potsgirl

How interesting. Thanks for your input! Jana

Morgan~ My respiration rate is usually low, but the last three days it has been noticeably slower. I don't feel well, either. Do you have medical training? I wasn't sure if I should have that blood test that measures acidity, oxygen and Co2 or not. What do you think? Thanks again! Jana

Nauthiz, As far as I know, that is not a POTS symptom. It sounds like you should go see your PCP about it. Is it still going on? How long does it last? Take care, Jana

Hello Everyone~ I've always had pretty low respiration, but these last 3-4 days I'm down to taking 5-7 breaths per minute. Normal is 12-24. Do other people has this problem? I have a call in to my doctor, and I know that the ANS controls functions such as breathing, so I was wondering if anyone else knew anything more about this. Any insight would be helpful. My arms and legs feel weak, and I'm dizzier than usual (that's pretty dizzy!), and feel like passing out. So it's hard to tell if this is just my dysautonomia or the respiration or both. Thanks! Jana

We're going to miss you Ernie! Stay well. Cheers, Jana

Good morning~ I am also a fainter, and when I'm in a 'down' phase, can pass out 3-4 times a week. I drive unless it's a really bad day, because I only faint when I first stand up or when I've been on my feet too long. Unfortunately, we have a double staircase to our second floor that I must maneuver at least a couple of times a day. Either I walk down the stairs holding on to a rail and my boyfriend, or I go downstairs on my rump. Not very dignified, but hey - whatever works. Now in the 'embarrassing department' I have fainted in the middle of Macy's and also in front of the post office. Thankfully I had someone along both times. It's gotten to where I can feel myself starting to go, and the best thing to do is bend over and grasp your knees, hard. Or sit down immediately, if you can. Grab onto a friend if they're nearby. Do you also have sudden falls? Sometimes I'll just collapse to the floor, but not pass out. I can never tell when these are coming...I suppose I should look at a walker or cane or maaaaaybe a wheelchair, but I just don't want to give in! Hang in there, and do the best you can, and don't take needless risks. We all supporting you here! Cheers, Jana

Hi Pat~ I live here in Tucson - tell him to get ready for some HOT weather! We're already at 100 degrees for this week. You just have to learn to stay in air conditioning, like when I was in the Midwest, and went from heated car to heated building. Target or Wal-Mart are the best places to pick up smaller items, even some small pieces of furniture. Sam Levitz is the best place to buy new furniture, they've always got a sale going. There are also second-hand shops and the Salvation Army, Goodwill, etc all over the place here. He can also find items in the newspaper. What will he be doing? Working? Going to school? Is he disabled with his POTS? I can certainly give him info and directions around the city. I have a son who lives in CA that's 26. Cheers, Jana

Steph, Welcome to the forum! You said you were diagnosed with dysautonomia, but your salt intake should be at a level appropriate for your particular condition. If you have POTS, you would need less salt than someone like me, who tends to have severe orthostatic hypotension (my BP is low, and when I stand it drops to about 70/50, pulse goes from 60 lying to 140 standing). My doctor at the Mayo Clinic told me to eat a lot of salt. So did my other cardiologist. But no one told me an amount. Finally, I asked my Mayo doc, who said I should try for 6-8 GRAMS of salt a day, along with lots of water. Someone with a higher BP range wouldn't need as much salt, so please check with your cardiologist to get the best answer. Just a simple phone call would do it. I take salt tablets (buffered) and eats a ton of salt, and I still don't get enough in. Hope this helps a little. Everyone is different, so it's difficult to have a standing amount on salt intake. Be well, and know that the forum is always here for help and support! Cheers, Jana

Chrissy, Your mother's high blood pressure could be caused by many things, and only the doctors can determine what it is, or if it entails more than one cause. You don't mention how overweight she is, but that could certainly be the reason right there (ie: heart problems, etc). Did the ER docs find anything wrong? I hope she's going to see a cardiologist for her stress test. And of course, if they suspect if could be POTS, they would need to run a TTT. It's hard to say, but please don't get too worried until the appropriate tests have been run. Please keep us updated, and we're always here for support. Sending you positive thoughts and energy, Jana

Hey Bluesman, There is so much more to a person than their looks. Are you witty? Intelligent? Know what's going on in the world and have some interests? Obviously you do, and music is wonderfully artistic and says a lot about you. There are plenty of women out there who would love you just as you are. We still have a lot to give, we just can no longer do the 'usual, normal' things we used to do. Instead, we become more developed as a person - which is worth a lot more than a guy who looks great and is going out all of the time. I KNOW there's someone out there for you. Just don't try to hard, and concentrate on nourishing your inner self. Sorry if I'm getting a little too 70s here, but I believe this. Cheers, Jana

Do you have an appointment lined up with your cardiologist? Is he/she familiar with POTS? If not, you should look into changing to a cardiologist who knows about the disease and how best to treat YOU. There are several doctors listed on the site here, and depending on where you live, there are certainly others, too. Mayo Clinic is a great place, and they'll perform specialized tests to determine more about your unique situation. Usually, the first things tried are compression hose (up to your waist is best), eating a TON of salt, drinking a lot of water and electrolytes (Gatorade, etc), and trying two medications: Florinef and Midodrine to regulate your BP. You can look up both of these drugs under Web MD under 'drugs'. Also, many people are on beta-blockers. It's a trial and error process to find out what will work best for you. Please let me know if you have further questions. You can PM me if you'd like. Take good care of yourself, and get the best care you can afford as they figure out more about your condition. Cheers, Jana

EM & Ricky~ I must echo the sentiment of 'way to go brokenshell'! That was a great answer. I, too, am horrible in the morning, but at night, if I get real sleepy, I feel really poorly, too. It's like I just can't stay awake and BED becomes my one and only goal. I'm usually start downhill around 6 or 7, so I'm in bed by 8 and asleep by 9. Woohoo! Bring on the night life! My prime time is between 2 and 6. Cheers, Jana

Firewatcher, I'm waiting for my first appointment with an endocrinologist. Can you give me some pointers on what tests I should have run? Such as my adrenal gland functioning, enzymes levels?? Thanks! Jana

Chrissy, You don't mention any medications you're on. A lot of people take Midodrine for a burst of energy when they really need it. I can relate, especially to the dinners out. I can't go out at all after 5 or 6 pm. If I do an early dinner, at 5:00, I have to make sure I'm home by 7:00 or I'm falling asleep at the table! Jana

Hi Chrissy~ Please don't feel like at idiot. I think a lot of us have problems with this. When I'm really out of it, I can be in the middle of a discussion and just blank about what we were talking about. Honestly, I will have no clue whatsoever. I have to ask the other person what we were discussing, and it's hard not to feel pretty stupid when you have to do that. Sometimes when I'm having problems finding words or remembering the topic du jour, I need to just relax and let my mind drift and usually I'll remember. Just not as quickly as I want to! Good luck and know you're not alone! Cheers, Jana

My specialist at Mayo told me that the entire body had to be at an even tilt, and that is why just using pillows won't work. It won't allow a smooth flow down your body. I tilted the head of my bed 4 inches. Cheers, Jana

Morgan~ I am so sorry for all of the pain and agony - both physical and emotion - that you are having to endure right now. I had that same pain for two weeks before one day it spiked way up and I headed straight to the ER (where morphine blissfully took the pain away). They did the tests, which showed nothing, but my ER doc was a wise woman, and she told me that even if the tests didn't show anything (and sometimes they don't, especially with women), she was sure it was my gallbladder. I ended up seeing a nephrologist the next day, and had surgery a couple of days after that...two days after Thanksgiving! You're going to feel better after the surgery, but it can take some time to really feel better. Be very careful about the food you eat, and remember that we don't recover as quickly as most. Rest, rest, rest. Please let us know how it goes! Sending healing thoughts your way, Jana

Shimoda~ There is nothing like prom, so have a great time! Run around and score an goal for the rest of us, live life uproariously and have a wonderful time doing it. Thanks for the update - it gives hope to many. Cheers, Jana

I've never heard of Fit-Flops. Do you find these in Macy's or another department store, or a fitness/running shop? Thanks! Jana

I have also been feeling much more fatigued as usual for the past couple of months. My mornings used to be bad, but now I can barely drag myself out of bed. On a good day, I can get out for a short walk or force myself to get to a doctor's appointment. Isn't that ironic? We're all so horribly fatigued, and yet we have to get ourselves to so many doctor's appointments...I can't add anything new to the suggestions, except I take an hour nap in the afternoon during these 'down' times. Sometimes that helps. It certainly gives me something to look forward to after lunch. I'm sending positive thoughts and energy your way! Cheers~ Jana

Yay! My cultures finally came back, and they were negative for herpes. Now they just need to figure out what it IS... Thanks to all for the support! Love to all. Jana

That would be great. And thanks to all who have responded! Cheers, jana

Hey Suzy~ I get the same thing, but thankfully it isn't very often. When I'm in a 'down' period, it's like I've had a stroke. I can't find the right words, I'm confused, and I can't remember what I was just talking about, even if it's only been a couple of minutes. I feel like a complete idiot, and usually go and lay down in bed for an hour or two. Sometimes this helps, other times not, but I hate the feeling of not being able to be coherent. I consider myself a pretty intelligent person, and it makes me really scared when I feel like that. I'm so sorry you're going through this! As if we don't have enough to deal with, hmm? Please rest and try to convince yourself that this will go away - because it will! I'm sending positive energy your way, and you're in my thoughts. Cheers, Jana

Thanks for the idea, Mack's Mom! I will be going for my first endocrinologist appointment soon, and I think they can check that there? I have always suffered from allergies - there's another possible connection - and I know my eosinophil count is usually too high, while my other white cell counts tend to be too low. I'm not sure if that means anything or now...Thanks to everyone answering. Cheers, Jana

I DO see what you're saying, and have wondered the same things myself. I am definitely worse than I was before, not to bring anyone down, but that's the case in my life. I'm sure there are people who must get better, but perhaps they're fewer than what's implied. I sure wish I would get better! Cheers, Jana