October 27, 2012 at 6:54 pm #339
OMG! After having POTS (and dysautonomia) for about 20 years, I am finally being taken seriously by a cardiologist. I have been self-diagnosed for years, trying and trying to get someone to take me seriously and to get a formal diagnosis of POTS.
After seeing the results of a 24 hour BP monitor, I am being sent to an Electrophysiologist in Hamilton, Ontario. That is a cardiologist that specializes in dysautonomia. They are still saying my holter was normal, which is insane for just sitting, standing and walking.
The cardiologist could see my heart rate every half hour during the day and every hour during the night. She could see a tachycardia in the middle of night (I stood up to go to the washroom) and a tachycardia when I got out of bed.
So, I am extremely excited to be taken seriously after 20 years of suffering.
Also, I am a little concerned b/c one of the readings was actually while I was sitting. My HR was 154. It was just after a liesurely 1 hour walk, but I was sitting. Does anyone know what this would be?October 28, 2012 at 10:12 pm #3077Dr. DianaKeymaster
MJ! This is GREAT! Now having said that, can you pretty please watch the video “Is it POTS or Dysautonomia”? One thing that can EASILY happen is that doctors (cardiologists are known for this because they are, well, cardiologists) will diagnose POTS, but forget about the other symptoms of autonomic dysfunction we likely have. Try not to let them pigeon-hole you like that, OK? And YES, Heavens, I think most of us can even wake up at night, heart racing, gasping for breath for no “obvious” reason. And I watched my heart rate change by 30-50 bpms just sitting quietly and watching it! Crazy, huh? I showed the doctor’s technician, who was floored “(“what on earth could be WRONG with you”), but the doctor called it “anxiety”. Really? After 46 years with no “anxiety”, suddenly I get a virus and have “anxiety”, tachycardia, nausea, IBS, difficulty breathing, difficulty standing, a tremor, blah, blah, blah? Anxiety? Really? Anywho, MJ, GREAT news, but don’t let them minimize your other symptoms, OK? And congrats on the validation. It’s about time, don’t you think? 🙂 DianaOctober 29, 2012 at 4:27 pm #3082
Thank you so much Dr. D. I have been suffering so long, and yes I need validation. You also think (from some pics) that I have CCSVI and vasculitis. So, a formal POTS & dysautonomia diagnosis is a great start, but I also need to pursue the CCSVI and vasculitis. Oh, and the cardiologist saw my ‘Crazy Veins’ video, and said my veins were like that b/c I am thin! LOL! However, I am not being too hard on her b/c she actually took the time to research POTS and find a specialist to send me to.
And yes, it is MUCH more than POTS. When I wake up in the middle of the night (other times too), my heart is POUNDING SO HARD all over my body, I BURNING UP SO BADLY, I have ‘CRAZY VEINS’, and the list goes on (oh yeah, and of course the tachycardia).
I am going to watch your video again (I did watch it when it was first posted) and I am going to print off something from dinet.org. I read it the other day. It lists all the tests for POTS AND dysautonomia; going to bring it to my appt. with the Electrophysiologist.
Thanks again, MJ 🙂October 29, 2012 at 4:32 pm #3083
Yes I know exactly what you have. It is a walking phobia….anxiety…….lol we have all heard the catchall diagnosis of anxiety. I would suggest a heart rate monitor watch. Until I realized that I indeed had tachycardia I never recognized why everything has always been so hard for me. I will tell you my heart rate during a 2.5mph walk on tread mill will shoot as high as 180-195 sitting will lower it quite a bit but takes time. So check you pulse rate before,during and after. You may find that it is high after eating, taking a shower or pretty much any physical exertion.
20 years is a long run, stay strong.
LOL! I know, the cardiologist actually said my veins were distended because I am thin! What a joke. Yes, my veins are distended, I am SOB (short of breath), have a tachycardia, my body is burning up, and my feet are so hot and red that I have to put ice packs on them – BECAUSE I AM THIN! What a joke.
I guess we’ve all been there. Thanks for your input 🙂
- You must be logged in to reply to this topic.