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[StayAtHomeMom]

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?

[MomtoGiuliana]

Welcome to the forum!  I'm glad you have found it helpful.

I am not sure POTS is quite as rare as your doctor suggested.  My specialist for example has noted that he believes it's actually not uncommon but often mild enough to be overlooked or misdiagnosed as depression/anxiety.  As doctors become more aware of it, it may become a more frequent diagnosis.

I have read that kids and teens can have hr changes that look like POTS (and would be in adults) but are considered in normal range for kids.  Although a change of 50-60 bpm sounds large and also symptoms with standing indicate to me a possible problem.  Glad he will see a doctor.

I had not heard of POTS prior to my diagnosis but others here did research on-line and bring the idea to their physicians.

[DizzyGirls]

Hi StayatHomeMom!  I'm a stay at home mom, too!  You asked if anyone had ever had to come up with their own diagnosis and then have to convince the doctors to confirm it.  Yes!!  A thousand times, yes!! That's all I do.  There is not one doctor out there that has ever diagnosed anything without my bringing it up first.  It's all I do.  I had a doctor tell me that I should concentrate on being a mom and let the doctors do the doctoring.  If I did that, my daughters would be dead.  That's sounds extreme, but it's true.  This is how bad some of them are, I had to take my 20-year-old to Urgent Care this last Sunday, and the doctor on duty actually questioned my daughter's tethered spinal cord that she had when she was little.  He said "well, how did you know it was a tethered spinal cord?" (insert badgering sarcasm here).  I said "because she had spinal cord surgery at 3-1/2 to untether it!"  (would like to have said "you idiot"!)  That visit was full of badgering sarcasm and I will find a way to turn him in, but that being said, whether they are rude or just unknowing, you will most likely have to do what most of here have had to do for years and that is find the diagnosis first, and plead your case to the doctor.  You won't meet a finer group of people here!  My daughter is finally getting some help because of their knowledge and perseverance.  Hang in there!!

[StayAtHomeMom]

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.

[corina]

Welcome to DINET stayathomemom! Glad you found us!

[looneymom]

I am also a stay at home mom because my son had a severe case of POTS. He was diagnosed when he was 11. Welcome to the forum and hope you are to find answers for yourself and son. POTS is a rollercoaster ride. Never a dull moment with this illness.