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Is standing tiring but not dizzy when you stand up? Get tested for treatable OI!

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Sasha, Mar 13, 2010.

  1. FernRhizome

    FernRhizome Senior Member

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    One day: I hadn't heard salt was counter indicated with hyperadrenergic OI. That's what I have. But I also went through extensive autonomic testing at the Mayo Clinic where I got my dysautonomia diagnosis and they recommended salt and I usually feel better if I keep my salt intake on the higher side. I find I crave it other wise in order to be upright because of my severe hypovolemia. I, too, tried mestinon once in a small dose but anything that adds symptoms or makes me feel worse somehow seems hardly worth it and that's what happened. I should try it again but can't bring myself to do so. There can be serious problems with erythropoitin and those products.....Bell has had some patients who got worse on those and never got better. My biggest frustration often is that all the nurses in the world complement me on my low blood pressure because they think it's good when it's really very very bad! And the whole world thinks that OI involves syncope/fainting and never recognizes the other end of the scale, that the longer one is upright the weaker one gets but without getting dizzy. I once got left too long in a sitting position in the ER in a wheel chair in one of my level 1 years and I had a seizure. So I will have a seizure before I'd ever get dizzy. ~Fern
  2. OurDayWillCome

    OurDayWillCome

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    Fern.... one of the issues with salt is that those of us who have the hyperadrenergic type often have high BP. I understand that is not a problem for you and it wasn't for me either. Nurses who were not familiar with me often though their cuffs weren't working correctly. But there is more to it.... and it has been a long time since I read about it. I'll try to post some relevant links later, when I have some time. But it was something about the higher levels of Catecholamines we have lead to us absorb more sodium... probably because we need it... but that puts more stress on the kidneys, if I remember correctly.

    I use the Lite salt because it contains Potassium. that helps the heart. I also found that I was low in Vitamin D3, which helps regulate fluids. And I have Apena. Treating that helped reduce my Catecholamine load, which in turn helped to stablize my BP.

    I have fainted, but not often. I have also had seizures....and so I have some idea of what you are going through. Take care.
  3. gracenote

    gracenote All shall be well . . .

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    Just want to be more specific as to what my doctor was recommending. Always, I need to start things slowly. (It would have been good for me to look up the notes before starting on the Mestinon rather than just going by what it said on the bottle.) It's been over a year since my doctor suggested I try this, and I just found it repeated in my notes from several visits. Since OI is one of my most debilitating symptoms right now, I'm going ahead with the experiment.

    ProAmatine (Midodrine): 2.5 to 5 mg every 3 to 6 hours as needed (only use when needing to be upright)
    OR​
    Mestinon (Pyridostigimine): 1/2 to 1 60 mg tablet (before needing to be upright)

    Right now I'm trying 30 mg of Mestinon twice a day. This morning it felt kind of iffy, this afternoon I think it's helping. (I do wish I had a blood pressure cuff to check, but I don't.)
  4. BEG

    BEG Senior Member

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    :hug:

    Hi FernRhizome, Thanks for bringing this up. I'm sure if we asked, it's happened to a significant number of us. When the nurses say how wonderful my low normal blood pressure is, I have to bite my tongue. My blood pressure looks OK simply because I've been sitting in the waiting room forever (not walking or standing), and I've loaded my food with extraordinary amounts of salt and drink water constantly.

    Just a reminder to O.I. sufferers. Examine the medications you take. A lot of the antidepressant medications we take for our symptoms can have a negative effect on O.I. Example, I take trazadone for sleep and it will aggravate O.I. Next doctor's visit I'm going to change my sleep med. :sofa:
  5. Scarlett

    Scarlett

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    I am wondering if someone might be able to help me pinpoint this symptom, as I am not sure if it is ME / CFS, OI or another issue, or a bit of all three!

    When standing or sitting for any length of time I start to get a very intense pain in my back, which, if I stay upright, spreads through my middle, sometimes right to the front in my stomach, although definitely connected to my back. When standing still for a while this intense pain also spreads to my hips, and my legs get heavy and stiff when I try and walk. I have only been ill for a couple of years and this is a fairly new symptom.

    I have had back trouble in the past so I am trying to determine if this is actually a back problem. The main clue that it's a CFS / OI symptom though is that the minute I manage to lie horizontally with my legs up the pain disappears. I can't pinpoint it in a particular joint or muscle either, it's a kind of internal pain which, if left, eventually brings me to tears with its intensity.

    Anyone else have anything like this and is it associated with OI or ME / CFS? I also have very low blood pressure and a slow heart rate.
  6. Sasha

    Sasha Fine, thank you

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    Hi Scarlett - sorry to hear about your symptom, it sounds very painful indeed!

    It doesn't sound like any of the symptoms that I've heard about in relation to either OI or ME/CFS, though I'm no expert. OI symptoms, apart from fatigue coming on quickly when standing, include things like light-headedness, feeling dizzy, palpitations and that sort of stuff. ME/CFS symptoms include muscle and joint pain, ditto fibromyalgia. But what you're describing sounds more to me like back trouble.

    Many years ago, I had back trouble and read a book for patients that explained that if you have back problems, you can feel the pain also in your legs if it goes on for a while. The treatment included working on your posture and making sure that your spine was curved correctly at the small of your back. Digging through my memory, I remember my physio telling me to do some exercises that involved lying on my back and I think I had to do some sort of leg raising. It's lost in the mists of time but the posture you use to relieve the pain sounds a bit similar. This is ages ago, though, and I frankly don't really know what I'm talking about!

    I wonder if you would have a better chance of a helpful response if you started a new thread called something like "Back trouble: does anyone know what this is?" and repeated your message. I don't mean to chuck you off this thread, you're very welcome here (threads always wander about, it's not a problem and it's completely fine that you posted here!) but people who know about back pain and who might recognise your problem probably aren't reading this thread and won't see your question, even if it does turn out to be an OI/ME/CFS symptom.

    Good luck! I hope someone has some good info and advice.
  7. Lesley

    Lesley Senior Member

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    This part of what you describe sounds like the symptoms I had with an ovarian cyst. It didn't really spread beyond my lower back and abdomen, so what you are experience may be a more severe version of the same thing, or something completely different.

    I have POTs and don't associate those symptoms with it.
  8. Mithriel

    Mithriel Senior Member

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    I get very severe lower back pain if I stand for too long. This is part of the myalgia in myalgic encephalomyelitis :Retro smile:

    Lying down makes me feel better but it doesn't always relieve it. In fact it can become very intense and remain like that for a few days.

    Mithriel
  9. Sasha

    Sasha Fine, thank you

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    Goodbye OI? But for a different reason!

    I have just been de-diagnosed with OI! I was referred to a specialist (not sure in what) who has an interest in this and she had me stand for 10 mins with a "gold standard" finger blood pressure monitor (more accurate than the arm ones, apparently) and found no drop in BP above the normal when I stood. I said that in people with ME the usual test was 30 mins but the test was still 10 mins. She also said that the diagnostic criteria for POTS included tachycardia above 120 bpm - I said I'd read that it was either a raise of 30 bpm or over 120 bpm and she said it wasn't that simple.

    She also warned me against looking for symptoms on the internet because I would just worry myself (if there was a "patronised face" smiley I'd insert it here) even though my GP had confirmed the diagnosis. She also said I shouldn't have increased my salt intake even though I did it with my GP's agreement (if there was a "WTF" face it would again go here). I mentioned that I had measured how much I drank and how much I peed on two days and thought I had diabetes insipidus and her reaction was to be horrified that I had actually measured this at all (with the implication that I was a hypochondriac nutter as to be actually measuring something myself).

    She wasn't nasty, didn't diss the ME thing at all but was just one of those old-fashioned "don't try to inform yourself, just put up with your decades-long untreated seriously disabling disease and let us try to make you feel silly for trying to do something about it - just leave it all to us and let us continue to do nothing".

    I now have no clue what to think about whether I have OI or not! I just wish it was possible to see an ME specialist who would also be familiar with the co-morbidities. I feel very much on my own with this in terms of medical support. I think my strategy has to be to try to do some of the counter-OI stuff that is certainly harmless (e.g. mat exercises to strengthen core and large muscles) but avoid the high-salt, high-compression thing. By the way, I've started a new thread on "Home Orthostatic Training" offered for ME people at Newcastle Uni (dunno what it is but am hoping someone will respond).

    Urgh. I feel a bit fed up. :( However, I will almost certainly have cheered up by the time anyone reads this! :D
  10. kerrilyn

    kerrilyn Senior Member

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    Ugh is right! I know exactly what you mean. This is why I never go to the doctor in the first place!!!!

    Against my better judgement I did go to the doctor and I'm having some tests performed. I've already started the 'why bother' portion of this adventure.

    Soon I'm having a Tilt Table Test at a hospital with a specialist too. I wonder what it is going to show. Like you, I do not show signs within the first 10 mins. I've read that there is lack of agreement between docs regarding the criteria for POTS, some say an increase of 30 and some it has to be over 120. Personally I don't agree with the info that doctor gave you....but I'm just a nutter who searches info on the net :D So join the club Sasha :hug:
  11. dmholmes

    dmholmes Senior Member

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    Anybody know if klonopin would be on that list? I've looked before, but never found anything conclusive.

    I haven't done much self-testing, but I do have a BP cuff here to try. Problem is my OI is almost completely gone after supplementing magnesium. Since I'm not having the OI symptoms, the difference in blood pressure or heart rate might not show up. Anybody know if magnesium is known to help with OI? Another one I couldn't find much on.

    Thanks,
    David
  12. Mark

    Mark Acting CEO

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    Thanks for this Sasha!

    I didn't even know what OI was until I came here, I thought it must be one of the symptoms I don't have! Then I started to wonder about it but thought I don't have it really because I don't have any dizziness with it. And now I know I have it thanks to your thread! Plus, that's another one of my '5 a day' for fakuda and canadian I guess, which I think removes any remaining ambiguities for me as to what I've had for the last 15 years.

    Patient-Patient conversations trump googling of symptoms, all day long!
  13. Sasha

    Sasha Fine, thank you

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    Excellent "internet nutter" face, kerrilyn, totally cheered me up! Thanks!
  14. girlinthesnow

    girlinthesnow Senior Member

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    Sorry for the late response but I've just started reading this thread. Scarlett, I have this symptom, it is part of myofascial pain syndrome. Acupuncture and pressure therapy can help. Clair Davies book http://www.amazon.co.uk/Trigger-Poi...=sr_1_1?ie=UTF8&s=books&qid=1272963446&sr=8-1

    explains the connection very clearly.

    Hope you can get some relief from this, I have it too and it can be debilitating on top of ME.

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