yogini

I don't remember how much got, but I could feel the difference immediately. I went from 155 HR to normal. When your body has enough fluids, it will flush out the extra. You will know if you got enough if you have to go to the bathroom. That being said, saline doesn't work for everyone. Maybe it isn't the right treatment for you.

Rama, where do you get the stat that so many POTS patients are hypovolemic? I thought most had normal blood volume. There are other mechanisms that can cause low BP - neuropathy, EDS, etc.

For me, it isn't necessarily connected to my activities once I land. When I visit family, I often go there and lie around, no alcohol or activity and if anything I am extra conscious about resting, drinking and salt loading around travel time.

Interesting, I always shave a craving for carbonated drinks. Never realized it helps hydration!

I can't tolerate salt tablets at all. I drink organic broth. One cup has almost as much salt as a tablet and is much easier on the tummy.

Florinef would be way worse in terms of side effects than salt loading. It increases salt retention, plus has a whole bunch of other side effects.I think the Effects of salt may be less dangerous for many dysautonomia patients than the average person. too much salt for normal people leads to high BP, which can wreak havoc on the body. Many of us have low BP or low volume and if salt brings us to normal, it shouldn't be so bad. However, if you have too much water weight from it, that is something to talk about with your dr, esp if it isn't really helping with symptoms.

I think it has to do with altitude, air pressure and cabin pressure.

Everyone here is so different. You have to tailor your treatment to your symptoms. There are some dysautonomia patients with high BP, so salt clearly isn't good for everyone. There is also a big difference btween sodium (Na) and salt (NaCl). Salt is not pure sodium, and it can get confusing as to whether the mgs are sodium or salt. As with anything else the key is to start slowly and build up. If you are not feeling better, then it may make sense to stop or cut down. If you started with 5mg and that is too much, it may make sense to try 1mg and see how you feel. I do feel better on extra salt, but not everyone does.

I definitely agree with building slowly, and that's what's great about using a DVD. You can even lie down in between! The bending up and down can be hard, but I have gotten used to it. The trick is to go slowly at first. Vinyasa classes tend to go up and down quickly, which is not POTS friendly. The classes i took had you roll up slowly. I can handle vinyasa now, but no way i could at first. I started with a DVD called Am/pm Stretch for Health. It's a yoga stretch DVD. Most exercises are on the floor, and you can just skip the hard ones. I always feel great after stretching, because it requires little energy, is calming and gets your blood flowing.

YES, it's changed my life, improved my strength and my POTS. I like Hatha yoga as it's more gentle than vinyasa (what they have in most studios). Yoga shanti is a great DVD as it builds (and you can do segments of it). I also like the beginner OM yoga CD by Cyndi Lee - maybe she makes a DVD.

Yes. Definitely have had a delayed reaction of a ouple of days to flying...that happens to me with exercising/overexertion too

Wow, didn't know it was approved in US. Fabulous!

POTS is an increase of 30 bpm or more upon standing. The increase doesn't have to happen right away, but there does have to be an increase upon standing. Exercising and then stopping/lying down does not seem to me to be a relevant indicator, but the best way to know is see a dr and get a tilt table test. There are also other forms of dysautonomia. You can read about them on the main POTS page.

Great article which seems pretty medically accurate. Glad to see POTS in a major paper. Interesting that the patient is male. I thought the all in your head thing was more for women/girls.

Are you in the US or Eurpoe? Let us know how it goes.

I think you will be OK and not get de conditioned. If I understand correctly, you're not on bed rest, just have to take it easy? Can you sit up instead of lying down? And do gentle stretches and other exercises your dr OKs. I have gone without exercise for more than 3 weeks and it didn't affect my POTS.

The opaque ones are much softer. The sheer ones are scratchy. I would say they are even less comfy than pantyhose. It also depends on which brands you buy - the more expensive ones are much better quality and more comfy in my opinion.

When I first got sick, some well meaning friends were really insistent that I MUST see such and such doctor. After going to several of these docs, none of them helped and it was a total waste of time and energy. I had to learn to set my boundaries. POTS is very specific and not easy to treat even by really smart docs that can almost cure everything else. Regardless of how kind the offer, definitely don't accept any treatment that you dont understand or are not comfortable with.

I love the Polar HR watch. I admit that I was too focused with my HR for a couple of yrs after getting POTS, but then I went away for the wknd and forgot my HR watch and learned that I can survive without it. It takes a while getting used to and you can pick up stray electric signals which wind up giving you wrong readings. You have to learn to ignore that bc it can be scary. If you wear it long enough you can figure out your HR by feeling your wrist and don't need it anymore. It is a fabulous tool for prevention/managing. Like i take beta blockers as needed and if my HR is a certain number i know to take the meds, and i can see my HR slow down. It's great for exercising too, so you know not to push too hard. I would recommend getting one unless you think she will obsessed. The Polars are ECG accurate.

I saw an infomercial today for this machine that is supposed to have mo side effects and helps with pain relief and circulation. It supposedly helps people recover more quickly from pain and injuries with no side effects. I have never heard of this before. I know many of us suffer from pain and it sounds like it could be helpful. My neck, shoulders are always killing me and Would love to find some more relief. Dont want to waste money on a gimmick, though. Has anyone tried this or something like it? http://www.amazon.com/Light-Relief-Infrared-Pain-Device/dp/B000GAAANG

I am glad there is a dietician. You can talk to other people here with GP - I think diet makes a big difference and can make you really sick. The sandwich may have been too much or the wrong thing to eat. A lot of people feel better eating smaller meals, going gluten and dairy free, etc. You can figure it all out once you regain your strength and get out of the hospital. Feel better soon.

I don't think it is realistic to cure pots in one month, and i think you have other health problems too? And I have never heard of it cured, just managed with meds or gone away over time. I would think very carefully about getting chiro adjustments with EDS. If he is willing to treat you with just the supplements, then that might not be a bad option.

ask your doctor, because everyone is so different. I have had over 100 lying down many times and that is not dangerous for me, even though my usual lying HR is in the 70s. You may also want to ask for any medicine. I use beta blockers as needed to manage my tachy and that calms things down soon after I take it.

I can understnd how you feel. Its important to do tons of research, I did, and also to get thoroughly tested for any co-conditions (EDS, etc) that you have symptoms for to rule them out. Managing your other issues can help POTS a lot. If you don't have another condition to start off with, you probably won't get it, since most of them seem to be genetic, or at least triggers. And most people get better with time, even those with other stuff. It does seem like practically everyone else on the forum has other stuff going on. But I don't and at least a few others don't, so know you aren't alone.

Much better after 8 yrs