kalamazoo

And seattle rain, that's bogus about the fainting part because Ive never fainted but I definitely have pots. I cannot stand when doctors do that. try going to the university of Washington. We should all start a support group and we can lay down during it

I see a lot of people in this post are from Seattle. How weird, ill be moving there In six months to see doctors at the university of washingtons dysautonomic testing center. They do the qsart test and help refer you to other specialist. its why I'm moving to seattle.

I'm getting sick, sore throat and stuffy nose. I'm curious how you all deal with sickness. As far as if you can take any medications or symptoms changing? When I'm sick my heart rate elevates by like 20 bpm, its not fun and I usually only have a fever at night. I hope these sickness is just a cold or something mild as I really get run down with sickness or any sort.

I'm fairly positive I am hyper pots as well, so I sure hope this works. Im glad it worked so well for you!

Thank you for all of the information everyone! I think a huge thing that matters is the type of pots relating to blood pressure when taking a beta blocker. It's sort of good that my blood oressuee goes high so its safer for me to take a beta blocker without worrying about whether my blood pressure will go to low and Ill pass out. I see this with some of these side effects. I plan on starting it today or tomorrow, crossing my fingers that it helps!

Not sure If i spelled that right. This is my new medication that ill be starting on Sunday, im sure people here have taken it. So any advice or suggestions would be appreciated. What to expect, if it works etc. please and thank you!

I have shortness of breath and possible asthma. But I haven't been filly tested. I hear propranolol is good but am worried about this issue. I'll have to bring up this to my doc tomorrow. Thank you!

I'm almost fully vegan these days and have never felt better as far as diet related symptoms. If I do ever eat eggs or dairy which is rare I want to vomit and my heart rate goes up, I think diet Is a lot more important than people expect.

I get both and they honestly have begun to feel the same. I feel I am a hyper pots patient. Basically if I suddenly get nervous I flush, shake and my heart rate pounds of out of my head. It throbs so bad and goes up to 150 minimum easy. It's hard to breath. I used to get them randomly and realized it was from severe low blood sugar and rebound hypoglycemia. Now I watch what I eat and eat like a diabetic. But I also have adrenaline surges but those only occur when im nervous now.

Peregrine*

Peering which beta blocker do you take

I doo experience numb tingly toes and hands and face. It varies and I often get this when I'm exhausted or hot.

?

I haven't been diagnosed with leaky vins but I do have vein issues that no doctor has followed up on. Basically they swell up immensely when I'm hot or tired from walking and it started when I got pots so I drink there's a correlation. I also g it in my knees and severely in my hands. I also wake up with swollen hands. It's very uncomfortable. But no doctor seemed concerned which is weird. Keep us updated on your vein issues, so you maybe have pictures ?

What are the test for these and does anyone have any kind of list and explanation of the physiological differences between all of them. I want to be tested but I have no idea for what now that I have pots for sure.

Can anyone explain to me how this works? I've read up online but have only found vague information. I'm using many of you have had this test so any information would be appreciated, I hope to get one later this year.

One of my ovaries is full of cyst so I think this aggregates my pain. But I'm comforted knowing I'm not the inky one who experiences this. As it's so bad that I usually stay home from anything that day. But as far as birth control I was told I could never take birth control as it changes your blood volume and increases the risk for clots. I have vein swelling and pooling in my limbs so doctors demanded I never take birth control. I don't know how to deal with this then. Maybe a normal pots patient, if such a thing exists, would be able to take birth control. or maybe up the beta blocker Meds around this time of the months. Its hard to say especially since no doctor seemed concerned about it. So frustrating.

It's comforting to know I'm not alone. This is so frustrating, especially because I dont think many doctors try to find the root of the problem. Such as whatever causes thee symptoms. I think that's the ones thing I especially hate about pots is that there seems to be very few doctors interested in the underlying causes. I know pots isn't an actual disease but is symptoms of dysautonomia. What I worry about is that what if dysautonomia is a symptom of another underlying disease. This is the thing that has puzzled me.

You sound just like me. I actually have medication phobia. I panic as soon as any medication hits my tongue. I think its because I've had so many bad reactions that I expect another. I did what tou suggested with taking tin amounts and then building up. But basically the tiny amount does nothing, i would take half the suggested dose at first. And wish this is what I did. I'm not a doctor but I know mediation are scary and sometimes its best to let our bodies just get used to it. I only took it a few times, mostly because it wasn't strong enough to help me. Now I'm seeing a different doctor and will be prescribed a new beta blocked on Monday. I'll probably take a nibble of the pill because I always do that, and then half and then full within a couple of days. Also, you could ask your doctor to take your first dose at the office just in case. That's what I do

Does anyone else feel substantially worse during their period? The day before and for the first few days my heart rate is so elevated that I practically can't do anything and if I do I get so winded and it starts to hurt. I've always had bothersome periods but now theyre just getting ridiculous regarding my heart. It just pounds so hard and loud. I mean, It always does that but quite noticeably more during the first few days. The doctors seem to just think I'm anemic, which I'm not. So I think its pots related.

I still have a hard time accepting that this is what I have, I always think its something worse and something even more major. Granted I do have other symptoms such as vein swelling and pooling which my doctor isn't knowledgeable enough to know if it correlates to my pots. So whenever I get hot my veins swell out of my skin and throb so bad that I have to elevate them. It was suspected erythromelalgia but I can't find a good doctor here in alaska to diagnose me. So I'm stuck constant worrying about what is actually wrong or if it just Is pots. Does any one else feel like this? Also thank you all so much for being such a great community to lean on, everyone here is so understanding and its such a relief since no one in my life will ever truly understand how hard getting through the day is.

And Pam I was considering going to the mayo clinic as sort if my lest resort since it Is so far and the heat makes my body go into full panic mode as i lived there when I started getting really sick about 7 years ago. Hopefully I can find what I'm looking for In seattle. Thank you for the information though and my best wishes to you daughter

Thank you so much for that information on the university of Washington! I've been having a little bit of trouble finding any good doctors but granted I am still in alaska. I'll be in Seattle around august and plan on seeing doctors then. My doctor here did a bunch of test and followed the book but didn't know too much about pots. I want to know more as far as subtypes so I'm so thrilled they have an autonomy testing center because I'm fairly positive that's what I need. I'll probably send you a pm asking for a little more information.

The Seattle area.

I too have high bp especially during episodes. A low salt diet usually helps.