Lenna

Hi, I've been meaning to report on my son's short trial of Low Dose Neltrexone (LDN). I wish I could tell you that it was his miracle drug, but it wasn't. After being denied a prescription for LDN by his neurologist and his pediatrician who were unfamiliar with it, we found a doctor who practices intergrational medicine - a combination of traditional and holistic medicine. He has had POTS patients in the past, and had prescribed LDN in the past, but never prescribed LDN for a POTS patient. He was skeptical but willing to give it a try. We ordered the LDN from Skips Pharmacy in Florida and Skip Lenz is a wealth of information about it. Dan started on a low dose - 1.5 mg. - with the goal of raising it to 3.0 mg. after 2 weeks. Maybe we should have started even lower, considering how sensitive Danny is to meds. Anyway, for the first 2 or 3 days he had no change. Then he started to feel much worse. All his POTS symptoms kicked up to a higher gear. The difficulty, of course, is knowing whether Dan's symptoms worsened because of the LDN or despite the LDN. But after 2 weeks, I consulted the doctor and Skip Lenz. They both recommended discontinuing. They both felt that POTS is not a disorder that would respond to LDN. If anyone else tries LDN, please let us know what you experience. Lenna

It was interesting timing to see your post. My son has been on Domperidone for over a year and it helps so much with his nausea. But I refilled his prescription yesterday and was noticing that the compounding pharmacy wrote the words "may cause dizziness" in larger letters than they had previously.It got me thinking. My son takes Domperidone as soon as he wakes up, and his morning dizziness has increased lately to the point where it's interfering with getting to school. So I was just thinking about trying to delay his first dose of Domperidone until later in the day to see if it decreases the morning dizziness. Now, after reading your post, I wonder if it might also increase his morning fatigue. On the other hand, his second dose of Domperidone is in the late afternoon, and I haven't noticed him getting more dizzy or fatigued after that dose. But it's worth experimenting, I guess.

John, Can you tell me specifically which salt tablets you're taking? The ones that my son tried are Thermotabs - each one is 180 mg. of sodium. Are you taking tablets that each have 1 gram?? If so, do they bother your stomach at all? Are they the slow-release kind? If yes, where did you get them? Thanks! Lenna

Hi, I'm going to post this under it's own heading with a lot more detail when I get a chance, but since it's popped up on this thread, I'll respond quickly here as well. My son just did a 2-week trial of LDN. He started at a dose of 1.5 mg. with the intent of working slowly up to 3 mg. However, he felt SO sick the entire 2 weeks that he was on it, he decided to stop taking it. I then called Skip Lenz who is an expert on LDN to discuss whether he thought that Dan's terrible 2 weeks might have happened because of LDN or IN SPITE of LDN. Of course he couldn't be sure, but he said either way, he did not feel that POTS is a condition that would respond to LDN. If anyone else is taking LDN and has better results, PLEASE let us know. I was so hopeful, and am so disappointed that it didn't help Danny.

I know that REI carries Nuun (do you have one of those near you?) Or you can order them online but you have to spend at least $50 to get free shipping. http://www.nuun.com/shop2/All-Products/ Or you can call their customer service and find out what stores near you carry their products. http://www.nuun.com/contact/ Good luck.

Have you tried Nuun tablets? You can find them online, or in some Sporting Goods shops (like those that specialize in running). They come in different flavors and you drop a tab into 16 oz. of water, then let it fizz for 2 minutes, then drink it. There is 360 mg. of sodium per 16 oz - same as 2 salt tablets, I think. It's got other electrolytes as well, and NO sugar. My son likes the lemon-lime flavor.

Boy, this is really making me question whether I want to ask the doctor to put Dan on Adderall. He is VERY sensitive to meds. He also has a somewhat depressed personality. Julie, I don't know if Dan is lightheaded or if the room spins. He's never been able to describe it well. But "dizziness" is definitely a symptom of POTS, and one of the most debilitating parts for him.

Hi, I've read some posts about how these drugs help with fatigue and brain fog. What about dizziness? Do they help? Or can they make dizziness worse? Lately my son has been overwhelmed with dizziness. His fatigue has always been bad but coupled with the dizziness, he is really sidelined. He has a doctor's appointment at the end of the month and I was planning to talk to him about trying adderall for the fatigue. But now I'm wondering how the ADHD drugs would affect the dizziness. Any info from you all would be very helpful. Thanks. Lenna

Please don't be upset at my post. I wasn't accusing you of anything...I just needed clarification. This is the type of product that is sold by individuals rather than in stores, and not everyone is honest about their opinions of it. I'm glad to know that you feel strongly about how good this product is.

It's so hard to know what to think when someone recommends a product like Mandura. I hope this is a sincere recommendation, and that it really has been helping you, but because it is sold by individuals who profit from the sales, I tend to regard these recommendations with skepticism. For a while I tried to sell Arbonne cosmetics, which I believe uses the same kind of "team approach" to sell. Of course I recommended the products to anyone who would listen! I wanted to sell them so I could get my small commission, and I wanted other people on my team so I could earn a profit from their sales as well. I don't mean to be such a cynic but I have to ask you, misstmpl, do you sell Mandura?

It's so hard to know what to think when someone recommends a product like Mandura. I hope this is a sincere recommendation, and that it really has been helping you, but because it is sold by individuals who profit from the sales, I tend to regard these recommendations with skepticism. For a while I tried to sell Arbonne cosmetics, which I believe uses the same kind of "team approach" to sell. Of course I recommended the products to anyone who would listen! I wanted to sell them so I could get my small commission, and I wanted other people on my team so I could earn a profit from their sales as well. I don't mean to be such a cynic but I have to ask you, misstmpl, do you sell Mandura?

Tearose, The heavy metal testing is a urine test. Danny has to take 6 pills called captomer (the amount is probably determined by his weight - he's 130 lbs.) and then collect his urine for the next 6 hours. Then we ship a bit of his urine off to some lab in Illinois.

Stupidly I didn't even think to ask why the doctor would administer the Vitamin C through an IV rather than orally. I guess I just figured it's more effective that way. Like when you get a saline IV...you get a greater volume of fluid directly into your tissues than if you were drinking water. But I will get much more detailed info before Danny starts the treatments - which won't be for a couple of months anyway.

My son just saw a new doctor. He practices "functional medicine" which bridges traditional and alternative medical treatments. At my request, he's prescribing low-dose naltrexone, though he doesn't have any strong feelings about whether this will help my son. He is going to do a lot of "outside the box" testing for a number of things, including testing for heavy metal toxicity. One thing he recommends, which he would implement in a couple of months after all the tests are cpmplete, is weekly (or twice a week...is that biweekly? I can never keep it straight) IVs of vitamin C. He says that he has seen it help POTS patients quite a bit in terms of energy and overall well-being. Has anyone heard of this or tried it?

When my son was diagnosed with POTS a couple of years ago, his POTS doctor told him to drink 2 litres of gatorade/day to get the salt he needs. (I think you're mistaken about how much sodium is in gatorade. I think it's 110 mg per 8 oz.) Several months later my son began working with holistic practitioner. She went NUTS when she heard about the gatorade. She felt that the amount of sugar he was drinking was poison for him. She switched him over to water with electrolytes, and he also drinks Endura and Nuun. He gets his salt from the food he eats.

My son was told to have at least 10 grams of salt - which is about 4 grams of sodium.

I apologize for sounding like a broken record...but I know how that nausea can wreck a kid's life! Please ask your gastro about Domperidone. It's made a world of difference for my son.

Reglan is really a bad drug with some serious potential side effects. Please research this and talk again to your son's gastro. My son's gastro suggested this as well, and when I said no, he agreed that it had potential problems (so why did he suggest it in the first place? Jeez!). Then he prescribed Domperidone, which helped enormously.

Lately my son's feet have been freezing and he can't warm them up no matter what he does. It isn't just his toes - it's the bottom of his feet as well. Does this mean the blood is pooling in his feet, or that there isn't enough blood in his feet? Does this mean he has low-flow POTS or high flow POTS? I'm still trying to get a handle on all of this. How can you tell when and where the blood is pooling?

Zofran didn't help my son either. Domperidone is the only thing that has helped his nausea.

Nausea was one of my son's primary POTS symptoms. We finally saw a gastro doctor who prescribed Domperidone. You have to have it compounded at a compounding pharmacy, or order it from another country (which is less expensive). Now I would say that while still present, nausea is one of his less severe symptoms. If only we could do something about the fatigue and dizziness!

Hi, So glad to hear that things are better for you! Can you share what things the specialist implemented or suggested that have made a difference for you?

Hi BelieverEM. I've sent you a private message looking for more info. Thanks. Lenna

Maxine mentioned on an earlier discussion that Vitamin D makes her symptoms worse. Does anyone else experience this? My son hasn't been so great lately. Now that I think about it, he's been taking Vitamin D for the last couple of months. I wonder now if that's contributing to an increase in his symptoms.

My son experiences all the things you've mentioned. Does anyone have any strategies to combat this?