Help On Sleep

[spaceorca]

My son, who has POTS as part of a more general autoimmune autonomic neuropathy, is having more and more trouble sleeping. He's tried various sleep meds (ambien, sonata) and other techniques (regular schedule, sleeping partly propped up) but it's getting harder and harder for him to sleep. It seems like his sleep mechanism just doesn't work! Even when he's exhausted, he can't sleep.

I think this is common with POTS. Does anyone have suggestions for other approaches or meds for him to take? He's had a full sleep work-up and doesn't suffer from sleep apnea. The sleep doctor has tried him on the ambien and sonata but those each worked only for short periods. We see his neurologist tomorrow and internist on Wednesday so I'm trying to gather ideas to ask them about--or for us just to try.

Thanks--I always appreciate the advice and support on this forum! Debby

[Christy_D]

My son also has major sleep issues with his POTS. He was also diagnosed with Restless Leg Syndrome during his sleep study. He currently takes Doxepin. It stopped working for him, too, so we are upping his dosage. His dosage was pretty small for his height and weight. He started weaning up to the new dosage Saturday and it seems to be working. Once he has been on it for awhile, I'm sure it will become ineffective again, but hopefully not.

[firewatcher]

Debby,

One thing I cannot stress enough is for your son to be seen by a certified sleep specialist (American Academy of Sleep Medicine.) Any ol' MD with a polysomnagraph machine can set up a sleep lab and they may not have the proper training or staff to diagnose some conditions. I saw one of these type of docs first and he told me that "some people will always need medication to get to sleep..." and "you might try buying a hot-tub." The next doc I saw was fantastic! He is an MD and has the initials D, A.S.M. afterward, stating his further education in sleep disorders.

I have a genetic circadian rhythm disruption; my night starts much later than everyone else in my time zone and my natural wake up time is also much later. It has been unchangeable so far and I have tried! I intend to try again in a few months.

The first attempt ended in disaster! I was an incoherent mess with hallucinations due to extreme sleep deprivation. What I was told, and it makes perfect sense now that I have the official hyper-adrenergic POTS dx, is that norepinephrine is the the "waking up" chemical and the more of it you have, the more alert you will be. Sleep shuts off the nor-epi cycle, so the less sleep you get, the more nor-epi runs through your system, making it harder to sleep. Once my doc saw what had become of me after my first attempt, he put me on Ambien CR in a cycle of two nights off and one night on until I had regained my sanity. By cycling the meds, your body never gets used to it and won't fight against it like it will if you use it constantly. Beta Blockers completely destroy the body's natural melatonin, and since my dx I have found that by supplementing low dose melatonin at the right time will help me to sleep. Your son's endocrine issues may mean that he isn't producing enough natural melatonin and quite possibly at the completely wrong time. Only a trained sleep doc will be able to order the tests to know.

This is a topic very near and dear to my heart, since waking at the wrong circadian hour sends my HR into the 120's and above. Good luck, it is awful to not have the blessings of sleep! I KNOW this firsthand.

[PotsMom]

Firewatcher,

You mention the melatonin but what else did you ultimately settle into to help you sleep. Sleep is a huge problem for my son as well. He took melatonin for some time; it was semi-helpful but he had to take it at higher and higher doses for it to help. We finally gave up as then he began to sleep too much during the daytime, and that seemed to directly relate to the high dose of melatonin he was taking. When he came off of it, the daytime sleeping issues resolved. Just curious what you are taking besides the melatonin.

[Guest tearose]

I stick to the old fashioned treatments since I am extremely med sensitive and can't tolerate them.

Since I am prone to GERD and Gastroparesis, I try not to eat too close to night time sleep but if I'm struggling over a few days with poor sleep I will try some bread or warm milk and honey or a warm bath. If I still can't sleep I get up and read or watch tv or meditate or listen to music. I will need to nap the next day to catch up on needed restorative sleep.

Worst case, after a couple of days I will be so exhausted I will finally sleep well and find my way back to better sleep again!

Oh, also, Tylenol makes me tired so I may reach for one extra strength tablet and that will knock me out!

[Christy_D]

Since my last post to this question in March, my son is doing ALOT better. His blood test came back extremely vitamin D defecient. After taking vitamin D supplements for one week, he is now sleeping through the night on a regular schedule. His other symptoms are less severe as well. My son had barely gone outside for over a year. If your son isn't getting vitamin D from the sun, maybe have his blood check.

[firewatcher]

Firewatcher,

You mention the melatonin but what else did you ultimately settle into to help you sleep. Sleep is a huge problem for my son as well. He took melatonin for some time; it was semi-helpful but he had to take it at higher and higher doses for it to help. We finally gave up as then he began to sleep too much during the daytime, and that seemed to directly relate to the high dose of melatonin he was taking. When he came off of it, the daytime sleeping issues resolved. Just curious what you are taking besides the melatonin.

PotsMom,

Since I take a BB, it depletes the natural melatonin in my system. Timing is extremely important, you have to take it around 7-8 PM for it to work properly (dim-light melatonin onset.) If you take it later, it will push your natural sleeping schedule later and later till you want to sleep in the day. Also, he needs to take a small dose of melatonin (1.5mg) which is more natural, not a high dose. The morning beta blocker and evening melatonin works for me, but I am still extremely tired since it didn't shift my circadian rhythm into a normal realm. It is all very complicated and my sleep doc set the schedule according to my body's clock. I still have issues. I don't have a fix.

[Noreen]

Since I take a BB, it depletes the natural melatonin in my system. Timing is extremely important, you have to take it around 7-8 PM for it to work properly (dim-light melatonin onset.) If you take it later, it will push your natural sleeping schedule later and later till you want to sleep in the day. Also, he needs to take a small dose of melatonin (1.5mg) which is more natural, not a high dose. The morning beta blocker and evening melatonin works for me, but I am still extremely tired since it didn't shift my circadian rhythm into a normal realm. It is all very complicated and my sleep doc set the schedule according to my body's clock. I still have issues. I don't have a fix.

You were already on the BB when dx'd with the circadian rhythm disorder?

My son's sleep doctor put him on a strict sleep schedule and melatonin between 7 and 8. He generally takes 2 mgs. -1 mg maybe once a week.

Do you cut the 3 mgs for 1.5 mg dosing? Because it is so crucial, I am concerned about misdosing by a brand not splitting well or splitting and crumbling.

[kayjay]

Fire watcher- did any of your docs mention the use of a light box to try to trick you brain.

I do not know what I am talking about but I have a light box and was wondering if it would help me.

I don't want anymore drugs... I also nap during the day (sometimes twice) so I do get sleep.

[firewatcher]

I tried a light box. I'm going to try it again this summer. The problem with light and circadian rhythm is that TIMING is key. If you are off by one hour, you will either make things better or much, much worse. Light therapy is based on circadian nadir (the lowest body temperature point and metabolic activity for your body.) The greatest shifts in sleep timing/circadian timing occur when light is timed either during the hour before (delaying phase) or the hour after (advancing phase) your nadir. We totally screwed up the timing of my light therapy the first time and made everything horribly worse.

Timing for melatonin is also key. If you hit dim light melatonin onset, then a tiny dose will advance your circadian rhythm and make you sleepy at the right time. Again, one hour either side and it won't have the same effect. I cut a 3mg tablet with a pill cutter, slightly more or less at that dose is less critical than timing.

I was undiagnosed at the time of my sleep "therapy," so the intense ANS reaction came completely out of the blue and shocked the doctor. The attempt to reset my clock was what precipitated my biggest POTS crash ever, so be careful. I am very nervous about this next attempt and may chicken out.

[Griffin]

I have these problems too, with Delayed Sleep Phase Disorder. Nothing really shifts my sleep pattern which is why I am still awake now having been awake all night. Melatonin and sleeping drugs just make no difference however and whenever I take them. Sometimes a combination will work but have to be careful with that. Mostly I think it is a case of just accepting it; I've tried everything over a number of years with no long term success. What sleep I do have is not refreshing either, although sometimes if I have around 18 hours I get a good patch following for a few hours. As a way of life, it is not much fun !

[ramakentesh]

Id feel much better nocturnal for some reason - feel better after about 3pm onwards.

[firewatcher]

I have these problems too, with Delayed Sleep Phase Disorder. Nothing really shifts my sleep pattern which is why I am still awake now having been awake all night. Melatonin and sleeping drugs just make no difference however and whenever I take them. Sometimes a combination will work but have to be careful with that. Mostly I think it is a case of just accepting it; I've tried everything over a number of years with no long term success. What sleep I do have is not refreshing either, although sometimes if I have around 18 hours I get a good patch following for a few hours. As a way of life, it is not much fun !

I feel your pain. I've been this way forever. I have always felt better at night, even with exercise tolerance (I can almost jog at 11pm!) I am, so far, one of the unshiftable ones too. I have found that controlling the sympathetic overdrive with Klonopin and Inderal helps with the sleep onset, just nothing helps with the next morning! If I can sleep till 10-11AM, I'm actually pretty good energy wise, but getting up now (6:30) for the kids physically hurts! I am tachy, shaky and winded. One of the really nasty things about DPSD is that we don't recover from sleep deprivation like "normals," who fall asleep quicker after being deprived of sleep. Another nasty part is that our whole metabolism is based on our internal clock: lunch is really breakfast and the first time I am hungry at all during the day. I'm going to try to shift again this summer, but I have real doubts, if not fears! I think that messing with your circadian clock directly messes with your ANS, at least it did with me the last time.

[Noreen]

I feel your pain. I've been this way forever. I have always felt better at night, even with exercise tolerance (I can almost jog at 11pm!) I am, so far, one of the unshiftable ones too. I have found that controlling the sympathetic overdrive with Klonopin and Inderal helps with the sleep onset, just nothing helps with the next morning! If I can sleep till 10-11AM, I'm actually pretty good energy wise, but getting up now (6:30) for the kids physically hurts! I am tachy, shaky and winded. One of the really nasty things about DPSD is that we don't recover from sleep deprivation like "normals," who fall asleep quicker after being deprived of sleep. Another nasty part is that our whole metabolism is based on our internal clock: lunch is really breakfast and the first time I am hungry at all during the day. I'm going to try to shift again this summer, but I have real doubts, if not fears! I think that messing with your circadian clock directly messes with your ANS, at least it did with me the last time.

Did your sleep doctor spell out a schedule of change? For my son, the schedule was a 15 minute change per week. After the 8 or 9 weeks that took, the schedule was then set. The really hard part is that it is not to be deviated from.

It can be just as hard to get other docs to understand sleep issue disorders when they play with meds.

[firewatcher]

Yes, he made a schedule. Once I got to a certain point, I could not make further progress back and it was still not where I needed to be. That's when we tried "more drastic measures." Keeping to the schedule is incredibly hard and over 90% of DSPD patients relapse to their old schedule within one year of shift. The studies I've been reading show that you don't actually shift the circadian clock, instead it creates an artificial "override," and one weekend of sleeping in will negate 8 weeks of shift.

[Guest humanb4monitor]

Hi...New here and my 1st post BUT this word will jump at me (sleep) and ultimately may kill me. NOT being dramatic.

I want so much to talk but my day was nonfunctioning so will wait. I want to hug you all and say that I believe no meds will ever work and the only thing we can do is new "before bed and early evening practices" but we NEED each other to do it. Not just post about it. I mean post about it then put it to use and then share what happened.

My disturbed sleep probably goes back to the womb as it is documented at 3 wks old. And most sleep labs won't show US. So sleep specialists may be an answer because they may NOT shove us in boxes we do not fit. Again, I love you all and often as of late, feel mentally aggressive

against people who sleep and think it is all people. While they live their lives being mean and nasty and we are loving, giving, kind and BROKEN.

Sorry I was harsh but am feeling done. Done done done done.

I often wonder if we could survive POTS if it didn't come with this and CFS?

[Christy_D]

I've read Melatonin is supposed to be avoided with autonomic dysfucntion?? I used to give it to my son until I read that on this website on 'What to Avoid'. Is it one of those things like caffeine, some it helps and some it hurts?

[Guest humanb4monitor]

I recall when all those herbs & stuff got big and everytime I read the back of the bottle I knew not to touch it. That was many years before disgnosis because I had too many of the "not use" stuff on the label.

[firewatcher]

Melatonin can be a vasodilator and make orthostatic HYPOtension worse. I could not get by without it (but I'm hypertensive.)

Beta Blockers destroy the body's natural melatonin, so with a small dose (1.5mg) I get the sleepy nudge I need. It was one of the few things I took while having a holter monitor in the diagnostic process, and within an hour of taking it, my HR had stopped bouncing around and had leveled out to a resting 60-70 bpm. It was very obvious on the 24 hour graph.

Melatonin helps me, but may not help others.

[issie]

I can't take melatonion. It makes me crazy. I keep waking, sort of with weird feelings. When I sleep my BP drops out and I think melatonion makes it worse. One thing that I have found helps is dye free Benadryl. It has to be the dye free one. Also, recently added a Tagament to it. Last night, I slept like a baby and didn't wake up until morning. When I took it, I was having a horrible POTS spell. I told my husband I thought I was having a reaction to something I ate. So we decided to experiment. It made a HUGE difference. My POTS, BP and Pulse settled out and got less up and down. Because it was later in the day, I also slept really well. Someone else ever tried this? Did it work for you?

[Noreen]

Melatonin can be a vasodilator and make orthostatic HYPOtension worse.

Melatonin helps me, but may not help others.

I tried it as a sleep aide a long time ago and slept around the clock and was still groggy the following day. Now I know it was the NCS.

[Troy]

I also have problems going to sleep and often find myself staying up untill sunrise, I found a few quick fixes, antihistamines like "Periactin" that make you drowsy work wonders but your body eventually gets used to it, another one that works realy well in for me is Cannabis, gets me real tired and sleepy if I have it at night.