ArmyMom46

I drink tea, coffee, and cocoa - decaf only. I am allergic to caffeine, so I have no idea if the caffeine would help with the POTS.

I live in Colorado Springs and go to Colorado Springs Cardiologists. They have 3 electrophysiologists in the practice who are very knowledgeable about POTS. One of them is the head of the practice, Dr. Michael Barber. I highly recommend these doctors. I have never been made to feel like a number or that they didn't have time for me. In fact, I've been amazed at how long they will take with me during an appointment. I've had 15 minute appointments that have lasted an hour. Their website is www.cscardiologists.com.

I've been fortunate in that, except with the first crash that brought on the diagnosis, I am able to work full-time. I work for DHS doing Food Assistance and Medicaid. At my last visit, my electrophysiologist prescribed a mobility scooter for when I want to go out - but not a work yet, changed my meds, and suggested that I no longer use a desk chair. I also have a wheelchair for those times my husband and I don't want to mess with the scooter. Instead of a desk chair, I use a large exercise ball as my chair. This way I have more movement and not as much blood pooling. Fortunately, I don't have to walk much for work. And I've told my teammates about my POTS. They wanted to know if they would need to call 9-1-1, so I told them "If I'm face down, call 9-1-1-. If I'm on my back, don't worry about it -- I put myself there." My teammates are good at noticing when I am in brain fog, lightheaded, etc., and taking care of me when I try to do too much. I miss work occasionly, or have to go home early, because of a POTS episode, but I miss less work than most of my co-workers who are "normal." Of course, the weekend is "crash" time. I rarely do any of the work around the house, because I conserve my strength so I can continue to work.

When I had to fly from Colorado to California for my daughter's wedding last year, my POTS doctor recommended that I let the airlines know I needed a wheelchair from gate to gate. That was such a big help. When I get off the plane I am so dizzy. Not even my cane or hanging onto my husband helps me stay upright. I plan to let the airlines know I need wheelchair assistance when I fly to Maryland in April for the birth of my first "biological" grandchild.

You might also check with your local Department of Human Services and ask about Medicaid.

I used to belong to Slim & Tone, which is like Curves. You spend 1 min on each machine (which aren't hard to do). Between each machine is the cardio (balls, trampoline, jogging board, step) for 1 min. I loved the work out, and it was working for me. But once the POTS hit me, I can't do it any more. The cardio wipes me out before the first minute is over. I would love to be able to do it again, but that's not in my forecast right now.

Tammy - I'm in the minority that can't do the caffeine either. I'm allergic to it. So I have to settle for the taste of coffee (and none of the benefits) by drinking decaf. I haven't had coffee, tea, chocolate in over 15 years. I do take Midodrine daily. It doesn't give me a "charge" when I take it, but if I forget a dose, I sure notice the effect of not having it.

He arrived home safely on January 1. His welcome home ceremony was at 4 a.m. It is so great having him back home. He is on a pass until the 8th. Later this month he will have 2-3 weeks of leave. I was going to post a picture, but I can't figure out how. My mind's not working too well.

He called us about 4:20 this morning. He is in Kuwait now. He will fly out of there tomorrow, and should arrive here about 1-1:30 a.m. on Jan. 1.

Thank you all. He is my HERO!

The new babies are adorable!

My son called us from Iraq on Christmas to wish us a Merry Christmas. He also told us he should be home by New Year's. YIPPEE!!! Thank God for keeping him safe during this tour in Iraq.

I don't know about altitude effects on POTS. I live in Colorado Springs where the altitude is about 6,500 ft, so I am always at high altitude. Right now I'm visiting my mom in Oklahoma and I haven't noticed any change in my symptoms from being here versus at home.

I have problems with this, too. Usually they appear for unknown reasons. I've also noticed that when my skin is extremely dry and I'm scratching a lot, I end up with huge (fist sized) bruises. Then I tell my husband he needs to quit hitting me. (If you knew Daryl, you would definitely know that's a joke. He has always treated me with kid gloves.)

This summer I couldn't tolerate the heat - I cranked the air conditioner and froze my family, and carried a fan with me. Now that it's so cold here in Colorado Springs, I can't get warm. My hands are like ice. I've been trying to wear gloves with the tips cut off to try to keep my hands warm while at work, but it doesn't help a lot. Last night I had the fireplace going, in addition to the central heat, and huddled under an afghan, and still couldn't get warm enough. Seems like it's either feast or famine!

I have POTS, and definitely don't have ADD or ADHD.

Congratulations? I know my hose help me. For me the toughest adjustment wasn't wearing them, but getting them on.

Propel doesn't have artificial sweetners. If it did, I wouldn't drink it. I can't stand the taste of fake sugars.

I don't know if shaving the dogs will help. We have two Shelties and a Collie. You can imagine the hair around here! We shaved them down at the beginning of the summer. It didn't cut down on the hair around the house at all. My husband and I are convinced that the dog hair spontaneously generates. He can vacuum the whole house with the dogs outside. Within five minutes we find clumps of hair, without the dogs being inside.

When I was about 6 years old I had several grand mal-type seizures and spent a week in the hospital. I was deiagnosed with epilepsy. I remember taking phenobarbital. I was on it that about 3 years. Eventually, they weaned me off, said I didn't have/never had epilepsy, and didn't know why I'd had the seizures. It was just a fluke. I still don't have that type of problem. Maybe it was a God healing. Also, as a child through teen, whenever I overheated (and I lived in the San Joaquin Valley of California - very hot in summer!) I would pass out. Doctors never did any testing, but told us that because I was so thin, and my blood pressure while normal, was still on the low side, would drop because of the heat. Since it didn't have much room to drop, I would pass out. They said that if I put on weight it would help. I tried everything in the world to gain weight, and it never worked. (Sure wish that was still my problem. Now I have at least 30 extra pounds I'd love to get rid of ) I've often wondered if the POTS is related to some of the problems from my childhood.

My EP told me to drink Gatorade and 3 small cans of tomato/V8 juice every day (as part of trying to get 1.5 gallons of fluid a day). I tried Gatorade. We have so many different flavors because my daughter loves it. To me, it left an unpleasant aftertaste. I tried Propel because I was looking for a non-sugarfree, no caffeine, sodium and electrolyte added water. I was tired of just drinking plain old water after six straight months. My favorite Propel flavors are Grape and Lemon. I don't go anywhere without my Propel bottle. And I keep packets for the water bottles in my desk at work, and in my purse. That way I never have to go without. It makes it easier to drink my "water", but I still haven't figured out how to make it up to 1.5 gallons a day. The best I've done is 80 oz.

The shower cleaner is AutomaticShowerCleaner by Scrubbing Bubbles. To help with cleaning the bathtub, you might try the Mr. Clean bathtub cleaner/scourer. It has an extendable handle so you don't have to bend over to scour the tub. My husband uses both to keep our tub cleaned.

That fits with my definition of fatigue. It's how I often feel. I often fall asleep at the drop of a hat.

This has been reassuring. I figured since it seems like many of you have been dealing with the POTS stuff for quite a while, that you were good at taking care of yourselves. I have tried to do what my EP told me to do, but it's too hot to wear those hot, heavy compression hose. And I have not figured out how to get 1.5 gallons of fluid, even though I always have my Propel and tomato juice with me. Taking the meds isn't a problem for me since I set the alarm on my cell phone to go off every 3 hours so I'll remember the Midodrine. I found out that if I forget it at work, I'll pay for it the rest of the day, and into the next day. I've been afraid to try the hot baths that I likes so well, since I have frequently had problems getting dizzy in my shower. Thankfully our tub/shower has wide sides so that I can sit down when it gets to be more than I can handle. I usually win the temp. inside the house argument. My husband and daughter give in to what I need at the moment since they don't want to pick me up off the floor. The upcoming winter will be interesting since I overheat so easily and keep cooling down the house. I remind them that they can put on more clothes than I can take off.

I understand completely. Weakness and dizziness are my biggest, constant complaints. I usually tell my husband that my legs feel like they are going to fall off. I get through it by just laying down and doing nothing when I absolutely have no strength to do anything else.