StayAtHomeMom

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.

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.

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.

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?

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.

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.

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.

@Don have you ever had an echo done on your heart?

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.

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!

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.

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.

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.

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.

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.

@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.

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.

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.

@FinnminDoes he have low vitamin d? If so that may be part of it but I think you are right about sunny days just making you feel happier.

Hmmm... that is interesting. I wonder if my body would have a hard time in the cold then. Like I said this winter was mild here. I think it barely got to freezing and we had a dusting of snow once. I hope you can figure out something, it sounds like you enjoy being outside. Have you looked into cooling vests?

It sounds like you live in heaven (or we are using different temperature scales mine is Fahrenheit) My mom recently moved to colder weather and I am a teeny bit jealous. She is able to enjoy outdoors more. When I talk about being outside I am not doing anything, usually reading a book. Just so I can be outside and stop staring at the same 4 walls.

Ok, so I experimented. I did it sitting so I am not sure if it would be a huge difference. I did notice having my arm unsupported was more painful so maybe that could account for my slight change. Supported: 111/71 89 unsupported: 112/74 89. Ok now standing supported: 104/76 104 unsupported: 106/77 109. Again unsupported was more painful. I know pain can raise blood pressure so maybe that is why it is reccomended? I am also on the calcium channel blocker so that may be why mine didn't change much.

It depends on the temp, below 75 in the shade I am ok for at least 45 minutes. Direct sun or above 75 is about 15 minutes before I start noticing my symptoms getting worse. We had a mild winter here which sucked but it started hitting 70 outside by April. I think it is gonna be a really hot summer. I am stoked my AC got fixed. I can enjoy home life a little more and try to do more, like cook an actual meal instead of microwaving it. I noticed now that I can get away from the heat I can manage more time in the heat. Before the AC got fixed it was more like 5-15 once the temp got above 70. Even in my house.

All I know is my 24-hr holter monitor showed no arrythmias, and my EKG and echo were normal. I was concerned because my dad has a-fib but my cardiologist said it looked fine. Wouldn't they have ruled out SVT or IST before he gave me my POTS diagnosis?

In the begining of my POTS I went to the ER a few times sure I was having a heart attack. The 1st and 3rd time they gave me a small script for xanax. It helped my panic at the unkown I was having when my body was reacting oddly. It didn't help my main symptoms but if I was having a day I thought I may end up at the ER I could take 1 and not end up there. It was like the stress of not going on was making things worse. The scripts only had 8 xanax which isn't much but it helped for the year and a half before I got my POTS diagnosis. Knowing what is going on helps tremendously and it has been about 9 months since I had to go to the ER. Personally, information was the key for me. Now it is slowly trying to find an underlying cause and medications to help me get my life back. I think the best thing to do while you wait is increase your water, it never hurts, and document your symptoms and see if you can find triggers and avoid them. It takes a while but you can do it. Don't worry about things you can't change, only what you can change and arm yourself with knowledge. I am sure the doctors will find the answer it just may take a while. Have faith that you can do it. Actually there is a wonderful post on here from a week or so ago called "Victory!" When I read that it gave me such hope for the future. Good luck, and keep your chin up.