yogini

Yes, often I notice I am more emotional, short tempered or weepy. Part of it is bc my worst flares are around PMS. But also I think my body is more run down, which makes me more vulnerable. There was one time a few weeks ago when I put on compression hose and my mood changed right away. So I am sure that it is totally physical and not emotional.

Katy, that is such a great description. I too going from not being able to get out of bed in the moening to suddenly feeling like superwoman later in the day. Someday they will figure out what switch goes off in our bodies to cause such a crazy change in things.

It could be anything like fluid intake, how much rest you had the night before, what you ate, the weather, etc. I gave up trying to figure it out. Up and down symptoms are not unusual, though!

i dont' think meds interfere with the body's ability to heal at all. i don't agree that meds help "reset the system", but I think they help you get back on your feet faster. you can be closer to living a longer life (and being active just helps POTS). the body may heal itself ovber time. you can then try to wean off meds gradually. it has worked for me,

I think there are a few important things you can do to be successful with drs. The first is to reasearch you dr and try to go to one familiar with POTS. Also, be able to explain your symptoms/history clearly. Maybe write it out for yourself so you know what to say. And believe in yourself. Know that you know more than most drs about this. So if a dr tells you it's anxiety, THEY are wrong, not you. I also I think it helps to bring a friend or family member along - drs are more reluctant to be nasty in front of other people. If that friend is in the medical profession, that is even better. Even after doing all of these things, know that successful drs appointments are few and far between. Our system is set up to whiz people in and out of drs offices as fast as possible. Drs don't focus on particular patients and don't know enough about POTS, . Our lack of care is not bc of anything that we patients are doing wrong.

I have a friend who is a cardioloigist who told me that unless someone is in danger of dying, dr's don't worry too much about their patients. But to actually say that to a patient in a wheelchair no less, shows incredible insensitivity. I wonder a dr would say to someone who is blind or deaf that their condition is innocuous because it isn't deadly...or a sinus infection, not deadly, but still needs to be treated, right? I've run into many of these types of drs and is not worth wasting your energytrying to convince them otherwise. It might be worth waiting to find someone else more caring.

There is definitely something to biofeedback. I have tried it. I think it can help, it is a tool to improve overall health and manage/reduce symptoms, but it is not a cure. To me it is not even as effective as compression stockings, because you don't have to think about the stockings once you put them on. If you were feeling better on a medicine, makes sense to get back on it.

To me, a standing HR from 90-100 is "normal" - I don't think it's considered tachycardia. Is that high for you?

I agree with Alex about midodrine. You are probably orthostatic - meaning that your BP drops when you are upright. When you lie down, it comes back to normal, but midodrine is boosting it beyond normal. Though I would check with your doc. In my nonmedical opinion. a BP of 140/80 isn't that much higher than 124/76 and shouldn't make that much of a difference in how you feel.

I always imagined that one of us (or our children) would go to medical school and solve the mystery of POTS. Somone with personal experience would understand and be motivated enough to do it. Best of luck!

Could be that the virus triggered something underlying. The underlying thing could have been caused by the environment. Even if it is much more common than doctors know, POTS is pretty rare. It seems like too much of a coincidence that 2 non-blood relatives would get it. But you never know. After going thru this, I would believe anything either way!

The symptoms you describe are not uncommon for POTS

If you haven't gotten up for a few months, you are likely deconditioned. It ishard to tell what part of the issue is cause by POTS and what part of is due to deconiditioning. I would talk to a dr because your situation sounds unique. Maybe you can star t by propping yourself up in bed with pillows so you are a least more upright and building from there....ideally gradually moving on to standing, then walking. Maybe you can figure out some treatments (like medications or compression) for extra support. Ask if there is any danger/risk in walking - if you arent a fainter, most likely there isnt. If your dr OKs, you may have to push through your discomfort/fears.. The longer you stay in bed, the harder it will become. Many of us have done this, you can too!

Maybe an environmental factor - like something in your house or water? It would be weird if you both have it.

Funny, I can't do the elliptical, only the recumbent bike. we are all so different, I have a feeling I can play (gentle) tennis because it is easier than the elliptical. I am not thinking anything strenuous, just hitting some balls back and forth.

Many people here have a drink or two from time to time. If you can tolerate it, go for it!

I actually think this is on topic. I thought you were going to say you played video ping pong, but fabulous that you played the real thing! Funny, because all of a sudden I have had this strange craving to take tennis lessons. You have inspired me to give it a try. Congrats on your progress!

Sounds like a dream appointment and a fabulous doctor. Good for you!

It feels fabulous for the moment, but don't think it contributed to my improvement...

No interaction between Paxil and atenolol for me

I would still see a sleep dr. Sometimes hn I wake up in the middle of the night and can't fall asleep, I take 1/4 ambien, and that is enough to sleep til am. There are other things you can do in your sleep routine to help which ur dr will know about.

What is your HR number? It took me a week to get adjusted to BB. I could not tolerate metoprolol, but atenolol worked well for me, or maybe your dose is too high. I wore compression hose to keep up my BP.

Not all test centers do this, but many do give medicine if you don't have the increase on your own on the TTT. The place where I had the TTT set me up to give me meds, but luckily my HR went up on its own. I have never heard of meds being given when the HR went up on its own. That sounds like it would be dangerous. The technician you spoke with might not know the specifics -- can you talk to the dr and find out if it would be necessary to give meds if your HR goes up on its own? If you aren't comfortable, which is understandable, ask if you can get the test without the medicine. POTS is unpredictable, so even if you get a 50 bpm increase at home, there is no telling what your body will do on the test.

Can you get someone to go with you? That always makes me feel better. The other thing is that you'll be in a hospital - the right place if something goes wrong! I used to have the same types of fears when I first got POTS - and rightfully so. But eventually I realized that even though my symptoms increased, I survived. I am sure you will come through with flying colors, and if you keep going, it will get easier over time.

If it is helping, and you feel comfortable, then keep going. Doesn't matter what anyone else thinks. I hope it really helps you!