StayAtHomeMom

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About StayAtHomeMom

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  1. Tilt table is the right track. My 14 y.o. son's heart rate and blood pressure do the same weirdness. No fainting spells though. He functions as long as he takes it easy. Ask about a holter moniter as well. That way you can show your heart rate fluctuations. Don't give up. It will be a long journey but it will be worth it when you find your answers. Fingers crossed that it is just the growing version. Something like 80% of kids grow out of it by the mid-20s. I wear a garmin vivosmart HR so that I can watch my heart rate easily and tell myself "you can push through it" or "go lay down before you hurt hourself." It is very comforting. Have you had all of the tests to confirm you gi diagnoses or are they guessing based on symptoms?
  2. I am hoping that is what she will be willing to do as well. Found out today the appt is in September. They had to wait so long so they will insurance will be accepted. Still super excited though.
  3. I got some interesting and exciting news today. Last week my cardiologist decided I should see an Electrophysiologist considering my heart rate problems that he can't control with the meds he has tried. He is a good cardiologist but seems to know very little about my condition. I was supposed to see a local EP but he told my cardiologist that I need to see a doc out in Bowling Green. It will be a long trip but she is the only POTS specialist I have been able to find on the internet in KY. I am excited that the EP recommended her. She is supposed to be amazing. I am super excited for the chance to see a doctor that specilizes in POTS even if it hours away from where I live.
  4. My hr will vary daily and my heart rate doesn't always go up the 30 points, sometimes it is only 20. My bp doesn't change a whole lot usually. Your numbers kind of remind me of my son's. His bp does the weird change almost everytime. His hr shoots really high normally though, at least 50. So far no official diagnosis for him. Appts are on hold til I get my vehicle back up and running. Glad you got a cardiologist appt.
  5. @Don have you ever had an echo done on your heart?
  6. I have chronic shortness of breath at all times, had a sleep study done and it showed nada. No sleep apnea and I don't seem to have breathing issues while I sleep. I did notice I get almost no REM sleep so I assume that is why I wake up tired.
  7. I think you are on the right track with keeping a record on her vitals. I did a poor man's tilt table at home everyday for a month, brought the data to my second cardiologist who agreed that is weird. Put me on a tilt table and now I have a POTS diagnosis. That was back in Janurary. I have been working since to find the cause, but it is slow going. My symptoms started with a breathing issue almost 2 years ago. I have had it all day every day since then. I am beyond frustrated with the breathing issue. Especially since no medication seems to relieve it. It took over a year for me to find a few doctors that didn't write me off as "crazy". Now I am working on my 14 y.o. son. When I first got sick I thought it was viral or enviromental because my son seemed to have similar but not exact symptoms. When I did my first poor man's I thought my machine was broke so I tried it on him. His heart rate freaked out. So after I tried it out on my husband and it was normal, I am assuming he has something similar. His biggest problem is chronic headaches. He has had them since November 2015. Almost daily. They change In area and intensity but he gets them at least 5 days a week. I brought him to his first cardiologist appointment over a month ago, she said he needs to drink 6-8 BOTTLES of water a day, and the diagnosis didn't matter. I walked out of there steamed. I have a clinic about an hour from where I live that specializes in children, that another member on here tried out for her daughter, that I want to take him to as soon as I get my vehicle fixed. Have faith, don't give up, and I am sure you will find answers. Good Luck!
  8. Is he taking the salt tablets with food? I remember seeing something about upsetting your stomach with those so I have never tried. Food and/or maybe kefir are about the only things I can suggest.
  9. Good luck finding your answers. I hope you find them soon. I know how frustrating I can be thinking you are crazy when your body feels like it is malfunctioning.
  10. Try to do the full thing with the blood pressure cuff and watch your blood pressure. A slight change is normal like what you had but I wonder if it changes more. Heart rate will sometimes increase just due to blood pressure changes. Either way your first test said yes get a tilt table done to check.
  11. No it should be sustained. It may be delayed. Sometimes your heart rate may not rise immediately. I would suggest laying down, stand up as smoothly as possible so you don't move much, then check it right away, then 5 minutes, then 10 minutes. I would recommend using a blood pressure machine because it "snap shots" your heart rate. I have a garmin and it has a slight delay if I watch it. So I imagine watching a heart rate monitor would bounce while it configures your heart rate. Be careful if you stand straight up, not everyone can do it and if you can't handle it don't force it and hurt yourself.
  12. I am one of the ones who I feel better in the morning and worse throughout the day assuming I slept ok the night before. I don't always jump the 30 points when standing, but when I average it over time there is a large consistent jump. My husband's heart rate stays pretty steady when he stands up, I think it goes up 5 or 10 points but levels quickly and steadies. When I did a poor man's the first time I thought my machine was broken, but tested my husband and it was normal. It kind of seems like the heart rate jump is hard to catch for most doctors. A lot of people talk about they had to be tested multiple times on a tilt table for it to show.
  13. @Finnmin So I asked my boss who deals with blood pressure through his work. He said not to support yourself when standing, because you want as little "kinks" in your body as possible. I asked him why do we do it while sitting. He said because it is easier to check and you want to be as still as possible. I forgot to ask you whether you are using an automatic or manual cuff. My boss like the automatics but he said to be the most accurate a manual is better. Also arm fat can get in the way of an automatic to get the data accurately to give the blood pressure. He also said the left arm is outgoing pressure from your heart and right is ingoing pressure to you heart. So arms make a difference. Figured I would pass along the information I got. Thought it was interesting.
  14. I would say it is possible. I would talk to your doctor and see if they will put you on a tilt table. I think I have seen people have chronic fatigue and POTS diagnosed together as well. I hope you find answers soon. I know how crazy POTS can make you feel.
  15. In theory it is possible but I think there would be an obvious cause. Definitely make the doctors check everything. That being said I think I read somewher that the older you get the harder it is for your body to push your blood around so I would think orthostatic hypotension would be more common then POTS.