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INSOMNIA the worst ever...

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Hello all!

It's 5 am where I am. Am I asleep? Nope. Is Asher? Yup.

Anyway, I just was wondering what those of you who have dealt with MAJOR insomnia have found to be triggers of it or what has helped.

I will be emailing my doc again soon, but wanted to check in here too.

I thought that going off of the Dexedrine would help, but it hastn't. I have also started taken Vit. E at bedtime (POTS doc suggestion) to help with 'muscle irritibility' that seems more pronounced to him the Restless Leg Syndrome.

I have not slept more than 3 hours in a stretch in weeks. This past week, even that rarely happens. I am awake many hours of the night...not usually up doing stuff, but in that half-asleep, half-awake, semi-conscious state. I sometimes sort of fall alseep for short periods. I have those bizarre dreams that you are sort of half awake and half asleep for.

My ambien has never been this ineffective.

I am doing most of the things that I know how to do to help with 'sleep hygiene'.

I am making myself push through the days as much as possible. I find no relationship b/w how much I do in a day and whether or not I sleep.

I know I have 'stuff' going on emotionally...who doesn't have stress? I am doing what I can at this time to help with it and returning to some of my sleep/meditation cds. Sometimes I fall asleep for an hour or so, but then I wake up again. I feel like this insomnia goes far beyond what I usually feel/get when I am stressed. I am doing some yoga during the day, trying to go for a little walk, get fresh air, reach out to friends, etc. etc.

I don't know what is waking me up or keeping me awake.

What is hard this time around is that it is so persistant. Every night is like this. I have always had a lot of trouble with sleep, but would always have a 'good night' here and there to keep me going.

Yesterday morning I had the chills/shakes for 4 hours.

For those of you who have dealt with this (GENA? and others)...

What helps?

Did you figure out a trigger or cause of it?

Gena, how did you know your bp was dropping at night? I am wondering if this is happening with me.

Just wondering if others have experienced this sort of insane insomnia. I have not had a good night's sleep since surgery! But it is so bad right now.

Thanks so much for your help...

As you might guess...this whole insomnia thing is getting me behind on posts b/c I can't see straight half of the time!!!

Later alligators! Back to trying to sleep.

By the way...I really try to do the whole 'what's the big deal if I don't sleep thing and not get stressed about losing a night's sleep, and approach each night like it will be okay, but boy, it isn't working!


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I can totally relate with what you're going through. (By the way, the Dexedrine could certainly be a culprit. I would stay away from that.)

Lack of sleep is the worst feeling, because it messes up your entire day, you feel irritable and spaced out and just not yourself, and then you start dreading nightfall because you think you'll be in for another restless, sleepless night.

The way I could tell if my BP was dropping too low is because I'd wake up with tachycardia (my body's way of saying hey, let's get the BP up, it's dropping too low here). Not major tachycardia, but enough to make me get out of bed and go do something else until my heart started to calm down. Some nights I would just feel wired and tired at the same time and when I did sleep I'd have nightmares.

The good news is that for the last 5 weeks I have been sleeping very well. I don't think it's a coincidence, but five weeks ago I started taking Natural Calm (raspberry lemon flavor). It's a magnesium citrate powder that you mix in warm water and drink like tea. I drink it right before bed and It's worked wonders for me. I was very skeptical at first, because I'd tried all of the usual tips for getting a good night's sleep like avoiding caffeine and alcohol, meditating before bed, exercising well in the afternoons, eating a light meal at dinner (not too close to bedtime), etc., none of them really did the trick for me. So needless to say, I'm very pleased with the results from this product. (I'm praying that it continues to work so well!) :)

Here's a link to the website. http://www.naturalcalm.net/breakthru.shtml

You can check it out and see if it's something you may want to try. (I believe Blackwolf or Earth Mother initially recommended this product.) You may also want to try the other tips I've listed above. I also sleep better when it's very cool in my room so I turn my A/C down a degree or two cooler at night.

Also- I took Ambien many years back and my body got used to it really fast and it became totally ineffective for me. It wasn't intially designed to be taken for long-term use.

Hopefully Em you'll be catching some good ZZZZs soon. I'll send some deep sleep thoughts your way. :o



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Hi Emily,

I am so sorry you are in the no sleep hole...but I think it is so cute that at 5 am when you are up, Asher is too! What would we do without the compassion of our pets. They are so in tune with our moods and ailments, aren't they?

I like Gena suggestion. I remember when Earthmother first wrote about this natural calm product and I started to order some but forgot (how typical is that?!)

Anyway, I am impressed that both EM and Gena have found success with it. I do take magnesium at night and find that it helps somewhat.

I also just discovered that if I drink an electrolyte drink after 6 pm -- even though I dilute them with water -- I have more trouble with sleeping. I would have said the problem is the sugar but since I dilute, I don't think so. Do you drink at night? Might be worth a try.

Most of the time, I don't know what causes the insomnia. I have 3 sleep patterns since POTS. For me, I use Ativan to break a cycle. I know others disagree but unless I break the insomnia cycle, I become very low functioning. My doctor doesn't want me on Ambien so I have no experience there but seems like you need to switch meds since it is ineffective.

And when I have the worst insomnia, I find that I sleep really well from 7 to 9 am or in the afternoon. At first I would try not to sleep in the afternoon for fear of not sleeping again that night but my philosophy now is SLEEP WHENEVER YOU CAN! Sooner or later our dysfunctional bodies get back on board.

Until then, take care and rest well, even if you are not sleeping.

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Hi emily! I'm sorry you have had such a bad bout with insomnia. I used to suffer from it terribly... In the last few years I have gotten back on a normal sleep schedual.

I still have episodes of not sleeping well. I have a week or so where I feel wired and only sleep about 5 hours a night and am wound like a wild person all day.

Then it just goes away.

I dont know what advise I can give you. Have you ever tried melatonin? I took that for years when I had problems sleeping and it helped a lot. I took a low dose from Vitamin Reserach Group.....

Actually I noticed that after a few years of melatonin is when my body started just going to sleep on its own and doing better. Maybe it reset my timeclock??

I also used to stress from not sleeping and then a couple years ago I just resigned myself to the fact that I do not sleep as much as I used to and took the stress off me of trying to sleep. That actually helped!

I try as much as I can to stay on a schedual. I notice I get the best quality of sleep if I am in bed by 10pm....I usually sleep through ( With 1 or 2 bathroom breaks) the night and wake up around 7:30.

A sound machine, fan, air purifyer or any background noise also helped.

Is the insomnia from not feeling well, or feeling restless or from all of thee above?

I hope that you can get some rest.... Try for now not to stress too much about it and take it for what it is..... ( I know easier said than done!) But I do feel that if we give ourselves a break about the sleep thing the more likely we are to fall asleep.

Have a great day :)

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Hi Emily,

I was wondering where you were!!

I have this sleep trouble as well. I've had it for months, then had a "better" period and then it comes back again. I usually fall asleep soon and then after an hour or so I wake up, for about 3 to 4 hours. I use that time, to think things over. Nice things and bad things; I read and after 3 or 4 hours I fall asleep again. I don't care anymore, because there's nothing I can do against it (I don't take sleep meds). The most awful thing is that my alarmclock goes at 7AM because of the children. I HATE that part. Sometimes I'm just asleep for half an hour (or even 15 minutes) and then my alarmclock goes. There's nothing that can be done. Also I don't sleep more during the day because of bad sleeping at night. The mestinon made me sleep much better (have really NO idea why), but everytime the mestinon looses it's power I get insomnia again. I don't like it, but it gives me time (during the night, when nobody needs me :) ) to work things out. I don't like it, but I can live with it!

Best wishes Emily, we need to do the idioms soon, so I hope you'll have some better nights!!!


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Hey Emily. Oh, you must be feeling so yucky! I can totally relate to that horrible shakey sick feeling... I get that along with severe nausea and stomach cramps when I haven't been sleeping. If you think it might be related to low BP when you're sleeping, maybe you could try having a big cup of broth ( I use powdered chicken OXO as it is super salty) about an hour before bed followed by a big glass of water. I think you have some problems with needing to use the bathroom alot through the night, so maybe this would not be so great, but it wouldn't hurt to try for a few days. (Maybe you already do this?) It seems to work well for me most of the time. I have times when I wake up over and over through the night feeling like I am going to faint and tachycardic. Most of the time this helps to lessen that and I feel like I sleep better. I hope your doctor has some good suggestions for you. Sounds like you are doing everything right and it's just not working! Hopefully your doctor will have something for you that, like geneva said, will break the cycle. Laura

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Guest Mary from OH


I have one word for you.... it's a medicine called Klonopin. Try it, you'll like it. :( I could NEVER fall asleep or stay asleep either. I'm much better now. Or you might even try Xanex??

Girl, you gotta get some zzzzzzzzzzzzzz!! I feel so badly for you!! I've been there!! Go to Bath and Body and get some of their Lavendar and Vanilla stuff. It's good too. They have pillow sprays, plug-ins, etc.... I use them for Marissa.

I wish you luck!! Can you get one of your drs to call you something in before this weekend?? You really need to get a good night's sleep!! :huh: I'm sure you're going batty by now!! :(

Take care and keep us posted!!

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thank you all so much!

gena, i was hoping you would see my post! i will look in to the natural calm and talk to my dr. about it...i just emailed him and he is out of the office until tuesday! oh well...

jenn and gena...i just had my dad put a window air conditioner in last night to see if i would be cooler at night that way. we have central air, but my room is so hot and my mom and i fight over the temp! this way, no more fighting. i used to run a fan for noise, but this way, the air cond. does that job too.

as for what is keeping me up...i really don't know why i am not sleeping. if it is achiness, low bp, or what. i feel so tired but just don't go into sleep. i'm not feeling anxious or anything. it's weird.

i really appreciate all of your responses...it helps me so much to know that i am not alone...when i am up at night, it helps to know that others have been this way too. it makes a huge difference.

anyway, mary...i actually have the lavendar and vanilla spray right here on my nightstand! there are no two smells better, i don't think! :huh:

as for klonopin and xanax...i like them both okay, and would like to try them again, however they have milk protein in them and my doc wasn't too thrilled about that. so i tried tranxene, but didn't have much luck with it. i will re-explore with him.

corina...hmmmm....how about:

'it'll knock your socks off'


'don't be such a pansy' (which i am being right about now!)

thank you all so much...i really, really appreciate it...geneva and corina...i fall asleep about 6 or 7 too! sometimes i get my best sleep even if only a couple of hours then! geneva...i also will not give up my afternoon nap! i could not get through the day without it. i find, like you, that it doesn't matter how much i follow all of the sleep hygiene rules...there is no rhyme or reason to the insomnia.

and laura...i cannot believe how good your memory is about my peeing all night long!

here's hoping for some sleep...although, honestly, i have not gotten one good night's sleep since my surgery. gee, ya think i would feel better if i did??????

okay, bad attitude! sorry!

later alligators!


p.s. corina...you got the 'eggs in one basket thing right'--i heard it a lot growing up in terms of choosing activities --not to put all of my eggs in one basket. like, if you are only good at football and that is the only thing you can do and it doesn't work out, you are in trouble!

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Oh Em! You know I have your same trouble!!! I totally feel for you girl!! I have tried the Natural Calm to help with constipation and it did relax me. But watch out if you don't have constipation cause it can cause diarrhea. Anyway, try anything!

One thing I do if I haven't slept in a long time is just take a little more ambien. Last time we talked you said you take 12.5 mg. Well take more one night. Or let it dissolve under your tongue just a bit and then swallow it so it will get faster into your blood stream. I don't suggest this all the time, just in time of desperation.

Wish I had more tricks for you!!!! The Lunesta didn't work great for me but I may keep trying. Maybe you could try a 1 mg sample from your doc. Also, my bp falls so low in the night it keeps me up. 77/45 some nights. I keep my BP monitor on my bed and that's how I know it goes so low. My heart beats like Gena's and I know it's because my BP is so low.

Hang in there!

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Insomnia was my first symptom of things worsening in the late 1980's. SLeeping pills did nothing...Klonopin has helped more than ANYTHING and the occassional melatonin for resetting the sleep clock. But I just have adapted.

I have horrible tinnitus so reading late at night, last thing doesn't work. TV on a sleep timer helps me IMMENSELY though I stay away from violent, intense movies and such.

"Proper sleep hygeine" never did SQUAT!! ONCE MY INSOMNIA became chronic. FOR TRUE INSOMNIACS the normal stuff doesn't help. Heavy duty exercise makes me WORSE and can rev up my tired-wired sensation even 10 hours after the exercise. I just go with the flow. Work on computer, read with fan on and then turn on TV just loud enough to hear it and that helps a lot.

after 15 years I have SOOOOOOOOOOO Been there, done that with 'natural sleep aids'. Melatonin is the most effective tho I just take part of 3mg tablet and put under my tongue until it dissolves and I have to spit out the left overs. I only use straight melatonin.

DIFFERENCES in hormone (both female, cortisol and others) greatly affect the sleep wake cycle. I was seen by one of the top sleep docs in the area and he even treated me for free as he became curious about my MOST RESISTANT insomnia...but that was a few years before ANS problems were dx....I wonder what he would think now tho he understood that Klonopin helped more than most things...but he never understood the sleep hygeine not working. That stuff only works for folks who don't know how to relax...it's not for AUTONOMIC patients who have an over abundance of adrenalin SIMPLY from changing positions...hence the nickname POTS.

Good luck in adapting...I have gone thru sporadic times of sleeping on my own and LOVED and ENJOYED the warm, fuzzy sleeping feeling I sometimes stumble onto!! I LOVE the sensation of getting sleepy since I rarely feel that way. Mostly just exhausted and wired...but hey, after 16 years, I adapt...and being disabled and not working....I just go with the flow.

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One more thing I want to say about the Natural Calm...I was hesitant to take the full dose of 600 mg (3 tspns), as sometimes getting too much magnesium can cause loose stools as the others have mentioned. I slowly worked my way up to 3 tspns with no problem - no diarrhea or any side effects. I find the full 3 tspns is the most helpful for me. If I take too little, it doesn't quite do the trick.

As you know I don't like to take any meds, but as you probably remember I did take Klonopin for a while during the winter when I was having insomnia, just to "break the cycle" of insomina as Geneva put it. It only took a half of a .25 mg sublingual wafer of Klonopin (the lowest dosage made) to give me a good night's sleep. A few times I would take the other half in the middle of the night for good measure.

I took it for several months and then slowly weaned myself off of it. I keep some in my night stand just in case I ever wake up with bad tachycardia or anxiety.

I used to take melatonin many years ago, but it made my dreams way too vivid, so I had to quit. I hope you find something that works for you real soon. :)


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Em, I'm hoping you have sweet dreams tonight. The AC should help you--it will help in the natural process that occurs as you fall asleep; your body temp drops slightly. Do you think that part of it is your body readjusting to being active again? Is your evening routine consistent?

I have a routine at night, which includes having a fan on in the room--the noise helps to mask other sounds that might wake me, and I get the double bonus of having the breeze keep me cool.

Have you tried a warm bath/shower before bed to help in the body temperature lowering. Once you're out of the bath, your body is still trying to get it's core temp down--combine that with your new AC, and you might be able to prompt a better routine.

Here's to a lovely, restful sleep. Nina

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Just to add my 2 cents worth... I have used a supplement called ZMA for a year now and it has really help. You can get it on immunesupport.com. It is just Zinc, Magnesium and B6. I take it 1/2 hour before bed and it really helps my sleep. If you try it, go slow because the magnesim can give you the runs. Try on a night for a week before you go to two a night.

BTW... I thought of you the other day.... do you know where the term, "It's the real Mcoy" comes from???


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I'm another insomnia sufferer, so i sympathise lots. The main thing that brings it on for me is simply doing too much in the day. If I do anything other than read a quiet book, or do simple things on the computer in the evening, I won't sleep until 3-4 am. Occassionally I do see friends for an hour or so in the evening (you've got to have a life!) or watch TV, but I know I won't sleep. This probably isn't much help, but for me it is a trigger to slow down even more.


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I find it interesting that so many folks find relief from magnesium in some form at bedtime. Is there any reason for me NOT to try this? Can this get other electrolytes out of whack? The natural calm site says something about having too much calcium and this causing problems? I'm so confused!

ANYWAY...after all of your posts, I am back again here at 4 (hey, stephy you there? :))

I am hoping some of you will pop here again to this post and bear with me for one more rambling. I have been really trying to observe what is happening and here's what seems to be going on at night:

During the day, I find that if I don't fidget constantly and move around a lot (even though I'm feeling like that's the last thing I want to do) I start to feel much worse and get that sinking feeling in my chest, etc. So I fidget constantly to keep blood moving, I guess.

When I try to rest or relax, I often have these twitches/electric shocks type of thing. Sometimes my whole body does 'starts' and other times it is just like my heart is kind of 'twitching', but doesn't feel like PVCs or something to me.

This is going to sound weird, but it feels like when I move or fidget I keep my heart muscle working and 'tight' and I have a lot of adrenaline when I am reclining or upright and getting up and down. But, when I try to rest or go to sleep, it's like the heart muscle is trying to 'relax' and it keeps sort of getting 'stuck' and 'twitching', which i feel in my whole chest.

I feel like, maybe, when I am trying to relax or sleep, my heart is doing this b/c maybe I am having low bp or trying to keep from passing out. I don't have the same adrenaline as when I up/awake?

I really have been observing this, and was just wondering if maybe my heart is doing this b/c if it 'relaxes' completely I will pass out or my bp will go low. I am one of those people who doesn't pass out and my body does anything and everything to keep me from passing out...even if it means endless shakes, chills, no sleep, etc. So, maybe this is why I stay in this semi-conscious state? B/c my body is trying to keep me conscious?

Is this nuts?????????????????? Like you Gena, I end up getting up and doing something until my system settles some.

I am also very fidgety and squirmy at night when I feel this way.

I am having a LOT more of these electric shock/twitching type things these days and have no idea why. Any takers???

OKAY...enought rambling...thanks so much for you posts. I found them incredibly helpful.

as for the bedtime routine...i do take a bath every night and i have a pretty darn strict evening routine.

and steph! i love that you sleep in until 11 am! b/c i do too!!!! and always think i am so weird to be 29 and getting up so late like a teenager in summer! but, like you and sophia and others, i am lucky that i don't have to get up to be at work, so i do really try to just take the insomnia in stride.

however, when it persists this much for so many months it gets horrible, as you all know.

i have a bunch of people who will be visiting/in town this summer over the next few weeks, and i just wish that i would get some sleep so i could enjoy being with them a little more!

thanks for reading all of this!!!!!!


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do you have someone to take you for a walk (that is if you have a wheelchair). It could calm you down for the night (and I think Asher would like to join you :lol: ).

Also taking a shower before bedtime could help (that is if you?re up to it, I think someone else wrote this too).

Oh and I really don?t know what a `pansy` is.

Can you explain whenever you get out of bed :) .

But try to make it not a big problem (yes, I know, that?s easier said than done), also I think getting out of bed isn?t a good idea because I think it will mess up your rhythm. Maybe you could listen to music, read a book (I often take the Little House series because they?re easy to read, now don?t laugh at me!!! :unsure: ) or just relax and think (I like that too).

Well, I think-hope you?re still asleep now,

sweet dreams,


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Hi Emily, sorry you and Asher had a sleepless night again. I wish there was something I could think of that would break the cycle you are in. You have mentioned several times about maybe it is your bp being too low. For ME, too low bp, puts me into a wonderful sleep state which I call my coma-sleep cycle. I know that my bp at these times is in the 70's or under because that is when my monitor errors out and can't read them. I have had tachy wake me in the night and on the mornings I wake up with low bp, I become tachy the minute I move at all in bed. I guess the point I am making is that for me, low bp gets rid of insomnia.

The point you are making about how your heart muscles feel is interesting. Do you think it is something you should ask your cardiologist about? It sounds like for you this is a little different than usual. Is that true or did I misinterpret? I also wonder as Nina has said, could this have any connection with you trying to get on with your life and be more active and your body functions are in a state of readjustment post surgery?

I have had heart muscles twitching and electric like pains off and on since POTS. I just had a echo stress test Wed to look at the heart muscles so maybe it is just on my mind!! Not a fun test with POTS btw...I was holding onto the treadmill for dear life...but results were good so I am glad I did it. I am not suggesting this is something you need to pursue Emily but just wanted to share with you that I get the weird heart muscle things, particularly when I lie down.

There are just so many weird things that our bodies do and bedtime is when my brain wants to think about all of them and that keeps me awake. Trying to "let go" is hard but every night I try again. Hope you are resting.

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you are all so sweet and thoughtful to me...thank you...geneva and corina you can both always make me smile...

geneva, your post was very helpful. i will ask more about the electric shocks. my doctor does sense that i have 'more neurological symptoms than are typically just POTS' and that is partly why he did the Lyme testing. i am glad your stress test was a-okay, but ugh! that will really wipe you out!

corina, a pansy is basically being a wimp. a favorite of my dad's...to say this when i am being girlie and don't want to dig in the dirt or something. also if you are just like, oh, that's too much work and whining and being a big wimp about it...he will say, stop being such a pansy!

anyway, just checking in to let you know that i actually DID get some sleep last night! after i typed that email, i feel asleep from 5:30 to 9:30 am! then, got up to pee (2x in 20 min. b/c my bladder was so darn full) and then fell back to sleep until 11:30 am! it was a minor miracle!

corina, i do take a little evening stroll every night and then a seated shower. i love to take asher! last night we got caught in POURING rain, the biggest raindrops ever. it felt wonderful! asher and i loved it...i just love the rain like that. but, my dad was hysterical b/c he was being a PANSY about it. i told him he wouldn't melt!

i try to sit outside every evening in my reclining chair and also take a 'tour' of the flowers in the yard...even if i am not up to a walk, i do this. it is so healing.

geneva, you are right about the electric shocks coming when lying down! i think that when my bp drops too low at night i wake up and get the shakes and stuff...not the coma sleep!

corina...i am sooooooooooooo up on the Dutch stuff with the EU b/c of listening to BBC radio in the middle of the night! but, maybe i should try little house on the prairie instead? :)

thanks all...keep your fingers crossed that i sleep tonight too. i skipped my calcium last night, and am wondering if that helped? weird, i know, but they are so hard on the stomach!


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Hey Emily,

glad you got some sleep, even if it wasn't at night but in the morning!!!

You are absolutely right, your dad is a pansy :( He will definitely NOT melt from rain. It's funny you mentioned that, because my sister took me for a wheelchair walk some time ago and it started to rain. She said, isn't it nice Corina, to feel the rain on your face? She knew exactly how I felt, and now you feel it too!!!! I like that!!!

How nice you listen to BBC radio. We often watch BBC television (they really have good programs) and when in Britain we listen to BBC radio. We had a big thing going on last week in The Netherlands, but since that's political I won't bother you with it!!!

Well, I'm wishing you sweet dreams for this coming night (I wish I could go to bed right now, because I'm sooo tired, but I can't because people are busy in our house, working arrrggggghhhh)

Thanks for explaining the pansy Em,


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I used to have bad insomnia too. Not as much lately as I used to. I went to Mayo's Pain Rehab Center for my Fibromyalgia and I had this stress guy that talked to us about relaxation, insomnia and stuff. He has such a soothing voice, I used to fall asleep during his class, lol. He gave us a relaxation tape. I use that to fall asleep. The only time it hasn't worked is when my fiance came to surprise me and scared the crap out of me. I was supposed to be on my deserted island, and someone was there. I haven't been able to listen to it since. It is the only thing I can think of that made me fall asleep. If you want me to copy it and send it to you I can. I would be glad to. I hope it gets better.


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Guest Mary from OH


Hey - Hope you sleep tonight!! I know I won't. :( I am on day 3 of my migraine!

I get those electric shocks you are talking about!!!! They are usually down my legs, especially my left. Sometimes I get them in different parts of my body. They hurt and are really annoying. My cardio just thinks I'm nuts!! :(:( He just looks at me like he has no idea of what I'm talking about and just nods his head..... REALLY irritates me!!!

Just like one time, a dr kept trying to tell me the pattern of numbness I was (and still) experience in my left leg and thigh is neurologically impossible! I was ready to deck the guy. Finally, I calmly said, well obviously I'm not doing a good job of describing it since it's happening in my leg. So, I know it's neurologically possible because I'm EXPERIENCING it and have been for 6 months!! (now it's been over 2 yrs).

Anyhow, how did I get off on this tangent??!! God, my head hurts. I better stop talking!! I hope you get some sleep tonight and I will talk to you when I can make some sense!! :(:D

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emily i know what you mean about fidgeting, i cant sit still either, i cant walk, but i am constantly moving and feel most of the time like i have too much adrenaline, i have low bp, and i feel like i can never really relax, its a terrible feeling and i also feel like i have to keep moving so i dont pass out, i cant stop moving no matter how exhausted i am, shelby, could you tell me where i could get that relaxation tape? i am always looking for a good tape but never know which ones to buy, thanks


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