• Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

1 Follower

About StayAtHomeMom

  • Rank
    Advanced Member
  1. Nicotine and BP

    I wouldn't recommend starting to smoke, but when i feel crappy when i smoke i feel better. I loved how the first cardiologist try to say my breathing issues were from my smoking and anxiety. I tried to explain my smoking helps and he wrote me off as a nut. Nicotine seems to be hit or miss for people though.
  2. Weird Breathing Symptom

    My breathing issue started over 2 years ago and was the start of my POTS journey. It feels like having a corset on and it is too tight. I feel like i have to take a deep breath every 2 or 3 minutes. Half the time i can't get my lungs to fully expand. Sometimes it feels like something is on my chest. Sometimes it feels like i am really pregnant and the baby is pushing on my lungs. And it varies in intensity everyday. Heart rate does not effect it but position can help get my satisfying breath easier. In the beginning i would fight it and end up in the ER from hyperventilating. Pulmonologist ruled out everything. Then i stumbled across POTS. I was diagnosed last January. I started seeing a POTS specialist in September. He believes it is because of my POTS not sending the signals right. We are investigating underlying causes now. Sometimes it can be frustrating not having the answer. But having doctors that believe me and slowly working toward an answer helps.
  3. Showering and pots

    I try to keep my water as cool as i can. I make sure i wear my garmin so i can watch my heart rate if i feel cruddy. And try to have my hubby shower with me whenever i can.
  4. Hyper POTS and flying?

    I have regular POTS as far as i know. I flew for Christmas for a 2 hour trip. I was ok while in the air and flat. Going up or down with the plane tilted freaked out my vertigo. I took dramamine on the return flight and kept my eyes closed during ascent and descent. I had no lasting effects. I was also on one of the smaller planes. (Held about 150-200 people) i would talk to your main POTS doc if you are worried.
  5. Pots vs HyperPots

    Irunwithscissors: i have noticed mood swings worsening the closer i get to my cycle. I usually try to avoid as many people as i can during the week it is worse. Finding answers is what i think everyone is searching for. It also helps when you find someone else suffering through the same or similar things. I personally feel less crazy.
  6. Effects of propranolol and possible POTS

    I just wanted to add my two cents in really quick. I did the propranlol at first. My POTS symptoms initially started with dizziness, nausea, lightheadedness, loss of appetite and breathing difficulties. The last being the worst. The propranlol helped a little but not enough and it was making my breathing worse. So my cardiologist started me on a calcium channel blocker which helped some things but not all. Now I am taking metoprolol. This has been my life saver. Had to up the dosage a little but I function ok now. When my breathing gets bad I eat french fries dipped in salt and I feel a little better. I have more symptoms then I did when my POTS started but I can get out of bed and push most days so I figure things are looking up. I hope things get better for you.
  7. Still No Set Diagnosis

    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?
  8. Update on my journey

    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.
  9. Update on my journey

    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.
  10. Wondering whether I might have POTS

    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.
  11. Dyspnea on Exertion (trouble breathing)

    @Don have you ever had an echo done on your heart?
  12. Dyspnea on Exertion (trouble breathing)

    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.
  13. Need Help with Obtaining Diagnosis

    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!
  14. Sodium and acid reflux

    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.
  15. Wondering whether I might have POTS

    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.