StayAtHomeMom

I take a beta blocker and it lowers my HR by about 10-20 points depending on position. I think the lowest I have ever seen it is 70 while I sleep but that is rare. Without it I average high 90s sitting. My Beta Blocker really helps my heart palpitations more than anything. Without it my heart rhythm feels weird. To a lesser extent it helps everything else. Not sure if I could function as well as I do without it. Maybe I am lucky and I respond to that one medication the way I am supposed to.

I would let you doctor know what you said about the IV. If your resting HR was unusually high that could skew the results of your test. See if next time you can do it without the IV. Neither one I had inserted an IV.

Are either of those doctors dysautonomia specialists? I would have a specialist look at it. My HR is sustained but I am not sure if it is every time. My initial TTT showed my HR above 130 for the full 45 minutes. If it isn't POTS there are other types of dysautonomias as well. Hope you find answers soon. I know how frustrating it can be to not know.

Ditto to what pistol said. chiropractors can be great if you find the right one.

Lightheaded is what I use to describe an odd brain sensation that is usually accompanied by my vision going dark. Dizzy is where the world or I spin. And the world "tilts" when I feel like I am not standing straight when I am. Do these sound familiar?

Could it be a version of heart palpitations? Maybe bring it up to your cardiologist. If I remember right heart palpitations can be anytime you feel your heart beat. Maybe that means in other places as well? Total guessing here.

As far as I know that is the only way to diagnosis EDS or Marfan's. Unless your EDS is the non-hypermobile type. In which case those are different tests but widely different symptoms.

Sounds like you are on your way to answers congrats.

I wish I had setting where my garmin would tell me it is high. Sometimes I don't pay close attention and I pay for it.

I am not sure if what you have could be POTS but dysautonomia in general is possible. There are many types. With your eye symptoms have you tried seeing an ophthalmologist? My sister in law got her MS diagnosis started through an eye doctor. You would be surprised what they see in your eyes. What you are going through sounds rough, I hope you feel better soon.

I personally don't do any exercise. I had issues before my POTS onset with exercise intolerance so I don't bother. That being said, I work part time and have am upright most of the day. And honestly sweeping my back patio is enough exercise for me. I do physical therapy at my chiropractor that might count. I have a Garmin HR that is use daily to help monitor whether I am over doing it. Usually my symptoms will warn me, but periodically throughout the day I check my HR to make sure I am not over doing it. If I keep my HR under 140 I don't usually feel it the next day.

What about other beta blockers? I know propranolol is the go to, but metoperlol works better for me.

I start with 120/80 BP. I take a beta blocker for the tachycardia and it drops my BP to 110/70. When I take my midodrine it raises it back up to 120/80. I still get break through tachycardia but it is something I can live with as I was never an athlete, so I do physical activity slow and I feel fine most days.

POTS seems to be a life-long condition (unless you get it as a young kid). Depending on your underlying cause, you can make the symptoms go away. In my experience doctors seem to treat the symptoms and send you on your way. There is a lot of trial and error to try and manage your symptoms. But it is possible to live a "normal" life. It may not be exactly the same from before you got sick, but it will be loads better from the point you got sick. I am still searching for my underlying cause in the hope I can "magically disappear" my POTS. I hate the idea of being on meds the rest of my life. I am only 32. But I like being able to enjoy my teenage boys' life. So I take my meds

I would talk to a GI. Because I get stomach symptoms they tried to diagnosis me with GERD. I made them do a scope and it came back normal (except a stricture in my esophagus). There is also the gastric emptying test (where you eat a glowing egg).

It sounds like a TTT would be beneficial. It is kind of a weird contraption, but you would be upright without having the balance issues. And a doctor could look at your data and see yes or no. I am not sure what compression stocking do for a normal person.

Diabetes is well known for damage to kidneys. There are things that can be done to save your kidneys I am sure. And if it is your underlying cause then fixing them may alleviate some of your other issues. Good luck at your next doc appt.

BP issues can cause your HR to change to help compensate. When you stand up do you stand completely still? Just shifting your weight can help push your blood up and lower HR. A lot of us fidget as a natural response to help lower our HR. How fast does it come back down and to what number?

Have you talked to your doctor about it yet?

My hubby has been collecting old Cajun recipes and cookbooks. He wants to start a food truck. Me personally, food is what you eat to survive. I prefer good fiction books, and video games personally. But whatever strikes your fancy and makes you happy is the most important thing. This illness can be difficult and we must enjoy what we can

I remember mine doing that once while in the ER. It was a long time ago. I remember thinking it was weird because I am usually high 90s. My got to low 80s. I was also drifting to sleep because of the late hour and honestly they use the sensors that are tape and I think my finger just gets sweaty. The ER staff didn't seem concerned. All my pulmonary tests have come out normal and the quick checking at the doctors offices also show normal so if I were you I wouldn't worry too much. I would mention to your regular doctor if it bothers you though.

There are medications to try that can help but I feel like without the underlying cause I am fighting an uphill battle. My specialist recommended water, salt (I always already doing because I craved it), beta blocker from my cardiologist (which did wonders for my tachycardia and heart palpitations), and my specialist added midodrine. I am pretty stable at this point. I have my good and bad days. My good days outweigh the bad now though. It has been 3 years and counting. I hope you feel better soon

That sounds amazing. I have never been much for baking, but I may try to dig out my wax warmer and try to get my house to smell like you described. That sounds very spiritually uplifting. And today is a cold rainy day

Accepting is hard. I can accept my new life most days. There are days where I still fight, but it is just pure stubbornness on my part. Life is easier when you accept your new norm. Your body and mind feel better

Having no gallbladder can cause it's own set of issues. I have know 4 people without their gallbladder. 2 eat just fine, the other 2 still have some issues depending what they eat. But it is relatively painless issues. Good luck on your surgery !! And I agree chili cheese fries sound good (can't have it now because I am doing the Keto Diet).