Birdlady

I'm 20 years into POTS, so there is no mojo left. 😂

LAVi is short for Left Atrium Volume Index. I've never had a stress test or anything like that, so not sure what happens when my body is under stress or strain. My ejection fraction is 55%. I guess I won't worry about it unless some new symptoms come on.

Thanks for responding! Maybe POTS has nothing to do with it. Everything else was normal. Only trace regurg on tricuspid valve which isn't a problem. I did a bit more digging and the dimensions of my Left Atrial are normal, but the Left Atrium Volume Index (LAVi) was high at 48 ml/m2. Apparently this is something they calculate now and it isn't listed on any of the echos I've had in the past. Perhaps it's always been high but I didn't know. I'm 37. My BP is low or normal most of the time. I've been med free the past year or so. My EP is completely against using meds in POTS. I know that's out of the ordinary, so I have high heart rates all the time now. I have osteoporosis, pre-diabetes and am a normal weight, but I am not fit by any means. lol LAVI has poor prognosis if you have a cardiovascular event, so I guess I have to keep myself as healthy as possible to not have one of those. Afib runs in my family, so that is another thing to keep an eye out for too.

I have terrible body temperature regulation. I think heat intolerance is one of my worst symptoms because I can feel blazing hot even if it's a comfortable temperature. There are times where I feel cold when I shouldn't too. Both have been worse this year for some unknown reason. I bought a new thermometer because of the pandemic and I found out that I'm running in the high 99's-low 100's more often than I ever realized. It is worse in humid conditions even if its only in the 70's. Whenever my body temp gets in the 100's I will get goosebumps and begin to feel like I'm having heat exhaustion. I can go from feeling cold to hot to cold. In the winter time, my feet and legs get so cold and dead feeling. I get terrible chilblains on them every year to the point that my toenails stop growing and die off. Interestingly when I get sick, I rarely ever mount a fever. The last time I had a fever due to sickness was 2009 with H1N1. I had strep in 2012 and never had a fever which is why I let it go untreated. ugh My body doesn't know what to do it seems. haha

I had an echo done recently and my doctor said everything was good. But I looked at the report and it said I have moderately dilated LA. I don't remember seeing that before. My last echo was about 9 years ago. I was curious if anyone else here has ever seen this with POTS. Thanks!

Yes I wonder if that's my issue too. When I'm feeling stressed, mine are also higher.

Oh no that is not good. I always took my beta blocker in the morning. Perhaps the intrinsic sympathomimetic activity won't work well for you. If not, at least you know and can cross that off the list.

That is good to know you aren't on a beta blocker. I don't think I have stomach emptying issues, but I could see that being an issue for some. I came off of my beta blocker to see if it helped. I do believe it helped slightly. Interestingly my A1C was good at the last test, but of course that was a year after I made a ton of changes. Insulin levels were not tested. I bought chex mix as a salty treat and now I won't be able to eat it anymore. Back to salads and pickles/olives for salt. Yeah I have completely cut out carb heavy meals. The spikes were just too high and those meals have always made me feel so sick (IST). I have not tested my urine, so that would be interesting to see. Obviously something is not right, but most doctors wouldn't consider this a problem. I searched the forum last year for high blood sugar/fasting and nothing really came up, so I am glad you posted this video. As you said it doesn't fit Type 1 or Type 2. I also found out I have osteoporosis in my 30's, so I'm waiting for research to show POTS causes that too.

Nebivolol did not stop the shakiness and jittery feelings I get, so that one was not good for me personally. That one only blocks Beta 1. My heart rate would be 90, but I was super shaky and anxiety ridden. In the end it did not increase my postural time. Metoprolol and propranolol both just made me super tired and lowered my blood pressure. I felt like I was pushing against a wall on those two. Acebutolol stopped the jitters, lowered my heart rate and didn't make me quite as tired as the other two. It did help to increase my postural time. Sadly though I really think beta blockers in general were making my blood sugars worse, so I probably won't go back on them for a while unless an echo shows an enlarged heart or something like that. I got to figure out what is going on with my blood sugars.

Oh my goodness. Thank you for posting this! I am having a terrible time with my glucose levels. Last year I bought a glucose meter and my fasting were in the 110's. I could not believe it. My entire life I had always been in the 70-80's fasting. I brought all of this to my doctors including a 200 reading after having potatoes. They both blew it off when I told them I was getting increasingly worried about it. They told me I'm too thin for that problem..../sigh! I've completely changed my diet the past year, but still having a terrible time. Edit: My fasting is down to 95-100, but I saw a 150 two days ago after eating a small salty snack. I thought the glucose issues were tied to my beta blocker as they can cause glucose issues too, but if it's just POTS, I would not be surprised at all.

If you are doing well, then it may not be worth trialing a new med. It's possible that the acebutolol would act less on the lungs, but that is definitely a question for your doctor. Acebutolol kept my heart rates down and calmed my nerves, but it is no miracle drug by any means. I had tried metoprolol, propranolol, nebivolol and acebutolol. Acebutolol was the best one I found for myself. If I do go back on a beta blocker it will be that one.

I was on acebutolol for many years. It was one of the better beta blockers I had been on. It is a slightly different beta blocker than the others. It has intrinsic sympathomimetic activity. https://en.wikipedia.org/wiki/Beta_blocker#Intrinsic_sympathomimetic_activity I stopped taking it after my blood sugars started to raise and I was worried it was playing a role in it.

It could have been the vaccine, but would be hard to know for sure. Definitely report it, so they are aware of it. I had alopecia areata many years ago. For me the trigger was taking iodine. My body was very sick back then. It was before I knew I had POTS (2007), so I was doing a bunch of treatments to try to fix myself. It was probably the sickest time of my life. I hope that your spot stays small. If your dermatologist offered any treatment, I would consider it. My spot ended up taking half of the hair on my head. I couldn't wear a pony tail and had to flip my hair the other way to hide it. Thank goodness it all eventually grew back in my natural color over a course of a year. I've only had very small patches here or there near my neck over the years.

I got my 2nd shot yesterday and I'm not having any symptoms from it aside from a sore arm (same with my 1st shot). I know everyone is different though, so not saying your experience will be the same as mine. I am honestly surprised. I prepared for the worst. I had extra groceries on hand in case I was too sick to get to the store this week or next. I guess we'll see if anything changes tonight or tomorrow. Edit: Still no issues the next morning. I haven't even had my normal fatigue.

I've had signs since I was a very young girl, but it only affected me in certain environments or situations. At age 16 (I'm 30 now) is when it became significantly harder to live life, but I still managed to go to college and work for a few years. Then at age 21 is when I just could not keep going. I had to lay down at work which was not allowed and rumors started to spread. I just felt so miserable and started calling off or had my husband take me.. I totally stopped working at the end of the holiday season in 2005 and have not been able to work ever since. It's been really bad for about 9 years , but it's gotten worse after I got strep 2 years ago.

One of my eye doc says I have something called convergence excess. I get a lot of headaches and eyestrain from it. I used to be an excellent reader, but now I lose my place all the time and get extremely tired.

I have experienced what you are describing and for me it's been a pulled muscle in my chest wall. I seem to have a very weak chest wall and chest muscles. I pull them doing activities that seem unlikely to cause it and the pain can last a few weeks until it's healed. In fact I've been to the ER 2 times because of this!!

I went in 2010 and was not impressed with how things were handled there. I told them I would never come back.

I really don't know. I'm not the same person anymore and would probably ask God to use me in ministry.

I also very much dislike my masticating juicer and would not recommend getting one. It works great... But they are a mess to clean up and you are left with a huge amount of pulp. Even if you add some of it back in to your drink, it's not blended at all and difficult to get down. Just the other day I was telling my husband, I wish we would have bought a blendtec years ago instead of the juicer we have. I too got reeled in with the claims that the slower juicers were better. Well if I don't use it, then I'm getting no nutrients. Cleaning out a single blender container is much easier than having to thoroughly clean out the entire plastic housing of the juicer, the auger and juice and pulp containers.

I am the same way Sue. I've made posts about my heat intolerance as well because it's very debilitating. Last summer, my husband and I went to visit a friend a few states over.... It was tough, but we made the drive. It ended up being some of the hottest days of the year there and simply walking from the car to the hotel or from the hotel to the car, I immediately started going into shock. I think it was 95 and as soon as I stepped out, it was all over. My husband had to hold me up as he got me to the car and we blasted the AC on. I get into big big trouble if I'm in the heat..It's so bad that I can't even speak for myself or even tell ppl what's wrong. A car even when it's 80, will get hot inside very very quickly.

Yes I have major problems on the phone, but for me I don't think it's social anxiety because I've always been a very outgoing person. In fact before I got really sick I worked for a cell phone company and was on the phone all the time and was in competitive sales with a quota. Nowadays I get the shakes, headache and feel awful too. I will be keyed up for a while and then eventually I will crash very hard.

Yes I started getting them a few years ago too. It is worse when I'm on beta blockers. I wear socks and slippers at all times while awake and they have finally healed. If you have an outbreak of them right now, then it will actually hurt at first doing this because of the extra warmth. However once it starts to heal, the socks and slippers will feel good. The foot that gets them still looks more red than the other, but it's no longer swollen or painful. I also have to watch how warm I make my bath water too. If I stick a freezing cold foot into warm bath water that still causes problems with chillbains too. I used to warm my cold feet next to a heater and that's what made me get them.

Every dentist I've been to, including oral surgeons, they only had it with epinephrine. I would definitely call ahead of time to make sure you even have the option. I don't have reactions to the injections though.

Karebear, I had a similar experience. I got sick while in high school, so even back then my friends began pulling away from me because I had to quit marching band and symphonic band. Most of my friends were from those activities. After high school, they wanted nothing to do with me because they went off to college and made new friends. Nowadays I find it hard to make news friends because of POTS. You can't partake in their activities or do the things they like to do (go shopping or whatnot), so any time I've made friends, I've lost touch with them quickly or it's always friends that just keep you are arms length. I'm also 29 and most ppl my age have kids. Since I don't and have no plans to, it's really hard to relate....I've never been much a kid person any way. lol Thankfully my family has been pretty good, but they are limited with what they can do. My dad and I probably understand each other the best. He has COPD and we have such similar symptoms but they are caused by different things. My sister had brain cancer two times, so she gets it too. My mom is wonderful even though she doesn't have health problems. My brother is supportive as well. My best friend is my husband. We have been through so much together.