The 12th Invest in ME Research Conference June, 2017, Part 2
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head feels too heavy when sitting or standing, relieved by lying down

Discussion in 'General Symptoms' started by Rlman, Jul 23, 2015.

  1. Rlman

    Rlman Senior Member

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    my head feels too heavy whenever I'm upright (sitting or standing), so I have to lie down. Anyone know what can cause that? is it due to severe fatigue (I'm basically sedentary/bedroom bound)? My BP is 90s/60s sitting. Can low cortisol or low blood volume cause it? Thanks!
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    I'm like that. I'm always laying down. Your BP is way too low. Mine has been about 109/78 and my NP just told me it's too low. Normal is 120/80.

    Get some electrolytes. I used Nuun but the carbonation was too much for me so I'm now using Ultima Replenisher.

    I know my adrenals are bad and I've tested low cortisol so my guess, and this is a guess, is yours is too.

    Some smarter people will be able to help you.
     
    Rlman likes this.
  3. Chriswolf

    Chriswolf Senior Member

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    I've experienced that quite a bit, although for me, it's my neck/back muscles that really start feeling weak and incapable of supporting myself. It gets to the point where my muscles have actually felt painful and strained just from trying to sit up/stand.

    I couldn't tell you what exactly is causing it however I do have crappy adrenal function, poor thyroid function can make you feel weak and floppy as well, I also have had inconsistent thyroid values on tests for some time, as well as a throughly established history of hypothyroidism on the maternal side of my family.

    That sort of BP would have me feeling pretty lousy, I've gotten down to 108 systolic, and I felt like I couldn't stand up properly.

    Try having some salt and getting your BP up a bit perhaps if you can do nothing else.
     
    Rlman likes this.
  4. SickOfSickness

    SickOfSickness Senior Member

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    Does your neck feel out of alignment? Have you had xrays or a CT or MRI?
     
  5. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Is that a headache? Headache that is relieved by lying down is very common in mecfs.
     
  6. Snookum96

    Snookum96 Senior Member

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    I get that if I sit or look at a computer for too long, and really bad after I eat. It doesn't hurt I just can't hold it up any longer. I've yet to have anyone give suggestions as to what's causing it.
     
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  7. Rlman

    Rlman Senior Member

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    I also feel it often after a meal as well, though also before. I also don't feel its related to weak neck muscles. It does not hurt.
     
  8. Rlman

    Rlman Senior Member

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    I don't feel any pain or aching so I'm guessing its not a headache.
     
  9. Rlman

    Rlman Senior Member

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    I had a head MRI/MRA, not of neck. I did have some sort of brain trauma triggering the illness but so far nothing has been found.
     
  10. Snookum96

    Snookum96 Senior Member

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    Mine doesn't hurt either. I have tried leaning my head back back but then I have trouble breathing. Sometimes I just let it flop forward or it just flops forward on its own. It probably looks funny but I don't really care anymore lol!

    I had an MRI last summer (for different reasons) and it wasn't normal but the neurologist said that my problems aren't neurological and didn't explain the findings.

    My new doctor disagrees and ordered me a head and neck MRI on a Tesla 3, the newer machine which apparently sees more. There aren't as many of them so when they called the appointment was head December 23 and neck April 21. Brutal. I called a place in Buffalo and they apologized for the one week wait lol. So I go this Friday I'm really curious if anything is found
     
  11. Seanko

    Seanko Senior Member

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    Prof Julia Newton of Newcastle University made an excellent video on orthostatic intolerance, feeling light headed or dizzy when standing up, for the Dutch ME/CFS society.

    Hope this helps.

     
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  12. out2lunch

    out2lunch Senior Member

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    Symptoms in the head that are relieved when lying down can be related to conditions like Chiari Malformation. And imaging of these areas when lying down inside a traditional MRI machine often don't diagnose these conditions. You need to be in an upright position if the upright position is causing the symptoms.

    If you can find a doctor who specializes in Chiari Malformation and its related conditions, that would be the way to go. Chiari Malformation is something seen with greater frequency in our patient cohort than the general population. Ehlers-Danlos also goes along for the ride with this condition, which adds another layer of complication.

    MRI imaging while lying down can reveal Chiari Malformation, but usually only Chiari specialists can see it. Regular radiologists and practitioners without this diagnostic experience miss it most of the time.
     
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  13. Daffodil

    Daffodil Senior Member

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    I have had low blood pressure for most of my illness. my doc says this is caused by the heart not being able to pump blood properly. I always assumed this symptom is a result of chronic infection....blood pooling, thicker blood, etc?
     

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