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Anyone Else Feel Like Death When They Wake Up?


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for the past 2 weeks when i wake up in the morning i am so sluggish i can bearly move. like my blood flow has slowed down so much that im practically dead. it takes me a few hrs to beable to move around properly.

during this same 2 weeks ive had more palps, leg pain, stomach pains, tremors, breathlessness and several other things.

i was wondeing if anyone else gets like this when waking up?

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Oh, definitely. Some mornings are worse than others, especially when I'm going through a 'down period' that can last for days or months. I have to have a cup of coffee to get myself halfway awake. That's all the caffeine I drink, but I couldn't do mornings without my one cup. Have you tried it? It really helps some people, and others can't tolerate even one cup of coffee....then I would try green or black tea. Less caffeine, but hopefully still some benefit.

Don't worry, you're certainly not alone!

Cheers,

Jana

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Guest tearose

Yes, me too. It takes my careful time and effort to get up and to the kitchen to begin to come to life.

This includes coffee.

I have to be careful with light too. I need hours to get my bp up, my body up to functional level, wash, compress and dress.

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Yes and sometimes all day! The best advice I have is to drink a big V8 before getting out of bed. ( Mayo doc told me this as I would "gray out" on my way to the bathroom).

V8 has salt and potassium so it is good for potsys

Thankfully my husband usually remembers to get me one. Huge help. I also no long drink coffee. I seem to do better with green tea thought the AM-

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Yess!!!!! All the time, every morning, since I first experienced symptoms 15yrs ago. It made it incredibly difficult to work, cause it'd take hours before I'd be able to "push thru" better, and now I can't push through it anymore, and it'd be impossible to work. Waking up early is the worst! My symptoms are herendous and I feel after effects all day. It always was if I sleep later and wake up naturally it'd be better, I'd still have my daily symptoms, but it wouldnt be so tortorous. Now though, since I've been really sick, even waking up late, I feel worse. But it's still 10x worse than that, when I wake up early in the morning/before I'm ready to naturally wake up. The nausea, lightheadedness/dizziness, and fatigue are the most awful at that time. I havent' found anything to help it yet. Curious to hear other's suggestions....

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Oh My Goodness, Yes, Yes, a million times over, ...day after day for the past 5 years. It used to be just a few hours but has gradually come to last into the evening and I feel so useless. Sometimes I think that I just can't survive another day of this. But life goes on. A brother visited me a few days ago and I was up only about 1o minutes when I had to lie down again. He said, "Are you ready to rest so soon?" I didn't have the energy to answer.

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Yes, the daily push to get up. The old ANS has trouble adjusting from one state to another (wake sleep or sleep wake).

But, I must add, that a few years back the endocrinologist increased my dose of thyroid hormone, and I do not feel quite as dead...I was a bit hypothyroid.

I suspect this is the way I will typically feel, going forward. If I must be somewhere, I push.

I have noticed that I can help myself somewhat during episodes in which I become exceptionally weak and tired by ingesting caffeine in one form or another...chocolate, coca cola. It works for me because I do not do it all the time. I use it as a stimulant. I do not use this in the AM, though, only during bad episodes during the day.

Conversely, when I'm "wired but tired" and cannot relax enough to sleep, I'll pop a small klonopin (benzodiazepine). I don't take them every day either, so they work for me.

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Yes count me in too. The instant I open my eyes is the worst moment of my entire day - every day since my knee replacements almost 2 years ago. I have pain in every single part of my body. I am very, very stiff and sore. I move so incredibly slow it takes a seeming lifetime just to get to the bathroom -- I move to the living room and sit in a lazy boy chair and pray and try to remember that this part of the day does not last forever so I try to count blessings and buck up. I drink one cup of coffee and on the days I work -- by the time I make the 1/2 hour drive and maneuver out of the car into the workplace I am just about getting good -- and then I'm okay. It to me sounds like a lot of drama -- but I live it everyday and it IS dramatic....before I knew I had that Ehlers-Danlos Hypermobile Type I used to be so terrified about it all. Now I know what it is at least. What is so very difficult to figure out now is the dysautonomia as it effects my activity tolerance. Four hours at the work place and then it's an absolute mandatory time of 2 hours to lie down to equilibrate I guess from standing for 4 hours. I barely feel living as you say when I crash into the bed -- but after a couple hours I seem to be able to get a few more hours of activity at home in a day -- and go for a fitness walk. Now though my blood pressure is outrageously out of control with wide swings.....so that could be contributory to me feeling nauseated and lightheaded even in the good parts of the day -- I have faith that the doc's will be able to help me here eventually -- till then I guess it's trial and error with meds etc..

Thanks for sharing your story

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I usually feel okay when I first open my eyes, but after a few minutes in bed I feel more and more sluggish. It takes a few hours of being upright but then I start being able to function without the nausea and fatigue dominating my thoughts. By the end of the day, I'm pretty sore and achy all over. Overall, I find that I feel better if I push myself to be upright asap in the mornings (with salted fluids and compression of course). Not a fun way to wake up every day, but I try to keep in mind that the worst of that "hungover" feeling will pass in a few hours.

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Me too... totally awful in the morning. I'm going to try the V8, kayjay... sounds like a good quick boost. What I do that has helped is gentle stretching before I even lift my head off the pillow. I stretch my arms over my head as far as I can and try to lengthen my body. Then roll on my side, top leg bent, and reach my top arm back behind me - it stretches the spine and really seems to help my body prepare to get up. Still tough, but better...

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It takes me at least 3-4 hours after waking to get any kind of energy. I really don't feel energized until after supper. I just got diagnosed at Vandy last month and my husband told the neurologist the same thing. The doctors offered no explanation why I feel so much worse in the morning than later in the day.

Because of the tachycardia, the neurologist advised me avoid all caffeine, which I was addicted to because I feel so tired all the time. I've tried the decaffeinated coffee in the morning, but it's not giving me the boost of energy I need. Now, that I see others consuming caffeine, I think I will add my caffeinated coffee back in the morning. Without it, I'm a zombie!

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It takes me at least 3-4 hours after waking to get any kind of energy. !

Like Bev Ray it takes me about 3 hours to do anything in the morning except take meds, drink decaf coffee and have something light to eat. I just lie around until I get past that time. Then I have some energy on a good day until about 5pm -- this is when I go out if I'm feeling good enough, the period between noon and 5pm -- about 5pm I start to become very bothered by excess stimuli -- just want to shut the world out. This usually passes after a few hours. Here I sit at 8.30 pm and am about to go have my shower now -- and wash my hair -- because I have the energy.

That's a good day.

Some days I just drag myself around the house all day.

Dr Blair Grubb wrote in one of his papers that having bad times and good times in the same day are common for some people with POTS. Not his words exactly of course. I read the paper about 4 years ago now. He also said that doctors should realize how pots impacts on every part of a patients life. Work wise, family wise, money wise etc. I think he also said the best medicine is hope. Not sure. But I think he was the doc that said that. I do know that when I feel hopeless the world and my ability to cope seem very black. But then, sometimes only a few minutes later, I can feel very hopeful. I'm not sure if this is a sign of resiliance or madness -- this back and forth feeling of hope, no hope, hope etc. LOL

blue :P

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Unfortunately, I know why I feel like death-----some days it would be very welcome-----every morning. I have an untreatable, genetic, circadian rhythm disorder called DSPD (delayed phase sleep disorder.) Normal morning times for everyone else are the middle of my "night" and my body resists anything but sleep. I am in the middle of another attempt at a shift, to get ready for the school year, but have hit my shifting threshold; it won't go backwards from here. Imagine being forced to get up at 3 or 4 am every day, that is what anything before 8:30 am is for me -_- . There is a natural circadian rhythm to heart rate and BP, that is why so many heart attacks occur in the morning; people ask their bodies to do what they naturally resist and it overtaxes the system. The tired but wired feeling for me is a combination of my sleep disorder and POTS. DSPD patients cannot sleep until their body says "sleep," no matter how little sleep we've actually had, so we lay there staring at the clock. Couple that with all the extra norepinephrine from POTS and there is no way to turn the brain into sleep-mode. I have found that since my BB destroys the body's natural melatonin, that I sleep better now than I ever have; I take supplemental melatonin at the correct circadian time and zzzzzzzzzz. Unfortunately, it doesn't help for mornings....as I sit here with a HR of 124+ and a BP of 122/101, waiting for the meds to kick in, desperately attempting to keep my eyes open.

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Unfortunately, I know why I feel like death-----some days it would be very welcome-----every morning. I have an untreatable, genetic, circadian rhythm disorder called DSPD (delayed phase sleep disorder.)

The last sleep dr I saw thought I had that, along with increased drive to sleep, since I tend to sleep around 10hrs naturally, and also frequent wakenings. He sent me to a "sleep expert", who's also a neurophysiologist. Funny enough, that's who diagnosed the POTS. and we're now working backwards to re-look at the sleep issues. I had a 3rd sleep study done cause this guy wanted it done at his own lab. I never sleep during them so I dont know if it'll show anything different. But I figured I"d give it one last shot since they say this dr is so good, we'll see.. I wont get the results for another month or so.

I too found the melatonin did help me fall asleep a little earlier, but mornings were still awful even using light for 20min when waking. Did you ever try the light therapy? I didnt use a lightbox since they're expensive, but the dr said to try lamps w/o the lampshades.. didnt do anything though.. mornings were still awful and for me, they've just been getting worse year to year.

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I got the lightbox. It has to be timed precisely to be effective, and when I used mine it was at the wrong time and really screwed me up! I just try not to mess with my hypothalamus anymore. I don't wear sunglasses until noon, and keep all the lights dim from dusk till bedtime. My sleep doc also was one of the first to note something was physically wrong with me.

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Interesting. I just had my first sleep study, and it was from 10 pm to 5 am(why do they end at 5??). Anyway, they said I had no REM sleep during that time, and only slept for 2 hours and 45 minutes. I told them that almost all of my REM sleep at home is early morning, like 4-7 am, and they missed it when the study ended at 5 am.

This sleep pattern that most people are saying they have sounds alot like people that have Cushing's disease. Their circadian rythms regarding cortisol is backward. They secrete too much cortisol at night and that's why they get late day energy and can't go to sleep. And then we all sound like Addison's patients in the morning, with not enough cortisol to get us up and going!!!!!

So, has everyone here had their cortisol checked? Could we be cycling in and out of high/low cortisol? If so, we can hang it up because we'll never find a doctor who would understand all that!

Cortisol was the first thing I thought of when everyone says they wake up and then it takes HOURS to become a functioning human. Cortisol is secreted in the early morning hours to eventually wake us up, then it plateaus in the morning, and gradually declines through night.

By the way, count me in as having the same problem. I naturally wake around 7 am, but need a big glass of iced tea to get me somewhat awake. After lunchtime, I am mentally "functionable".

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firewatcher--- that's good to know about the lightbox. and ha, funny your sleep dr was the one to start noticing things too.

sue1234--the previous sleep dr I went to did the sleep study differently, since I told him not only do I not sleep during the studies, but typicallly sleep late anyway. He ordered it so that I could just go to sleep and wake up whenever I want, I think I didnt fall asleep till something crazy like 7am, and maybe slept til 9:00, then tried to fall back asleep again... I think I stopped it round 11:00. But maybe something to ask your doctor about if you or your doctor think it'd make any difference with the results.

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Yes. I think morning are some of the worst, as well as evenings when I get sleepy. When I wake up, I feel like my limbs are just stapled to the bed, seriously. It takes so much energy to just open my eyes. However, I also stop breathing in my sleep for periods of time, usually when I am having migraine problems...my mom also does so (and is sufferer of chronic migraine) and she told me stopped breathing in my sleep could make me feel weighted down in the mornings, almost paralyzed.

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Yes definately...One of my first complaints was how bad I felt in the morning.Takes at least a couple of hours to get to better level.

I feel like I am wading through treacle like, as you said, my blood has slowed down.

Sitting up gradually and avoiding any bending for the first couple of hours helps me and also moving around/going for a walk even though my brain says no.

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Yes mornings are what I dread, and if I have dizziness and vertigo this is when I am most likely to experience it. I can feel so ill I think I should go to the ER some days, but by the evening I can actually sometimes feel remotely human!

My BP readings are at their worst in the morning. Standing I can have 90/75 which doesn't show much blood flow is happening. This improves during the day with fluids.

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Sometimes it's like a night of partying without the fun of partying! ANS Hangover!

I am going to buy a case of V8 cans at Costco and try the morning trick of gulping that down and taking my meds. Currently, I take my meds with milk, lie back down for 30 minutes, and get up about 30% better than I was feeling.

That at least allows me to plod around and get ready in a bit better state. It'd be lovely if the V8 could help a bit more. You guys understand how a 30-50% 'improvement' in symptoms can make or break you sometimes. :rolleyes:

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