Also, how do you know for sure that no lasting damage was done?
That's a very reasonable question. To be precise, I would have to say that no
major lasting damage was done, and I am basing that on the fact that you report feeling basically recovered, and don't have any new symptoms. It is certainly possible that on the cellular level, some cells were damaged by the hypervolemia. But if it had been a significant number, you would feel the effects.
Having said that, it is very possible that you may wake up tomorrow feeling like a truck ran over you in the middle of the night. What you went through was an extremely traumatic experience for your body, and some level of PEM can be expected. It may be major PEM, so don't worry if you feel really horrible. But if you have any new symptoms come up, which is unlikely, those need to be investigated.
I have had a liter of saline a total of four other times in my life in which it all went fine. The first was when I actually had mono and was severely dehydrated so the liter must have been needed. The second and third were when I was recently in the hospital but one was over six hours and one over ten hours (so I am guessing at the slower speed, my body processed it okay?) The fourth was my first infusion at this center and it was identical to today (minus the magnesium) and done over a three hour period and I felt great for 48 hours like I had found the miracle cure. Do you know why that first one was so great, the second one was bad (but not dangerous) and the one today I guess could have killed me? Why is each one so different?
Another good question. Before today's session, I thought that the difference could simply be due to the difference in blood volume level before the infusion. But today's extreme reaction doesn't fit that explanation. And since nothing else has changed, we have to ask, What could cause your reactions to saline infusions to get progressively and rapidly worse? This is a very important question. I can think of only one answer, but it fits extremely well: Autonomic dysfunction. We're still talking about hypervolemia, and I stand by all the points I made in my last post, but it's the cause of the hypervolemia that we have to reexamine. A lot of these issues are addressed in the thread
People with ME/CFS can have hypervolemia and not low blood volume. Also,
Professor Edwards' post in this thread explains this situation very well, although it's a bit technical. And of course, it ends with the classic (but very relevant) line:
My suspicion is that this is all the same thing in ME - autonomic dysfunction with both relative and absolute shits in volume.
That's exactly what you got hit with, isn't it?
So this would mean that the sympathetic nervous system centered in the brain's hypothalamus is malfunctioning, and at this point, each saline infusion is simply sensitizing the hypothalamus even more. (Hypothalamus malfunction is basically a given in ME/CFS anyway.) That means that even if you did a half liter infusion of saline next time, the results could be as bad or worse than today. Due to this rapid progression of reactions to saline infusions, I think that the only medically sound approach at this point is to avoid them completely. The only exception would be if they're needed for an emergency, in which case the amount of saline IV used should be minimized.
This hypersensitization of the brain is characteristic of ME/CFS. Fortunately, it can be treated. The first step is with the nebulized magnesium, and then Dr. Goldstein's protocol, which is aimed at resetting malfunctioning neural networks in the brain so that they function properly. This includes those parts of the brain that regulate the autonomic nervous system.
In the ER, the doctor (who was very kind and attentive) said that magnesium is usually given in an IV at one gram per hour but I got four grams in three hours which he thought was too fast for me.
I had assumed here that Dr. C knew the proper rate to infuse magnesium, and so I hadn't checked this out. The dose itself may also be a little large for you - four grams is a standard large, once weekly dose. Once again, you're getting the "one size fits all" version of medicine. Nevertheless, as I mentioned in an earlier post, the body is extremely efficient at eliminating excess magnesium, so I wouldn't expect this to cause a problem.
He said that Magnesium can cause flushing and tachycardia if too high and did a blood test on me and my level was too high. The upper limit was 2.5 and mine was 2.96 (so not crazy high but above the range.)
Magnesium can cause flushing if levels are too high, but so can low potassium. However, when the magnesium level is between 2.5 and 4, patients are asymptomatic. Symptoms occur only at a level of 4 mEq/L or higher. Since your level was 2.96, it's reasonable to conclude that the flushing was due to low potassium - not high magnesium.
And as for the second point, I'm afraid your ER doctor was wrong; high levels of magnesium do not cause tachycardia no matter how high they are. As magnesium is a central nervous system depressant, hypermagnesemia (too much magnesium in the blood) may cause bradycardia, though - the opposite of tachycardia. Since you had tachycardia, the relatively small excess of magnesium couldn't have been having much of an effect, and this reinforces my view that the flushing was caused by low potassium, not high magnesium.
He did not feel there was any allergic reaction and my other electrolytes (sodium, potassium, etc) were all in the low normal range. The only one that was very low and outside of the range was calcium. Does that mean anything?
It's hard to know. You need to have your calcium tested at a time more removed from that episode before we can say anything about it.
I asked him about the 82 on the pulse oximeter and he felt that it was probably wrong and an inaccurate reading since within 5-10 min max, it was at 100 and stayed there.
When I first read this, I broke out laughing. To see why, imagine that the following conversation occurs in a med school classroom:
Professor: "A patient has just had an infusion of one liter of IV saline, and presents to the ER with idiopathic hypoxemia. The oxygenation level is 82%. Ten minutes later, the oxygenation level has risen to 100%. Jones, what's your diagnosis?
Jones: "Uh, broken oximeter?"
The class breaks out laughing.
Now in a class, this would be funny. In a real ER, it's not. It's dangerous.
Do you think this is possible?
No. You said you couldn't breathe; from what else you said, I gather that you could barely breathe, and were having extreme trouble in breathing even a little bit. Common sense tells us that if you can barely inhale any oxygen at all, there's not much oxygen that can get into your blood. So an oxygenation reading of 82% is quite reasonable under the circumstances.
@CFS_for_19_years called this level "alarming", and indeed it is; that's why the nurse panicked. If your blood oxygen had stayed at this level for a significant period of time, you would have suffered widespread tissue damage. Part of the reason for this (unknown to the ER staff) is that those of us with M.E. have fewer disc-shaped red blood cells (RBCs) and more of the cup-shaped RBCs than other people. The cup-shaped RBCs aren't as flexible as the disc-shaped ones, and therefore can't squeeze through the tiniest capillaries. Since it's in the capillaries that the oxygen exchange with the tissues happens, this means that some tissues don't get as much oxygen as they need and as they otherwise would. So we can have a blood oxygenation rate of 100% and still suffer from cellular hypoxia. And for this reason, an oxygenation rate of 82% is much more dangerous than that number would normally imply. You were very fortunate that your oxygenation rate was back up to 100% within ten minutes. This is a major reason why if they had given you that second IV that you refused, you would have been in big trouble.
The reason your blood oxygenation recovered so quickly is that once your body started recovering, the fluid from your lungs naturally drained back into your vascular system. There was now room for oxygen to get into your lungs. Basically, once you were able to breathe again, your oxygenation rate started rising rapidly.
Now I had mentioned that the reason you had such great trouble breathing was due to pulmonary edema, which meant that your lungs were filling with fluid. For my source here, I'll pull out the
Professional Guide to Pathophysiology. On page 83, in the section entitled "Hypervolemia", there is a subsection entitled "Complications". One of the complications listed is "Acute pulmonary edema with hypoxemia", which is medical language for fluid in the lungs with low blood oxygen. You can find the selected page in Google Books
here.
So your ER doctor thought some of your symptoms were from magnesium, when they weren't; he thought that too much magnesium could cause tachycardia, when it can't; and since he didn't understand the significance of the 82% oximeter reading, he decided that the instrument must be broken. He had absolutely no clue about what your real problem was, nor its severity, and all of his ideas about what was happening with you were wrong. He may have been kind and attentive, but he was not a good ER doctor. (I hope he wasn't the person who tried to do the additional saline IV). I say this about him because in the unfortunate possibility that you end up in that ER some other time, you don't want him as your doctor. If you're in the ER, you need somebody who knows medicine.
Normally, fluid overload doesn't occur unless more than two or three liters of saline have been infused, but your previous reaction to the saline IV was a big hint that your tolerance level was much smaller than that, and your small size is a big part of the explanation. A full liter shouldn't have been given to you until it was understood why it didn't work the last time.
Do mean my height and weight or my blood volume? I weigh around 110 which seems like an average weight to get one liter of saline (or is that incorrect?)
That's below average weight these days, and your height is also below average. Also, women need somewhat less blood than men of the same size.
However, as I indicated earlier in this post, this doesn't seem to be the issue, as autonomic dysfunction again appears to be the culprit, and that is not at all dependent on your size.
I did not have low potassium in the ER which was tested within an hour of the episode. Does this change your theory or could the potassium level have increased by then?
No, it doesn't change my theory. I think that the post by Professor Edwards that I referenced earlier was very helpful in showing how complex these blood volume changes can be, and how what's going on is not always obvious from the overt symptoms. From what I understand, it would seem most likely that the actual total amount of electrolytes didn't actually change at any point here, but due to the changes in your relative blood volume, the concentration of the electrolytes in your blood changed, which has the same effect. If you had actually lost electrolytes, you would have had to have them supplemented to get your levels back.
Can water poisoning do permanent damage?
In extreme cases, it can be fatal. Fortunately, you were nowhere near that point. It can also do all sorts of other damage before it's fatal, but again, you seem to have been fortunate enough to escape this. You can Google "water poisoning" to get a complete description of what's possible; if you do, include the word "hyponatremia" in your search, so you don't get hits about poisoned water supplies, etc.
My sodium level was also not low in the ER (meaning it was inside the range) so I have the same question- does this change your theory or do you think the sodium had increased by that point?
Again, it doesn't change my theory, for the same reasons as before. You had symptoms that could be explained only by low sodium and potassium levels. If those tests had been taken when you were at your worst, they would have come out low. As before, the total amount of sodium wasn't changing, but its concentration in the blood was.
At this point, the fluid overload is getting serious, as you are starting to suffer from pulmonary edema, and fluid is beginning to fill your lungs. There's less space for air in your lungs, so that's why you can't breathe.
That sounds really scary to me, like it could do a lot of damage?
In the short term, the biggest problem was simply that it was the fluid was taking up space that is supposed to be used for breathing, and as a result, you couldn't breathe well enough to get enough oxygen into your blood. That's a serious problem, of course.
I would think that people in the ER would recognize the signs of hypervolemia, hyponatremia, etc. These are emergencies; these people are trained in emergency medicine. It's very surprising that they missed this.
Do you think they missed it based on my tests and that I only had one liter of saline (which they probably assumed was okay?)
Yes, that sounds likely. But the 82% oximeter reading was the smoking gun, and they ignored it. However, by the time you got to the ER, you were essentially recovered, and there probably wasn't anything they could see.
If they had caught it, what should they have done differently or what can I do differently now?
The main thing is that they would never have tried to give you more saline, which probably would have been catastrophic. As for what you can do, it's pretty simple. First, no more saline IVs! Second, you must assume that no medical personnel understand your condition fully, regardless of what they say. Dr. C may be a great cardiologist, but he sent you into this infusion before he figured out what went wrong with the last one. You were lucky this time; you don't want to have to depend on luck to stay alive and healthy. I'll have more to say later in a message to you.
Do you mean just getting enough fluids by drinking them orally?
Yes. I had mentioned earlier that I was considering saline IVs for myself, but my condition has been improving to the extent that I don't think they're necessary for me. Between the midodrine, the nebulized magnesium, and the other treatments we discussed, I think we can get you to that point reasonably quickly too. In any case, the saline IVs clearly aren't safe for you now.
My Vitalyte just arrived which is supposed to be the exact concentration of what is needed in the blood and I am going to try it tomorrow plus all the other things I drink like coconut water, Pedialyte, etc. Do you think this is enough?
Basically, yes. I'll expand on this more in my message to you.
Thank you and you are so kind to spend so much time explaining all this to me. I really appreciate all you have done to help me.
My pleasure.
Do you think I should still try the Mag nebulizer once I recover from this incident (or wait since my Mag was too high on the blood test?)
Your magnesium levels weren't all that high; they're about what I'd expect for you after a four gram infusion over three hours. Remember, the tech said that was too fast, and the speed affects the levels.
The amount of magnesium delivered by the nebulizer is about 3% to 5% of what you were given by IV. As you had no symptoms that can be attributed to that large dose, then taking a twentieth of that dose or less would be quite safe. I would recommend starting the nebulizer treatments as soon as you feel recovered from this incident, as they will speed your overall recovery.
