Episodes of nearly fainting

I have tested positive for neurally mediated hypotension. Dizziness is one of my main symptoms. But there seems to be something different happening. Or maybe it’s just worsening of my existing symptoms ?

I’ve had ME for about 5 years and although I’ve often had to lie down in order to avoid fainting, I never came this close as I have the past 7-10 days. It happened 3 times. Once just after getting up and walking a few steps, and twice after looking up to the ceiling (to set my air conditioning, at the top of my stairs, close to the ceiling). After only 2-3 seconds of looking up, I start seeing stars/darkness and have to sit very fast or I know I will lose consciousness.

I have had some cardio pulmonary testing done lately that triggered PEM for about 7 days but only one episode happened while I was recuperating.

Any thoughts on what I could ask my doctor to check ?

I’ve been tested again and again in the cardio department and my heart is fine. I do have bradycardia and low blood pressure, which aren’t helping.

The cardiologist I saw recently said he wasn’t concerned about my bradycardia, unless I have episodes of fainting. Maybe this is where I am now ?

 

I have had this problem for about two decades, and fainted hundreds of times. This may or may not be related to the heart preload problem, I guess it is. Most cardiologists do not test for that. The primary risk for me is getting too worn out, and then going up stairs. Though I have also passed out when getting out of bed. Treatment can be problematic, though some have had success. I hope you find some answers.

 

Could you possibly have POTS? I know someone who for 20 years had problems with high blood pressure, dizziness, and anxiety. It wasn't until last year when she started passing out that she was finally given the diagnosis of POTS and since starting medication, she is feeling so much better. Her blood pressure is finally close to normal, the dizziness, and the anxiety are a thing of the past. It took a year of testing and seeing many specialists before they finally figured out what the problem was.

 

Are you getting checked for CCI? (I know that is easier said then done)

 

Thank you ! Do you have any tips on how not to get hurt when fainting ? How do you manage that ?

 

No I’m not. I do not really adhere to the hypothesis of CCI as an ME cause so haven’t looked at that at all. Maybe I should work on opening my horizons, lol !

 

I had the long table tilt test done by a dysautonomia specialist 2 years ago. It showed Neurally mediated hypotension, but no POTS.

I don’t know if this can evolve with the illness ?

 

@Dechi
Is this feeling as though you will faint when your neck is tilted back or does it also happen if you keep your chin level with the ground and just raise your eyes?

 

I have never tried. I am not going to try it now, but tomorrow when I have to adjust the setting of the air conditioning, I will and I’ll let you know.

ETA : I tried it. It brought on some level of dizziness, but nothing like lifting my head and looking up does. It could have been from standing up and being somewhat hot.

 

This may be way off the mark but something I recall from my autonomic workup was a carotid sinus massage to check for carotid sinus hypersensitivity. Before worrying about things like CCI it might be worth considering?

I don't know much about it but understand that compression of the carotid sinus (nerve endings under the ears) can cause sudden bradycardia and/or hypotension in some people. It can occur just from turning the head or wearing tight collars.

 

Prevention is the only tip, but that is not only about preventing fainting, its about location. Be careful in places that are higher risk. Use an elevator rather than stairs if you can. Going down stairs should be safer than going up stairs, but has higher risk if you do faint. Get up slowly from sitting or lying. I often sit up in bed first, then wait a few seconds, before I get to my feet.

POTS and neurally mediated hypotension are different diagnoses, though I don't know a reason why you cannot have both. However with many NMH patients there is bradycardia, not tachycardia, and this was mentioned in the first post. This bradycardia is very dangerous. In severe circumstances the heart can slow to a stop.

 

Caution should be used in that circumstance.

Having the heart stop may, for some people, have negative health consequences.

Studies are still ongoing into this rare phenomenon, completely unknown before the advent of 'doctors' (so it may simply be attention seeking) but early observations include bacterial overgrowth in the intestines in the short term, with temporary mild swelling of the abdomen as a result.

Depending on external factors this usually resolves in a harmless 'explosion' if left alone, further indicating it may be psychological in origin.

Longer term effects may include a moderate reduction in an affected subjects ability to work, reduced appetite, and in the longer term some level of 'decomposition' may appear, as a normal physiological process resulting from prolonged inactivity.

Due to a total lack of cooperation so far from subjects involved in studies, in order to improve healthcare efficiency, GET is not advised until extensive CBT has been completed successfully.

On no account should a subjects, or their families, false mortality beliefs be acceded to, as neither fire nor placing the subject in a hole in the ground are appropriate treatments for people in the 21st century, whatever their beliefs.

We have ECT now, trials have shown that people, even those who suffering from this rare condition, move when sufficient electricity is applied, proving beyond any reasonable doubt that this condition is purely behavioral.

As such, primitive treatments are not appropriate.

 

What ??? Is it me or this makes no sense at all, lol ?

 

Sense no.

But money, careers, prestige, those it makes.

But it's not that relevant to your thread, so I'll delete it if you wish.

I just thought it was time for an 'interlude', given the depressing way the thread has gone.

 

No, don’t delete it. You have freedom of speech, my friend.

It’s not depressing. I’m not going to die. Not yet. My heart won’t stop soon, I’ve had bradycardia all my life. I might faint, but hopefully my dogs find me and lick me until I awaken...

 

Thank you, I’ll make a note of that for my doctor.

 

Hi @Dechi, if you had a CPEt done recently and had a crash, you may have exacerbation of your autonomic nervous system. These episodes can be scary. I remember actually passing out once, a few years ago. (I never ever pass out) For one second i felt something was wrong, and next second i felt the cold of the ceramic tiles on my cheek. I visited my doctor then and said these things happen and usually people do not get hurt from that.

Just being aware is already half the prevention. Do make sure to move slowly in changing position. Not a good time to change a lightbulb (especially if you have to step on a chair to do that).

I am hoping that this will pass for you soon and that you will return to your baseline. By all means consult with your doctor if this does not resolve.

 

Time for yet another investigation? Have you had Holter testing?

In my experience OI can indeed evolve, however, my experience is opposite to yours.

I spent many years fainting when getting up, standing still, looking up, etc. I had low BP during those years. I wasn't tested for POTS then, all I can say on that is that I never noticed any elevated HR.

More recently I stopped fainting so much and it takes a lot more to trigger a near-fainting episode though it still happens. I now have normal BP and I easily meet the POTS criteria. I suspect the POTS is a compensation mechanism to my previous hypotensive OI but who knows.

As for fainting safely, I learned to a) avoid triggers as much as possible (looking up or standing still can often be avoided), b) perform unavoidable trigger movements very slowly to give myself more time to react (you do have to get up from your bed or seat at times, but it can usually be done slowly), and c) know the early symptoms and get to the ground in a controlled fashion. If you catch the symptoms early enough sometimes it's sufficient to bend at the knees with the upper body leaning forward and looking down, at the same time as you tense the legs and abdominal muscles. And if that turns out to be not sufficient you don't have too far to drop onto your hands and knees. General awareness of position of reachable walls and firm objects that can be clung to to gently slide to the ground helps, too. Plus lacking any sense of embarrassment to perform those manoeuvres in public

 

@Dechi - what, if anything, happens if you raise your arms (elbows) above your shoulders?

 

I’ve left them about 10 seconds in the air and only felt a little tingling in the hands and fatigue in the arms and I was a little out of breath when I sat down.