Lenna

I don't know if my son will ever completely be rid of all his POTS symptoms, but he is much better. He developed POTS when he was 15 and he was too sick to attend high school except for an occasional class. It was a nightmare. Eventually he got his GED. I don't have to explain how heartbreaking this was. Well, at the age of 20, he is now at a prestigious university, living in a dorm and doing great. He still has fatigue and other POTS related symptoms but they're now manageable. I don't know if he's actually outgrowing POTS or if we just finally have him on a medication regimen that's working for him, but in either case, there is hope for the future and I wanted to share that with you.

I wonder how this differs from the work done by Nobel Laureate in Medicine Dr. Lou Ignarro and his product "Niteworks". My son drinks Niteworks every night before going to bed. He thinks it helps him sleep better.

What do you hope it will do for you?

My son takes domperidone for nausea (works great!) and periactin to stimulate his appetite. I was unaware that periactin could help nausea. Anyway, it does a fair job of stimulating his appetite; he would probably get a better result with double the dose but it makes him too tired.

Well, I think it at least rules out low flow POTS.

Danny is taking both Fludrocotrisone and Losartan. Losartan is the generic name; the brand name is Cozaar. I'll bet that it is available in the U.K.

Sorry, I totally disagree that it doesn't matter. When we learned that my son has low flow POTS, we understood why medications like midodrine, mestinon and adderall made him sicker. His blood vessels are already too constricted and vasoconstricting medications were making him worse. Now he is on Losartan, a vasodilator, and has improved enough that he's ready to give college a try. He was recently offered a chance to participate in a clinical trial for doxidropa; he probably would have jumped at the chance but when we found out that doxidropa is a vasoconstrictor, he knew that it was a bad idea. We still don't know WHY he has low flow POTS and I would give anything to find out, but at least he's living his life again a bit.

When my son developed POTS, the doctors assumed that he was vasodilated. So they prescribed medications that would constrict his blood vessels and all those medications made him feel worse. At the time I had no idea that there were different types of POTS. Three years later he participated in a clinical study on the effect of nitric oxide on POTS. That's when we realized that he was vasoconstricted and falls in the category of "low flow" POTS. He needs medications to dilate, not constrict his blood vessels. He had been trying all the wrong medications for 3 years. So for Dan, learning what type of POTS he had made all the difference. Unfortunately most people dont' have access to the type of testing Dan had.

Believe me, I've tried that route! Dr. Stewart is very reticent about giving out suggestions regarding Losartan. In response to my emails, he'd only say that "it has shown to be of benefit to some POTS patients" but would not discuss dosage suggestions, nor would he agree to see my son or even have a phone conversation with me. He was initially willing to do a consultation but when he learned who my son's doctor is (another researcher), his attitude completely changed. Ah well.

Issie, you're right - we met with resistance when we tried to get Dan's Ang II level measured and we don't know what it is. We do know that his renin and aldosterone were normal. Yet Losartan has been working really well for him.

That would be very very bad for my son.

It helps to keep my son's nausea under control. This medication has been very important for him.

My son has NO problem getting domperidone in the U.S. For the past 4 years he's been getting it from a compounding pharmacy called America's Compounding Center in Massachusetts. They will ship it to you. You DO need a prescription. He takes it 3 times/day and a months' supply costs $60. Here the address and phone number: America's Compounding Center 153 California Street Newton, MA 02458 (617)527-1563 (pnphone) (617)527-1565 (faxfax)

My son has been taking 25 mg. of Losartan in the mornings. He's thinking about taking adding a small dose at bedtime. He hopes this may make it easier to wake up and feel less sick in the morning. He tried this once before but there were other things going on, so it was an unsuccessful trial. For those of you who benefit from Losartan, could you please share info about the dose and the time of day that you take it? Thanks. Lenna

Brenda, I'm so sorry to hear that Liz has had this setback. I know that anger that you're talking about! I do think that as moms, we feel our kids' pain even more than they do! I try to focus on the mantra "this too shall pass." And even if it doesn't really pass, we find ways to adjust and to cope. But hopefully in Liz's case, she'll bounce back quickly and will be right back in the thick of things at school.

Issie, where do you get the empty capsules? And how do you know how much of the spice to put in?

Well, that's quite a bit more than Danny takes! Maybe he should try a larger dose. I've read some conflicting things about turmeric. While it helps some people a lot, I've read that it is a nitric oxide scavenger. That defeats the purpose of taking Losartan! Are you sure that turmeric is helping you? Just out of curiousity, what dose of Losartan are you taking? And what time of day? Dan is on 25 mg. in the morning, but he is thinking about adding a nighttime dose to see what happens.

Thanks, Jangle. I just realized that Dan is already taking 10mg/day of alpha lipoic acid in a drink called "NiteWorks" that is supposed to increase NO levels. Not sure if 10mg. is an adequate dose. Do you mind sharing how much you're taking?

Great news, Jangle! Can you tell me a bit about why you're taking the Alpha Lipoic Acid and Tumeric. My son is taking Losartan...I wonder if those supplements would help with his energy.

My son's insurance company denied the request for a sleep study - as expected. We can appeal but I know that this all can take months and still might not be successful. I'm wondering if you need to have a sleep study first in order to try a cpap machine? Do you rent cpap machines or buy them? Is there any outcome of a sleep study other than learning that you have apnea and trying a cpap machine? In the end, would it make a difference if a sleep study showed that someone has central apnea vs. obstructive apnea? Doesn't it all end in the prescription of a cpap? Thanks!

Hi, My son is going to try NuVigil to see if it makes him more alert in the morning. We got a free prescription for a few 150 mg. pills. But he is so sensitive to all meds that typically he starts with 1/4 dose of a new drug and works up slowly. I'm planning to cut the pills up into halves or quarters for the first week. Wondering if 1) anyone has actually received any benefit from NuVigil and 2) what dose was effective for you? Dan weighs about 135 lbs. Also, did it effect your appetite? Cause insomnia? Thanks! Lenna

Dido for me...I'm concerned that she is no longer posting and not receiving private messages.

Thank you so much for your replies. It really helps to hear about other people's experiences. The biggest concern is the roommate thing - Dan wakes at the drop of a pin. He goes to bed early and needs a QUIET atmosphere. It would drive a roommate nuts...how can he tell a roommate not to make sound, turn on a light, have friends over, listen to music, etc. after 10 or 11? And if Dan doesn't get enough sleep, he might be too Potsy to attend classes and do his work, especially if it's cumulative over a few days. I wish he could have his own bedroom in a suite but that just isn't an option for freshmen at his school. We're trying to arrange for a sleep study, but it's an insurance battle and it's not likely to happen soon. I wish we had started that process sooner.

This is for Julie (Mack's Mom) and for anyone else who wants to weigh in. I'm looking for loads of advice. Hi Julie, I tried to PM you but my message wouldn't go through for some reason. I hope you'll read this, and I'd also love responses from anyone else who has advice about attending college: Danny has gotten his college admissions and is deciding between 2 schools - one is just a few miles away (but he will live in the dorm) and the other is about an hour away. Obviously one of the deciding factors will be how open they are to accommodations for POTS. Before we get in touch with them, I want to assemble a comprehensive list of what we're looking for. Any suggestions? I think that Dan is really going to need a single room. He has so many sleep issues! I wish that were not the case because I think it's easier to assimilate into college life with a roommate by your side, but I just don't see that happening. What is Mack's situation? A single or a roommate? And, if he has a single, was that difficult to arrange? I think we may ask if Dan can take less than a full load of classes, at least for the first semester. And although he's typically pretty active in the afternoons and evenings these days, mornings are still impossible for him. So somehow we have to get him priority for later classes. What else should we be asking for? Any helpful tips? I'm sure there is so much more to be thinking about and I just want to do everything I can to maximize Danny's chances for success. I'd appreciate hearing about Mack's experiences this year and getting any advice from you. Thanks so much! Lenna

Domperidone has helped my son A LOT. I wouldn't consider taking Reglan. The side effects are not worth it.