Lenna

Dan was diagnosed as deficient in NO about a year ago. He's now taking 25 mg. of Losarten every morning to increase the NO and dilate his blood vessels, as well as .05 mg. of Florinef. He's on a bunch of other stuff that he's been on for 3 or 4 years - Domperidone for nausea, Cypro to help his appetite, melatonin to help him sleep, prilosec, miralex, probiotics and a bunch of other supplements. Since beginning the Losarten and Florinef, his energy and concentration have noticeably increased. Yes, he started riding his bike after beginning these new meds, This past summer he was riding about 8 miles 3 or 4 times a week. Now that the weather is colder, he is using a treadmill. He's been feeling better for almost 6 months now. He still struggles, especially in the mornings. But overall he is much improved.

Issie, that is the case with my son. Everything that was supposed to make him feel better actually made him feel worse. Now we know the he is deficient in nitric oxide and his vessels are too constricted. He now takes Losarten to dilate his blood vessels and he is doing so much better.

Just to quickly address the nitric oxide piece -- my son has been taking Losarten (brand name Cozaar) since last spring to boost his body's production of NO. While this has not been a miracle drug for him, it HAS helped quite a bit.

My son's physician, Dr. Roy Freeman at Beth Israel Deaconess Medical Center in Boston is doing a clinical trial of Droxidopa for POTS patients. So far my son has chosen not to participate.

Gosh, I don't know...I just know that salt and sodium are not equivalent.

I think you're confusing salt with sodium. For example, if a salt tablet is 452 mg. of sodium chloride, that equals approximately 1 gram of salt.

My son did NOT do well with LDN. I think if your POTS is autoimmune-based, you might find it helpful. Otherwise, you may not. On a personal note having nothing to do with POTS, I'd love to hear if it helps your ulcerative colitis!

My son drinks Nuun. It sounds very much like the Camelbak's Elixir.

John, lots of teens who get POTS outgrow it by their 20s. Hopefully you're in that category!

My son was put on Cozaar and Florinef a few months ago. It has been very effective for him. He has Low-Flow POTS and is vasoconstricted. The Cozaar increases his body's production of nitric oxide and dilates his blood vessels. That in turn lowers his blood pressure (which wasn't high to begin with, so that's not so good for him...) If you are vasoconstricted, Cozaar might be a great medication for you. If you are too dilated as is more common with POTS, I think that Cozaar could cause a lot of problems for you. My son's heart rate used to rise about 50 bpm when he stood up. Since starting on these meds, it now usually jumps 20-30 bmp when he stands. Progress! By the way, the generic version of Cozaar which is called Losarten is not nearly as effective for my son as the brand Cozaar.

He's taking .05 every other day.

My son's doctor put him on an every-other-day schedule. Perhaps that would work better for you.

My son took it for a while. He tolerated it pretty well, I think, although it was during a time when he was quite sick and it was hard to know if the licorice was helping, hurting, or doing nothing. The problem was that we couldn't find anyone who could advise us about how much he should take. Also, a supplement from one company IS NOT equal to the same supplement from another company, so we were just guessing as to what would be the best dose for him.

My son's doctor recently put him on Florinef and said that the best thing is to keep the dose very low. He put him on .05 every other day. I never heard of this dosing schedule before. I'm not sure it's working great for my son. The Florinef gives him mild headaches that he can tolerate, but yesterday he told me that the headaches are worse on the days that he DOESN'T take the Florinef.

There is something called nuun. It comes in tablets. You add one tab to 16 oz. of water and it dissolves - fizzes like Alka Selzter. It has loads of salt and other electrolytes. It's supposed to give you the perfect balance of water, salt and electrolytes. It comes in different flavors. My son likes the lemon/lime. It is promoted for athletes. You can buy it online or at some sports stores. My son buys it at Marathon Sports and they give him a student discount. I don,t know if that is a national chain. Anyway, it's a pleasant way for him to get some extra salt, and it doesn't have a lot of sugar like Gatorade.

I think that Florinef and salt tablets go hand-in-hand. I don't think that there's any point in taking Florinef if you're not getting large amounts of salt.

I noticed that you are a newly diagnosed celiac. Have you begun a gluten free diet? You might find that you have much more energy after a couple of months of gluten-free.

Mestinon is a vasoconstrictor. Marinol is a vasodilator. If you're helped by one of these meds, chances are that you would feel pretty lousy on the other.

If anyone has questions about LDN, a great resource is Skip's Pharmacy in FL. Skip is a wealth of information and very willing to talk to people about LDN. The phone number is 561-218-0111. When my son got his prescription from his Boston doctor, the doctor insisted that he get it compounded by Skip and no one else.

Dan started at a dose of 1.5. It was a couple of years ago and unfortunately I didn't take careful notes about what happened. I can tell you that he crashed pretty quickly. Maybe the starting dose was too high for him. We have since learned that he has low-flow POTS; maybe LDN isn't the right medication for that particular subset of POTS. Everyone is different and if you have good reason to think that LDN will help you, please don't let Dan's negative experience stop you from trying it. The only thing I would suggest is that you go slowly...start with the lowest dose possible. Good luck and please let us all know how it goes for you.

My son tried LDN for a short time for POTS. It caused a crash that took months to recover from.

My son was part of a clinical trial at Beth Israel Hospital in Boston which measured nitric oxide. It seems to be a very inexact science at this point, though they were able to determine that he is deficit in NO. They gave him L-NMMA, which blocks NO, then checked to see how his body reacted. If you're already deficient in NO, then you won't have much of a reaction to having its production temporarily blocked. If you have normal or high levels of NO, then blocking production will cause vasoconstriction and your blood pressure will shoot up. Dan's blood pressure actually fell a bit when he was given L-NMMA. Dan's angiotensin II levels were not tested. He is now taking the medication Losartan, which is an Angiotensin II receptor blocker and should raise the level of NO. While this no miracle cure, he is clearly doing better.

My son takes periactin to stimulate appetite, and he takes domperidone to help with nausea. Both meds have been very beneficial to him.

I don't want anyone to think that this is a "cure". My son has been taking 500 mg. of ascorbic acid daily for over a year now. That's the same thing as ascorbate, right? Maybe it's helping him, but not in any way that's obvious. Once again, this has not been Dan's magic bullet.

My son takes 6 mg. of Melatonin. He also takes Periactin at bedtime which was prescribed to stimulate his appetite, but it makes him drowsy as well. The combo does a pretty good job of helping him sleep, though he never wakes up feeling particularly rested.