yogini

You can feel sick and experience POTS symptoms even if your BP and HR are under control. This isthe hardest thing that drs don't understand. I remember after I got diagnosed and was stable, but felt dizzy/tired. My doc started saying that's not POTS, that's something else and sent me on a wild goose chase. Of course it all turned out to be the "big P" in the end. Yes, stress can make things worse, but POTS is POTS. Sorry you don't have a better specialist in your area.

Our bodies don't push water into the bloodstream in the same way that saline does. That's why it is so effective. It works regardless of whether we are hypovolemic, as an instant boost to BP. Too bad it doesn't last longer! I have had saline exactly once - right after my TTT - and I went from feeling like death to perfectly fine. I have tried to get saline during other flares, but never found a doc willing or able to give it to me. Usually in the US, you have t o go to the hospital for treatments, which makes it expensive. I think ports are reserved for severe cases/PAF, due to the risk of sepsis/infection - which has happened to several people on the forum.

In most cases it may not be dangerous, but everyone is different. This could be a side effect of meds too. Definitely talk to your dr

I have cold hands and feet. It is embarrassing when I go to shake someone's hand - I always gets comments. Heating pads are my best friends!

You may be retaining more water if you weigh more. The general thought for POTS is that bing very overweight or underweight is to good, but a few pounds does not affect most people.

Jangle, check out the dinet physician directory. While there are a handful of experts, there are lots of other docs with experience. If all your doc knew was Florinef clearly he was the wrong doc. Good riddance!

Lemons is right. I'd measure your HR and BP sitting and standing and when you are having symptoms. A consistent change drop in BP or increase in HR would indicate dysautonomia. Good luck in getting a diagnosis!

I did not know you had an exercise blog. Great that so many people here have blogs. Good for you for not listening to your mom. POTS impacts your life so much. How could you not talk about it? I have started exercerising more regularly in the new year, because I gained about 10 lbs late last yr. Cardio is hard for me, which is why yoga has been my main exercise for the past few years. But it is the way to lose weight, so i have been riding a recumbent bike. I dont think i could ever handle spin class, tho. How do you do it? I have been wearing compression hose for my cardio, which I think has helped my recovery time. after my body gets used to cardio, I no longer need the hose, but for now it helps a lot. be gentle on yourself - find a balance between working towards your goal and pushing too hard and making yourself sick. I hope you are able to complete your race!

It is hard to quantify what is the "hardest" thing I have ever done. That being said, POTS has been very challenging because it is not well known and hard to treat, and bc I got it at an age when most people r healthy. And yes, most people I know cant begin to imagine what it is like to have POTS or any other chronic illness. And it is VERY painful to listen to them whine about the common cold. That being said, some don't have enough to eat or live in places where people are being raped and murdered all over the place. They would probably love to be in our shoes. So I am grateful where I am.

Not sure i understand the light theory. I think we feel better at night because we have been drinking water all day. In the summer it is light til late and I know I still feel better in the early evening, so doesnt seem like light is a factor. There are definitely some people with an autoimmune component, and others without. Rama is right - many different causes.

Yes, it was on Mystery Diagnosis, Dr House and in the Wasington Post and NY Times. Usually it's based on just one person's perspective, which doesn't necessarily represent us well as a group. That will be one of the big challenges - getting the "right" kind of publicity.

It sounds like your doctor and cardio don't have enough experience with POTS. IS this neurologist a POTS specialist? If not, he/she might not be helpful either.

Awesome! I would love to see POTS awareness and have it on TV. In addtion to Dr Oz, there is also that show The Doctors. Dr Oz is a leading cardiologist so i'd bet he has at least heard of POTS. It's great that some of you have media connections. I think that is what it will take. Otherwise, TV producers just care about ratings/advertising.

Doctors are like this for any condition that is outside the box. Just watch Mystery Diagnosis. I am thankful that most of us don't have anything life-threatening. I think mst drs are good until they encounter something they don't know.

It's the way the system is set up. They get paid for popping patients in and out and they only specialize in one thing, where pots involves multiple systems. Sad to think of it as a business, but it's the reality of things. Would be nice to have someone take a personal interest in us, but not holding my breath. They also do deal with hypochondriacs/crazy people, and just assume we are that. It's easier than admitting they are wrong or might not know. The best thing to do is to see a doc that has experience treating other POTS patients, if you can manage to find one.

I think we all have different mechanisms at work that cause less oxygen in the brain. Some have pooling, others have low blood volume, some have EDS. I am not sure that keeping up CO2 levels would necessarily help - seems like more of a symptom than a cause. I do hold my breath too.

I'm in the too many goosebumps category!

Yes, lying down, sitting and standing. Sitting is an upright posture, even though not all the way upright. For me I think when I am active during the day, sometimes my heart never calms down even when I lie back down.

My mom is anemic and took Epo for years. I wouldn't be surprised if related. I believe EPO was found to be dangerous in the US and is now only prescribed to cancer patients and not for regular anemia.

I agree. When first sick I had a ton of tests and all came back normal other thn TTT. It is frustrating and not fair when you feel so sick but everything is normal on tests. We all want that aha moment where we pinpoint something that can be fixed. Unfortunatlely, dysautonomia usually doesnt work that way. For me, I realized it was much more productive focusing on trying treatments rather than figuring out what caused it. even the treatment process takes years and is ongoing.

I could never tolerate salt tablets. They made me nauseous. However, I drink broth which is a lot saltier than Gatorade. I feel an instant lift often after I drink broth. Maybe it is the fact that Gatorade and salt tablets are not as natural as ingesting a normal food. I do know that salt tabs and Gatorade work for many and i would not want to discourage people from these options. I do think thatpart of it is drinking the right amount of water and it is a tricky balance. We are all so different I think we have try things and see what works for us in consultation with our drs.

As to cure it depends on the med and the condition. For POTS, most of us take meds on a long term basis which don't cure us, but manage our symptoms... Unlike something like antibiotics, which you take for a short time to kill an infection and bring you back to normal when you stop taking it. However, meds can help you be more active, which helps POTS and also the body can heal on its own.

I agree with thankful. My med reductions have always been after consulting with my dr. And I usually did not go all the way at first, but rather lowering my dose to see if my I could function with less meds.

The only way to see if your baseline has improved is to wean off your meds and see if u can get by with less. This can be painful to try, because you might hAve to waen very slwly and can experience side effcts, but worth it if you see improvement. Not sure how long you have had pots - I try this about once a year.

There is a support group called dynakids that is aimed at younger people.