yogini

I'm not sure what deconditioning means medically, but I think many of us aren't deconditioned. I wouldn't considermyself athletic, but went from being able to do the elliptical machine for 45 minutes one day, to having POTS the next day. I don't think anything happened to my conditioning, just somehting went wrong with my nervous system. I do agree that it's hard to measure our fitness as compared to healthy people. I go to intermediate yoga class, which some of my friends might not be able to do. However, they can all do a long day's worth of activities basically every day, which I wouldn't try.

That's great. I'm very flexible in some places but don't think I have EDS. I still wonder whether non-EDS flexibility contributes to POTS.

Although turmeric is common in a lot of indian food, the amount is probably not enough to provide the theraputic benefits of taking by capsule - it would be a lot less than the amount of salt in food, for example. I'm going to start trying it this weekend. I am normally hesitant about supplements, but since it's a commonly used spice and has been researched, I feel a bit more comfortable. And I'm going to start with a low dose. I'm worried about it keeping me up and also about it upsetting my stomach.

That is really cool, Julie! Thanks for sharing. And I'd love to see the studies if you have them How long until you started feeling the effects? And, also, does it upset your stomach any? I have a sensitive tummy and tend to get reflux pretty easily. My family is from India - I know my mom often uses turmeric. I think it's yellow in color and spicy, unless I'm getting it mixed up with one of the other spices. I asked about the stomach b/c of the spiciness.

Don't be too hard on yourself. Your "feelings" seem like more of a "crush" - if you liked him right away, maybe it is based more on looks (or something else superficial) than reality. Sometimes that can't be helped. His interest in erotica isn't abnormal, but I'm surprised that he'd put it in a public profile - where his patients could see it. I personally feel more comfortable with a female therapist. It allows me to be totally candid about my personal life and female things (like having my period). In any case, I think a new therapist would help you to focus on the actual issues that you want to adress. It's not worth having a therapist who gives you more issues!

I'm sorry you had to stand the whole way. I used to ride the bus a lot when I was a student. On most bus lines, a ticket doesn't guarantee a seat on any particular bus. You can use it to take any bus, but seats are first come, first served Most time when there aren't enough seats, they will make you wait for the next bus, though I think it's legal to stand as long as it's far enough away from the windshield.

My sleep schedule is totally off right now too. I do feel a little better at night, but don't have as dramatic a difference as you. Mabye part of it is that your meds take a while to kick in. Have you tried setting your alarm early, taking your meds and then going back to sleep?

Well said! I think many of us, especially those who devleoped this later in life, struggle with getting past questions like "am i dying?", "why did this happen to me?", "why can't i do this anymore?" and "why can't i keep up with everyone else?". I think it took me a few months to get past these questions. but after that I lived for a couple of years always worrying about relapsing or aggravating my symptoms. Finally I've fotten to the stage where I am focusing on LIVING within my limits, and accepting that, no matter how careful I am, I will get flare ups sometimes. The flare ups are worth it because I get to experience life! I feel so much better after coming to these realizations. It's like a ton of weight has been lifted off of my shoulders.

I agree with mkoven - at least with florinef, swelling isn't good and means you have to stop or reduce your dose. Talk to your doc.

Mayo is worthwhile, but hard to get into. When I went in 2004, Dr. Low told me they have to turn away 80% of the applicants. If you do get in, there is also a wait of a couple of months to get an appointment. I would go ahead and submit a thorough application and see what happens. In the meanwhile, you may also want to look for a POTS specialist in your area. Mayo is great for evaulation, but you really need a knoweldgeable local dr for ongoing care. I don't know whether your drs treat a lot of POTS patients, but people who don't specialize in dysautomia don't always know all of the symptoms and suggest there is "something else" going on. There is a list of POTS specialists on the DINET main page. Good luck.

You guys are so lucky. Caffeine makes my HR beat faster and keeps me up at night. Some times are better than others, but overall I'm better off without it. On long days, a can of Diet Coke in the late morning gets me through the day and wears of in time to let me sleep. I don't like coffee or tea anyway, but I do miss my Coke!

The good effects of beta blockers kick in right away - controlling HR and BP. Maybe your dr was referring to side effects when he mentioned 2 weeks, because it takes a while to get used to the beta blocker. Actually the side effects keep decreasing over time, even months down the road. The BB does not build up in your system, but rather stays in your system for 24 hrs or so. In terms of how much your HR number is affected, it really depends on the person. We all have different numbers to start off with and respond differently to meds you have to change your doseage or change to a different beta blocker or add another med to get the desired effect. You have to try to see how it works for oyu. But they are one of the most effective meds for POTS and help many. Good luck!

A 98% rate for curing POTS or for illness in general? Maybe you should ask how many patients she's had. I can't imagine that anyone, besides a POTS specialist, would encounter too many POTS patients. Even my cardiologist only has a couple of patients besides me, and that's in a big city. I'd also be wary. The best known treatments for POTS are already listed on the Dinet main page, and I would be careful of trying anything else.

I'm hyperflexible only in my shoulders. I'm not sure I have EDS, but I wonder if being overly flexible in some places would make me prone to POTS

I know how you feel - I gained weight with a beta blocker. Adding salt and water shouldn't cause you to gain too much more weight - most of it washes out of your system, unless you're taking a med like flornief. Salt and fluids help enable us to be more active and exericse more - so maybe they will indirectly help you lose weight. I ate pretty healthy before POTS, but became more particular about my diet. In addition to salt and fluids, I eat more regularly and have focused on cutting out chemicals and processed foods.

I think I forgot to mention in my post that the trip was in early Nov!!!

Interesting. I was going to post about my sleep patterns being off. This all started when I traveled to a different time zone for a week. When I came back, I started sleeping through the night and waking up at 11 or noon every day. Now it's like 10 or 11 every day. The funny thing is that I needed meds to fall asleep before from time to time. Now I haven't need the meds (a great thing), but I'm zonking out for 10 hrs every night and waking up late. I haven't pushed too hard to get up earlier. I will hope I don't have another syndrome, and that this is something that will correct itself over time...

Hi, Do you get pooling in your arms and legs just by eating a few bites? Wow. Maybe putting ice on your arms and legs would help with the swelling and pain?

Hi Tea, Sorry you aren't getting good sleep. I know that can make a flare up worse! For a long while, I took 1/4 pill of ambien to help me fall asleep during bad periods. More recently, I have switched to benedryl. I tried it along time ago and it didn't work - then I tried it again and realized if I take it around 7, I'll be asleep around 11 and sleep through the night. If I really need sleep, I take 2 benedryl and that will make me sleep for most of the next day too. I know you're not big on meds, but at least benedryl is not addictive. Hope you can catch some zzzs soon! -Rita

I love these shoes! They really do increase my walking time and relieve my symptoms while walking. I'm able to wear them all day - didn't realize it was bad for the feet, but I don't wear them every day. I wore out my first pair and just bought a replacement. You can try them on in a store for size and get them online for 1/2 price or less. I also love Fit Flops, another brand that make your legs work harder. They're not quite as effective as the MBTs, but they still work and are a lot cheaper!

I started at 50 mg and now take 60 mg. I've been on it for about a year. I felt an increase in my energy level right after I started taking it. My cardio told me the only thing it's been studied for is cholesterol and my cholesterol has dropped. I'm happy to be on it and plan to keep using it.

Interesting. Do you still have POTS, or did your symptoms go away after the surgery?

It's not uncommon to gain weight with POTS. I and many others have gained weight - but my weight gain is more like 10-15lbs. How much florinef are you taking? It is probably contributing and maybe you need to talk to your dr about lowering your dose. You might also have other things going on - have you had your thyroid checked or been to an endocrinologist?

Sleeping it off/spending a few days in bed Talking to friends or family Stretching Internet shopping/browsing/buying! Junk food: fries, popcorn, chocolate, cookies, cupcakes, burgers, pizza Comfort food: rice, jello, soup, bread Movies TV Reading or listening to a book on tape Emailing Checking my horoscope or celebrity gossip sites online

There are different dosages for different betas. For atenolol, I was told to go down from 1 pill (25 mg)/day to 1/2 pill for one week, then 1/2 pill every other day for a week, then stop. If you're on a regular dose of betas, and you stop abrubptly, it can interfere with your heart rhythm or even cause a heart attack. However, if you're already on less than a full dose to start off with, it may be OK to just stop. It's important to check with your dr. I have had my symptoms act up for 2 weeks even when going from 1/2 pill to 1/4 pill or 1/4 pill to 1/8 pill. For me, reducing POTS meds is always easier when I go much slower than the drs suggest. I could never have gotten off florinef or atenolol if I did it as fast as they wanted me to!