yogini

I used to take HOT showers but have switched to very warm. I do get tachy, but it usually calms down within 1/2 hr. I tend to take showers at night - if I take one during the day I try to rest for a little bit until my system calms down. I agree with Katherine - it's the vasodilation from the hot water which does it. Plus standing and moving around to clean yourself probably doesn't help.

You ask some good questions, but don't beat yourself up too much about the diet. Generally the "recommended" dietary changes make you somewhat better, but certainly don't cure POTS. It's OK to cheat sometimes - we are only human. There are many people here who are able to tolerate caffeine and drink coffee/soda every day. It actually helps some people since it brings up the BP. I think it's harder to tolerate for people with POTS (as opposed to NCS) since our HR is already too fast. You just have to experiment and see whether it makes your symptoms worse. I can tolerate it, but I tend to avoid it b/c it makes me feel wired and tachy. The problems you mentioned with salt are ones which regular folks (with normal blood volume and BP) have. The majority of people here probably have a high salt intake - many people have been doing it for years - and don't seem to have any of the problems you mention. It's good to have regular check ups with your dr and get your blood drawn to make sure your blood counts are OK. You can take a multivitamin, but you probably don't need to supplement otherwise unless your dr recommends.

I agree with Mack's Mom. I had a similar experience with florinef - my BP increased after being on it for several months, and so I weaned off of it slowly. This was a good thing, as it meant I was improving. Many people who have POTS when they are younger seem to outgrow it, so maybe that's what's happening to you! I think you are ALWAYS supposed to take florinef with salt, so if your BP is high, you should generally reduce the florinef and not the salt. I would go super slowly, because it takes a few weeks for your body to settle down after you reduce the dose. If you go too fast, you might find that you reduced more than you need to. Anyway, talk this all through with your doctor and go slowly...making one change at a time is a very good suggestion.

I'd like to read a book or two on improving my general health. Since we're about to start a new year, I want to try things that I can do to help my energy and well being despite the fact that I have POTS. I was thinking of getting one of the You books by Dr. Oz (since he seems to be on Oprah every other day)...but wanted to know whether any of you have found it helpful or have any other recommendations. I know this won't cure my POTS, but just thinking that every little bit helps. Thanks!

A lot us here seem to have bloating. I didn't know that beef caused a problem. I don't eat much beef, but have a lot of bloating and gas. I have been playing around w/ my diet because diet can make a big difference - it helps to eat easier to digest foods (toast, rice, potatoes) and avoid things that cause gas (beans, brocooli, etc.). There is good info online, but it might be really helpful to see a gastro.

Dizziness can be an autonomic issue. Not to say that you shouldn't look into it, but I had extensive testing only to find out that nothing can really be done - other than the same things being done to treat my POTS symptoms. I had severe dizziness for the first couple of years of my POTS. I used to walk like a snail b/c I felt so dizzy. The good news is that my dizziness has improved greatly, though it comes back sometimes when my POTS flares up.

I was about to say the same thing as Dawn. I can't live without my BB. It makes all of my symptoms better. I think the tradeoff is lower BP and fatigue, but it's better than being stuck at home all day. The side effects of BBs do get better over the months/years. I say if your doc is supporting it, give it a try. By the way, I take a baby dose of atenolol (1/2 pill) and have taken as little as 1/4 pill and this amount makes all the difference for me...so maybe you could start small.

Tea, though you should check with your dr, excess vitamin B washes right out of your system so it's usually safe to take high doses. My multivite has 50mg of thiamin which is like 3,333% of the recommended dose - already a super mega dose. (But perhaps it's not in the right form) Lthomas, I would be interested in finding out how you determined the dosing aof 500 mg and which brand to take. I did a quick search over the net and it's really hard to find anything even over 100mg.

I'd say: Smartwater (electrolyte water) Netflix (easy movie rental) Better than Boullion (super salty organic broth base which comes in a jar and costs 10 cents per serving!) Hair dryer stand, so that you don't have to hold the hair dryer Breathing exercises (through Dr. Weil's CD) Polar heart rate watch This is what I could think of at the moment - I'm sure there is more!

Virginia, I'm so sorry that your mom isn't being supportive. Most of us who are chronically ill are so grateful to our family members who are there for us. I feel indebted to my mom for taking care of me at my worst - and gulity that my parents had to put their lives aside for several months for me. Unfortunately, it seems like your mom feels entitled to have you care for her. You shouldn't feel guilty if you aren't well enough to help her out - you need to take care of yourself. I know it's hard, but I hope that there are others who can pitch in and that you are somehow able to transition your relationship so that she doesn't rely on you so heavily. In any case, if you don't receive the understanding you need from your family, this is a great place for support. Rita

At the Mayo Clinic, they recommended that I lie down for 45 min each day and put my feet up on pillows so that they are above my heart. This causes the blood to drain back into the body if you have pooling. So maybe your headstands are having a similar effect, though I wouldn't assume so unless you talk to a dr. I've started taking yoga within the past few months and sometimes we do a headstand in class. I haven't found that it helps my POTS symptoms - if anything it causes them to act up. There is a modified version where you lie on your back with your rear end up against the wall and put your legs vertically against the wall. This is more of a supported headstand which doesn't require nearly as much energy. I think it still causes the blood to drain out of your legs. If it is working and you have the strength to do headstands regularly, though, more power to you! On the bending over question - the hard part is not bending over as much as coming up. Even regular people get head rushes from coming up too fast. I know this from yoga, because they always make you come up slowly so you don't get dizzy.

I've traveled many times by myself. I think you hit the nail on the head - it's really important to plan and make sure you have plenty everything you need - food, water, meds, etc. I think one of the hardest parts is carrying everything for yourself. I usually have a family member or friend meeting me at the other end to help me with my stuff, but I do have to manage it when I get back home. The SmartCarts can be helpful in lugging your stuff around the station. On a train, you have the added advantage that you'll have cell phone access throughout the trip...so that if you're not feeling well you could call a friend or relative for moral support. On long trips, I like to take a sleeping pill so that I don't remember most of it...you could ask your dr for Ambien or take something OTC. I've found that travel has, for the most part, gotten easier over time and has given me confidence to try things more on my own. Safe travels.

I think also that they focus more on the systolic/diastolic rather than the pulse pressure. 90/60 is considered within the "normal" range of BP. Since your numbers were aroudn there, they probably weren't alarmed. My drs didn't seem overly concerned when my BP was 80/50. I did get midodrine, though. Maybe you should make an appt so that you and your dr can come up with a plan to bring up your BP.

That's interesting. I've noticed my sleep improves a LOT whenever I cut back on my beta blocker dose. I always thought it was the slight increase in blood pressure which helped me. I didn't realize about the melatonin. I did a search re: CoQ10 and there are a few preliminary studies that it helps with heart rhythm and angina...but I'm surprised that a pharmacy would actually recommend that you take it based upon that. I wouldn't mind trying it. but don't have the foggiest idea about which brand to buy and what dose to take. I have always been afraid to drink vitamin water, since I take pretty strong multivites and don't want to accidentally OD. The same company makes smartwater and fruit water, which just have electrolytes.

Did you actually fall backward or just sway backward? I did 3 months of vestibular rehab and learned that everyone will sway a bit with their eyes closed, because our eyes help us balance. A loss of balance could be from a neurological issue or an inner ear issue. POTS can also interfere with balance. Just be sure that you get thorough testing, because I was diagnosed with an inner ear condition and after 3 months of rehab we discovered it was POTS and not an ear issue. Glad your dr is doing his homework. Good luck!

i LOVE the mbt shoes. I have two pairs - the sneakers and the sandals. I tried them after someone posted about them here. You can read about the technology on their website (I think it's just mbt.com), but it makes your legs work harder when walking, which helps to get the blood moving. I can walk faster in them and for a longer time. They are also supposed to tone up your legs, abs, etc and improve your posture, but I don't care much about that part. The drawbacks are that they're kind of bulky and pricey ($300). Someone at work got them for $100 over the web...but hers were dark green hi tops and, well, I can see why they were discounted!

I checked out a pair today and the wheels are inside the shoe and only a small part sticks out of the sole. The wheel is actually slightly in front of the heel. Although it rmay require leaning on the back of the foot, you don't have to stand all the way on your heels. I wouldn't personally be too worried about permanent foot damage from occasional use. And the balance would seem easier than skating since the wheel is so low. However, it's definitely not worth the risk of falling and hurting yourself. Hopefully they will come up with a better model in the future!

Thanks for the link. I think the shoes are as safe as rollerblades, but kids get hurt b/c they don't wear the safety gear. I used to love to rollerblade/skate but haven't attempted it since getting POTS. I don't particularly feel like wearing the safety gear either - it'd look pretty ridiculous while running my errands! I guess I will have to hold off on the shoes. Oh well...

This may sound kind of crazy, but I have noticed that some kids these days are wearing sneakers with wheels and just sliding right by me on the street. Does anyone know what they are called and whether they come in adult sizes? I walk really slowly and struggle to keep up, especially when walking for more than a few minutes, so I was thinking these shoes might be helpful. I just wonder how much effort it takes to use them and whether they require balance like skating? They look really easy and effortless to use, but not really sure. Maybe just another kooky idea, but thought I'd ask!

I tend to be one of those people who is always cold and walks around shivering. But I guess I am a big wimp b/c I also get extremely uncomfortable when it's too hot. I have to dress in layers so that I can adjust all the time. I actually think the extreme heat is worse for my POTS symptoms than the cold. I can feel sick for hours or days from the heat, whereas the cold doesn't seem to have much of a lasting effect once I'm inside.

This has come up in the forum before. Here is a link to the search. http://dinet.ipbhost.com/index.php?act=Sea...lite=ivabradine According to some of the old posts, it is available in the US. If anyone has a way of finding out the true status, I would be interested. If this is truly a drug that regulates HR without lowering BP, sign me up! Many of us here get discouraged that not enough treatments are being developed for POTS. But it seems that slowly but surely we keep finding new drugs, whether intended specifically for us or not. There is hope!

Thanks so much Tessa. I'm just guessing here, but I get the feeling that the ones with true celiac start to feel better almost immediately. Maybe people with a mild intolerance or those who are just better off not eating gluten take a bit longer. I definitely don't see myself being able to keep off of gluten for 6 months unless I start to see some benefit. I did not get my celiac test results on Fri and hoping to get them tomorrow. I expect the test will be negative. I do agree with you that foods which naturally don't contain gluten are generally much tastier than gluten free substitutes. The one exception for me has been the brown rice pasta. I will stick with that even if I go back to eating gluten. I didn't like the bread much - I would rather just skip the bread and make do with pasta, rice and potatoes. I also just read about a gluten-free/dairy free bakery here in NY that was voted to have the best cupcakes in the whole city (even as compared to regular bakeries). It's a bit out of the way, but I plan to check it out tomorrow. Not exactly part of a healthy diet, but I just need something to look forward to.

I think many of us on this board have been around POTS for years and seen many, many doctors and are probably in a different stage of our journeys. Once you've been around for a while, you get a better sense of what might be helpful and when it makes sense to turn down drs appointments. I think in order to get to that stage, you have to see a lot of doctors and you will inevitably not be happy with all of them. That's just the nature of our condition and the options available to us. When you are starting out, I do think it makes sense to go to one of the "leading" dysautonomia specialists if you can. From reading posts here for over 3 years and reading POTS literature in general, it seems like Vanderbilt is a good place as any to start. Because I think you could post about almost all of the autonomic doctors and institutions get very mixed reviews. Read through old posts and you will see!

I was the one who posted about gluten free diets recently. Thanks for asking some of the questions that are also on my mind. I've been gluten-free since last Sunday and I definitely had really bad gas for the first few days. Though it was bad before I started the diet, it was even worse after I started...though now it seems to have calmed down. My hormones are raging all over the place and I'm having strange cravings - cravings for carbs, but also for red meat and lamb chops, which I never eat at home. I'm still eating a fair amount of carbs - corn, potatoes and rice. I haven't really see any improvement in my POTS symptoms or energy level so far. Unless I see some effects soon, I'm not sure how long I will be able to keep this up, especially with the holidays coming up...so I'd really be interested in getting input from anyone else who has tried this diet. Good luck with your diet! -Rita

My appointment today went very well. When I mentioned gas and bloating, my dr himself suggested testing me for celiac. He drew the blood right there and I'll have the results on Fri...not that I'm expecting to test positive, but it will be good to at least know. I also asked about a lactose intolerance test and he said that was a good idea, but his machine is broken, so I need to go back at another time. Or I could just try eliminating dairy from my diet to see if that helps. I actually haven't eaten any dairy for the last week (it doesn't seem to have helped much), but I will see if I can hold out for another week. As for the gas, his suggestion was that I eliminate all gas-producing foods from my diet for a couple of weeks. If that doesn't help, he suggested probiotics (again before I had a chance to ask). For those who are interested, the brands he recommends are FloraStor and FloraQ - he said these have been more thoroughly tested than any other probiotics. Neither of them need refrigeration. I'm tempted to skip the elimination diet and just try the probiotics. It has been hard enough not eating dairy. I already bought some FloraStor, but we'll see...