DancingLight Posted May 30, 2005 Report Share Posted May 30, 2005 Hey all,Of course it's a holiday weekend and I'm just hoping that one of you will have a clue about going off of stimulants/amphetamines? Okay, if I didn't have POTS that would sound pretty funny to the average person, huh?I will email my doctor and call the pharmacist tomorrow, but I feel so badly about bugging my doc AGAIN! I'm a walking disaster area...Anyway, I have been taking Dexedrine, but it seems to make me feel very, very anxious, wired, etc., can't sleep, etc. etc. Typical side effects if it is going to give you side effects.I am already on the lowest dose possible, so the next step was to stop it.I feel horrible...I stopped it on Wednesday...The first couple of days I just felt more tired, more POTsy, but much less agitated/anxious. I slept a bit better, but not great. Got some good naps.Then, last night, I was up ALL night, and today I cannot get out of bed. I feel like I have the flu on top of POTS...and you all know I'm not exactly running any marathons these days to begin with.I don't feel edgy...just completely wiped but couldn't sleep. Today, it's all I can do to sit up and go pee and I don't feel like eating at all. But, I am making sure to drink fluids and get in a couple of my trusty 'juice boxes' that are high calorie, high nutrition.So, WHAT IS THIS? Does this sound like withdrawal from the Dexedrine and how the heck long will it take for me to get through this 'wait it out period'.My Dad is a riot...he's like Mr. Criminologist, so he is all comparing my symptoms to drug addicts trying to go off of amphetamines! He's been so sympathetic! It's so cute.Okay, I may try to make it to the recliner and eat something...Thanks...Hope you are all having a bit better holiday weekend than I am!I have to say, only someone with POTS would have withdrawal from 5 mg of Speed! Emily Quote Link to comment Share on other sites More sharing options...
corina Posted May 30, 2005 Report Share Posted May 30, 2005 Hi Emily,I'm sorry I can't help you. Maybe it's something your body has to get used to, so it will take some time!!! Our POTSbodies sure give us trouble don't they?!Can you give me some kind of clue with the watched pot, because I really can't figure it out. Well, maybe you're just up to be in your recliner and watch some television! I have those days as well, that all I do is lay in my recliner, feet up and nap all day!Take care,Corina Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted May 30, 2005 Report Share Posted May 30, 2005 Ok Em.I just called my Pharmacy!! They're awesome, and they're still open today!! I caught your msg just in the nick of time!! (they probably close at 5pm). The pharmacist said that yesterday, when you were still wired, the medicine was finished leaving your system. (4 days). Typically it should have been more like 1 -2 days, but with the way our bodies work, he said double time isn't surprising.And the fact that you feel "dead" now..... IS because..... You've been "flying high" on the dexadrine!! Now, you're exhausted!! Your body needs time to rest and catch up!! Makes sense!!Why were you taking that stuff anyways???!!!! Not a good combo for a POTSsie, I don't think. Hope you feel better soon. I think you need some good old chicken soup and some pampering.Love you!! Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted May 31, 2005 Report Share Posted May 31, 2005 Emily,I'm sorry that your losing sleep----nothing worse then that in my book. Uggggg-------all my symptoms get soooo much worse if i don't sleep---I just become useless.That is the first I heard of dexedrine. I would think that would be difficult to tolerate for POTS patients, but then again I have heard of some POTS patients going on stimulants----but most of them also have NCS.You will bounce back----but really take it easy, and don't be so hard on yourself about needing to talk to your docs. I really can relate though----as I have been trying to get in touch with one of mine for over a week----and I feel like i'm bugging the staff.Don't worry----and try not to think too much. Just roll with it----you tried something in hopes it would help, but it didn't work out for you. I know plenty of people who have tried stimulants, some it worked for, some it didn't.Go treat yourself to some good home cooking when you feel like eating-----maybe a little ice cream too----your favorite kind.Wishing you well trooper girl----i'll keep you in my thoughts.Julie :0) Quote Link to comment Share on other sites More sharing options...
DancingLight Posted May 31, 2005 Author Report Share Posted May 31, 2005 wow! thank you all so much for your thoughtfulness...julie...you are right...gotta not be so hard on ourselves.mary...how sweet are you to call the pharmacy for me????? that was truly an act of kindness given all of the stress in your life! thank you, it really helped me. even my dad (who is never telling me to take it easy!) is like, you are just going to have to rest and wait it out! as for WHY the dexedrine...i am on a very strict dairy free diet (so, no ice cream julie! that stinks so much!) and dexedrine is milk-free. also, it's just another option like some folks who take provigil (which i couldn't tolerate either), ritalin, etc. to sometimes increase energy and raise blood pressure. it worked great for me before surgery, but not after surgery, just like the clonodine. my whole body is still thrown for a loop. corina...the watched pot never boils. you know how when you put on a pot of water to boil for a cup of tea...if you stand there and wait and watch it, it seems to take forever and ever and never seems to boil? but if you do something else or are distracted...voila! it is boiling. same goes for waitng for the doctor to call with test results or whatever. you can apply the saying to anything like that. if you're waiting for that phone to ring the time just creeps by and it seems like it will never happen. does that make sense? hope that helps! oh, yes, i did get your email...thank you so much...i am terrible about replying! sorry! thank you!okay, back to crashing!!!! i'm miserable and soooooooooooooooo whiney!!!! whine, whine, whine! where's morgan to ask me if i want some cheese with that. oh shoot, no cheese, no dairy.thanks so much! i knew y'all would come through for me!emily Quote Link to comment Share on other sites More sharing options...
blackbirdsings Posted May 31, 2005 Report Share Posted May 31, 2005 Hi Emily, I know what its like to stop that med. Not fun! It helped me for one day and after that I was hyper, I would faint and just get up and keep going and didn't really shut off. It got to the point I was taken off of the med because it wasn't helping, I was so wired all the time and not sleeping. I think it took me a week or so to go back to myself...I remember feeling far worse when I stopped taking it before I felt better.I hope that is of some help...but everything you are going through sounds really normal but I would call your doctor tomorrow if your still having trouble to see if there is anything else you can do that might help. Quote Link to comment Share on other sites More sharing options...
Merrill Posted May 31, 2005 Report Share Posted May 31, 2005 Emily, so sorry you're having a rough time right now! Transitions (of all kinds) are soooo hard! Hang in there--you can do this!Your ambien apparently isn't enough to get you to sleep these days ... maybe you could go back and listen to one of thse Naperstak CDs? I find them soothing, and frankly, boring as all get out. Just hearing her voice gets me snoozing. Maybe you'll be comforted in going back to something familiar that you haven't done in a while?I don't know if I've mentioned this to you before, but one of the last "fluffy" and thoroughly enjoyable books I've read is Crossing California by Adam Langer. Here's the amazon link so you can read about it.http://www.amazon.com/exec/obidos/tg/detai...=books&n=507846It really resonated with me because it's set in the neighborhood that my grandparents lived in during my childhood (and that I live in now). Everything takes place between 1979 and 1981--also key years in my youth. (I graduated high school in '79--and the teenage protagonists perfectly reflect my own teenage angst.) I don't know if it's available on tape ... are you up to actual reading these days? I hope so!These are my tips for tonight. I hope you get some sleep soon!peace,mPS you'll be proud of me--tonight I walked to our corner ice cream store with my husband; he got a milk shake but I got salty popcorn instead! Yum! (This is after reading everyone's dairy comments on the other string.) Quote Link to comment Share on other sites More sharing options...
morgan617 Posted May 31, 2005 Report Share Posted May 31, 2005 Sorry Em, hubs has been working on my dying computer, just got it back up and running, so far. How bout some soy curds instead. Oh yummy Sorry you are feeling so punk. Hope it clears up quickly. I didn't tolerate provigil at all. Rather be tired...morgan Quote Link to comment Share on other sites More sharing options...
yogini Posted May 31, 2005 Report Share Posted May 31, 2005 Emily,How are you feeling today? Here's hoping you finally got some zzzzzzzs. I've had a lot of trouble every time I've tried to adjust my meds, so I can totally relate. It took me 6 months to get off florinef and my recent attempt at reducing my beta blocker didn't work either. I think that the others are right that you just need to wait it out. Your body is still also adjusting to your surgery, which makes it extra hard on you. It's really painful to wait it out, but hopefully you'll feel MUCH better in a few days. Quote Link to comment Share on other sites More sharing options...
corina Posted May 31, 2005 Report Share Posted May 31, 2005 Emily, how are you doing? I hope you feel better today!Thanks for explaining the watched pot! I would never had guessed it! I know the baby and the water (we have it as well, and guess what: my babies were much too cute to throw away!!). Are you up to a new one?I've been writing about a book and video in Merrills topic about the anitbiotics. I'm sorry I'm messing things up.Hope you'll have a nice day, take care,CorinaI would like to write: peace, it so makes me laugh! But hey, it's Merrills word Quote Link to comment Share on other sites More sharing options...
Merrill Posted May 31, 2005 Report Share Posted May 31, 2005 Hey, sweetie (Corina), guess what? That word belongs to the world, not to me! And we need to spread that word (that vibe, that feeling, that love) far and wide! I would be honored if you were to use it and use it often. (and it would make ME smile if you did... )PS a colleague just came to my desk with a bag of pure chocolate imported from Amsterdam! She was there on vacation last week and loved it--she said it's so beautiful, the trees, the canals, the flowers ... said you're having nice weather now! Yay!Peace,merrill Quote Link to comment Share on other sites More sharing options...
corina Posted May 31, 2005 Report Share Posted May 31, 2005 Hey Merrill,yesssss we had such nice weather, it went up to more than 30C (sorry don't know how much that is in Fahrenheit, can't keep it in mind). Since I'm a cold POTSy I feel better during warmth which made me enjoy those days very much!!!I also LOVE Amsterdam, there are so many musea (Van Gogh museum is my favourite) and I love the canals and all the restaurants, the Dam with the pigeons, the flower market (one of my favourites too!).So, enjoy you chocolate (if you got any ) . Your collegue was only a 20 minutes drive from me!PEACE (without the joint!!!)Corina Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted June 1, 2005 Report Share Posted June 1, 2005 Em, I feel for you--every time I tinker with my meds, I worry about things like what you're going through. Hopefully it will pass quickly as your body readjusts to being without the medication.Nina Quote Link to comment Share on other sites More sharing options...
steph37822 Posted June 1, 2005 Report Share Posted June 1, 2005 oops Quote Link to comment Share on other sites More sharing options...
DancingLight Posted June 3, 2005 Author Report Share Posted June 3, 2005 hello all! just wanted to thank you all so much for your help. i was so grateful to you, blackbirdsings, that you had experience with the same drug!the withdrawal was horrible, but it didn't last long, and thankfully, monday was the worst of it.i do think i feel better off of the drug...much less edgy and much less nervous energy. but my body is still adjusting...steph,i cannot believe you just recommended the no. 1 ladies detective agency books...and i had literally just put one on hold at the library! i am still only up to books on cd, but the reader of these is fabulous. i listened to the 4th one last summer, but decided to go back and start with the first one and listen in order! so, i will be thinking about you while i listen!thank you for teh other author suggestion also, i will see if any of her books are on cd. sadly, our library is a bit small! they don't have so many of the books i want on tape...i.e. merrill recommended kite runner and california crossing. of course, calif. crossing is only in print form () and kite runner, i got that today, but it is abridged! i, too, search online for books and then have my mom pick them up from the 'braire.do you think that we could start a book thread? books on tape are what are really getting me through these days...and i love getting suggestions, but i am so confused now about what to post?steph, i think we are a lot alike sometimes! the sleep thing...that is what is happening to me. i am more restful now that i am going off of the dexedrine, but i still see the clock a lot! and i just feel like i never get good sleep and i'm just sort of 'resting'. it stinks. and i get the fight or flight thing with a little startle too. it's awful! i practically jump to the ceiling with the slightest noise.aaaaaahhhhhhh...to be a dog...asher is snoring right now, sound asleep. enjoy your car-li and tell her not to wake you up at 3 am anymore! later alligators! emily Quote Link to comment Share on other sites More sharing options...
steph37822 Posted June 3, 2005 Report Share Posted June 3, 2005 oops Quote Link to comment Share on other sites More sharing options...
Merrill Posted June 3, 2005 Report Share Posted June 3, 2005 Kite Runner is abridged? Fahgeddaboudit. I'd recommend waiting, Emily, until you're up to reading again. It's such a wonderful book. Don't do abridged. Uch.I've read one of the McCall Smith books and loved it too -- want to read the rest.m Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 3, 2005 Report Share Posted June 3, 2005 Hi,How are you doing Emily? Do you have less symptoms now?Ernie Quote Link to comment Share on other sites More sharing options...
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