StayAtHomeMom

So I am wondering how many people have found their cause and what it is. My urine analysis came back normal so it is not hyperPOTS for me. I had an ANA done shortly before I got sick that was negative. I have been on 20mg propranolol for a few days and it is helping my heart rate but not my breathing issue (which is my number 1 issue). So I am hoping maybe someone has the same issues and they found their cause. I have thought about Sjogren's but it doesn't usually have a breathing manifestation that doesn't show up in any lung test.

I have been sick since July 2015. I had doctors do the same and I had to more or less self diagnosis and request the tilt table. I feared it too. I did have the IV but they never had to use it. It was more for just in case. My technician was very soothing and helped me get through it. It was rough and I was exhausted afterwards. Try to get a ride. But afterwards it was a great sense of relief to be diagnosed with POTS. No more I am crazy and it is all in my head. Good luck and I hope you find your answers either way.

I have the same script and I am terrified to try it because my bp is almost perfect, but my pharmacist said to cut them in half if I wanted when I started. And my Internist reassured me that if I reacted badly it would on be in my system a few hours because it is fast acting. You should double check with your prescriber and/or pharmacist though. Maybe it reacted with another medicine. I have seen that depending on your type of POTS you can reactly oddly to medicines in general and propranolol can cause issues. I am trying to avoid it at the second til I get my test back on hyperPOTS. Hope you figure it out soon.

MomtoGiuliana: thanks for the welcome. I am hopeful for more info on POTS to be found in the future. Just this past October they found a genetic link between POTS, EDS type 3, and MCAD. DizzyGirls: I have never had a lot of experience with doctors until 2015. I had 2 mostly normal pregnancies and pretty healthy kids and hubby, so no reason. But I am beginning to wonder if doctors try to absorb too much information and try to act infalliable so they just kinda fail. It is so fustrating dealing with doctors that keep telling you it is smoking and anxiety. This doctor who has seen me a total of about 30 minutes knows my body better than I do. My favorite moment was when my PCP threw her hands up and said I have no clue. I think you need to try to find an internist because I am stumped. Lol.

I am sorry to hear about your daughter. I have only been diagnosed with POTS for a few weeks and I fear that it will be in my boys' future as well. My great suggestion is to find a good Chiropractor. I know a lot of people think they are quacks, and some are. But the search for a good one is definately worth it. I am hypermobile (possible EDS type 3) and all my joints are super loose, but if I go to my Chiropractor regularly I do notice my joints stiffen up and don't feel so loose. I am not sure where you live but years ago there used to be a clinic called Chiro One in my area. If their franchise is still open nationwide, look up how their practice works and try to find something similar. It took me a while to find my current one but he is worth it. My 14 year old son (who is showing signs of POTS too) is hypermobile like me as well. He was also diagnosised with femoral anteversion a few years and is the klutziest kid I have seen in a long time. My chiropractor took a look and he also had scoliosis. Sometimes things are there that suprise you and a chiro can help fix it. Sorry this was so long winded, I just figured I would add my 2 cents and could hopefully help.

I just wanted to announce my presence on this forum. I have been sick since July of 2015 and in my quest of finding my diagnosis this site has been extremely helpful. I went for a short jog (about 15 minutes) and afterwards I feel the need to sigh or yawn every few minutes since then. During the time since then it has never went away only varied in intensity. I have been to the ER 3 times due to what seems like hyperventalation. First time it happened it scared the crap out of me. I have managed to deal with it over time but it is still irritating. Of course because I was exercising I was tested like crazy thinking it was asthma. after seeing a pulmonologist, and allergist, and an ENT they ruled all of that out. and albuterol was the most horrible medicine I tried. Fast forward to Novemember and I was talking to my mom about the other secondary symptoms that the doctors were ignoring and POTS came up. So I looked up the definition and did a quick poor man's tilt table and was shocked. In just a few minutes my heart rate jumped to over 130. So i seen my PCP and requested a tilt table be done. They did a poor man's at her office and it didn't show anything but she was willing to send me to a cardiologist. Seen the cardiologist a few days later who didn't even talk to me, I spoke to his assistant for 30 minutes about everything going on and she leaves. The doctor comes in, as the assistant pressumable filled him in, and checks my heart beat and blood pressure sitting and standing (manually by the way which was odd) and says no POTS or any autonomic dysfunction. it is anxiety and smoking (I smoke 1/2 of what i did prior to being sick). I was so mad that day. By the way my heart rate on that visit was 106. So I went home and started to do my poor man's tilt table every day with my blood pressure machine at home. it consistently averaged a 35 BPM increase in 5 minutes of standing and would keep increasing the longer I stood there. After Christmas I brought these facts to my Internist (different from my PCP) and she said I think you are right you need to get a tilt table. But she warned me it is really rare ( she only had 1 POTS patient). She sent me to a different cardiologist who was understanding and open to the idea that it was even possible. Did the tilt table test and it said I averaged above 130 for the whole 45 minutes of "standing" there and my blood pressure didn't change much. I have personally not seen my results just going by what the cardiologist told me over the phone. Also had a 24 hr holter moniter that showed no arrythmia (glad since my father has AFib so i was concerned). but when I asked him about testing for causes he told me there is no cause just to treat it and prescibed me a beta blocker. (Biggest load of crap, I know) Thankfully my Internist is the greatest doctor I have ever had. We discussed possible causes and tests and I changed her to my PCP since my old one was a family physcian nurse practioner and wasn't equipped to apparently handle someone like me. I just completed my 24 hour urine sample to test my catecholamine levels so I should get those results hopefully this week and go from there. I am not sure how accurate it is gonna be considering I smoke so it may come up a little funny. Personally considering the rarity of POTS to begin with, it would be just my luck that it would be even rarer and be HyperPOTS. That being said I am looking at heriditary causes because of my 14 year old son. November of 2015 he started getting daily headaches (as his main symtpoms). Eye doc, allergist, and ENT all say he is fine . Started doing a poor man's on him a few days after my diagnosis of POTS and his heart rate jumps an average of 50-60 BPM in 5 minutes of standing (I can't get him to stand much longer because of his symptoms). That being said his blood pressure does weird things so I am not sure if the blood pressure is causing the heart rate flux. He goes tomorrow to see the doc to start his long irritating process of trying to get a diagnosis. As an afterthought to this post: Did anyone else have to come up with their own POTS diagnosis and push for their doctors to confirm?