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O.I / Pots - more questions - is it anything to do with blood volume.

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Hazel1862, Nov 10, 2015.

  1. Hazel1862

    Hazel1862

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    Dianosised with CFS following 2 viral infections with mengisits type blood rash - October 2012, diagnosed april 2013 in hospital.
    Use to be bed bound but now recovering
    now back at work 2.5 days a week in a less physical job role

    Had winter of viruses and then had a summer with three diarhea bugs - now recovering again having been poorly.
    After diarhea took rehdration sachets and noticed how my muscle ache virtually disappeared and my fatigue improved. When stopped came back. Introduced salt with potassium (in discussion with doctor who said it would help blood pressure) and this has positively impacted other symtpons as well such as dizziness and nausea and my fatigue level. I have also responded positively to having ferritin tablets twice a day. I did have low blood pressure but this has now raised to 106 though I do use an awful lot of salt. On seeing the doctor today I raised whether O.I would be an issue due to feeling better with salt and potassium. He noted that on standing my blood pressure went up. So I suppose this does rule out O.I does it? Could it be to do with my blood volume. I suggested it could be low but he said there was no way of knowing what was normal for me. I do feel much better when I am laying down than when I stand and it is much harder to stand than it is to walk. What are people's thoughts? I am currently in the UK.
     
  2. Hazel1862

    Hazel1862

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    I am also chronically thirsty and find I drink more when I have been upright all day
     
  3. Martial

    Martial Senior Member

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    Ventura, CA
    A lot of people that are sick tend to be chronically dehydrated despite drinking normal amounts of water as well. Sometimes with O.I. it does not always happen everytime you stand up and move around, but can be an off and on again process too. You could possibly be dealing with something like hypo perfusion of the brain even without tell tale signs of O.I. Just some other ideas to bounce around and find if it could apply to yourself.
     
  4. SOC

    SOC Senior Member

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    Low blood volume is thought to be quite common in ME/CFS. Many of us take florinef or desmopressin, both of which work to keep more fluid in your veins, and feel much better for it.
    No, it does not. Dysautonomia is complex and variable. Different types have different symptoms. In some people with low blood volume, BP goes up upon standing in an effort to compensate for the reduction of blood flow to the brain.
    from
    The Postural Tachycardia Syndrome
    A Concise Guide to Diagnosis and Management


    Most doctors know very little about dysautonomia (of which OI is a part), but think the little they know is all there is to know. As a result, they tell you things that a flat-out untrue with infinite confidence.

    Ideally, you should see a dysautonomia specialist or an electrophysiologist (a type of cardiologist). I don't know how likely that is in the UK. If you can't manage that, I suggest you do a lot of reading about dysautonomia and different types of OI, gather up lots of data and try to educate your doctor. (Good luck with that. :rolleyes:)
     
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  5. Hazel1862

    Hazel1862

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    Thank you very much for this response. I am suspecting low blood volume but when I saw an endocrine doctor this week, he said there was no way of measuring whether it was low because it is a unique thing to you and they dont know what it was before. How does it work in the US? I did ask my endocrine whether I would benefit from florinef but due to not having any blood results which showed I needed it, he did not think it would be beneficial. What are the symptoms of low blood volume? I take it it is things like thirst etc. When I began taking salt I felt loads better and when I started taking ferritin. Both things which I've read help low blood volume.
     
  6. voner

    voner Senior Member

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    your endocrinologist is not entirely accurate about not being able to measure blood volume. from your profile page, i'm not sure where you're located, but you can do it here in the United States. here's the website of the company that has developed a device to measure blood volume. You can search there to see if there's any facilities in your area that you can access. if you're not in the United States, you might get a phone call to the company to see if there's any options for you. good luck.

    http://www.daxor.com/bva-100/facility-locator/
     
    Last edited: Nov 11, 2015
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  7. SOC

    SOC Senior Member

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    Low pulse pressure is not a direct measure of low blood volume, but it is an strong indicator. It would certainly indicate something wrong. Don't expect your NHS doctor to accept it, though. Pulse pressure is the difference between your systolic and your diastolic BP. You could try measuring it over the course of the day and under a variety of circumstances to see if it correlates in any way with your symptoms. Pulse pressure is likely to be low first thing in the morning if you have aldosterone or vasopressin deficiencies. Most people report feeling poor when pulse pressure goes below 30.

    Doctors here who prescribe florinef generally do so based on failed tilt table test and/or OI symptoms. Since you appear to have pretty clear OI symptoms and the doctor refuses to even trial florinef, I'm not sure what you can do.

    Do you have a CFS diagnosis in your record? Is it possible your doctor is refusing to treat your symptoms because it might support your belief that you are having symptoms? o_O
     
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