Dysautonomia (Autonomic Dysfunction) Community
Insomnia
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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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Insomnia

I am wondering, is there any safe treatment for insomnia in Dysautonomia?  I take Ritalin/Theophylline to raise my blood pressure, but even still it can get too low for an accurate read.  Does anyone else experience episodes of insomnia?  How do you treat insomnia without lowing blood pressure, heart rate, and respiration?

I recently asked one of my doctors about Melatonin, assuming that perhaps it would be less potent than some of the other sleep aids.  He told me, rather sarcastically I hope, that it would probably put me in a coma.  Obviously, this wouldn't be my first choice.  I'd appreciate any suggestions.
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612876_tn?1355518095
I don't have a good answer for you, since if I remember correctly you're pretty sensitive to medications to begin with?  I have been fortunate that I've been able to take Trazodone (would probably put a small horse to sleep) without dropping my BP/HR, though I do also take Midodrine overnight, despite all the label warnings to the contrary.  

Another thing to consider, if you've tried any of them in the past and have been able to tolerate them, would be drugs in the Benadryl family.  Besides Benadryl there is Promethazine (Phenergan), which you may have had if you've ever had surgery as it is often given to prevent post-operative nausea from anesthesia.  At moderate doses it can induce drowsiness pretty well (as can benadryl in many people).  If I were you, I would ask about Promethazine if you don't have any known adverse reactions to it.  It comes in low doses, so you could start small to try it out and slowly work up to a larger dose if needed, watching for adverse effects.  

I'll let you know if I think of/find anything else.  
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10947_tn?1281407852
Hi,

Saw your post and wanted to let you know we have a good Insomnia expert over in our Sleep Disorders forum at http://www.medhelp.org/forums/show/319. He may be able to help too.

MedHelp
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492869_tn?1285022533
I can't take antihistamines either, (although I recently took a chance with childrens Zyrtec, and that worked out alright), because of my LQTS.  I tried Phenergan for nausea last summer, but it caused hypoventilation.  (I now take Zofran with an extra beta blocker -again because of the LQTS warning-, for nausea.)  I think I might be stuck, but if you think of anything else please let me know.  Thank you for your response, perhaps your suggestions will be helpful for someone else in this community.

You mentioned taking Trazodone.  Do you also experience insomnia as well?  I wonder if it's related to the drugs, or the Dysautonomia?
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Thank you for the suggestion.  :)
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612876_tn?1355518095
I can sleep very easily during the daytime, but have issues sleeping at night.  I was having problems kicking my legs *violently* at night and it was getting ridiculous.  I actually kicked right through the fitted sheet on both sides of one of the beds in the house (on our most expensive high-thread-count Egyptian cotton sheet set, of course, hahaha), at which point I told my doctor, "enough is enough."  I've tried depriving myself of daytime sleep, and it doesn't help with the night sleep, so it's not an issue of tiring myself out more.  My body just gets wired exactly when it should be settling down, and for some reason this translates into crazy fidgeting and kicking around.  Which is where the trazodone comes into play; it works perfectly for me and I no longer feel like fidgeting and kicking all over the place instead of sleeping when I get in bed, hehehe!  Good thing for the sheets!

I really feel for you because it's such a bummer when you're wired when you want to be sleeping.  One of the listed side effects of Zofran is drowsiness... does it make you sleepy at all?  Maybe it is dose-dependent?  Might be worth asking your doctor if taking a slightly higher dose of that at bedtime could help???  I had that last time I was stuck in the hospital for a week, but I can't say whether it made me drowsy because I was on morphine at the time for pain, which obviously was making me drowsy.  

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492869_tn?1285022533
Oddly, my sleep patterns seem similar to yours.  I've never kicked through two fitted sheets mind you, but according to a sleep study I had a couple of years ago I was in movement nearly all night long.

I can sleep just fine after my morning medications, (most which supposedly cause insomnia), but it's not incredibly convenient.  I try to deprive myself of that sleep unless I'm sick, but no amount of sleep deprivation seems to help me sleep through the night.  I wonder if this pattern can be somehow related to Dysautonomia?
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612876_tn?1355518095
I don't know.  If it is related you know they'll probably have that piece figured out in time for our 80th birthdays.  :-p  It seems as though, anecdotally, so many of us have a great many symptoms in common that aren't specifically mentioned in the medical literature or acknowledged by doctors as being related.  The incidence of these commonalities often seems from our (admittedly myopic) perspective to be high enough to be more than mere coincidence.  Whether it has more to do with meds or the disorder itself is one of those chicken or the egg matters, but then, I've had this tendency to sleep easily in the daytime and struggle at night for so long that it predates both these meds and my diagnosis with POTS/vasovagal syncope.  I will say that it got EXPONENTIALLY worse as soon as I got POTS, to the point where I was pleading with the docs to do something about it.  

My new neurologist is actually sending me in for a sleep study soon.  My last one was in 2006 and wasn't particularly valid as they only managed to get me asleep for about 1-2 hours of it.  I haven't heard the game plan on this one yet, regarding how they're going to get me to sleep *at night*, *with no sleeping pill*, *in a strange place*, *with all that stuff hooked up to me* ... and expect me to actually fall asleep for it ... yeah, good luck.  But I'm hoping they have a plan because I don't see the point in repeating it since the last one was faulty if the same thing is going to happen this time and they can't get me to fall asleep.  Sometimes I feel like the docs are really smart but have no common sense.  Hahaha.
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Just read a couple of the comments and wanted to say thank you! Sounds silly but i have just recently been diagnosed with POTS, So of course I have been going crazy trying to fix it the best I can. After having symptoms from the age of 12 it finally got to the point that i couldnt handle ! I have 3 children and am at times unable to care for them properly. I went into the doctors desperate! My primary care provider couldnt find anything wrong with me so after 7 months she said i was depressed tried the meds made things horribly worse! went back in, explained and pleaded for help! By this time symptoms worse! She gave me an event monitor wich showed a rapid heart rate at certain times and he said it looked good. So left with no answer she reffered me to a cardiologist he diagnosed me in 25 minutes of listening to my symptoms! I was relieved and felt like what i was saying was validated ! I have almost every symptoms POTS can throw at you! The cardiologist recognized my symptoms due to other patients experiencing symiliar cardiac symptoms ( tachycardia, orthostatic intolernence with a healthy heart). Anyway the biggest problem I have now is te sleep issue! I feel sick in the day but if I sleep then i will never sleep at night but even if i dont nap in the day night sleep is getting worse i just cant sleep at night! So now the only time i sleep is when im sick! Making POTS worse for me! Good to know that Im not a freak! I felt like i was crazy about this sleep thing now i know im not!
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I was just dx with POTS and Neurocardiogenic Syncope. Working on getting my heart straightened out but I have to agree that thethe insomnia is driving me crazy. I take 50 of benadryl, 30mg of temazepam, 10mg of melatonin and still cannot sleep. Sleepy all day and up all night. So tired of being tired. Ambian stopped working. Not sure what else to do
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612876_tn?1355518095
You've responded to an old/outdated thread. MedHelp keeps an archive of old discussions because they can help people find information that has been discussed in the past; however, this one in particular is illustrative of why we encourage people to start their own thread by clicking the "post a question" button at the top of the page, rather than posting a comment at the end when they have something to say even if it relates to something they saw in an old thread like this one.

I'm one of the participants in this conversation from four years ago, and the other grew to be a friend of mine. A LOT changes in four years. My sleep problems were diagnosed as an autoimmune sleep disorder, one which—except for the comorbidity of autoimmune modalities and dysautonomia in general—has no connection to dysautonomia whatsoever. Back then I had no idea I had *two* rare diseases coincidentally! Halbashes, on the other hand, does not share this diagnosis with me. I could speculate today on the causes for her sleep issues given the benefit of hindsight, but it's not place of course.

Another thing that has changed is that I no longer recommend benadryl or phenergan for people with dysautonomia without expressly warning that these medications can be particularly troublesome in dysautonomia and only some of us can tolerate them. As you might imagine, I know more about autonomic dysfunction today than I did four years ago, and can share much more detailed knowledge with you!

This is not to lambast you, janalee13, but because many many members of our community do this same thing and wonder why we ask them to start a new question and this just happens to be a really good illustration of why. So I appreciate your patience in letting me explain this example for the sake of everyone.

In exchange for that patience, I'll play nice and go ahead and reply to you here instead of waiting for you to repost your question in a new thread as I ordinarily would.  :-D

First, I would talk to your doctor about the benadryl and whether it is right for you, taking your whole clinical picture into account. My post is the fourth one down in the following thread, and goes into some more detail about the different types of antihistamines and why benadryl can be problematic for some dysautonomia patients:

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/What-to-ask-an-allergist/show/1369750

Secondly, I would ask your doctor about whether 10 mg of melatonin is the ideal dosage for you. Clinical studies have shown that too high a dosage of melatonin can be as problematic as too low a dosage.

http://web.mit.edu/newsoffice/2001/melatonin-1017.html

Looking at the dosage tab here, I'm only seeing 10 mg or higher doses for cancer-related therapies and cluster headache, not insomnia:

http://www.webmd.com/vitamins-supplements/ingredientmono-940-MELATONIN.aspx?activeIngredientId=940&activeIngredientName=MELATONIN


At any rate, I am not a doctor so like I said, this is stuff I'm just brainstorming that could possibly be factors; you definitely want to discuss these things with your doctor. The only other suggestion I have off the top of my head is that there are other sleep meds that you could try that have worked for people with dysautonomia; I definitely wouldn't think it'd be advisable to throw them into the mix you already have going, though, especially with the temazepam! But if you want to try changing for something else, ambien, lunesta, trazodone, and clonazepam come to mind. Ambien sometimes will work for people again once they take a "vacation" from it, so that might be an option depending how long you've been off it. One advantage of clonazepam is that it's similar to the temazepam you're taking but it's commonly used as an adjunct medication in treating dysautonomia such as POTS because of its effects on the nervous system. Many POTS patients finds it helps with some of their symptoms of overactive sympathetic nervous system. Yet another thing to bring up with your doc.

I hope you find something that works for you soon. I know how batty it can make you not to be able to sleep well, not to mention how it can negatively impact other symptoms.

Best,
Heiferly.
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