Messed up!!!!

[shazamataz]

Okay, so more weirdness going on with me!!!

I've never been a great sleeper and this got really bad on high doses of Pred

Now I have practically finished the Pred and for the past month or so my sleep is worse than ever before!!!

It is really quite strange and disturbing. Basically I feel constantly too hot when I try to sleep, even though it is NOT hot at all. I am really uncomfortable and have to keep drinking all night as my mouth is so painfully dry.

Also I keep having these strange twitches I suppose you could call them. Last night was particularly bad. Every 10 minutes or so, for HOURS, I'd just start nodding off and then BAM!!! leg spasm, arm twitch, whole body twitch that wakes me up. What IS that???????

Between the twitches and the incredible thirst and the being too hot, it's doing my head in. I'm already exhausted and no sleep at all apart from little 10 minute naps is not helping!!!

Any ideas? Am I losing my mind??????

 

[Guestly]

if you are losing your mind then so am I babes... sweats, twitches, thirst... its all going on here too...

If anyone has the answers I'd love to hear them too!

Thinking of you Shaz

 

[shazamataz]

So you get all that too? Sorry to hear that Lishy - it bites!!!!! I don't have sweats or fever but am painfully hot and tingly and thirsty, but then when I drink I have to get up to pee!! GGGGGRRRRRRRR!

really does feel like I might go mental. I can see why the Chinese (??) used sleep deprivation as a form of torture!!!!!!

 

[Peaches]

You need to drink PLENTY of fluid during the day - and try sleeping naked with a fan going and see if that helps with the hotness thing (oo la la - that's hot ). Also - if you aren't already doing it - try going for at least a mile or more walk every day for a week straight (not too close to bedtime either) and *do not* nap during the day. All you guys that have insomnia and nap during the day - are just asking for insomnia!! Also - don't eat within a few hours of bedtime. Just try those things for a week and see what happens.

Now as for the twitchy thing WTH?? Maybe you have that RLS thingy (restless leg syndrome)?? But you say it happens to other parts of your body as well? Is it just when you nod off and you have a dream like you are falling down stairs or something and you jerk back awake? Or is it literally your body just randomly jerking? Are you taking vitamins everyday and eating well? Just strange - I got nothing on that other than the RLS. My legs do this periodically and it is maddening when you are trying to sleep - but it is very sporadic for me, so I do nothing about it.

Shaz..you have been on that taper for a looong time - your body may just be having trouble adjusting to coming off. I'm not saying slow things down - I'm thinking maybe it is time to try and come on off and give your body a break to try and get back into its natural rhythm again.

 

[Fog Ducker]

I had the same goin on when I was on Pred, mix in the waking up in a puddle of sweat. It sucked!!
Sorry I dont have a solution for you though.

 

[CrohnsHobo]

I get the same thing. Only way I can sleep now is with Percocet and Tylenol PM. Even then I have some nights where I just can't sleep.

 

[fenway1971]

Shaz,
Read my old posts. For years, I've had this constant thirst problem followed by peeing up a storm. Worse last year on pred then 6mp. Glucose, kidneys, etc. all normal. I'm starting to wonder now if it's just moderate to severe dehydration and I just need to drink lots and lots more.

 

[Nyx]

I had this when I was in the hospital. Seemed to stop as soon as I got out. I do find that I'm drinking tons more water now though, not sure if that's the solution or not. Either way, it's not a bad idea.

 

[tamesis]

A girlfriend of mine gets those twitches too, and they think it might be sleep apnea....Have you been tested for that? It would explain your constant fatigue too....I know you're not an overweight middle aged male, but still possible? May be worth asking your doc. if you can get a sleep study?

 

[fenway1971]

A girlfriend of mine gets those twitches too, and they think it might be sleep apnea....Have you been tested for that? It would explain your constant fatigue too....I know you're not an overweight middle aged male, but still possible? May be worth asking your doc. if you can get a sleep study?

Great suggestion!

I had sleep apnea and am hardly overweight (middle-aged maybe). Caused by abnormally large tonsils which I had removed two years ago. Cured my issues. Didn't know it until my gf at the time said I stopped breathing while sleeping. My ex wife never pointed it out but maybe she was hoping I'd kick the bucket? (that's an awful thing to say, as she's still a peach)

Anyhow, worth asking the doc about or have someone sleep over and see if you stop breathing. I still twitch from time to time but only when I'm really tired.

 

[Peaches]

Ew Ew Ew :raises hand: I'll volunteer to be your sleep mate to watch and see if you stop breathing. All you have to do is fly me over (for a short vacation!!)

 

[CrohnsHobo]

I just get twitchy. The jimmy legs. Can't calm down. That combined with being a light sleeper and then and I can't relax my mind. Even after popping a percocet and two Tylenol PM's. I can still sit up all night.

 

[imisspopcorn]

Ah, Shaz, I'm a bit of a twitcher too....Well, mostly a spaz...Anyway, my potassium levels are always on the low end of normal. One bad day of D, and I really notice it....So I drink Gatorade or some other electrolyte replacement. I know you don't normally have the D, but that is my suggestion...Also, I am always thirsty and sweaty at night during the summer months. I really think it is related to the years of on and off again Prednisone....

 

[shazamataz]

Hi Guys, thanks for all your feedback! The sleep apnea thing sounds really interesting to me because I actually find myself holding my breath a lot in the day time so why not at night as well?????? I'll mention that to my doc on monday as well.

 

[shazamataz]

This is kinda interesting. I looked up apnea and didn't find anything about the twitching but when I looked up twitching I found some stuff about getting those twitches when you first fall asleep and a cause may be due to lack of oxygen. We may be onto something. ANOTHER thing to look into and deal with!!!

 

[Pirate]

I have sleep apnea. I have been tested and I am suppose to use the machine every night. Found that when I'm in a flare I had a hard time keeping it on. Like it was causing air to go into my stomach and I'd really get a stomach ache.
I am also a twitter- I mean twitcher and it seem to help when I'm hooked up to my Cpac machine.

 

[Astra]

Hi Shaz
Ive been on 40mg of Preds now for 4 weeks, tapering off now to 35mg then again next week
Ive had all them symptoms you described, and so Ive been taking 50mg Nytol (main ingredient-diphenhydramine hydrochloride) you might find something similar in NZ?
since then, Ive slept thro 8 or 9 hours a night! no waking up at all
and stopped kipping during the day too, think that helps too
Its a temp fix tho, but it might help with the PRED insomnia
lotsa luv x

 

[Peaches]

Ah, Shaz, I'm a bit of a twitcher too....Well, mostly a spaz...Anyway, my potassium levels are always on the low end of normal. One bad day of D, and I really notice it....So I drink Gatorade or some other electrolyte replacement. I know you don't normally have the D, but that is my suggestion...Also, I am always thirsty and sweaty at night during the summer months. I really think it is related to the years of on and off again Prednisone....

I didn't even THINK of the potassium thing! Maybe that is why it happens to me super intermittently? So are you saying go eat a banana the next day??

 

[imisspopcorn]

I think gatorade works much quicker. I hate it though....Blah.

 

[Fog Ducker]

UGH!! I think this thread junxed me!!
Last night I woke up tossing and turning and couldnt stop! Getting twitches and not just restless legs, restless whole body! Grrrr! So anoying!

 

[shazamataz]

I eat a banana every day, at least one, so it's unlikely to be potassium. Weird thing is that last night I actually slept solid for 4 hours straight until Muppet woke me up to put him out. Then I slept for another hour and then woke up with D and haven't been back to sleep! Argh, first good sleep i for EVER and now I get D which I practically NEVER have, and certainly never during the night! I hope it's just a pasing glitch.
Sorry you had a bad sleep Foggy, hope I didn't jinx you

 

[RachLG]

Hi there Shaz - shoot I was going to suggest potassium as well haha. But since you've got that covered, I would look into entering a sleep study - not one where they're testing meds or anything, just where they monitor you during the night for a few days. I would especially suggest this since you've had trouble sleeping for a while. I have been dealing with a similar issue of waking up soaked in sweat, tired all the time...etc..a rhrumatologist told me I didn't really have the body type for apnea (I assume she thinks it's more due to extra weight on the chest area...I am not blessed with very much weight on my chest However, I personally think apnea is not just for the well-endowed or overweight, which is another reason you may benefit from a sleep study to see if you're breathing ok. Your body does have safety mechanisms to say "breathe for goodness sakes!" and that may be the twitching. Good plan to bring it up to your doc - I think that's the best start

 

[Guestly]

Hmm the potassium theory has got me thinking though... I have a heart condition, and I know low potassium affects it.... And it's been playing up... I'm gonna hit the bananas... I know it wasn't my thread but thanks guys!

Also Good call from Joan on the Nytol - it is very effective, bummer you can't use it for prolonged periods....

Hope you feel better soon Shaz x