August 8th, 2018: Understanding and Remembrance Day for Severe ME
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
Discuss the article on the Forums.

Anyone Like Me In The Morning?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Machair, Sep 21, 2012.

  1. Machair


    Chelmsford, England
    Does anyone experience this?-

    I wake up drenched in sweat and feel butterflies in my stomach. I try to calm down but nothing works and sometimes I will have to use the bathroom with urgency with the bowels affected rather like you might before a dental appointment you were dreading. This improves during the day so may well be linked to cortisol as it is known that ME sufferers are also low in this hormone.

    Does anyone experience these symptoms and are they related to the orthostatic intolerance? I was suffering badly with that yesterday when out shopping and this morning had the above situation I described.

    I am not like this everyday- just when my symptoms are flaring and sometimes I am dizzy too in the morning. Being 52 and peri-menopausal may be a factor though I have had the above symptoms for years. Can anyone tell me if they recognise this morning pattern?
  2. Sparrow

    Sparrow Senior Member

    Yes. I have much of that as well. And am likely far from peri-menopause myself.

    I sometimes wake super sweaty (or often, break into the super sweat once I roll over). My heart rate is extremely fast at these times, and can be easily felt/heard. I'm not emotionally worked up at all at the time, so it's a purely physical thing.

    I have wondered if there was an OI connection, since as I mentioned above, if I wake up and lie still, it seems okay. If I roll over, the large and sudden change in position after lying still so long often triggers the sweat to break out. I've been experimenting with moving my legs around up high and clenching and unclenching my muscles before I actually move the rest of my body, to try to get the blood moving around from wherever it has pooled overnight. It seems to help, though sometimes I still roll over in a half-asleep state and get sweat-drenched.

    My cortisol just after waking was tested, and was actually off the charts high at that time, so that could be a factor as well. It drops down to a more normal range within about an hour after waking, and then drops to the very low end of the range for the rest of the day.

    There have also been some suggestions (e.g. Dr. Myhill) that a cortisol response to hypoglycemia overnight could be involved. I think that's possible too. I try to avoid eating anything too sweet at night (and at most times, really), especially before bed, just in case. I also try not to go to bed hungry.

    Cortisol could be involved in any of those ways - in response to an OI crisis, as part of a natural cycle that's off, or in response to a drop in blood sugar. Either way, I'm quite certain it's a part of this illness, because it began very suddenly for me coinciding with my drop in functioning. And you're not alone it it.
    kisekishiawase and SOC like this.
  3. justy

    justy Donate Advocate Demonstrate

    Hi Machair - sorry to hear you are having these problems - i had this kind of issues a couple of years ago and they have largely resolved. I always suspected mine was due to cortisol issues as well. At one point i would wake at 4 -5 am every day and need to open my bowels and be really sweaty and disorientated. I dont know what has helped specifically. I have been seeing a medical herbalist who has helped a lot with immune and anxiety and hormone balancing and now working on adrenals.
    Hope this resolves soon.
    Take care, Justy x
  4. Tammy

    Tammy Senior Member

    New Mexico
    I do wake up with mild anxiety which gets better as the day wears on......I always wondered if it was related to the cortisol/blood sugar imbalance or the fact that I am worried about the days events..........whether or not I can handle them. Perhaps it is a combination of all of the above. I have the same experience as sparrow in that when I roll over in bed it instantly causes a reaction where my body gets flushed and sweats. I am also peri-menopausal.
  5. SOC

    SOC Senior Member

    I had similar symptoms but very much milder, thank goodness. I do have a simple thing to try -- it's helped me a lot.

    I heard that some people with low blood volume or diabetes insipidus (not the diabetes you usually think of) wake up in the morning dehydrated or with seriously low blood volume causing low BP and/or tachycardia. Low BP and/or tachy can cause dizziness, nausea/vomiting, diarrhea, sweating, anxious feelings, shaking, and probably more. :eek:

    Something to try to see if low blood volume might be contributing:
    1. Immediately before bed, drink about a pint (0.5 L) of electrolyte drink (unsugared is best). The trick is to drink the right amount at the right time so that you don't have to get up in the night to pee, but have extra fluid in your body in the morning.
    2. Before you get out of bed in the morning, chug another pint (0.5 L) of electrolyte drink.

    I need another qt (1 L) of electrolyte drink within the next couple hours, but that may be just me. :)

    1. Don't rush getting up and dressed -- take everything slowly Give your body time to adjust to being vertical and absorb more fluid.

    2. Don't shower in the morning when your blood volume, BP, and HR may be wacky. Find a time of day to shower that suits your body better.

    I imagine everyone needs to adjust the amount of fluid for their own body. I actually need about 0.75 L at bedtime and first thing in the morning to have me working well.
  6. Machair


    Chelmsford, England
    Thank you all so much who have replied so far. I hope you are doing ok Justy- the herbalist sounds good.

    SOC this is exactly the situation and this is what I have found helps too, so I am convinced that low blood volume is the issue. I crash after long haul flights - dehydration I am sure, but I have to fly as one of my sons lives in the US. I also crash in hot weather and during my period as well, so it does indicate a low blood volume issue. I will try to do exactly as you say and thank you so much for being so kind for detailing what you do.

    Sparrow - yes too many sugary carbs are a problem. I have changed my diet to be higher in protein and lower in sugars. When I first became ill in 1996 The UK ME Association recommended carbs for energy, but this advice has now been changed. I used to eat sweets and mints to keep me going- a bad mistake as my blood sugars were all over the place.
  7. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I used to get that problem quite a bit (except the bowel part). I still occassionally do get it. I personally think its something to do about my abnormally high noradrenaline (I previously put it down to some kind of hormonal issue till saw the results of my 24 hr noradrenaline tests). (thou I did used to get hypoglycemia too).

    Thou when I had that symptom happening the most, my cortisol was out of normal range (low).
  8. john66

    john66 Senior Member

    The feeling I get when I wake at 4:00am is like a bucket of cold water has been dumped on me. At this point, I know sleep is done for the night, and try not to let it upset me too much. I had a salivary cortisol test, and it was high at night, low in the morning, then all over the place. I am guessing the root cause is HPA dysregulation. J
  9. SOC

    SOC Senior Member

    Any hope you can get a doc to let you try Florinef to see if increasing blood volume helps the situation?
  10. xks201

    xks201 Senior Member

    fix your hormones.
  11. Healthy Someday

    Healthy Someday

    If I haven't eaten anything before bed, like last night, I wake up really hypoglycemic, and probably with low blood volume. I have to eat something ASAP and drink salty water or I am in for a hard, hard time. My HR this morning was at least 160 if not higher. I also took a Zebeta, which helps quickly too. I am SO frustrated because my HR is so connected to my blood glucose level. My fuzzy head and fatigue is too but the blood sugar/heart rate thing is the worst. Also frustrating is that sometimes I have what are the traditional symptoms of low blood sugar but it isn't that low. I've had the traditional low blood sugar too and that happens quickly, like this morning, and usually when I exercise (when I've tried). I'm now scared to exercise without something sweet right there with me. Taking Cortisol has helped but it is the dysfunction of my HPA Axis that is at the heart of this whole thing so I've got to heal that area. Trying to fix my methylation at this point to see if it helps. I'm sleeping better these days because of L-Theanine. It also helps with the anxiety during the day from high HR.
  12. Navid

    Navid Senior Member


    how do you fix the hormones. what types of tests s/b done. what is the best type of doc to work with. i have these horrible morning symptoms too....ruin my day each and every day.

  13. kisekishiawase

    kisekishiawase sad

    southeast asia
    its really interesting. this happens to me too. ive been thinking to get cortisol level checked but which one is better saliva or blood? or other?
    also i read that dhea has correlation to it. also glucose too.
    its hard to find some lights to this issues :(
    also have you guys tested for digestive issues? or experience reflux or whatever. it has strong connection to each other.
    digestive and neuro can effect each other.
  14. Aerose91

    Aerose91 Senior Member

    Not sure if anyone is still checking this thread but a hormone imbalance is almost definitely your problem. I dont know enough about OI to talk about it but trying an electrolyte drink WITH salt before bed would be worth a try ( if you have weak adrenals your aldesterone production is low which regulates salt so a bunch of potassium will crash you unless you counter it with salt)

    I get the exact same thing and mine is because of low blood sugar due to weak adrenals and pancreas damage so my cortisol and insulin are low. After 2-3 hours of sleep im getting pounded with sweats, anxiety, shaking, heart pounding, crazy nightmares, tension etc.. from a huge adrenaline dump.

    If your body cant keep its blood sugar up then it releases adrenaline as an emergency. Try eating a decent sized snack right before bed- i would suggest a protein and fat because of the slower digestion, just be careful with carbs. Then, if you wake up a few hours later eat as soon as you can. Usually that gets me another hr or two of sleep.

    It sucks really bad but the less you let yourself crash low like that the quicker you will heal and not have to deal with that anymore.

See more popular forum discussions.

Share This Page