vips

I recently has a CT and they found a small mass in my lower left lung lobe. Could be something from my past pneumonia, but doc wants to do a bronschoscopy and biopsy to check it out. I am wondering if anyone has experienced a bronchoscopy and/or know of any risks involved with it for POTS patients. My doctor assures me that it should be fine and risks are quite low. Primarily they would give me a drug to make me sleepy (NOT general anesthesia), and put a numbing drug in my throat, push a scope down and get to the mass, then use a needle to get some cells out for biopsy. I was diagnosed with POTS following my pneumonia last feb, and been trying to recover from it ever since. I have recovered about 40% of my lost weight and energy after 5 months. But my POTS standing HR are still up to 100-120; however I am not on any medications yet. Thanks -Vips

I too have got vitamin D deficiency (D3 is 11)...Doc has given me 50,000 IU, once per week for 6-8 weeks (initial loading) and 1000 IU thereafter; then re-examine in 3 months. I was dx-ed with POTS following my pneumonia 2 months ago. Have been on more-or-less bed rest due to fatigue and weight loss. Had B12 deficiency also, but supplements have raised it to normal. Took my first Vit-D pill recently. I also hope that vit-D helps in energy and weight loss.

Any recommendations for a good neurologist for POTS, in the San Francisco bay area, CA. Thanks. -Vips

Thats good info April. I also checked with the pharmacist and she asked to check with doc, as it varies for individuals. I sent a message to my doc and waiting to hear back on my question. BTW, did you get any side effects while tapering off? How long have you been off of it? And is it working well for you without any meds?

My ACTH was normal so doc does not suspect Addison's. I am taking florinef for POTS. Doc wants me to come off it since there was no endocrine problems (brain/abdomen MRI were also -ve) and does not want me to get low pottasium (hypokalemia) issues. He wants to taper it off and, I suppose, see how I am doing next time I see him in 2 weeks.

I have been taking florinef for almost 4 weeks now. Recently, my endocrine specialist asked me to stop taking florinef, since all the endocrine tests came negative (although I dont think I was tested for aldesterone since I was on florinef since the POTS diagnoses last month); The doc mentioned to take it every other day and then every third day and then stop. However, I still forgot to ask him how long I should be on the every-other-day course and how long on the every-third-day course. I have started skipping a dose since friday last, and I am seeing slight more weakness than last week; also have a headache today, although I took a dose this morning. My heart rates are also higher than last week...as well as seeing higher HR in middle of night while sleeping..but that could be due to dehydration overnight??? I also read that Florinef does have suppressive effect on aldosterone production...so worried about that. Have to ask doc if natural aldesterone production can restart after taking florinef. Worried that I may see higher HRs from the stoppage. Has anyone tried stopping florinef and have had any side effects, or successfully stopped it. Thanks, -Vips I recently had penumonia and developed POTS and was put on florinef 0.1 mg per day dosage. However, my cardiologist's preliminary diagnoses is Chronic Fatigue Syndrome. I still have to see further specialist (CFS and neurology) before I am correctly diagnosed, I suppose.

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.

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.