Sleep

[lavender]

I have quite a bit of trouble falling asleep and staying asleep. One thing I've noticed that makes this worse is when I push myself durring the day and do too much. I'm not sure if this is true, but what it feels like is I start to run on adrenaline. When i go to bed I feel horrible....beyond exhausted, sick, and chilled. I can't fall asleep for hours. Even though my body is wasted, it feels like it can't unwind because of the adrenaline. Can anyone relate? I try to avoid getting to this point, but it happens SO easily and some days can't be avoided. Have you found anything that helps with sleep at this point?

[Sushi]

This is the story of my life! The only thing that I've found that helps is taking meds that will cool down the sympathetic revving. For me it is phenobarbital and klonopin at bedtime, with a small dose of ambien as back up if those don't work. I really know how you feel, and it is so easy to cross the invisible line into overdoing and fatigue.

[P SUDIK]

To me it's seems so ironic, we are warn out but can't sleep.I literally can not sleep without ambien. I am always revved up. Once in awhile even with ambein, I can't sleep. I find myself staying up later and later,because I'm afraid I won,t fall asleep! Hopefully, you and your doc. can come up with something safe that will help you. Best of luck P

[lavender]

My doctor calls it "wired tired." Good description! I've tried a few sleep meds. Lunesta, sonota and rozerem. They have made me feel drugged durring the day and over time don't help with my sleep or make it worse. I wish there was something I could take just on the wired nights, that would kill off all the adrenaline and relax my body. What does phenobarbital and klonopin do for you, Sushi? do they give you hard side effects? I havn't tried Ambien. Is it hard to get off of once you start?

[pickledfairy]

I am in the same boat your are Lavender. I have had insomnia (this time) for roughly three months and have tried just about every sleep aid imaginable and nothing works. Two nights ago I started Sonata, but no luck yet. I have been doing a lot of researching and have also tried everything recommended in terms of cleaning up your sleep hygiene. I know that getting 1-2 hours of sleep a night (no naps during the day) is not helping how I feel at all. I still force myself to do 10-20 minutes a day of walking on the treadmill and forcing myself to get up at the same time very day no matter the time I fell asleep, but I guess I am just not tired enough to fall alseep.

I do have some elevated hormomes that can contribute to sleeplessness (i.e. cortisol) but further testing hasn't proved that I have any other disorder such as Cushing's going on. I just keep plugging away. Hav eyou had any of your hormone levels tested?

I think Ativan is next on the list to try, I will let you know how it works.

So, I guess all that rambling was to say your not alone and hang in there. I will be sure to share with you anything that we try that helps.

Hang in there....

Sheridan

[P SUDIK]

Lavender,I would have to say yes in my case, I can not sleep without ambein. P

[Sushi]

Lavender,

I take low doses of klonopin (.25mg) and phenobarbitol (8mg) and no, I don't feel groggy the next day. I started with 16 mg of pheno and that did hang me over a bit, so the doctor cut it in half. But I am sensitive to meds and usually take lower doses than others. It is an enormous relief to know that when I go to bed I will sleep! Earlier the doctor tried me on a really low dose (.5 mg) of clonidine at night but that made me exceptionally tired the next day--it does work for some though, as does ativan. Yesterday at our support group the doctor was explaining how the sympathetic system starts its wake up call (slowly) at about 3 am and that really made sense for those of us who habitually wake up about then and have trouble going back to sleep. Thank goodness, now I go back to sleep when I wake up.

[Canadagirl]

I have quite a bit of trouble falling asleep and staying asleep. One thing I've noticed that makes this worse is when I push myself durring the day and do too much. I'm not sure if this is true, but what it feels like is I start to run on adrenaline. When i go to bed I feel horrible....beyond exhausted, sick, and chilled. I can't fall asleep for hours. Even though my body is wasted, it feels like it can't unwind because of the adrenaline. Can anyone relate? I try to avoid getting to this point, but it happens SO easily and some days can't be avoided. Have you found anything that helps with sleep at this point?

I totally had this for years! Taking a very small dose of valium and propranalol (beta blocker--blocks epinephrine) allows me to sleep and I no longer feel the adrenaline at night. I also find that sleeping from 2am to 9am helps me get the best sleep. I hope you find something that works for you

Edit==I also find that doing a relaxation exercise during the day settles down my adrenal glands. When I feel like doing it least is when I need it most!

[willows]

Yep , me to guys.

Here I am up again at almost 6 am now , I've been up since 3 am just pottering about doing bits here and there .

I was so shattered when I went to bed I didn't know what to do with myself , that was at 6 pm last night , watched TV until 10 pm then suddenly I was awake managed to settle down and fall asleep at about 12 o'clock .............then the itching started .........and up again wide awake at 3 am , so in all I've had 3 hours sleep and this has been every night this week and last week and forever .

I'm so tired I dare not drive at the minute or operate anything electric or with sharp knives .

So it appears this is another little 'nasty ' our bodies are playing with us all.

AMI

[marshallgurl]

Well, this is my first official post, and I haven't introduced myself yet, but I wanted to comment about not sleeping. I have had problems for the last 3 or 4 years, and it doesn't seem to be getting any better. Some nights, I won't sleep at all, some days I want to do nothing but sleep. They diagnosed me with Chronic Insomnia, but I can't seem to get a doctor to give me anything except Mirtazapine, which doesn't work. I'm a veteran so they are extremely leery to prescribe anything that could be "habit forming". So i'm as frustrated and awake as everyone else. But I will say that 100mg of Benadryl does help a little, not much, but anything that could help, i'm willing to try. Now it's time to try and sleep, just got off work, so good night to all.

Sarah

[kmpower]

Hi,

I never had sleep problems until I started the beta blocker. I didn't want to stop it because it helped the tachy episodes, but I would just be awake, period, even though I was sleepy. It didn't seem fair.

We tried different BBs and doses, but finally the pharmacist suggested taking it just before I went to bed. I would fall asleep before the BB hit, but it would still prevent a night tachy episode. It isn't perfect, but it is the best I have come up with for my system.

Good luck.

OLL

[Guest tearose]

Welcome Sara from W. VA!

I am so in need of solid sleep. I fall asleep so quickly but wake up too many times. I think I am about to try sleep hypnosis next. Anyone do that?

[stephanieogan]

I have tried just about every combination of "sleep aids" but I can continue to stay awake all night. Even with the ambien. Last fall I had a doctor prescribe melatonin for me. There are actual scientific reasons that our bodies are not producing enough melatonin, it goes right along side the seratonin. It seems that many of us are taking some sort of antidepressant along with our other meds. Anyway I started taking the melatonin and I found that it made a HUGE difference. I can sleep for about 6 hours at night with just the melatonin. I started off taking 9mg per night, but now I am up to 12mg per night. You can buy melatonin over the counter at most drug stores for about $7 a bottle. I get mine at Walgreens, but it is in many other places as well. You might want to give it a try, or ask your doctor about it. I can not believe how much many I spent on prescriptions that made me feel hung over the next day and how many years I spent with barely any sleep. Good Luck!

[pamyla]

I've also had problems with insomnia for the last couple of years. Just recently I had my hormones checked and it was discovered that my progesterone was ridiculously low. I've started on a compounded progesterone cream and I have been sleeping really well since I started it. It's been a stressful month, so I feel like it is working Just hoping it continues.

Pam

[masumeh]

For me, this got much worse when I started midodrine. To help, my doctor suggested going on the tred mil for 10 minutes before bed, followed by a soak in warm water, and straight to the sheets. Well...he said that the walk would burn the adrenaline out of my blood...and the warm water would relax my muscles. I have never had the end-of-day gas for this though. Maybe if I tried it, it could actually do me some good.

Hope you find some relief soon. It's really cyclic to be too tired to sleep...I mean, it just doesn't go away because you don't get enough rest to recover...and the non-sleep in bed turns into psyc-based insomnia really fast.

Ok, trying to edit in again....the one thing I tried that did help was a simple regular strength Tylenol, 1/2 hour before bedtime. It relieves the aches, and some of the wierd tightness in my body and head.

[roxie]

I've had this problem my whole illness which is 9 years. My dr would never let me use sleep aids though, the only things that have helped me is a lukewarm both and then laying in bedd doing deep breathing exercises for at least 15 minutes

[runningshoe]

Ambien helps me and these days since I have IC pain I use ativan.

P.S. to I hate bananas - I love that song "Jesus take the wheel." I listen to it and weep these days!

[lavender]

thanks so much for all the replies! sounds like sleep issues are very common in POTS.

Sheridan, I did have my cortisol tests recently. It was high. I did a CT scan and the adrenals look fine. Other tests don't show an adrenal problem, so my doctor is thinking it's no big deal. Said we could test it again next year. It may be no big deal, but I was a bit frustrated that he isn't interest in testing it more often. I'd kinda like to know if it's a chronic thing or if it was just high at that time.

I do use melatonin, like you mentioned Stevie. I have a lot of trouble sleeping the week before my period. I am awake til about 3 on those nights. I started using melatonin just on those nights and it's helping a lot! I only take a 1/2 mg. with it I can be a sleep by 12 or 1. It doesn't seem to help though on the nights of "wired tired" or when my heart rate is high, even at higher doses.

I did use progesterone cream for years. It helped a lot with the hormone week of insomnia. It slowly stopped helping though resently. So I am giving it a break and using the melatonin.

I just need to figure out what to do on the other nights, when my body is overly tired and can't mellow down.

[gwen]

i have always had a problem sleeping at night. my father was like that too." an old wise friend told me some people are just wired that way and the best thing to do was not fight it. easier said then done". the world is moving so fast these days that it is harder for those of us that need a slower pace.

the last two nights i have woke up with these strange creepy crawly feeling in my arms. it takes about 1.5 hrs to go back to sleep. any body else have a suggestion?please?Thanks

[Donna F]

Sleep what is that?? Ha, no I have had sleep prob for yrs. there has been times i wouldnt sleep for a wk or longer. But it has gotten worse since they put me on midrodine in the hosp now they want to double it, yea right. But i have been on Xanax 2 mg, which would put most people out cold but been on it for 20 + yrs, ambien is ok at times but it seems when i take a sleep aid i wake up after 4 or 5 hrs feeling real yuk and groggy. But I thought about trying the ambien cr, anyone tried that? I took a med my friend gave me last night it is an antidepressant called elavil ( amitriptyline), and it knocked me out but it is the next night and i still feel like crap. So basically it works but u are non functional the next day. So guess most people though can take something like Xanax or Klonopin at night and sleep, so if u havent tried it do so, well talk with ur doc, some r reluctant to prescribe addicting meds, but hey most of us will be on them till dooms day anyways so i take mine, as i have major anxiety prob.. Also a med i took in the past if they wont pres those is vistaril,it will knock u out too. So hope something works i know how it is. Also does anyone have headaches with the midodrine, doc says it aint that but i have never had migraiines till got on it, so something is wrong.

Donna