Sleepless in Pennsylvania...AGAIN!

[DancingLight]

Hello All!

I need a little support...and ANY tips you may have would be great!

I have been taking Ambien for almost 7 years now...and my POTS doc wants me to stop it b/c it contains lactose. I have hypersensitivity to milk and we do not want milk products to be even in my meds. Ambien cannot be compounded w/out milk b/c it is still under patent.

Anyway...it doesn't work as well anymore b/c I have been taking it for so long (and YES, I do know that it is only FDA approved for short-term use of 7-10 days. Believe me, I have tried EVERYTHING else and tried going off of this med several times before.)

Still...even though it doesn't work so hot, it still feels a heck of a lot better when I take it then trying to stop it! UGH!

I am ssooooooo MISERABLE! I am a sour puss, Roselover!

I gradually decreased my dose from 12.5 mg a night down to 5 mg a night (2.5 mg at bedtime and 2.5 mg when I woke up in the middle of the night). Then, on Friday night I stopped it completely.

The past three nights...I have been up ALL night long. I CRAVE the Ambien. I am agitated, anxious, flushing, sweating, and just lying there awake. But, I am too dizzy and tachy and tired at the same time to do anything.

I am increasing my Doxepin to try to override the insomnia and it is doing nothing. I still have magnesium to add in and will ask my doc if I can do that this week. I am also taking Topamax in the evening. I thought b/w the two of those I would be OUT! But, no such luck!

Last night I had one of my 8 hour 'spells' of pounding heart, dizziness, etc. and the only thing that I can guess is that I am in a vicious cycle...no sleep, more fight or flight, then harder to sleep, and on and on.

Anybody know how long this withdrawal will last? Or anything I can do to ease it? Or any other tips? Anyone else go through this with Ambien? It's the only med that has ever helped me to sleep, so I am really not too sure what is going to happen even after the withdrawal part subsides...

ANY tips would be greatly appreciated. Does anyone else have the degree of insomnia that I do?

Oh, I hate that I can't sleep! And the less sleep I get the more tachy and dizzy and on and on. I hate it!

Okay, sorry for the vent! Thank you!

Later Alligators!

Please send me sleep vibes!

Emily

[corina]

Hi Emily,

here's one of your fellow not sleepers. Although I'm usually not awake ALL night. At first: I try to make it NO problem. That's because I don't have a job and I don't need to be bright and sprankling at 7am, so I take a book and try to read, or listen to some soft music. Just thinking about sleeping this way helped me A LOT.

And there's another thing: when I started using mestinon, I found out that my sleeping was MUCH better! I really don't know why, but I did. Since then I notice that everytime my body gets used to mestinon and it doesn't work that good anymore, I get sleepingtrouble again. I can't explain it, nor can any doctor. What I meant is: if mestinon is on your list of "meds to try", it might help your sleeping as well. Not sure of course, it's just an idea.

I know how difficult it is not to sleep during the night. I've had some really bad nights and still had to get out of bed at 7 because of the kids, arrrggghhhhh! But what helps for me is trying not to make it a problem and trying to work things out during the night, or come to solutions in difficult situations, or just think of something/someone nice (maybe Brad Pit????)

Hey I hope this helped a bit!

Sweet dreams, Corina

(when I'm awake, I'll think of you, knitting al your scarfs!!! )

[steph37822]

oops

[dizzygirl]

hi emily..

i just wanted to add a me too in the mix..

i also have been on ambien for over 2yrs.. take it every night.. and it does not work like it used to when i first started taking it. I take 10 mg. at bed time

For the past week I have had horrible insomnia..I am up all night long!.. my boyfriend goes to bed at9pm, and is back up at 6 am,, and low and behold I am still awake.. ready to talk his ear off..

I unfortunately dont have a ny tips on how to get to sleep and beat the insomnia.. I go through cycles where I just dont sleep.. then one night i am so exhausted that that is all i do for days is sleep..

I find that i can sleep better during the day.. I dont know why.. but I can catch a few winks..

hope you get some sleep soon..

dizzygirl

one insomniac to another...:)LOL

[goldicedance]

Hi, Emily...Can you take benadryl? Tylenol PM? Just some thoughts. I,too, am sleepless in Maryland~! Lois

[DSM3KIDZ]

Emily- I just had insominia for the 2 nights and it *****!!!! I just layed there and finally fell asleep at 5:30 a.m. I didn't have much on my mind so it wasn't stress or anything. But boy was I tired during the day, anyways my point is I hope you find something that works and you get the Ambien out of your system soon.

I'm sure you've tried everything on the market but just a suggestion I take tylenol simply sleep. I only take one and it works great. (I ran out) 2 make me wired.

Good luck I hope tonight brings you sweet dreams.

dayna

[StaceyYount]

Hey,

Have you tried valerian? You can get it at a health food store. I use it sometimes and Jim really likes it, he had a pretty wicked bout of insomnia and valerian was the only thing to help. It just kind of settles you and then you fall asleep.

I use phenergan when it gets bad. Like now... I almost got on the computer last night to see if anyone was on at 2:30, finally fell asleep at 4:30. It makes the days seem sooooooooooooooooooooooo long doesn't it. Also I have found if I am just laying desperately trying to sleep I won't so sometimes I put on the TV and put on a movie I have seen a million times and then eventually I go to sleep. The other thing that works if I am sleepy but just can't seem to fall asleep is that I crochet in my head. I start doing stitches and then it is morning! Jim also lays on his back and places his hands on either side of his breast bone and gently presses, good accupressure point.

Of course sometimes these things work and sometimes I am up all night. :-0 Arghhh! :-)

Here to hoping we are all seeing happy dreams tonight!

Stacey :-)

[MightyMouse]

I have no meds or herbs to suggest... just to try to stick to a routine... take a bath to work with your natural body temp dropping afterward, helping bring on sleep. Make sure your room is cool, quiet and DARK. Try to stick to the same bedtime.

And if that doesn't work, HANG IN THERE!! You'll get sleep eventually.

Nina

[Sunfish]

heya girl -

i am SO sorry that you're having such a rough time. i wish i had something to suggest but i'm at a loss. i'm giving one last go at avoiding sleep meds myself as i settle in at my new place but think that i'm going to try melatonin first. i know there are old threads on it that i'm going to search, but have you ever tried it?

i haven't had the absolutely no sleep thing recently as i'm more in the 2 hours sleep, 1 hour not mode - annoying but not AS bad as none at all - but a few months ago i would go several nights in a row without a wink of shuteye so i can empathize...not that that helps too much. unfortunately i don't know how things improved for me, just that they did. never to normal, but my last entirely sleepless night was probably about a month ago.

i think your doc is out-of-town, right? when is he back so that you'll be able to get his input?

sorry i don't have anything better to add.

and i'd say for your lack of sleep you're not being a sour puss at all!

hang in there & hope the sheep start doing their job,

:-)melissa

[morgan617]

I tried to write this morning and my darn computer was not being cooperative. I don't have any great suggestions. Doxepin made me sleep like a coma, but i was on a honkin dose of it. But that was years ago and it also made my heart race really bad. That's actually why we stopped it. But all i did was sleep on it. Maybe you are having an odd reaction to it. It is making you too hyper? I don't know.

I dream all night long, I swear it's one dream after another all night and they all wake me up. All night. That's why I didn't agree with the endo that people who wake up fatigued are always depressed, or it's always caused by depression.

I always have a fan going for white noise and play very relaxing music down low and sometimes that helps, but then i start to dream....geeeeez

I hope you get some zzzzzz's soon and I am sending sandman dust your way, just sprinkle a little in your eyes and go off to sleepland.... megalamaudreymomambabingbongmorgan

[yogini]

Hi Em,

I have strings of terrible insomnia where I don't sleep all night. This may sound silly but I bought a sleep mask and some relaxation and sleep CDs. They really do help put me to sleep (or if I can't sleep, at least I feel relaxed through the night, which is a bit better than tossing and turning). The mask is great for headaches, too. I try to eat a few hours before bedtime and stay active, or at least seated up until I am ready to call it a nite. I also find that if I stay in bed until morning, even if I am wide awake, I ususally catch at least an hr or two at the at some point.

These things help a bit, but if you are reacting to ending the med, then you will probably feel a lot better once it leaves your system. I know my body goes crazy each time I change my meds. So just wanted to offer you some encouragement to hang in there...

Hope you catch some serious Zzzz's sooon.

Signed,

Sleepless in NY

[Guest Julia59]

Emily,

I'm so sorry to hear your having difficulties with sleep. That's the worst.....

I find that reading helps me a great deal. It forces my mind to focus on the book which helps me get away from the remblings of my mind at night. You know what I mean.....? I find that my my mind races with too many thoughts and worries----one of them is thinking about sleep. Eventually it comes naturally.

But there have been times where nothing worked----I was just way too wired.

This is terrible for me because lack of sleep makes me so much more symptomatic. So I can relate how this must feel for you----but only to a smaller degree. I have only had a sample of what your going through right now----and I don't like the sample.

I'm sending lots of hugs------and peaceful thoughts. I hope you get some relief soon.

Julie :0)

[Radha]

sorry to hear about your sleep problems, i can relate, its very stressful and frustating when you cant fall asleep and then it just gets harder the more sleep deprived you get, i know i just get more hyper and my mind goes into overdrive when i cant sleep, melatonin, valerian, lemon balm, benedryl, i switch off on these things so my body doesnt get too used to one, hope this helps, and i hope you get some rest soon, its true the more you worry about sleeping, the harder it gets, easier said than done!!

radha

[Roselover]

Em, yuck! I hate sleeplessness! You have my permission to be a sour puss this once! I had a sleepless night last night and ended up taking a full 10 mg of Ambien instead of my reguluar 5 and still didn't sleep well. Ughhhhh! I hope it's not wearing off.

I asked my doc about taking it so long ( been on it about a year 5 mg most nights but not every night.) She said I should stay on it until I see Dr. Grubb in January so i guess it's another 6 months for me. I'm hoping the dosage is not wearing off.

I have restarted a supplement that has helped a lot in the past. You might want to give it a try with the Valerian someone else suggested. I haven't tried Valerian yet, but am just about to. The supplememnt is call ZMA. Its Zinc Magnesium and B6. NO... it's not too much B6, I've checked. It'll take 4 - 6 WEEKS thought to really take it's most effect. Start with one for five nights and then up to two a night. It's not supposed to be taken within an hour of milk - which you don't drink anyway. It doesn't help me fall asleep like a sleeping pill, but I feel more relaxed and I stay asleep all night with it. I can give you the website if you're interested.

Also, I think someone recently mentioned the new sleep aid Lunesta. It's supposed to be OK for long term. That's what I was going to ask my doctor for if she thought I should stop the Ambien.

So now, I'll sing you a little bedtime song and maybe that'll help.

"Go to sleep now my pumpkin, I will tuck in your toes.

Go to sleep now my pumpkin, for to me you're a rose."

Sleep tight and don't let the bedbugs bite!

Love Roselover

[DancingLight]

Hello all,

Thank you so very much for all of your support and suggestions...

I think the verdict is...the dreaded WAIT IT OUT...PATIENCE.

I emailed with my POTS doc before he heads out of town for a bit and he really deosn't want me to make any changes right now and just let things settle.

I do want to start magnesium, and we have discussed that--I have a bottle of it ready! But, he didn't want me to do that right now either.

The only med he suggested increasing was the Doxepin --as I seem to be tolerating okay and not having problems (morganofcoveredwagonland--i am only on 10 ml and started at .25 ml). He said I could go up to 20 ml as slowly or as quickly as I wanted to and stop wherever I felt comfortable.

Nina, I do always keep my room cool (a balmy 66 degrees! My mom thinks is FREEZING in here...hence the reason I got my own window A/C in addition to our Central Air!) And the bath, and the routine and all that...

I think it is gonna be a rough couple of weeks...I really think it is withdrawal from the Ambien and I just have to wait it out...the joint and muscle pain, sleeplessness, etc. My dad is a riot b/c he has studied this in drug addicts--and i'm like dad, I'm not exactly a heroin addict! He's been soooo sweet to me.

So just wanted to update you all...and let you know why I have been so absent. I am awake but so absolutely exhausted I can't see straight. I'm poppint in as much as possible to keep up on the news though...so you are all in my thoughts...

We have discussed changing my middle name to patience...EMILY PATIENCE...what do you think???

Thanks again,

Emily

P.S. Roselover--I just read about Lunesta some more. It is approved for longer term use...but by longer term they mean 6 months without it losing it's effectiveness. Ugh! I want something to last longer than that! This process stinks!

[MightyMouse]

Dear Patience, I hope that at the end of this waiting game, you end up with lovely, restful, sweet dreams. Nina

[Sunfish]

em-

the patience name is a good one (can i borrow it too for my wheelchair approval craziness?) i wish i had some grand wisdom to add but i still wanted to at least send a (((HUG))) your way. and some sleeping dust perhaps? i am glad that you did get to talk with the doc, even if the advice is to wait it out. i think that waiting it out under his watch would make you feel at least a teeny bit better than not having been able to touch base with him at all, but i still can't imagine how tough it must be to be feeling how you are at the moment.

hang in there,

:-)melissa