Is there such a thing as mild orthostatic intolerance?

I have low BP to start with - it just doesn't change much from being flat to being tilted. I think Nancy Klimas (and others) have said that PWME have low blood volume.

 

Palpitation from tachycardia has lots of causes other than incipient reduction in cardiac output.

 

I wonder if there is actually any good evidence for this? So many myths surround ME physiology.

 

In my case my pulse pressure falls, often to the extent that blood pressure monitors (including ones in high-tech labs and doctors using manual ones) can't get a reading. Usually my systolic creeps downward while my diastolic creeps upward, and I end up with a pulse pressure under 25.

Earlier in my illness it would take a while to hit ... 30-60 minutes of being upright typically. Within a year or two I was having episodes where I couldn't sit up for more than a minute or two, lasting for several weeks. I had to sleep on a mattress on the living room floor because I couldn't get upstairs to bed. It may be coincidence, but I haven't had any of those episodes in the several years since starting a low dose of an NRI (strattera) which I later switched to a low dose of an adrenergic alpha 2 antagonist (yohimbe).

I can also get tachycardia from my oxygenation dropping under 98% in the hours or days following over-exertion. It's perfectly normal to go down to 95%, but for some reason it freaks out my system. It's worse if standing, but is pretty bad even when lying down - heart rate will often stay over 95 bpm which makes it impossible for me to sleep. Taking an extra dose of my OI med at bedtime can help (I usually just take it in the morning and early afternoon).

 

What about people who have an acute flulike ilness which forces them to lie down? What kind of "OI" do they have?

 

My first "alert" is chest and forehead pressure and then my eyesight gets blurry. I also experienced this while sitting upright for too long. I need to lie down for 20-30 minutes and then I feel ok again.

 

Good question - a quick google didn't show me a review paper but I didn't look systematically.

 

I have always assumed I had mild IO. As long as I stay well hydrated and take electrolytes (keep my blood volume up), I am fine. I have to keep 'puttering' about when I first get up. If I stand still very long I will get light headed. Once my morning salt water and tea take effect, I am OK for the rest of the day as long as I keep drinking.

 

Transient OI?

 

here is a paper co-authored by Dr. Klimas on blodd volume, etc.....

"Chronic fatigue syndrome: illness severity, sedentary lifestyle, blood volume and evidence of diminished cardiac function"

https://www.ncbi.nlm.nih.gov/pubmed/19469714

 

In German analysis of Phase 2 Rituximab they referred to antibodies to Adrenergic and Muscanaric receptors, found in POTS. (Memory?) May explain the waxing and waning of POTS symptoms if autoimmine. If my infections, overactivity, bodily stress from poorly controlled pain or injury, my POTs ramps up and hard to control with just salt. Right now my supine heaartrate is 80 when I situp it goes up 110 then standing 135. After about a minute or two vision dims,dizzy ready to faint, have to get flat again. Heartrate settles back down in a couple minutes. I had it for years and never really could feel the tachycardia. When going through a good spell of 1 - 3 hours upright activity in a day, my warnings took place over a longer stretch of time. Eyes, nausea, lightheaded, co-ordination, speaking and leg weakness. Never tried meds for it. I want to try LDN or Mestonin so don’t want to add a beta blocker to the mix.

 

I wonder if this is the only evidence. The abstract is not very well written. They do not actually tell us the answer to the questions they pose. It says blood volume was low in CFS but give no figures or statistical analysis. They then tell us how low it was in the ones in which it was low - which seems unhelpful. And they do not answer the question about relation to severity.

 

@Jonathan Edwards

It’s such a relief to read your postings. When I finish, I usually think, “Thank goodness, I am not the only one who sees that” , or “I am not the only one that reached the same conclusion”.

Frankly, BS is BS, no matter how much you dress it up.

So thank you so much for posting to this forum. The common sense approach is IMO the best way to figure out things.

 

There's a partial list at http://me-pedia.org/wiki/Orthostatic_intolerance#Notable_studies

I think it's missing some of the older stuff from Peter Rowe, and maybe some newer stuff from Julia Newton.

 

This has only just struck a chord with me. I did a poor man's TTT a few years ago with increased blood pressure and the 30+ increase in heart rate.

http://forums.phoenixrising.me/inde...ed-blood-pressure-during-poor-mans-ttt.31014/

Only the final poster in that thread mentioned low blood volume and that was because his cardiologist had ruled it out.

Did you get your blood volume measured, Helen, or did your cardiologist go on clinical signs only?

 

Can't orthostasis refer to being upright? That is, the trunk is upright regardless of what the legs are doing?

On a scale, sitting gives more relief than standing, sitting with feet up is better than feet on the floor, half lying back is better than the trunk being fully upright.

 

@Jonathan Edwards

It does seem that many of us do have problems being upright but there doesn't seem to be an awful lot of consistency in the way that it manifests: some have low blood pressure, others raised; some get outright tachycardia or a 30+ increase in heart rate, others don't; some can tolerate standing or strolling around for 60 minutes or more, others can't even sit up in bed for more than a few seconds. Increasing disease severity seems to be associated with greater intolerance of being upright, it doesn't seem to be related to muscle weakness and exertion is an exacerbating factor.

No pressure but would you care to speculate on a unifying theory?

 

The clinical signs were all that he needed. You may find treatment protocols by Drs. Teitelbaum and Bell if you google ME/CFS+low blood volume. I have computer problems ATM, otherwise I´d link to them (among others).

 

I would just like to add that I have noticed that when my Standing up problem (see what I did there ...might call it SUP), is at its worse (mine waxes and wanes) there appears to be a correlating rise in resting heart rate. Its smallish but tracks upwards from my normal 57 to 63. This appears unrelated to exercise since this has happened when I've been laid up with a virus (sofa bound). There is also another odd symptom that seems to coincide...crawling itchy skin. This also comes and goes and mainly happens around the calf and shin and feet area. This is eased with extra topical magnesium. I have numb hands and feet constantly and often get numb legs pins and needles in the legs. When its bad just sitting with feet on the floor for 10 minutes can cause this.

So nausea, light headedness, pins and needles, peripheral neuropathy (hand and sock), crawling itchy skin and heart palpitations that are eased with potassium supplements and elevating legs. This seems related to circulation but also nervous system?

 

Um!