Pots Diagnoses After Walking Pneumonia - Transient Condition?

[vips]

Hi,

I recently got diagnosed with POTS following a bout with walking pneumonia.

So I have been reading up a lot on POTS and trying to get some further understanding on my condition. Several of my doctor friends believe this may be a transient condition and I may be able to recover from this. My primary care phy does not say either way yet...he is leaving it to the specialist I believe (whom I am seeing in the upcoming week).

As understandably, I am a bit anxious about this whole thing since POTS is new to me, and hence trying to get more information. So wanted to know if anyone else had, or knows someone who had, a similar experience and can share if there was a full recovery or not in such a case...please read background below for my experience.

Thanks in advance to all.

Background:

I had a bout of pneumonia last month with the bacteria being the mycoplasma pneumoniae. Took a 15 day (3 courses) of zithromax, as recommended by my doctor. Well, after 15 days, I had 3 ER visits where I was given 2 litres of IV saline each time and sent back home, except on the last visit where they admitted me for a couple of days and diagnoses was given as POTS since all other tests were negative. In subsequent week, MRIs were done for adrenal and pituitary, which were also negative.

Currently my hr goes up by ~30-40 bpms from sleeping (60) to standing position (90-100). In hospital it went from 60 to 120 in those position. One instance at the hospital, it even went upto 160 in sleeping position and came back down after 10 minutes...this was after being kept overnight on slow dextrose IV....(I don't think it was anxiety??) Currently, light walk to bathroom & back seems to something increase the hr to 110 and sometimes (when well hydrated) seems to be better and stay between 90-100.

BP seems to be just a few point different each time between sleeping, sitting & standing positions.

I was prescribed fludrocortisone for now. It is almost 2 weeks out of hospital and although my HR is better, I believe it is only due to being well hydrated and eating well in a day, and taking the fludrocortisone. Also trying to keep away from all diuretic foods for now.

I am going to see a endocrine specialist and cardiologist in the upcoming week. I am on mostly bed rest for now as I am still trying to regain my strength and weight. I am 39 yr old male with pre-pneumonia weight of 135 lbs, and currently 124 lbs. I had a couple of bouts of severe fatigue also last year but there was no real diagnoses at that time since it went away after a week, each time. Generally, I have had stamina problems all my life.

[flop]

Hi, welcome to the forum.

Developing POTS after an infection is how many people join our family. Sounds like you have had a rough time so I hope you start to feel a bit better soon.

It is difficult to predict the course of POTS as it is actually the name for a group of symptoms (a syndrome) rather than a specific disease. There are many causes of POTS but the doctors doing research are still in the early stages of working out the causes and sub-types / groups. In general people who develop POTS after an infection seem to be more likely to recover than those of us with problems such as Ehlers-Danlos Syndrome as a contributing factor.

As you have already discovered staying well hydrated is one of the key factors in feeling better. Drinking lots of fluids along with a high salt diet helps to increase your blood volume, this keeps your BP more stable and helps reduce the tachycardia on standing.

You may already know that fludrocortisone works to increase the re-absorption of sodium in the kidney. As the sodium moves back into the blood osmosis means that water follows the sodium. This is why it is important to take plenty of salt and water to get the maximum benefit from fludrocortisone.

In the early stages of recovery from pneumonia you will need to rest. However I would encourage you to sit out of bed in a chair when you can. My cardiologist says that it us important not to have too much bed rest as the body becomes acustomed to lying flat and re-sets it's blood pressure sensors to the lying down position, this then makes being upright even harder for our bodies. Aim for a mixture of lying, sitting and standing/walking to prevent deconditioning.

I hope you start to feel a bit better soon,

Flop

[vips]

Thanks for the info & suggestions, Flop.

I also read some articles in NDRF and Vanderbilt studies; but you are right, it is all in the early stages still to identify all the types/causes. However, there is no clear confirmation anywhere that POTS symptoms were cleared in such an experience (i.e. after a pneumonia like illness) or how long it took and how to take care in this case.....I see mostly just statements that in general people with POTS after illness are more likely to recover. I wonder if these centers have any patient studies for such cases. I will ask my cardio also.