Lenna

Hi, My son is in high school but is trying to take a math course at a local college (math seems to be the only subject that still comes easily to him). We want the college to give him the same type of accommodations that he gets in high school. They asked for a letter from his doctor, and it took me weeks to get the doctor to begrudgingly write the letter. Now the college has some follow-up questions and I know that I'll never get the doctor to write another letter. I'm hoping that I can just point to some reputable websites for the answers they're seeking. The biggest misunderstanding that the college has is that people with POTS are symptomatic only when they're standing up. They want to know why he can't just take the class SITTING DOWN? All the websites I've looked through - even the Dinet site - makes it sound that way. The Dinet description of POTS starts out with: this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. I need to find a concise article that I can print out or a website that I can point to that focuses less on the tachycardia when standing and focuses more on all the other stuff that happens all the time. Does anyone have any suggestions? Thanks. Lenna

Hi, Thanks for the info about how your kids are getting through school. My son does have a 504 plan, has a couple of tutors and takes a couple of classes online. His school personnel are wonderful, beyond my wildest hopes. They are bending over backwards for him. But sometimes it's still impossible. English classes are IMPOSSIBLE. I try to understand why. He still does very well in math, still does well in spanish when working with a tutor, did well on his first biology test, but cannot write anymore. He can't write his English papers, he can't write his biology lab reports, etc. I suggested to him that we try to arrange oral presentations instead of written ones, and the thought of that sent him into a panic. He just can't seem to organize his thoughts anymore. His school has really given him bare-bone English assignments in order to pass the classes (he owes 2 English classes now) but he hasn't made a dent in them. Then, of course, the other problem is that when he has a crash, he can go for a couple of weeks without doing school work at all. And then he's hopelessly behind. It breaks my heart. This is a kid who was MIT bound. His friends are all freshmen in college this year while Dan still struggles to get through Junior Enlish. But you all know this for yourselves...

Hello all, It's so heartbreaking being the parent of a child who is struggling. You've said it all; there isn't much I can add. I do have a question for PotsMom. You said that your son can't participate in formal schooling because he tires so easily. So what are you doing about your son's education? My son did not graduate from high school last June. Now he's in his 5th year of high school and I doubt that he will graduate this year either. It has nothing to do with intelligence. In fact, he's incredibly smart. It has to do with mental and physical fatigue. A home bound program wouldn't help because when he's too sick to go to school, he's too sick to study at home. So how do these kids get an education?

Initially my son couldn't take them because they made him feel nauseous. Now he takes 2 with lunch and 2 with dinner. The trick for him was to start out slowly. He took one per day for a week, then one per meal for a week, and so on. Unfortunately, he doesn't really feel the benefit, but it makes his doctor happy.

My son tried it last winter. I too was very excited about it. He started slowly...and within about a week it made him very sick. It really ramped his POTS symptoms into high gear. Everyone with POTS is different. I don't mean to discourage anyone from trying LDN. My son is someone who has not been helped by Midodrine, Mestinon, Florinef, etc. so maybe he isn't a good litmus test for LDN. I had to shop around a lot until I found a doctor who would prescribe it for my son. I'm curious as to why your doctor felt that LDN will work for you. Please share that information with us. Good luck! Lenna

John, Just wondering if you're still using Niteworks, and whether you feel that it's helping you at all. Lenna

My son would not be able to function without domperidone. It has made a huge difference for him in controlling his nausea. He's been on it for a couple of years. I too was initially concerned about it not being FDA approved. I spoke at length about it with the pharmacist who compounds it for him. He assured me that it is a political issue between the company that manufactures domperidone and the FDA. In Europe, domperidone is an over-the-counter drug. I don't know if the domperidone worsens any of Dan's other symptoms - dizziness or fatigue - but it's worth it to bring down the nausea. Good luck.

My son was always underweight, but then lost more weight when he got POTS. He eventually gained it back but is still woefully thin. His doctor put him on Periactin to improve his appetite, but it only helped a bit. He might double the dose eventually.

My son just got a prescription for Adderall XR, but his pharmacy said that it is contra-indicated with Prilosec, which he also takes. Does anyone here take both? Does it cause a problem for you?

You might want to try Carnation Instant Breakfast instead of the Nesquik. It still full of sugar and other bad stuff, but there's also lots of vitamins and good stuff. Just a thought...

That's interesting; my son is about to start taking Adderall, and has been warned that it will probably increase his tachycardia.

My son has been taking it for the past 6 nights. Can't say that there is a huge improvement in his symptoms - yet - but only that he has had more good days than bad since he started it. That could just be a coincidence, or not. We'll see. Like John, I'll keep you posted.

What I'm hearing from all of you is that you feel better while you're on the antibiotics, but go back to your baseline once you're off them? Is that right?

Hi TXPOTS- Just a couple of questions about your experiment- Did you take anything along with the L-arginine? For example, did you also take L-citrulline? Did your doctor tell you that a 2-week trial was sufficient time? Did you feel worse, or just not better? Thanks- Lenna

John, I cannot believe the timing of your post!! I have done extensive reading during the last few weeks about Nitric Oxide and it's potential role in POTS. The reason I got interested in the topic is that my son had Kawasaki Disease when he was nine years old. I thought he had a speedy and complete recovery from it, and his cardiologist has repeatedly said that there is no connection between Kawasaki at age nine and POTS at age 15. Then a few weeks ago I discovered that Kawasaki Disease can damage the endothelial cells in the blood vessels, which in turn can lead to a deficiency in Nitric Oxide. This in turn can lead to constricted blood vessels. I believe that my son has constricted blood vessels rather than floppy or dilated blood vessels that is more common with POTS. Midodrine and other vasoconstrictors made him feel worse. He seems to have symptoms of low-flow POTS. Dr. Julian Stewart of NY Medical Center has done some studies regarding the connection of endothelial damage with low-flow POTS. He concluded after his 2005 study that there is a connection; in 2007 he reversed himself to say that it is nueronal, not endothelial nitric oxide that is a factor in low-flow POTS. I recently got in touch with Dr. Stewart about my son and asked his opinion on whether Dan's Kawasaki history and possible endothelial damage might have caused or contributed to POTS. Dr. Stewart replied that he does not know, but that it is "interesting speculation". At least he didn't tell me that I'm crazy! (It also took him about 30 seconds to answer my email; my son's doctors often can't be bothered answering them at all.) Next I read - and reread - the book "NO More Heart Disease" by Dr. Louis Ignarro. Dr. Ignarro was given the Nobel Prize for his discoveries of the benefits of Nitric Oxide. It's a very easy-to-read-and-understand book that I was able to find at the local library. It's also on Amazon. For people who have POTS, I think it's important to understand that Nitric Oxide will dilate your blood vessels. If your problem is that your blood vessels are not constricting, I don't think that Nitric Oxide is your answer. Dr. Ignarro has received lots of flak for teaming up with Herbalife to create Niteworks, a product designed to help the body produce Nitric Oxide. It's like he's supposed to be above earning money now that he won the Nobel Prize. (I understand that part of the problem was that he pushed the product without revealing his financial investments, or something like that. OK, that wasn't cool.) My son is seeing a new homeopathic doctor tomorrow, so we can pick his brain about all this, and I am pretty confident that I will be ordering Niteworks for him right after that. The alternative to Niteworks is to buy the separate supplements - L-Arginine, L-Citrulline, Vitamins C, E, Folic Acid and Alpha Lipoic Acid. Dr. Ignarro's book is very detailed on the dosages. But it would be an awful lot of pills to take and my son agrees that drinking an 8 oz. drink at bedtime would be much easier. John, In his book, Dr. Ignarro states clearly that the dosages are very important, and taking smaller dosages than those he recommends (and that you would find in Niteworks) will not provide any benefit. It's all or none, so taking a half-dose of Niteworks might just be a waste of time and money. Please keep us (me) posted on your experience with Niteworks, and I will do the same. And if you haven't read Dr. Ignarro's book, you should. Lenna

Smart Water has electrolytes; Trader Joe's and Whole Foods (365) have water with electrolytes; I'm sure there are other brands too. That's what my son drinks. Too much sugar in Gartorade. One note: the electrolyte water does not have a substantial amount of sodium.

My son had Kawasaki Disease when he was nine years old, and began having POTS symptoms at age 15. Just wondering if anyone else here has a history of Kawasaki. Thanks. Lenna

Thank you for your replies! I'll let you know where this leads (if anywhere...) Lenna

So, Rama, help me understand your reply. Is neuronal nitric oxide different than endothelial nitric oxide? Is one implicated in POTS but not the other? Can someone be tested for their levels of NO? Is there treatment for NO deficiencies? Thanks- Lenna

Hi Arizona Girl, Thanks for your reply. To answer your questions: Yes, my son has been diagnosed with small fiber neuropathy, based on a quantitative sensory test (QST). He hasn't had any treatment specifically tailored to that. What sort of treatments are you trying? I don't think there's a definitive answer as to whether or not Kawasaki is autoimmune. It's another one of those illnesses - like POTS - where so much is unknown. Earlier today I emailed his Kawasaki cardiologist and asked her whether the studies indicating endothelial impairment from Kawasaki Disease are valid. Her reply was: "There is no relationship between POTS and Kawasaki disease. Some research studies have found problems with endothelial function and vascular reactivity that could be relevant to future risk for atherosclerotic disease but this isn?t relevant to POTS." Am I not getting this? Isn't vascular reactivity completely relevant to POTS?? Lenna

Boy, do I need help sorting this out! When my son was nine years old, he had Kawasaki Disease. That's a really atypical age to have it, but I don't think that's relevant. He was diagnosed and treated in a timely fashion with Intravenous gamma globulin (IVIG). He bounced back quickly and has had all the required follow-up echocardiograms, which have shown no damage to his heart. Then, when he was 15 years old, he developed POTS. I spoke to the cardiologist who treated his Kawasaki Disease and to every other doctor who he's seen in the past 2-1/2 years about whether there could be a connection between the Kawasaki Disease and POTS. I mean, how could there not be? How can a kid develop 2 really strange illnesses like that in a 6 year span and not have them be related? But every doctor has said that there is no relationship, or at least none that they know about. Now I think I found the connection, but before I bring it to his POTS neurologist who already thinks I'm nuts, I'd love some input from any of you who are knowledgeable about things like nitric oxide. Please help me understand if this makes any sense. And please put this in as simple terms as possible, because sometimes I really get lost in all the medical terminology. So, what I found is that studies have been done that show that after recovery from Kawasaki Disease, there may be long-term endothelial dysfunction. One study from 1996, for example, is looking for a connection to atherogenisis, but the thing that jumped out at me is the mention of endothelial dysfunction causing abnormalities in the L-arginine/nitric oxide pathway which can lead to abnormal control of vascular tone and blood flow. http://circ.ahajournals.org/cgi/content/full/94/9/2103 Could this be a clue or the key to my son's POTS? Dan has classic symptoms - orthostatic tachycardia, dizziness, fatigue, headache (mild), insomnia, nausea, brain fog. His blood pressure is relatively stable. He drinks 3-litres of water a day but seems to always be hypovolemic. I do NOT think he has pooling in his extremities. Midodrine and Mestinon made him feel worse. Florinef didn't have much of an effect. He recently started on a BB - metropolol - which he's tolerating well but it isn't really helping him so far. I don't know if I'm making too much of this "link". And I don't know if I should be happy or upset about it. If endothelial dysfunction is his problem, can it be treated? Does this mean he's unlikely to outgrow POTS? Thanks- Lenna

My son takes licorice root tablets. If you take tablets, you need to make sure they're the type that has Glycyrrhizin.

Ernie, So happy to hear your news. For those of us who didn't follow your story, please tell us what you did that led to your progress.

My son uses Licorice Root instead of Florinef. He can't really tell if it helps him or not. The problem is that he doesn't really have any guidance about how much to take, how often, etc. so there is a bit of guesswork involved. I'm not aware about an effect on the thyroid.

My son took 12-1/2 mg. of Metropolol for four nights. It gave him insomnia and he hasn't been able to get back to his regular sleep pattern (which was never great) since stopping it 5 days ago. Has anyone else had this experience - or is it just a coincidence that he started having worse sleep issues at the same time that he started this new medication?