Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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What causes symptoms experienced after sleeping?

Discussion in 'Sleep' started by lauluce, Nov 18, 2016.

?

do you experience symptoms after waking up which are different to the usualsymptoms of your disease?

Poll closed Nov 28, 2016.
  1. Yes

    6 vote(s)
    60.0%
  2. No

    0 vote(s)
    0.0%
  3. My usual daily symptoms worsen temporarily after waking up

    7 vote(s)
    70.0%
Multiple votes are allowed.
  1. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    Hi. Lately, my biggest problem with ME are the symptoms that arise after waking up. I'm talking about raised heart rate immediately after waking up, before even standing up, dizziness, feeling lightheaded, muscle weakness, shortness of breath, and difficulty thinking. The severity of the symptoms seems to increase the longer the sleeping time is, for example they are worse if I sleep a 1 hour nap than if I sleep a 2 hs nap, and in the morning after sleeping 7/8 hours they are much much better. This symptoms progressively improve as the time after waking passes, until they get to a minimum after two ours (I've got some form of some of those symptoms at other moments of my day). I was surprised to read a very precise description of this on a text which a user of this forum referred me to, which I think is from a trustworthy source (Open Medicine Foundation). http://www.openmedicinefoundation.org/what-is-mecfs/
    The interesting part of the text reads as follows: "But it also has other symptoms, such as waking up feeling drained or like you have a hangover. Most of these patients take more time (up to two hours) to transition from sleeping to awake activity"
    Another piece of information I can share is that I take Clomipramine; and despite it is clearly not what causes the symptoms as I had them before taking it or taking any other medication, I clearly worsens them. I consider that taking in account the physiological changes that this med causes could shed some light on what the causes of the symptoms are. According to Wikipedia, which cites various sources "Clomipramine is a highly selective (~200x over norepinephrine) inhibitor of serotonin reuptake.[31] It is also an antagonist/inverse agonist at the histamine H1 receptor, the muscarinic acetylcholine receptors and the α1adrenergic receptor.[31] These last three actions likely contributes to its adverse effects.[31]"
    My questions to you are the following:
    • do you experience this situation? what are the details?
    • are your "after awakening symptoms" related to the amount of time you sleep before waking up?
    • anybody has any information regarding the physiological causes of this "after waking up" symptoms and/or any text related to the issue?
    Thank you all, I expect we can get some useful info on this
     
  2. Mij

    Mij Senior Member

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    • do you experience this situation? what are the details?
    • I voted on the last one.
    • are your "after awakening symptoms" related to the amount of time you sleep before waking up?
    • not really, it depends on the quality of sleep. Sometimes I get 5 hrs of deep restorative sleep and wake up feeling ok, other times I sleep/wake all night for 8 hours and wake up feeling terrible- heart racing, shaky, pressure in my head, sore/ achy, sore ears/throat/glands
    • anybody has any information regarding the physiological causes of this "after waking up" symptoms and/or any text related to the issue?
    • when my immune system is affected it negatively affects the type of sleep I get.
    You might find this interesting:
    http://www.the-aps.org/mm/hp/Audiences/Public-Press/2016/56.html
     
    lauluce and Old Bones like this.
  3. Valentijn

    Valentijn Senior Member

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    I always get a congested/runny nose when I wake up in the morning.
     
    lauluce likes this.
  4. lansbergen

    lansbergen Senior Member

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    When I forget to take my immunemodulator I have a huge hangover the next morning.
     
    lauluce likes this.
  5. TiredSam

    TiredSam The wise nematode hibernates

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    Absolutely no point in having a conversation with me when I've just woken up. Just give me some of that breakfasty stuff and that hot thing out of the thing.

    So yes, brain fog on waking, slowly clears, takes about 20 minutes or longer. Also often happens during the day if I have a lie down and fall asleep, when I get up again I'm more foggy than when I lay down, especially when I come home from work and lie down, I often wake up 90 minutes later very foggy. I've recently got into the habit of making myself continue to lie in bed for 15 minutes after I wake up, allowing most of the fog to pass before I try standing up and interacting with the rest of the world.
     
    lauluce, erin, Webdog and 1 other person like this.
  6. Old Bones

    Old Bones Senior Member

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    I answered both "yes", and "my usual daily symptoms worsen temporarily", although I'm not sure "temporarily"
    is the correct word to describe several hours out of a day that usually starts later, and ends earlier, than the norm.

    I awaken every morning feeling absolutely dreadful -- much worse than when I went to bed the previous evening. I feel like I've run a marathon overnight, and that people have been bashing my body with heavy mallets, and dislocating my joints -- especially my shoulders, if I did much using my arms the previous day. I have a screaming headache, and tinnitus. So, I lie in bed, suffering in silence, and waiting for things to gradually improve.

    One thing I've noticed is this . . . If I wake myself up with an alarm clock earlier than I would otherwise be awake (very rarely, and only for medical appointments), it takes me just as long to feel awake as it would have if I'd let myself sleep until awake naturally. It seems my body has its' own schedule, and can't be pushed to deviate from it. This is probably why I reacted so badly on two occasions to the sleep restriction protocol recommended by "experts". And, this is yet another reason to be concerned about the plans to help young ME patients, not only using GET and CBT, but also "sleep hygiene".
     
    Sandman00747, alkt, lauluce and 4 others like this.
  7. redrachel76

    redrachel76 Senior Member

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    Yesm Yes exactly the same here!

    That always mystifies me - why the body has it's own late schedule and refuses to deviate. It's like the body wants to be asleep in the day.

    I've also never understood why I wake up feeling worse than when I went to sleep.
     
    alkt, erin, TiredSam and 1 other person like this.
  8. TiredSam

    TiredSam The wise nematode hibernates

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    I hardly use my alarm clock now, if it wakes me up before my body would have woken up of its own accord I often feel much worse.
     
    Old Bones likes this.
  9. erin

    erin Senior Member

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    • do you experience this situation? what are the details?
    Yes every morning 5a.m. and 7 a.m. ish.
    I have palpitations and feeling unwell in a way that something so bad happened to my being my body. I can't really explain but kind of sick feeling. As if I am in the beginning of a very bad, long lasting flu coming or I have survived the terrible flu and this is the day after that I am weak and so tired.
    And then I had to go to the toilet and I'm better after no2 (sorry about the detail) I feel better. Just reclining, sitting in bed sipping water helps a bit too.
    • are your "after awakening symptoms" related to the amount of time you sleep before waking up?
    I sleep huge amounts every night. It is not a nice refreshing sleep though. I wish I could sleep less. So the amount of sleep is more or less same everynight, therefore the answer is "no".
    • anybody has any information regarding the physiological causes of this "after waking up" symptoms and/or any text related to the issue?
    Unfortunately I don't have any info about this. I maybe search about this in the past but I can't remember finding any articles that gave any real info.
     
    lauluce likes this.
  10. TiredSam

    TiredSam The wise nematode hibernates

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    Me too! Seriously, thanks for mentioning it, I thought it was just me.
     
    lauluce and erin like this.
  11. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    so sad to hear your story... yes, we suffer in silence... may one day we find our ANSWER
     
    Old Bones likes this.
  12. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    what immunemodulator do you take?
     
  13. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    fell no shame talking about number two, its just a natural part of human life. and take this in mind: a potential treatment for ME is faecal transplant... if confirmed to work somehow, I wouldn't think it twice
     
    erin likes this.
  14. lansbergen

    lansbergen Senior Member

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    Levamisole
     
  15. purrsian

    purrsian Senior Member

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    At the moment, I'm always worst in the mornings, although sometimes it takes about half an hour to kick in. This is partly due to my POTS (lower blood volume in mornings). But I've been through some stages in my ten years of illness where afternoons are worst, so I was doing all my activity in the mornings and sleeping in the afternoon. I go through stages, so I try to inform my loved ones when my best/worst times currently are so they know when to ring.

    Dehydration can make you feel worse in the morning and we all seem to be so sensitive to any changes in our bodies, so ensure you drink plenty before bed and before getting up. I also drink a bit whenever I wake in the middle of the night. Doesn't fix it, but it helps me recover quicker I think.

    Oh and it's just my normal symptoms are worse - no extra symptoms that only occur in the morning.
     
    erin likes this.
  16. redaxe

    redaxe Senior Member

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    You can try asking a doctor for Pyridostigmine - this drug can help with orthostatic intolerance and is very helpful for some people.
    You should also not eat meals with 12 hours of waking up. So your dinner should be finished by 7pm if you wish to wake up at 6-7am in the morning. Dinner should also be a light meal. Eat a heavier meal in breakfast/lunch - this may not be easy but our bodies are not designed to eat large meals before sleep as is now common in western countries. Recall our grandparents they would always eat dinner around sunset and that is the way it has always been.
    Eating takes a lot of energy which results in poor sleep. Eating large meals before going to bed is essentially inducing jetlag if you have to wake up early the following morning
     
    lauluce likes this.
  17. redrachel76

    redrachel76 Senior Member

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    YES!! Same here.
    I don't have the level of pain described by you and others or the heart rate change.

    I do have more pain but it's not bad. After I wake I get increase of massive CFS exhaustion, brain fog, heavyness, weakness, Flu-like exhaustion without any temperature. I sometimes hate going to sleep just because I am dreading how I will feel after I wake up.

    Since it might not be POTS in me, as I have no high heart rate...I wonder what causes this worsening after sleep.
     
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  18. TreePerson

    TreePerson Senior Member

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    Usually my head is temporarily worse e.g. light-sensitive etc but my body is stronger. In recent years if I manage to sleep well and completely naturally I experience weakness and pain on the right side for the whole of the following day.
     
  19. Sandman00747

    Sandman00747 Senior Member

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    Every morning for about the last 2-3 months I wake up now feeling like I've been severely beaten in my sleep. And the longer I sleep the worse this feeling is. It seems to take at least an hour to shake most of it off. And this has nothing to do with PEM as it has no relationship to my level of activity the day before. It seems to involve most of my muscles and

    joints and a stiffness that is worse than the tin man must ever have experienced! And I have suffered from this illness for over 20 years. Just when I thought I've experienced virtually every possible symptom this has now surfaced. This disease has totally tested my sanity and some days I feel like I'm failing the test.
     
  20. ChrisD

    ChrisD Senior Member

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    @lauluce I don't take any medication for sleep, just Zinc, Magnesium, B6, Biotin and some L-theanine sometimes and tend to sleep from around 11pm-3am then wake up thirsty and needing the toilet, I usually get back to sleep okay then sleep from around 3:30am - 7am and wake up with the birds. I find that if I get up at this point, despite being unrefreshed and energy less, i feel better than if I put my head down again and wake up say 9/10am. In this case, I have very bad muscle weakness, dizziness, coordination issues, my muscles are extremely stiff and I don't feel like I can breathe properly. Some people have suggested Sleep apnoea but even if it was I wonder if it is caused by the underlying fatigue and virus/pathogen?
     
    lauluce likes this.

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