Lenna

We actually buy Domperidone from a compounding pharmacy in Massachusetts called America's Compounding Center. http://www.accrx.com This pharmacy was highly recommended by Dan's doctor and they've been helpful to Dan in a number of ways over the past few years. Conveniently it's located just a few miles from where I live, but they'll ship anywhere. You do need a doctor's prescription. It isn't cheap - Danny takes Domperidone 3x/day, and a month's supply costs $60. But for some reason, it works better for him than the foreign stuff we ordered (which was a lot less expensive!)

Was the other medication Domperidone? That was a miracle drug for my son.

Thanks for your replies. I'll let you know how it goes for Danny.

My son's doctor is referring him for a sleep study. Dan's POTS symptoms have become much milder during the past year (he was determined to have "low flow" POTS and was put on Losartan - ) but his sleep quality is still very poor. Melatonin has drastically improved his insomnia, but he still wakes up exhausted after 10 hours of sleep. He starts to shake off the fatigue around noon. He's off to college in the fall, and I'm concerned that sleep issues will be a huge obstacle. I know that many people on this forum have had sleep studies, but I don't know if their sleep quality improved afterwards. What kinds of diagnoses were made (apnea?) and what kinds of treatments were prescribed? And have those treatments helped? Please share your stories. Thanks. Lenna

Domperidone has been a godsend for my son.

Oh Christy, I'm so sorry to hear that. There are no easy answers....

Wow, I wish I had known of this program when Danny was younger. It might have made a huge difference for him when he was struggling to get through high school. I'm So glad for you and your son that it was helpful to him.

Todd, my son has been taking Losartan for the past year or so (actually, he is on the non-generic Cozaar, which seems to give him much more relief from his POTS symptoms than the generic Losartan.) He has low-flow POTS and this is the first medication that has helped him at all. It was pushing his bp too low, so he is on a bit of Florinef too. It has helped his brain fog tremendously, and has helped his energy somewhat. He is able to do some exercising now and has been able to put together college applications - something he would NEVER have been able to do a year ago. He still has a ways to go in his recovery and we're searching for the next therapeutic step, but overall Cozaar has been a lifesaver for him.

Jenna, can you give me some idea of the cost of two weeks worth of sessions with the doctor?

My son complains a lot about pain in his kidneys. It comes and goes but lately it's been worse than usual. Does anyone else deal with this? (He has low-flow POTS, has low blood volume, has normal-to-low blood pressure). He is on Losarten and Florinef, but the kidney pain began before he started taking those meds. Should he see a nephrologist? Thanks!

All of the POTS meds made my son feel worse. After 3 years, his doctor finally determined that he has low-flow POTS, which means that his vessels are vasoconstricted, not vasodilated. No wonder the POTS meds were making him feel worse - they were constricting his blood vessels even more. He now takes Losarten which is a vasodilator. It hasn't been a cure for him, but he is much better. POTS is not a one-size-fits-all illness. If your doctor thinks it is,then you need to find a different doctor.

Well, maybe that explains why my son did so poorly with LDN, because we have since learned that he does not have enough nitric oxide.

Hi Annaliese, You know, it was a couple of years ago and I don't remember specifics. (there have been so many things that Dan has tried, it's sometimes hard to keep it all straight!) I think it just magnified his POTS symptoms. I remember that he started taking it during Christmas school vacation, and I was so hopeful that it would help him improve his school attendance but instead it made everything worse. I don't want to discourage anyone from trying this med!! I wish it had worked for Danny and I hope that it will work for others. But I shared his experience just to let people know that it doesn't work for everyone so keep your expectations realistic until you've given it a shot.

I read a lot about LDN a few years ago and really hoped it would help my son. I BEGGED a doctor to prescribe it for Dan. He took it for a few weeks and it made all his POTS symptoms so much worse. It took quite a while to get back to his baseline. So it's not for everyone but I think it could be helpful for some.

My son, who has low-flow POTS but is not hyperPOTS, is being tested for endothelial dysfunction. He had a biopsy done over a year ago as part of a clinical study looking at the effect of NO on POTS, and I've gotten the docs to agree to take a look at the endothelial cells in the biopsy. We've been waiting quite a while for the results, but hopefully will have them soon. I'll post here if I learn anything relevant. BTW, he has an NO deficiency and has been taking Losarten for the past 10 months or so to boost up the levels and dilate his blood vessels. He is not "cured" but is so much better. He pretty much missed grades 10-12 of high school, but is now applying to college with the expectation and hope of being a successful student, perhaps on a reduced class schedule.

You can get Domperidone at compounding pharmacies in the U.S. if you have a prescription. My son gets his at a place called America's Compounding Center in Newton, MA. They will ship it to you if you are not local. He takes 10 mg.3x/day and a month's supply costs $60. I think it would be the same cost for 20 mg. They base it on how many pills they're dispensing. Hope this helps.

Strange...my son (who has low-flow POTS) has slightly HIGH albumin (5.7)...and the doctor told us that it is a sign of dehydration. Of course, he drinks 2-3 liters of water a day, so it's pretty hard to imagine that he's dehydrated!

Nope, have never kept it in the fridge.

Issie, it really is a balancing act, isn't it! Dan is very underweight and lost a lot more weight when he developed POTS. He tried everything else for the nausea (except Reglan...I heard too many horror stories about that). Domperidone was the only thing that helped. A while back he tried cutting back from 3 pills to 2 in the hopes of relieving some of his fatigue, but the nausea returned. However, you've got me thinking about this again...he hasn't tried to cut back on Domperidone since starting Losarten. Now may be a good time to experiment a bit.

When he first got sick 4 years ago, the dizziness and nausea were very bad. About 8 months into it, he started taking Domperidone for nausea and he still takes it 3 times/day. I think that nausea and dizziness are minor problems for him now although they occasionally flare up; his biggest problem now is fatigue and lack of energy. He's seen improvements since starting Losarten but the fatigue still plagues him, especially in the morning hours.

He came pretty close to passing out during the tilt table test. He's never passed out before.

Hi Issie, I might have gotten my letters mixed up. It's L-NMMA. It's also known as L-NG-monomethyl Arginine citrate

He took part in a clinical study at Beth Israel Deaconess Hospital during the summer of 2010. Most of the participants had too much NO. Dan did not have enough. If I remember right, they do a bunch of tests, and then repeat them while using something called L-MNNA which temporarily shuts down NO production. Depending on how the body reacts to the cessation of NO, they can tell if the body has too much or not enough. I'm know that I'm oversimplifying this!! I don't know why they don't use this as a routine test when constriction/dilation is in question, but they don't. At least, I don't think they do.

I believe that my son falls under Dr. Julius Stewart's classification of "low flow POTS". It's been extremely helpful to him to have this clarification, because for 3 years he was given vasoconstrictors by various doctors, all of which made him feel worse. Now we know why, and have been able to target his treatment more appropriately.

Dan's blood pressure was typically in the normal range until he started taking Losarten; then it started getting too low which was a problem for him. The Florinef does seem to balance things out for him. Lately I keep noticing some pink in his cheeks...haven't seen that in 4 years!