The Saga Continues.....

Lots of things to consider

by crustyg - 2020-09-16 03:02:05

The Doc who suggested you drink too much water *may* be on to something - depends a lot on the numbers.  I've met one or two patients in the kidney stones clinic I used to run who would drink 3-5L of water per day, which is too much (unless matched by losses due to perspiration in a hot climate).  What can happen is that this much water intake produces far too much urine, and it washes out the very high sodium concentration in the concentrating part of the kidneys.  This in turn leads to water+sodium loss, which can be seen as a low plasma sodium. This can lead to lower atrial filling pressures => less blood in the ventricles => lower cardiac output => feeling of breathlessness.  It's called nephrogenic diabetes insipidus in the textbooks.

Any flushing with these attacks?

Some more thoughts

by Gemita - 2020-09-16 05:07:56

Well one thing I do know Alejandro about your condition is that we are going to have to take the diagnosis and evidence to your doctors now, since they are not going to help you once they get on to the anxiety state, a diagnosis which can be made it seems in the absence of a positive test!

Interesting what crustyg has written. 

. I recall I wrote privately about the possibility of tachy arrhythmias causing release of atrial natriuretic peptide hormone which acts as a diuretic to lower the blood pressure and heart rate and regulate the calcium and salt in the body and whether your electrolytes need to be checked more frequently.  This sudden loss of sodium can cause faintness, weakness.  It is known to occur in patients with tachy arrhythmias when the heart rate goes above shall we say 120 bpm causing excessive urination as I well know!  And yes you do have evidence of tachy arrhythmias which we think might be pacemaker induced.  You still need to push for answers and better monitoring for these events too (!)

. Your sudden feelings of weakness especially when you feel hungry could be caused by low blood glucose (hypoglycaemia) and if this is only intermittent it won't show up on an HbA1c blood test like consistently high blood glucose levels (Hyperglycaemia) would.  I suffer from hypoglycaemia and can crash quickly, as would a diabetic on insulin if their blood glucose dips too low.  It is a real condition and should not be ignored.  I attach a link

https://www.nhs.uk/conditions/low-blood-sugar-hypoglycaemia/

I suggest you test your glucose level when you next experience these symptoms.  Buy a blood glucose monitor like Contour Next.  If you drop below 70 mg/dL (3.9 mmol/L) or lower during testing this could be harmful and you may have one answer for your acute symptoms. 

.  Now dont get anxious on me Alejandro (because I know you are not - you are merely trying to get a diagnosis)  but there is a fairly rare condition known as Carcinoid that you could ask to be tested for.  I was tested for this when I got flushing.  Also look at your meds/thyroid for causes of flushing.

That is it for now otherwise I will be getting into the territory of writing too much again.

Except (!)  there was one more thought, get more autonomic tests done with the best professor of autonomic conditions you can find in your area.  I had this done in the UK because of my Ehlers Danlos Syndrome.  I attach a link on Dysautonomia.  I know you have already had some tests done for POTS, but go further

https://my.clevelandclinic.org/health/diseases/6004-dysautonomia

answers

by Tracey_E - 2020-09-16 08:41:07

Exellent advice from Gemita and Crusty, particularly electrolytes and POTS. POTS is a tricky sucker to diagnose. Have you had a tilt test? Good luck with the new doctor.

Thank you!

by arent80 - 2020-09-16 12:21:15

Even though I'm not getting a diagnosis or answers to my issues, reading your comments ALWAYS make me feel so much better. So I thank you all for taking the time to respond. I appreciate it more than you know. 
 

Tracey- Tilt Table is a yes and it was negative. ALL of my big issues come on out of nowhere typically. That's why this is so hard to catch. Sitting in an ER will never bring them on as they usually start with activity of some kind.

One other thing is I notice in the morning my chest feels stuffy when I wake up. I do use a CPAP nightly but before my PM this never happened. I feel like it's being caused because of the pacing. Sometimes when I'm sitting on the couch I KNOW I'm at my low end of 60BPM because of how I feel. I check my watch and guess what? I'm at 60BPM. It's like this cramping feeling almost in my chest. I don't feel it like I do with V-Pacing but I notice something is happening. All of this is so hard to explain that's another problem. Anyhow I will take all of your advice and let's see how today goes. Thank you all again!

Similar symptoms with hunger

by barnet38 - 2020-09-17 07:37:22

Hello!

I experience similar symptoms with hunger.  I have received the same advice about limiting water intake, and have been told I have hypoglycemia.  This is what I do to help manage the condition:

1. Limit caffeine intake.  I have one cup of coffee in the morning.  Any more than that and I will be dealing with problems all day.

2.  Eat frequently, as in every couple of hours.

3.  Meals and snacks need to have protein and carbs.  Cheese and crackers (such as triscuits) plus some fruit or vegetables make a great snack.

4.  I still drink a lot of water, but my cardiologist recommended having a sport drink, such as Gatorade, if I have any symptoms.

5.  Always carry a snack so you can raise your blood sugar quickly if needed.

Hopefully this helps!

Hello Barnet38!

by arent80 - 2020-09-17 19:52:14

Excellent advice and I will be sure to follow this. Thank you so much for commenting! I appreciate it very much. All the support helps more than I could ever explain in words. Cheers!

Alejandro