most adults for sure... Thanks for the support, will ask about a couple of your suggestions.  have a great day!
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1267372_tn?1317834880
Wow.. my 9yr old was just diagnosed with an autonimic dysfunction (though we still have to have EKG, ECHO, and tilt table test to determine which one)...it's likely post viral (she had mono in December).  Her symptoms started with tummy pain (like a bug) and have worsened to add headaches, dizziness, leg & foot pain (to the point where she is only walking on her toes for part of the day, then has to be carried or she scoots on her butt or a skateboard), feeling of being electrocuted or burned in her hands, feet, and chin, sometimes all over), tachycardic and her heart "hurts", can't concentrate, eyes blurry, hands & feet turn bright red /purple and are freezing though she says they are burning.  She wants to do her normal things but can't.  She was an A/B student, gymnast, dancer...can't do anything now. She also has a hard time sleeping.
They just put her on gabapentin.
I can't imagine having these symptoms as long as your daughter.  Can yo tell me what to expect and if you find anything for sleep I'd love to hear it!
Theresa
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Avatar_f_tn
I've dealt with some of the issues your daughter has, and I can understand what you mean by focusing on the symptoms you can do something about.  Sleep is a huge issue for me.  I have used melatonin in the past.  If I take too much (more than the smallest recommended dose) then I can't sleep at all.  I also can't sleep if I take nyquil or most pain medications, as well as some other prescriptions.  If I am having pain in my chest or an irregular heartbeat, then sleep is even harder. It's not uncommon for me to only sleep 2 hours a night for several nights in a row.  I occassionally use ambien, though I try to limit how often I use it.  Usually it's every third night if I haven't been sleeping much.  If I can sleep one night in three then I can function a lot better.  I also tried a supplement called Tang Kuei, and that seems to help calm my body down a little bit so I can fall asleep a little easier.  I don't know how your daughter's symptoms are, but mine seem to fluctuate a lot, so sometimes I will go a few weeks where sleep seems impossible, and then it will change to where I seem to need to sleep all the time, and then it changes again to where I sleep fairly normal.  Hopefully your daughter doens't stay in this mode for very long, but in the meantime I hope you can find something to help.
Heidi
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1272082_tn?1343107140
I've found that Lemon Balm (or Melissa) helps.  It relaxes you and helps you turn your mind off.  I find that since a smaller amount is better-- the tinture is better, for me, because where most people would be able to take one capsule; that's too much for me.  So one dropper full in a tea at night before bed --is helpful for me.
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Avatar_f_tn
I have POTS and have the worst time with sleep. Sometimes I will be up for all night and other times I will go to bed at 9pm. I wish I could tell you how to fix this problem, but I really don't know. However, I have some advice on how to handle it. I find that I go through periods that I just can't sleep for very long so I will sleep and then take a nap later (example: 7hrs sleep, 1 hours nap). A lot of sleep doctors say you should not do naps, but POTS patients are weird. Another drastic option is to shift the day to her sleep schedule. This should only be done as a last resort, but it is something I did for awhile - and may be easier to do now that summer is coming. For awhile I went to bed very late (6am) and then woke up in the afternoon to do schoolwork from home. This might be a bit more complicated since your daughter is so young and you would need someone to watch her, but it may be a good last resort.
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612876_tn?1355518095
I can't believe I'm saying this, but all you restless POTSies are sort of making me ... grateful? ... for my comorbid narcolepsy, LOL.  

It's often nearly impossible for me to sort out my narcolepsy stuff from the dysauto enough to talk sleep with you folks, but I think there is one thing that I've noticed irrespective of my narcolepsy symptoms/treatment that might help others on here (and I've heard echoed now and then from other people with dysauto).  After a while of being sick, I gave in and just shifted my sleep/wake schedule to fit when my peak times were for feeling most alert and least symptomatic and when my body seemed to "want" to be awake/asleep.  Serendipitously, my SO switched to second shift, so it works well for us because we're basically on the same schedule now as a household.  I go to bed by 2 AM and wake around 10:45 AM.  My meals are likewise delayed:  bfast between 11 and noon, lunch between 5:30 and 6:30, and dinner between 10 and midnight.  My sleep improved as did my symptoms when I let myself move to this later schedule; days when I have to be up early for a doc appointment etc. are rough.
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Avatar_f_tn
Good point about sleep cycles. I function much better on a schedule similar to yours.  Unfortunately, I can't do it now b/c of my kids.  
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Avatar_f_tn
Yeah, I have to add my son to this too. His sleep cycle completely reversed as soon as we gave up trying to stay in school; staying on a "normal" schedule. He's 14, has autonomic dysfunction, severe orthostatic intolerance, secondary adrenal insufficiency and hypopituitarism. I think he must have had high nighttime cortisol levels since early childhood; almost always had a difficult time falling asleep before 1 or 2 am. Adrenal insufficiency and hypopituitarism eventually made it impossible for him to get up for school at age 11, and he was just too sick.

He cycles in and out of "perfect" sleep hours now; one week going to bed around 6 am, up at 2 pm, slowly reversing so that the next week he's in bed by 10 pm and up around 6 am! But then he's terrible about getting to bed if there's something interesting on the internet keeping him up, and then his "fixed" sleep cycle is trashed again.

I am happy though that at least he does seem to sleep well, usually for 8 hours, when he finally does get to sleep. I am watching his eating habits more closely now, trying to keep him from eating chocolate and other "stimulating" foods in the evenings.

Seattlemommy, you might try having your daughter sleep on a lavender pillow, and use other forms of lavender to help induce relaxation. I read online about a year ago that while lavender helps women fall asleep, it should not be used with men; some had a negative hormonal reaction. This suggests a beneficial hormonal effect for women. I didn't read further, since it is my son that has a sleep problem, but it might be worth looking into. (I think lavender is an estrogen booster in men?) Sage is very estrogenic and has been used as a sleep aid for women also, I believe. My son had a bad reaction to sage in sausage. We know to stay away from estrogenic foods as much as possible now!
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