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Delayed orthostatic intolerance

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Sasha, Jun 14, 2015.

  1. Sasha

    Sasha Fine, thank you

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    @Valentijn posted on another thread:

    I have delayed OI - I don't faint on standing or (unless I have a new bug or something) feel dizzy but can't stand for long and have to lie down regularly during the day and have my feet up for most of the rest of the time.

    I've done the poor man's tilt test and come close to the POTS criteria but not close enough to get a diagnosis in the UK (I fail because I don't immediately collapse). However, if I keep standing, my heart rate continues to rise and rise.

    My impression is that 'delayed OI' isn't widely recognised as a diagnosis, but that doesn't seem to stop it from significantly disabling me!

    And Valentijn's post suggests this is common in ME.

    Are clinicians/researchers missing an important symptom?

    Should we be raising the issue?

    Are different treatments required from treatments for the more usual forms of OI?
     
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  2. Sasha

    Sasha Fine, thank you

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  3. Valentijn

    Valentijn WE ARE KINA

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    It is a little more obscure, but I think it's generally recognized as a manifestation in Neurally Mediated Hypotension. Though NMH isn't as catchy as POTS, so everyone talks about POTS :p

    Some of the older research (Rowe?) into OI in ME patients indicated that NMH was by far the more common problem that we have.
     
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  4. Sasha

    Sasha Fine, thank you

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    I wonder why it's not widely recognised?
     
  5. Sidereal

    Sidereal Senior Member

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    I wonder if it's because POTS is easy to diagnose compared to NMH which requires observation over a longer period on a tilt table since the problem may not become apparent until like 45 minutes later or a drug challenge may be required to trigger a collapse.

    With POTS the doctor can diagnose it in office just by getting you to stand still for a couple of minutes. At least that's how I was diagnosed.

    What are your orthostatic symptoms exactly, Sasha?
     
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  6. Valentijn

    Valentijn WE ARE KINA

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    It's included in the good criteria: CCC/ICC/SEID. So that's good. But I think it tends to be overlooked in the clinical setting. Part of this is probably because patients don't even know they have it - it really does feel a lot like "fatigue" if the patient hasn't heard of OI symptoms or been diagnosed.
    Definitely. OI and PEM are the two most outright disabling symptoms of ME, and with limited options in dealing with PEM, OI is a great target for reducing disability. And the OI aspect has a lot of potential treatments, most of which are pretty simple and safe.

    Treating it can mean that mild patients are able to keep their jobs longer, or work more hours at sedentary desk jobs and similar. And for moderate patients, it might mean that can retain more independence, such as by being able to do more shopping and stay out of a wheelchair. For severe patients it might merely mean the difference between laying down most of the day or being able to sit up most of the day - it might not help them get out of the house much, but it can improve quality of life quite a lot.
    I think the major difference is that as ME patients we need to avoid the treatment method of building up leg muscles and such :rolleyes:

    Regarding POTS versus NMH, I suppose that different drugs are likely to be helpful. But neither condition has a specific cause associated with it, so I think the general approach is to test for some likely abnormalities (epinephrine, norepinephrine, ACTH, etc) and potentially treat for problems there. But usually it seems like there are general non-prescription recommendations for all types of OI, and some drugs which get tried more-or-less randomly until something works or the doctor runs out of ideas.

    Compression stockings are a common treatment to keep blood pooling in the feet, but I'm not sure how useful those are when sitting with your legs up all day anyhow. And they can be very had to put on, which is a significant obstacle for more severe ME patients. Personally, I hate wearing anything even a little snug, so would loathe wearing compression garments.

    Electrolyte mixes help a lot of people as well, supposedly by helping people retain more water and thereby increasing blood volume. I make my own with Lo-Salt (sodium and potassium) mixed in water, with a little sugar. And mixes come in little packets from various commercial brands. This seems to have helped pull me out of an OI flare over the past couple weeks, and also has me peeing waaaay less during the day.

    Various herbs seem to help some people as well. I think one is liquorice, but I haven't tried that in quite a while, and don't recall in helping at all for me previously.

    Plant extracts are another possibility. One is Butcher's Broom, a vasoconstrictor. The only one I've tried is Yohimbine, which helps me with my low pulse pressure quite a bit. In my case, blood and urine norepinephrine has tested low repeatedly, so that's probably why my pulse pressure is low, and could explain why Yohimbine is helping me.

    Then there's a lot of drugs which do a lot of things. Beta blockers might help with overly elevated norepinephrine, desmopressin can help retain fluids, erythropoietin can act as a vasoconstrictor, florinef increases plasma volume, etc. And with my norepinephrine issues, I found an NRI (Strattera) to be very helpful, albeit too damned expensive.

    This is an area where I would love to see more treatment-oriented research. Take a couple hundred ME patients, test them for any indicators of what might be causing their OI, and treat accordingly. Or at the very least, it would be great to see more awareness and treatment for it from clinicians. If OI is as common in ME patients as the research indicates it is, testing for OI should be a basic part of dealing with any ME patient.
     
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  7. Valentijn

    Valentijn WE ARE KINA

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    And if the problem is low pulse pressure, the vast majority of GPs will miss it even in the middle of an acute episode. In the 2-3 years before ME onset, there were several times when I went to the GP feeling awful, and my low pulse pressure in the BP reading recorded by the nurse went completely unnoticed.

    So I think awareness is a big problem. It also doesn't help that even cardiologists don't know what NMH is (neurological = not their problem), nor neurologists (blood pressure = not their problem). And I'm not sure that most GPs even know that autonomic specialists exist, assuming they even notice or suspect an OI problem in the first place.
     
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  8. Sidereal

    Sidereal Senior Member

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    I started doing this a few years ago (small amounts a few times a day, you develop an intuitive feel for how much you need and your body will feel repelled by potassium when you don't need it so it's not that hard to dose) and it quite literally represented the turning point between a spiralling decline towards death and being able to function minimally around the house at least.
     
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  9. Scarecrow

    Scarecrow Revolting Peasant

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    @Sasha

    If I do a free standing poor man's TTT, I pass it, but for those 10 minutes my heart rate yo-yos. As I recall, my BP stays fairly constant.

    If I do a TTT while leaning against the wall, I fail - see this thread. My BP increases. If you want to try that, you may want to do it when there is someone else present. I found it severely unpleasant even though my increase in heart rate was relatively modest.

    I, too, seem to have delayed symptoms. They will usually manifest while shopping, although when I crashed at the start of the year, my heart was pounding if I stood long enough to boil a kettle, which is certainly not normal for me. I didn't take my pulse - I didn't need to!
     
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  10. Sasha

    Sasha Fine, thank you

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    As in my first post, pretty much - and I automatically do all the OI counter measures like sit with my legs crossed, avoid standing still, etc. If I don't lie down when I need to I just feel more and more knackered. Doesn't normally manifest in dizziness, though.
     
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  11. Sidereal

    Sidereal Senior Member

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    The pulse pressure thing is huge and I have never encountered a doctor who understood the significance of a non-critical non-bleeding patient having a pulse pressure of 20. It just goes unnoticed or unmentioned. Not sure why they bother with the BP cuff on every patient if they don't actually understand the results.
     
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  12. Sidereal

    Sidereal Senior Member

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    When I had mild ME, my symptoms of weakness, confusion and dizziness would manifest themselves while shopping or standing in line or on public transport. Of course if someone were to report such a thing to a GP it would be diagnosed as panic attacks so we don't hear about NMH much.

    When ME became severe, sitting up in bed was enough to cause POTS.
     
  13. Sasha

    Sasha Fine, thank you

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    I've tried compression stockings/abdominal binder but wasn't able to tolerate them (too weak in the arms to cope with the stockings and wasn't getting enough benefit - plus enormous overheating and they wouldn't stay up, to the extent that they would actually pull my trousers down if I went outdoors, the elastic being so powerful!).

    Also tried electrolytes but didn't work for me.

    I've never tried the drugs (no access) and I'm nervous about things such as midrodine etc. (steroids?) - don't want to do myself any long-term damage, and similarly with the herbal stuff. Maybe it's time to look into it again, though.

    Big 'yes' on the research.
     
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  14. Sasha

    Sasha Fine, thank you

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    I didn't know they did.
     
  15. Scarecrow

    Scarecrow Revolting Peasant

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    Sidereal. You've got it exactly. That's where I'm at.

    My experience a few months ago made me realise just how disabling OI can be - and that was just a little taster.
     
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  16. Sidereal

    Sidereal Senior Member

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    It is quite scary. OI is the symptom that ultimately took away my ability to take care of my ADLs. Then you have the very severe PWME who can't even sit up in bed or else they faint.
     
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  17. Scarecrow

    Scarecrow Revolting Peasant

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    Every ME clinic should have an ANS specialist and they should do home visits. One of my top ten on the wish list.
     
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  18. adreno

    adreno PR activist

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    OI is horrible. It is the single most disabling component of my illness. Since one year of age we take standing for granted. When I tell people I can't stand up, they look at me in disbelief. When I told a doctor, he said he had never heard of a disease causing such a thing. I hadn't either. You hear of cancer, parkinsons and heart disease, but I never imagined there was such a thing as OI. Until I felt it. Since that day, life lost most of it's pleasure.
     
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  19. Effi

    Effi Senior Member

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    I think sometimes even patients don't realize what is happening. I remember way back in the beginning a doctor (who was otherwise wildly unhelpful and actually made me sicker) asked me if it was hard for me to stand up for a while. I said no, because it wasn't like I was fainting or actually paralised or anything. I didn't notice that I'd really be struggling waiting for the bus, shuffling around just to make it bearable.

    If doctors don't know about it and patients don't know either, yet so many patients are truly suffering, awareness is desperately needed and soon!
     
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  20. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I failed the TT but have the delayed type of OI. It seems to be mediated by adrenaline somewhat, at least for a time, then fatigue sets in. Eg I can walk around a bit to stave off the effects for a while. Without involvement of the heart, and failing the TT, I really don't know what mechanism is involved.

    OI is my most disabling symptom also, and seems to be worsening over the years.
     
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