Can't breathe when laying on my right side

[Valentijn]

The GP sent me to the hospital for a lung x-ray and some labs. The results for d-dimer already got back to my GP (blood was drawn about 90 minutes ago) and she called to let me know that one was negative - it was to rule out an embolism, based on my current issues + coughing up a couple globs of blood two weeks ago.

Also being tested: ESR, hemoglobin, "gluc"(ose?), Gamma-glutamyl transpeptidase, alanine aminotransferase, TSH, NT-proBNP (congestive heart failure), CRP, and "leukocytes and differential" under the category of "infectious mononucleosis".

The GP also got to experience my blood pressure issues again ... took her 5 tries to get a reading doing it by hand, and she said it was very faint.

 

[Enid]

Any chance you could treat mono-n, just recalling all your symptoms (not a vein to be found then, all baffled). I know all your symptoms Valentijn and will you treat mono.

 

[Valentijn]

Any chance you could treat mono-n, just recalling all your symptoms (not a vein to be found then, all baffled). I know all your symptoms Valentijn and will you treat mono.

I ordered mono testing through a private lab about a month ago, and should be getting results soon. If it's positive, I'll see if I can get a local referral to whoever deals with chronic infections. If I can't get a local referral, I'll go to Belgium (Dr Kenny de Meirleir), or back the US for treatment.

 

[rosie26]

Valentijin, Are you feeling a bit better today ?

 

[Valentijn]

Valentijin, Are you feeling a bit better today ?

Yeah. When going to bed, my breathing was feeling crappy again, so I took another Strattera right away instead of waiting until things got really bad. I fell asleep pretty fast after that kicked in, and slept well until about 5:30 am. The only problem with this approach is that the drug wears off after about 6 hours - but maybe getting to bed early and not straining my system by staying upright too late, plus taking the Strattera, I can avoid turning blue

Or I'll just take naps to get the extra couple hours I need. But I should be getting more answers today. My main hope right now is that I won't need to keep taking a drug 4 times per day to avoid feeling like I'm suffocating (or, like, actually suffocating).

 

[Valentijn]

Oh, we also went ahead and ordered a pulse oximeter - one of the little things that clips onto the finger and shows oxygen levels and heart rate. I'd been thinking about getting one anyhow as an easy way to get a continuous heart rate reading for help in pacing, so now I've got an even better reason to get one

 

[rosie26]

That's great you got some sleep last night. You would have been anxious. I guess if they had found anything wrong with the lungs they would have told you by now.

I looked up Trepopnea that LaurieL spoke of in above post. Sounds the closest description to what I get, but I get the uncomfortable overheated feeling in my heart as well and a crushedness, along with the feeling my lungs cannot expand.

You might have added complication of something viral you may have caught recently ? Just to make things more unpleasant for you !

Hang in there ! Will be thinking of you x

 

[LaurieL]

Hi VJ,

I have been thinking about you since you posted this. I keep thinking back to when this was happening to me, and trying to remember what else was going on at that time as well. Your cyanosis is what is bothering me. That is either hypoxia from lung presentation of something or another, or it is hypoxia of another sort.

I had hypoxia of another sort. I remember at that time when going through the positional SOB, I was also getting weird bruising, and if I cut myself, my blood was a chocolate brown color. I didn't have cyanosis at any time, but cyanosis is a classic symptom of hypoxia induced by acquired methemoglobemia.

What I have seen in many CFS patients like us, is the propensity to develop B3 deficiency states without diagnosis. The medical establishment states that B3 deficiency does not exist except in those with alcohol related illnesses. Alcoholics. But what the establishment has failed to recognize is that in some disease processes in which the SNP's can and do produce ethanol, ammonia, and the failure of these variation enzymes to process the a fore mentioned, and there for mimicking the alcoholic state. This is exactly what happened to my mother. They accused her of being an alcoholic when in fact, she didn't drink at all. These same variations in the enzymes also being responsible for the alcohol intolerance many of us experience.


Disruptions of any of the following mechanisms can lead to methemoglobemia. Cytochrome B5 reductase, NADH methemoglobin reductase minor pathway, deficiency of ascorbic acid, or deficiencies in the glutithione enzyme system, pyruvate kinase deficiencies, G6PD deficiencies which affect NADPH.

One can acquire methemoglobemia by ingesting or exposure to oxidizing antibiotics, drugs, chlorates, bromates, and nitrates.

I believe many of us go in and out of this state in CFS.

LaurieL

 

[rosie26]

Good lot of info LaurieL !! x

 

[Valentijn]

I took Strattera before going to bed last night, and slept really good. 8 hours with no problems, then laid there for another hour to make sure I wasn't gonna go all Smurfette again. I'll try tonight with no Strattera, and declare it a transitory episode of "WTF" if I don't have any problems.

 

[rosie26]

that's great Valentijn, what's WTF ? I'm not good with the abbreviations

 

[Valentijn]

that's great Valentijn, what's WTF ? I'm not good with the abbreviations

"What The Fuck?"

 

[LaurieL]

Its amazing what eight hours will do!!

 

[Valentijn]

My pulse oximeter arrived today

So I did some testing relevant to my trepopnea. I spent 30 minutes on my left side, 30 minutes on my back, 30 minutes on my right side, and 15 minutes on my stomach
POSITION..O2...HR
Left......95%..80
Back......92%..95
Right.....95%..95
Stomach...95%..90

While on my back, the oxygen saturation dropped below 90 several times, into the upper 80s - indicating hypoxemia. And even the "good" results are lower than what's normal for healthy people (96-99). Also my heart rate stayed really elevated in any position other than my left side, which probably isn't conducive to sleep either.

And that's just after half an hour in those positions, so even on my good side I might be dropping lower during the night.

When sitting I'm at 97-99% oxygen saturation, and 85-95 heart rate.

 

[Valentijn]

Went to the doc this morning and got the rest of my results. ESR at 31 (highest it's been?), CRP a bit elevated, and ALAT at 53 or something (previously at 20-ish). The doctor doesn't know what to make of that, and is worried that Strattera might be causing the elevated liver enzymes. I'm going in to the clinic next week for pulmonary testing, and if that's normal she'll send me on to a cardiologist.

She's still very Not Happy about me being on Strattera. She thought it was an amphetamine, which we corrected (it's just an NRI). But is still worried about possible liver damage from it. She said she doesn't like that I'm on it, and we agreed - I'd rather know what's really going on and fix the underlying problem!

No alternatives for the present, since I can't sleep without it. My oxygen levels drop while off of it, and my heart rate rises to compensate. Then oxygen goes up again, and heart rate tries to slack off again. If I don't take Strattera now, I'm at the point where I'm trying to sleep with a heart rate of 100-110 - it don't work

I see a few possibilities: 1) I've developed a tolerance/dependency for Strattera (unlikely since that's never been reported), 2) my norepinephrine levels are dropping even further to the point of being almost nonexistent (still waiting on test results for this), or 3) it's a new problem which happens to be helped by increasing my pulse pressure via Strattera (more oxygen circulated per heartbeat, so the heart doesn't have to beat as fast).

 

[SOC]

Valentijn

Those heart rates are awfully high for lying down and sitting. Doesn't that bother your docs? Do you have any tachycardia treatments going at the moment?

 

[Valentijn]

Those heart rates are awfully high for lying down and sitting. Doesn't that bother your docs? Do you have any tachycardia treatments going at the moment?

Yeah, the problems do bother her. Hence the pulmonary testing, then the cardiologist.

And my heart rate does get down sometimes - it just seems to be completely independent of anything I do with my body. Yesterday it bounced around between 95 and 105 almost all day (yuck), then settled down to 80-85 in the evening, which is usually my worst time of day. I slept great, albeit still with Strattera.

 

[SOC]

Yeah, the problems do bother her. Hence the pulmonary testing, then the cardiologist.

And my heart rate does get down sometimes - it just seems to be completely independent of anything I do with my body. Yesterday it bounced around between 95 and 105 almost all day (yuck), then settled down to 80-85 in the evening, which is usually my worst time of day. I slept great, albeit still with Strattera.

I know what you mean. It's hard to function when you don't know what your HR is going to do one hour to the next. It's been a lot better for me since we finally got treatment for POTS sorted out -- not perfectly, but better. Still have the odd day where my HR goes flaky, though.

Good luck with the pulmonary testing. I hope you get a cardio like mine who actually listens, not one of those arrogant know-it-alls.

 

[Valentijn]

I had my cardio appointment yesterday - they did an echo and an ECG, then I had a chat with the cardiologist. Everything was normal, which is good to know. Though I'm still left not knowing what caused the episode, so that's annoying!

The staff were all very nice. Even when the cardiologist mentioned weight contributing to part of the problem when laying on my back, he said it was something to deal with when the ME medical problems aren't interfering with attempts in that direction. And he said he had no idea what was causing problems when lying on my sides as well, but is quite sure it's not my heart itself that is dysfunctional.

So my heart and lungs are fine. I think that leaves neurological dysfunction as the most likely culprit. Which is a bit reassuring, since I've probably been dealing with that for a while now with orthostatic intolerance, and it also indicates that Strattera is likely to help if any of these turning-blue-episodes occur again

On the other hand, I'm a bit concerned that neurological symptoms seem to be intensifying. But as an ME patient, I can't get any actual investigation from a neurologist, so there may not be much I can do to search in that direction. I'll try talking to my GP about it one of these days - maybe she can set me up with a neurologist that will take hypoxia seriously, even though none around here seem to take ME/CFS seriously.

I'm also going to get serious about pacing, with my heart rate as a guide using the pulse oximeter. That seemed to work quite well for a week or so, though I stopped pacing a couple days ago to be a bit "sick" for the cardiology appointment - I think it worked, since they weren't able to get a blood pressure reading There's definitely a lingering oxygen/pulse reaction to exertion (due to low pulse pressure?), so by avoiding getting to the Yo-Yo Stage where pulse is constantly having to rise to compensate for dropping oxygen, I might be able to avoid future nasty episodes.

 

[maryb]

The staff are always 'nice' - but they don't help really do they.
Still in limbo - its not normal to experience what you did. But because things were okay on the day - then you're fine - but you're not...........
Oh and don't they love to comment on weight - a good fail safe area for them no matter they don't seem to dwell on it.
It is true though that we go through these funny phases where the heart goes out of sync - I've had a few and A&E trips which showed something not quite right but not concerning them I just couldn't work out what was going on either - Hr and BP all over the place every day. I used to wonder at times if it was an infection/inflammation around the heart which settled down when your body was able to fight it off. That wouldn't show up on ordinary cardio tests - but we can only guess..... blinking medical detectives)

Hope things settle down for you, its so worrying though I know, another symptom that they can't get a handle on.
Yes pace and pace, see what happens with the pulse oximeter readings.