yogini

From what I understand, most get a pacemaker because they have no other option - their heart stops on the TTT--I think it can help stabilize low HRs (which in turn may help BP) but does not help high HRs.

I understand your hesitation to take Florinef with high BP. I would feel the same, as it's a pretty rough medication. as far as i know, it only brings up BP, and does not even it out. it also takes a few weeks to kick in and can be hard to get off of. Is your doctor a POTS specialist? You may want to think about getting a second opinion.

A lot of different companies make the "burp free" kind of Ishieldz. If you store it in the freezer, that helps too, so that it doesn't melt until later...

Saline has been used for years in severe cases. The question is for the rest of us - there may be no side effects such as fatigue with beta blockers - instead there are risks as good mentioned.

Good, Thanks for giving a first hand account of the risks of saline. It is not an easy answer for us by any means.

Anytime!

Jen, I am so sorry on all you are dealing with. I just wanted to say that I did not do cardio for the longest time after getting POTS. I walked slowly, did stretches, then floor Pilates. I did each exercise building up in 5 min increments. I also did exercises in the pool - not swimming at first, but rather gentle exercises. Eventually I felt well enough to exercise in a sitting position and moved to a recumbent bike, and I did that in 5 min increments too. Anything more and I would have migranes and tachycardia for days. I know that the research is on cardio, but I found great benefit in any exercise I have done. Even now though I can work full time, I can't run, do the elliptical or any other excercise standing up, other than yoga which is gentle and not cardio. We are all so different and I think it is important to take care of yourself and coordinate with your dr. I wish you the best!

Squatting instead of bending and coming up slowly helps. It is the coming up that gets you. This has come up a lot in prior posts. Here is one that might be helpful.

Interesting. I think many of us couldnt get at home treatments bc we don't need the infusions all the time. It would be nice if saline became available as a recognized treatment to us. They think about $ but how about all the money and time in wasted drs appointments, medications, sick time etc when a little salt water would do the trick to get out of bad times. Rama, I would be interested in reading about the clinical trials. Is there info on the web?

I don't think I am hypovolemic, but responded very well to saline the one time i had it. I think for those of us not hypovolemic, our bodies may mimic symptoms of hypovolemia. Would be AMAZING if they could figure out WHY it works so much better than drinking!

Rama, are they testing saline on patients who don't respond to other treatments or patients in general? My knowledge is dated by several years, but last I heard it was quite controversial, because the risk of getting a port or other semi permanent way to get the infusions on a regular basis ran a high chance of sepsis. Doctors used to think it wasnt worth the risk except in the very worst cases, where one had PAF, etc. In fact several on the forum have had very scary encounters with sepsis. I thought you couldn't get ongoing saline through regular IV, because eventually you'd have no veins left.

Have you been tested for celiac? some people feel better gluten free even if they don't have celiac. Maybe eating smaller, high protein meals more frequently would help. In general, a high carb diet is not good for POTS. I agree more research needs to be done in this area - not sure docs know much now.

http://www.doctoroz.com/videos/montel-williams-daily-energy-boost-plan This seems like a good plan using some of these ideas!

CC, maybe you want to talk with others on the forum with similar HRs. My TTT result was slightly higher than yours and I sometimes get the rates you mention, but there are lots of others who deal with your numbers, or higher, one very day. Although unusual for your doc they are not so atypical for POTS.

That happened to me when I tried to get it during a flare. Drs don't understand its benefits and that its not the same as drinking. Also, most docs couldn't don't have it in their office. Getting it would mean going to the hospital in most cases, which costs $, making them more reluctant to give it. I hope u are able to find a way to get it!

No, that is their wait time. If you schedule all of these appointments ahead of time, you can squeeze them into one trip. Otherwise they give you 1st available. They sometimes take standbys so you could try that or just do another trip in a few months where you get all these apps at once. Sorry you r dealing with this.

Most drs can only deal with things they know about that fit in a neat little box. It takes a special doctor to break out of his/her usual routine and take time to learn about a rare condition like POTS. It may not be any comfort, but the way they treat us often reflects their own inability to acknowledge that they might not know something. I hope you can find another, better doctor in your area that can help you. To this one, good riddance!

A bad diet, chemicals, polution etc., certainly don't help, but I don't think POTS is caused by diet. I remember reading that POTS (solidier's heart) existed during the Civil War, back when food used to be real! And the average American diet is atrocious, yet hardly anyone has POTS. In fact I think the people on this forum are way more diet conscious than the average person...other than those from yoga who are vegan, macrobiotic, etc. (many of whom have chronic health issues anyway). I am certain that most people will improve over time - believe it or not, that is already true, but stats will get better as research continues.

BBs themselves would only cause weight maintenance or gain. If you are losing weight on them, it is likely the POTS itself or something else going on.

Rama, You are much more into the specific scientific details than me. I think the reason people are so hard to treat is because they so often have one or more difficult coconditions going on. Something like mitochondrial disease, chiari or EDS for which there is no easy treatment, if any treatment. Severe allergies or sensitivity to meds. Asthma which affects oxygen intake. Gastroparesis limiting the ability to eat/drink, lowering their body weight/water retention and making their POTS worse. Autoimmune issues. There are a lot of treatments out there that doctors don't know about, if they have even heard of Dys in the first place. exercise could help us, if only we could find the energy and stable enough HR/BP to exercise, and could afford to be sick for days afterword. for the rest of us, who may not have any of these issues (that we know about) and can tolerate medications (and afford them, and find a dr willing to prescribe) the meds don't address all the symptoms and have lovely side effects of their own. Such fun indeed!

I agree with Elfie. I think it depends on what is going on with your particular body. Although stimulants seem like the logical choice to improve fatigue and do so for normal people, that is not the first med drs would jump to prescribe for PoTS. I also think that, although extreme fatigue is a symptom of POTS, it can be improved. A lot. I am a living example of how fatigue dramatically improved with the right meds. If you are not comfy with sharing your details on the forum, perhaps you can Look for a dr that knows about other treatment options that can help you in lieu of, or in addition to, beta blockers.

Issie, sorry if this is a stupid question. Is l-arginine the same thing as nitric oxide?

I must admit I haven't kept up to speed on the POTS theories floating around the forum. However, I think someone mentioned that a nitric oxide deficiency could be involved. I just saw this add on CNN.com for a nitric oxide supplement. Has anyone tried this type of product? Just thought I'd ask... http://www.healthheadlines.com/article/content/fb_lgid=1956&fb_lpid=5814&fb_itid=9136188&pid=100&fb_itid2=8195&nid=27&aff_id=bridgeguypose_ii&sub_id=rad_srv_3

Good luck, fingers xed, looking forward to the update.

That is awesome. I know some people with chronic illnesses (like MS) have cured themselves through juicing. Not sure that would work for POTS since many of us benefit from salt. Rama is right. My stomach could not take that. Even if I have vegetable based soups for a couple of days that kills me. I have had moderate benefit fom greens pills and wheatgrass pills. I'm sure fresh veggies are much better.