Lenna

Sorry, my son tried it a couple of years ago and felt that it did nothing for him. Fortunately I was able to get my money back. I would recommend that you be sure of the return policies before you buy it.

My son feels somewhat better when he takes Ibuprofen. I think it makes him less dizzy.

Hi, My 18 year old son, who has POTS, began taking ibuprofen 3 times a day for some unrelated pain, and all of a sudden his POTS symptoms improved a bit. He stayed on Advil for a few days, then stopped. Within a couple of days his POTS symptoms got worse again. Restarted the Advil and his symptoms improved again! Mostly his dizziness seems better. When I mentioned this to his doctor yesterday, he wasn't surprised to hear it. He said that ibuprofen can act as a vasoconstrictor and can also help with the hypovolemia. He said that Dan can take one or two 200mg. pills per day without worrying about hurting his stomach. My son also uses a homeopathic anti-inflammatory called traumeel. http://heelusa.com/Products/ProductDetail....BLET%20100%20CT It does not have the same gastric side-effects that ibuprofen has. Dan has taken that on some days instead of the ibuprofen and that, too, seems to work for him. I don't really understand why since it's not an NSAID. Regardless, he plans to take 400 mg. of advil once a day, and 1 traumeel pill every day and we'll monitor how he feels. I'm thrilled that we may have found something that helps a little bit. I'm also furious that the doctor never suggested trying it even though he was aware that it could help!

Kayjay, I'll find out if my niece was getting winded. I think that what lieze said was also true for my niece - she was sick sometimes and fine at other times. She would have heart palpitations, chest pains, elevated blood pressure, nausea. Every doctor who saw her said that it was in her head. She had episodes that came and went for her entire life until she was 19 years old. Then the episodes starting happening more and more frequently, until she got to a point where the blood pressure stayed dangerously high and she couldn't stop vomiting. At that point, finally, she was diagnosed and rushed to the hospital. But by that time, they couldn't get the blood pressure under control. For 3 weeks she was in the hospital dying and they couldn't perform the surgery because of the high blood pressure, then got to a point where they had to take a chance and do it anyway. And thank goodness, she did great. That was about 18 months ago and she has been fine (of course, she's on tons of hormones). By the way, she was diagnosed not just with pheos (which were HUGE) but with Multiple Endocrine Neoplasia which caused the pheos....very very rare! So, the weird thing for us is that she had pheos and my son (her first cousin) has POTS. My niece's type of Multiple Endocrine Neoplasia is hereditary. Yet my son had the genetic test which showed that he doesn't have Multiple Endocrine Neoplasia, has had a negative CT and an MRI of his adrenal glands, had the 24-hour urine test, and there is no indication that he has pheos. He really doesn't have the symptoms she had. He has a more classic case of orthostatic tachycardia (and everything that goes along with it). But it's a weird coincidence.

My niece had pheos. In addition to palpatations and feelings of anxiety, she had sky-high blood pressure. Or at least, it was high by the time she was diagnosed. Which took years and years. She was literally dying by the time she was diagnosed. She had tumors on her adrenal glands, thyroid and parathyroid, and her entire endocrine system was removed, but she is doing great now.

Which kind of magnesium does your doctor have you take for digestive issues? Is it magnesium oxide?

My son has taken it every day for at least a year. No side effects that we're aware of...of course, the kid suffers from a great many problems, so how do you know what is attributable to what? But he recently did an experiment where he took it every other day for a couple of weeks, to see if a smaller dose would be somehow beneficial. He did not notice a lessening of POTS symptoms, but he did gradually begin getting constipated, so he's back to every day.

One thing that my son has in common with your daughter is, if he's too sick to go to school, he's too sick to do work at home as well. We tried home tutors the first year he was sick and we had to keep canceling at the last minute. It just didn't work. Online courses are great for him because he can log in whenever he's feeling up to it. My son has a 504 plan. Next year he hopes to take one or two classes at a nearby college to supplement what he's doing in high school and online. I need to find out if they will give allow him the same accommodations that his 504 plan requires. Aquadiva, how flexible are the college professors in dealing with your daughter's challenges? Do they give her extra time for assignments, any special accommodations with test-taking, etc.?

I have to say that my son slept with his bed raised for a year or so. We put lifts underneath the bed at the head of the bed, so the entire bed was sloped. We never knew for sure if it helped him or not, but we do know that it ruined his nice (and expensive) mattress. He no longer sleeps with his bed raised, and the mattress sags like crazy in the middle.

Ditto all the above sentiments. It's been 2 1/2 years for my son. His friends are all graduating from high school this year and going off to college. They are dating and driving and partying and studying and looking forward to the rest of their lives. My son is struggling to get through 2 or 3 high school classes each year and has no social life. I try to keep a positive attitude about his future, but frankly the unknown scares me to death. He does not share his private thoughts and fears, and I can only imagine what goes through his head. Brenda, please know that I'm thinking of you and Liz. Email me if you want to chat. Lenna

I'm so sorry about everything that is happening to your son. My son is now 18 and it breaks my heart that his teenage/high school years have been lost and can never be regained, so I understand how you feel. But on to a practical solution...instead of trying to get permission to bring Gatorade on the plane, get some Nuun. Nuun comes in tablets that dissolve when dropped into water, so you can get bottled water from the flight attendant and then just drop a tablet into it. It's such a handy thing to have when you travel, and it has about twice as much sodium as gatorade. My son like the lemon/lime flavor. The challenge will be finding a place to buy it. You can order it online http://www.nuun.com. They also sell it at REI. I think there are some REI stores in VA. Good luck and have a great trip! Lenna

Does the clonodine make dizziness any better or worse?

Hi Jess, Just wondering how you're doing with the Low Dose Naltrexone? Are you sticking with it? -Lenna

My son was taking a brand called Designs for Health. It's not a drugstore brand...we bought it from the doctor's office.

My son's doctor recently told him to take magnesium glycinate. Told him to take 300 mg. AM and 300 mg. PM. Shortly after that my son CRASHED. I haven't seen him look that bad in a while. Maybe it was too much too fast. My son has stopped taking the mag, but will restart next week, gradually - he'll add 150 mg. per week to his regimen. He is so sensitive to everything.

There are so many different types of Magnesium...what kind do you take?

Michael, I'm so glad you posted because you'll get lots of support and some really good information from this site. There are lots of parents of teenagers with POTS here. I'm wondering if you've ever been in touch with any kids your age who have some form of dysautonomia? There is a site that focuses on kids with dysautonomia - www.dynakids.com. You need to know that you are not alone; there are other kids who will understand what you're going through and might have some good advice about how to cope. We're all pulling for you, Michael!

Julie, You made my day! Thank you for sharing Mack's great news. Lenna p.s. today is Danny's 18th birthday. It's very bittersweet.

Jess, Just wondering, what kind of doctor are you seeing that prescribed LDN? I had a very hard time finding a doctor that would prescribe it for Danny. Both his neurologist and pediatrician were unfamiliar with it. He was finally referred to a doctor who practices "functional" or "intergrational" medicine - the combination of traditional and holistic medicine.

A "POTS flare" is a good way to describe it. That's what happened to my son as well. I'm not convinced that stopping the LDN was the right thing to do at that point, but it was his decision to make. Please keep us updated, Jess, on how it goes for you. Good luck with it! Lenna

You may have seen my post on another thread - my son took low dose naltrexone for two weeks and it made him feel horrible. I don't know what would have happened had he stuck with it, but he wasn't willing to continue with it.

Yes, I do believe that the endorphins modulate the immune system. This is from the lowdosenaltrexone.org site: In general, in people with diseases that are partially or largely triggered by a deficiency of endorphins (including cancer and autoimmune diseases), or are accelerated by a deficiency of endorphins (such as HIV/AIDS), restoration of the body's normal production of endorphins is the major therapeutic action of LDN. dsdmom, my son has not been diagnosed with CFS...that's not to say he doesn't have it. Given the possibility of CFS, I thought it was worth a shot to try LDN. His doctors feel that he has post-viral POTS, though I'm not clear on exactly what virus they're referring to. It makes my head spin! Right now we're doing a lot of adrenal testing. He has 2 tiny (8 mm) adrenal nodules that showed up on an abdominal CT scan; though it is unlikely that they're causing his problems, we need to know for sure. He's scheduled for an MRI with contrast and lots of blood work.

Julie, Sorry I didn't respond earlier, but I think that Erik gave you a good explanation. In a nutshell, low dose naltrexone is thought to stimulate endorphin production, and endorphins are thought to help regulate the immune system. So autoimmune diseases, like MS and Chronic Fatigue Syndrome, respond well to LDN. As Erik pointed out, the main benefit is a decrease in fatigue. Some cases of POTS overlap with CFS and may have an autoimmune component so my thinking was that if this is true for Dan, maybe LDN would help him. I'm not sure we gave it a good enough trial, but Dan wants nothing to do with it now because it really made him feel worse. So if anyone else tries it and has success, I'd love to hear about it. Lenna

sugartwin, how did your doctor test for hypovolemia? No one has ever given my son any tests to determine whether he has it or not, although they say that he does have it.

Jane, What kind of doctor ordered the test? Did the doctor feel that there is a link between your hormone levels and dysautonomia? What treatment or further tests did (s)he recommend?