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Orthostatic Intolerance Worse In The Morning

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Machair, Feb 15, 2010.

  1. Machair

    Machair

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    For those of you battling with POTS and orthostatic intolerance does anyone else find this is a million times worse when waking up and trying to get up for the first time? I am having real issues with this at the moment. By the middle of the day when I have finally got going I am ok, but first thing in the day for about 3 hours it's awful. Not only do I feel like a zombie, some days I am dizzy with vertigo (actual room can spin) often I am sweating as well and my pulse shoots up when I stand.

    Does anyone else find a difference in the times of the day for this and are mornings always the worst? Any ideas how to help this?
  2. Sing

    Sing Senior Member

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    Yes, mornings are worse for me too and it takes several hours to clear out of the bulk of this issue. Anything to help with general health helps, like going to bed on time, or earlier, stretching enough in the evening, not doing the computer or TV for a few hours before bed (not that i have a TV). Eating a salad in the evening helps me feel better as well as taking in plenty of/enough salt. Certain night time meds could be adding to the problem if you haven't fully checked this out for yourself--what works and what might be causing some trouble.

    Good subject!

    Sing
  3. kat0465

    kat0465 Senior Member

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    Bad mornings

    I don't know what the heck happens at night when we sleep, but i feel so bad in the mornings,i literally feel like im dying! a couple hours and i get better.then usually by the evening is the best i feel, but then its time to go to bed again:(
    it's a vicious cycle,the only think i can think of is my Cortisol level is so low in the am( when it should be high) thats the reason for feeling sooooo Rotten!
    i long for a good nights sleep, And feeling good waking up:tear: wonder if i'll ever feel good again.
    kat
  4. FernRhizome

    FernRhizome Senior Member

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    I think what happens during the night is that we are in a "fasting" situation....so we dehydrate. If you look at Dr. Bell's blood volume work, he tests antidiuretic hormone along with blood volume. In a normal person with low blood volume ADH hormone should be sky high in the morning because it keeps a person from dehydrating, but in CFIDS the ADH hormone in the morning is not super high as it should be in light of the low blood volume.

    The best way to deal with morning OI is to drink a whole lot of fluids. Another thing I've found helpful at times is to drink some electrolytes before bedtime or when you wake up, as it helps maintain blood volume a bit. Mostly I just drink about three glasses of various waters and juices and liquid nutrition and wait until that helps boost my blood volume a bit. But I always have to take mornings easy until I get my fluid and calories up, and then afternoons are my little windows of activity.

    But one has to be careful, too, not to drink too much of electrolyte fluids as it can also raise blood pressure (though in some of us that's hard to do)...

    And of course a morning shower makes things worse!!!! ~Fern
  5. cfs since 1998

    cfs since 1998 *****

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    Mine is always worse after laying down for awhile. This could mean after sleeping or just after laying on the couch and watching TV for an hour.
  6. Carrigon

    Carrigon Senior Member

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    Today was a typical bad day for me. Loud neighbors woke me up at a quarter to eleven. It took me from that time, all the way till four in the afternoon to feel like I could take a shower. Nausea is big today. Seasick. I just took some ginger, hoping it will help.

    I have not been following my own advice on the garlic in the food, so I've been ultra sick lately. It's really hard to cut it out of your diet, especially when you want to eat something that tastes good. If I just ate plain white rice or plain pasta with just butter, but how often can you do that. Eventually, you want something else. But I really see how much sicker and weaker I am when I have the garlic in something.
  7. Tony

    Tony Still working on it all..

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    Melbourne, Australia
  8. FernRhizome

    FernRhizome Senior Member

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    Electrolytes are awesome but do be careful with them...especially with home brews....I looked into making my own at one point too! Homemade recipes are great. I also monitored my blood pressure daily when I used electrolytes regularly because if you have too much of them it can be problematic. When my BP started to go up I had to cut back on them. So enjoy them but with care! There was a recent NYT article on salt and its connection to health problems that was sobering......~Fern
  9. Machair

    Machair

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    Thank you all so much for your replies which have been really helpful. I was also wondering what your orthostatic intolerance symptoms are that are worse in the mornings. I always wake up with a dreadful headache and a feeling like I couldn't get up even if there was a fire in my house! I usually have something to drink and wait until my blood pressure comes up a bit as it is normally very low, and then I slowly get up and have breakfast before having a bath. I can't shower as I can't stand up in one. My pulse when I stand in the morning shoots up by at least 35 and I can get really dizzy and occasionally even have spinning vertigo. If I am really bad it will affect my stomach and adrenaline rushes send me off to the bathroom in a hurry, but luckily not too much lately. Generally it's like waking up with the flu every day-only the flu never goes away.

    I do get more human as the day goes on and can sometimes even feel normal by the evening-until the next day when the trouble begins again! This pattern has been with me for 14 years, is anyone else having these symptoms that peak in the morning?
  10. Jenny

    Jenny Senior Member

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    I have this too Machair. I've been told that it's 'toxins' that build up in the night. But the whole idea of 'toxins' is much too vague for me.

    When in a relapse every morning when I wake up I think I'll never be able to get out of bed. I have to remind myself that I think this every morning and yet usually I can eventually, if only for a few minutes.

    I've often thought that perhaps if I drank water during the night I'd be better in the morning - but then I'd be up all night going to the loo!

    Jenny
  11. Tony

    Tony Still working on it all..

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    Has anyone tried drinking a glass of water with sea salt just before bed? I've not tried it as the Aquaforce I used to like so much would keep me awake at night if I drank it after 5pm or so.
    I'm wondering if this might help how you would feel in the morning...
  12. Machair

    Machair

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    I don't know about that Tony- it's an interesting idea, but certainly I try to keep my blood pressure up at night by drinking regularly throughout the day. Coconut juice is high in electrolytes so I have that in a flare as well as V8 juice and Nuun tablets. Do you feel bad in the mornings too? What is Aquaforce?
  13. richvank

    richvank Senior Member

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    Hi, all.

    I agree that it is likely that the reason the orthostatic intolerance is worse first thing in the morning for many PWCs is that the diurnal cortisol variation is abnormal in many cases. If you want to check that, it is possible to get a 24-hour saliva cortisol test, even without a doctor's order. You can order the Saber Science test from www.directlabs.com , take the saliva samples yourself, and send it in. They will send the results directly to you. This panel is the most complete saliva cortisol test, including samples every four hours around the clock. I think it will answer the question of whether your diurnal cortisol variation is shifted, and whether your cortisol levels are low, especially in the morning. If so, I think that will give you part of the answer.

    In the GD--MCB hypothesis, the disruption of the normal cortisol levels and variation is caused by dysfunctional secretion of ACTH by the pituitary, due to glutathione depletion there. This occurs because glutathione is needed to control the redox state of cysteine molecules in the synthesis of secretory proteins.

    Another part of the reason for the orthostatic intolerance in general, not just in the early part of the day, iis low total blood volume, another common feature of CFS. This results from a usually mild case of diabetes insipidus (not the same as diabetes mellitus, which involves blood sugar and insulin). Diabetes insipidus, as another poster has noted, is caused by insufficient production of the antidiuretic hormone. In the GD--MCB hypothesis, this is caused by glutathione depletion in the hypothalamus/pituitary. The biochemical mechanism for this problem is the same as for ACTH.

    Compounding these problems is diastolic dysfunction of the heart, also commonly found in CFS (at least by Dr. Cheney, who runs echocardiograph studies on all his CFS patients). This results in low cardiac output of blood. In the GD--MCB hypothesis, this is due to glutathione depletion in the mitochondria of the heart muscle cells. In this case, the problem is partial blocks in enzymes in the Krebs cycle and the respiratory chain, which occur because the levels of oxidizing free radicals are allowed to rise when glutathione is low.

    As you can see from the above, all three of the factors that I'm suggesting are involved in the orthostatic intolerance in CFS, especially early in the day, are ascribed in the GD--MCB hypothesis to glutathione depletion.

    We've found that in order to correct the glutathione depletion in CFS, as in autism, it is necessary to lift the partial block in the methylation cycle. People are using several variations of a treatment to do that. These include the types of things that are done by the DAN! (Defeat Autism Now!) doctors for autism, Dr. Amy Yasko for autism, CFS, and adult neurological disorders, freddd's protocol as described in the B12 thread on this forum,andr the Simplified Treatment Approach that I extracted from the full Yasko treatment program. The last mentioned treatment has been described on this forum, and has been found to help at least two-thirds of those who have tried it.

    For people who want to find out if they have a partial methylation cycle block and glutathione depletion, the best test to get is the Vitamin Diagnostics methylation pathways panel. This should be available again soon, as the lab is completing its move to a different building, and should be back in operation soon.

    I'm working to understand why the simplified treatment did not work in the other one-third, and I think I am making progress in understanding that. Some of the factors in various cases I've studied seem to be comorbid Lyme disease or mold illness, lack of enough of the cofactor vitamins and minerals for the methylation cycle and related pathways, maldigestion of protein leading to malabsorption of amino acids, which are needed by this part of the biochemistry, and in some cases the presence of KPU, as noted by Dr. Klinghardt.

    I hope this is helpful, and please note that I am not financially involved with either the tests or the treatment I've suggested. Also, please note that my position is that anyone who is on treatment to lift the methylation cycle block should be monitored by a licensed physician. Even though this treatment involves only a combination of certain targeted over-the-counter nutritional supplements, there have been a small number of serious adverse effects on this treatment, most apparently due to the presence of other comorbid conditions together with CFS, in a few cases.

    Best regards,

    Rich
  14. kerrilyn

    kerrilyn Senior Member

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    Rich, thanks for posting the connection between OI and adrenal function. I've been reading about these 2 things lately, trying to figure out which most relates to me. To some extent they both do. And now I'm starting to understand why and how they relate to each other.

    I'll have to read about diabetes insipidus too. Reading your posts always provides me with a lot of interesting homework.
  15. Kati

    Kati Patient in training

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    Machair, for me I get OI worse in the evening I think. It can happen any time but it seems that I need to lay down most of the evening. Again tonight I was trying to type something complicated sitting on the couch, and got a bad bout of OI and tried to fight it, and it gave me chest pain. I should know better.:ashamed::worried::sofa:
  16. xchocoholic

    xchocoholic Senior Member

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    Have you looked at your blood glucose levels ? Balance problems first thing in the am are a pretty good indicator of hypoglycemia. A GTT will show you how you're doing. Don't let the numbers fool you here ... My fasting BGL was 67 for my GTT back in 2006 but I felt and looked like crap. The nurse had to call the doctor to see if she wanted to continue this or not. After appr 2 years on the Paleo / low oxalate diet, my last fasting glucose was 97 in Nov 2009 ... woohoo ... an all time high for me ... now to watch out for diabetes ... lol ...

    Chronic hypoglycemia has been partially responsible for my OI / balance problems. Especially first thing in the am. A diet of veggies (leafy greens, brocolli and asparagus mainly), meats, few or no fruits and healthy fats can fix blood glucose problems but it takes a little time. It took me about 3 months to get over the morning weakness ... Gluten, benadryl and too much 5HTP will cause me to have balance problems too ...

    Salt loading is a good idea too but I have found this to be more of a parlor trick than a realistic treatment for OI. Sure everyone needs to get enough sodium, but healthy fats help our cells retain fluids too ...

    I want to mention that my symptoms of diabetes insipidous, constant thirst, frequent urination and leaking, was based on my body trying to rid itself of toxins. WHICH IS A GOOD THING !!! If I've had too many oxalates, which are known to be a cause of kidney stones, then I need to urinate more frequently ...

    Also, 2 AZO w / probiotics twice a day has helped me with this problem too. I only take these if I have symptoms. If I get too many oxalates, Chocolate for me, my urinary tract struggles to fight an infection. B complexes cause this for me too though ... The signs of an infection are burning, etc but this will also make you go to the restroom all the time or leak ...

    Oh and 4 months ago, I figured out that I'm not breaking down protein into essential aminos like I should ... I have a thread here on that ... These have helped my OI but not as much as I'd have liked. I still don't get the pounding heart or the urge to lay down as often but I still feel better is I lay down for an hour every few hours. I still don't know why though but my GI is now looking at this for me. Essential amino treatments appear to take time and it's only been 4 months so hopefully that's it.

    HTH .. Marcia

    PS. Figuring out what foods, supplements, etc do what to your body is much easier once you get the foods, toxins, etc out of your life that you're intolerant of. It took me about 2 years to reach a "healthy at rest" state. I wouldn't expect it to take anyone else that long if they started treating for leaky gut syndrome right away. HTH ...

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