Lenna

Hi, I would stay away from the Gatorade. Too much sugar may be contributing to your thrist. Try mineral water or smart water. But be aware that without Gatorade, you'll have to get the sodium somewhere else. Hope that helps. Lenna

I know there are some old threads about this, but I'm hoping to get more recent feedback. Has anyone taken Ivabradine (Procoralan), and has it helped? How bad are the side effects? Thanks. Lenna

My son (diagnosed with POTS in 11/07) now has been told that he has an extremely low level of Haptoglobin. All oither blood counts taken so far have been normal. My understanding is that a low Haptoglobin count means his red blood cells are breaking down. We'll be doing further testing to find out more (like...what the heck is going on!) but I wondered if anyone else has encountered this and can shed some light. Lenna

My son's ANS doctor said the same thing as yours. -Lenna

I'm in the process of working with my son's high school to put together an IEP. He's a sophomore and hasn't been able to attend much at all this year. He was previously a straight A student. He's withdrawn from history and spanish for the rest of this year because he doesn't need 4 years of those subjects. He's doing math at home with a tutor; the tutor also works with him on chemistry at home, but my son tries to get to his class as often as possible and MUST attend the weekly labs. The English department has told him that he needs to read the 6 books that the class is reading and write reports on those 6 books, but doesn't need to attemd class. If he can fulfill those requirements, he'll get the credits for taking English. He also takes a Computer Science elective (which he loves) and tries to get to as often as he can. If he can show up for class the majority of the time, and complete a special project assigned by the teacher, then he'll get a grade. If he can't make it to class very often, he will be "medically excused" and won't get a grade or credit for the class. The school has been great about rearranging his schedule so the classes he needs to attend are in the afternoon. (He is non-functional in the morning). We're hoping to get the school to agree to videotape the classes he's missing, but I'm not sure yet if that can be worked out. Even with everything the school is offering, this isn't going to be easy. My son has no energy, is dizzy and nauseous, headachy, and has increasing brain fog. He can't concentrate on much at all anymore. But at least I'll know that we gave it a good try! Having the mornings off and withdrawing from 2 classes has taken a lot of the pressure off, and lets him get some extra sleep which is essential for him. Good luck to your friends. I hope their son's school personnel is as supportive as ours. -Lenna

For those of you who use CoQ10 to boost your energy and mental concentration, what dosage and what brand of CoQ10 do you take? My son's doctor told him that he could try CoQ10, but didn't have a dosage recommendation. This is for a 16 year old who is 120 lbs so I'm thinking of starting him on a very small dose (50 mg.) , but I'm also wondering if some brands are more reliable than others. -Lenna

Do you need a prescription for that or can it be bought OTC?

DadofPotsSon, Thanks for your reply about your son varying his medication dose. I don't know if my son is on a generic version of Midodrine or the Proamitine. I guess I could call the pharmacist to check. The label says Midodrine HCL 5 mg I/C Proamatine. It's probably the real stuff because it costs abour $2.50 per pill. Thank goodness for insurance! But anyway, the thing I particularly want to thank you for is your mention of the fact that your son is in college and drives back and forth to school. That is encouraging beyond words and has made my day! Lenna

I wonder if anyone has experienced this. My son who has POTS started on 5 mg. of Midodrine and got a great surge of energy that lasted a few days, then petered out. When we raised the dose to 10 mg. he had another day or two of great energy. At 15 mg. he felt really sick so we started cutting back. We slowly cut all the way back to 5 mg. again, and to my amazement he felt so energetic that he pulled out the snow blower to clear off the driveway when we had a storm! Again, that energy surge lasted a few days and then trickled away. I'm thinking of taking him off Midodrine entirely for a few days and then putting him back on the 5 mg. dose for a few days to see what happens. It's okay to play with the dose like that, isn't it? (I know that's a question I should ask his doctor.) I'm wondering if he just takes Midodrine during the school week and takes a break on the weekends, will it help him get to school? Any thoughts or experiences would be appreciated. Lenna

Check out http://www.dinet.org/pots_an_overview.htm. The 4th paragraph from the bottom states: The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Most patients will have to make some lifestyle adjustments to cope with this disorder. Hope that helps. Lenna

My son takes the white Florinef pills (Fludrocortisone) and there is nothing on the label to indicate that it should be stored in the frig. I just called the pharmacist and he looked it up. He said that the pills are manufactured by a company called Global, which is a division of Impaxi Labs in Philadelphia. Global's instructions are to keep the pills at a temperature between 59-86 degrees - room temp. I suggest that if anyone has questions, they should call their pharmacist. Perhaps there are variations in the manufacturing of these pills. -Lenna

Has anyone tried V8 juice? 8 oz. has 480 mg. of sodium as well as lots of potassium (good for people on Florinef). I'm not sure how good it tastes... Lenna

Wow, Manual Therapy sounds so bizzarre, but really no more bizzarre than having needles stuck all over your body, and I'm a total believer in acupuncture! But unfortunately acupuncture didn't do much for my son who has POTS. Julie, you said that your son had therapy once a week and felt great whenver he had it. Did the good effects last for the whole week? How many sessions did he have before he started getting results? In what ways did he feel better - dizziness? nausea? energy? Thanks for sharing this with us. -Lenna

My son has POTS and his doctor doesn't want him lying flat at all. He also doesn't want his head propped up with pillows. He had us put boards under the legs of the bed so that the bed is at a tilt. The head of the bed should be raised 4-12". That took a little getting used to because my son slides down towards the foot of the bed during the night. During the daytime my son is in a comfortable chair with his legs on a ottoman, or a recliner is great. The reason for all this is that the body does a better job of staying hydrated and retaining salt when the heart is higher than the legs. Personally, I also think it's too traumatic for the body to get into a standing position from a supine position and that's why you feel so much worse getting up after you've been in bed. Hope that helps. -Lenna

I don't have POTS (my son does) but when I went to Haleakala a few years ago, I got such a bad migraine as we drove up that I couldn't even get out of the car when we got to the top. I spent the entire visit to Haleakala lying in the back seat with my eyes closed.

I've read that there are no medications that are approved specifically for POTS. They're all "off label" which means that the meds used to treat POTS have been approved by the FDA to treat other conditions. That kind of thing happens all the time. -Lenna

Hi Brenda, Is your daughter still on Florinef? How's that going? My son is on .1 mg of Florinef 1x/day. My gut feeling is that it's not helping, maybe even making him worse, but I can't be sure. He seems to be dizzier since we upped the dosage from 1/2 pill to a full pill. -Lenna

That was such a helpful reply! I never looked at it that way. I do spend a lot of the day telling my son what to do -- drink, walk, drink some more, have something to eat, take your meds, etc. It must be so demoralizing for him at times. I'm going to try to lay back a little bit more. Thank you! -Lenna

Always on my quest to find new and different things that can make a difference... Do any of you who are mostly homebound worry about your lack of time in natural sunlight? My son is spending so little time outdoors. On the days he goes to school, he's outside for maybe 30 seconds while he goes from the car to the school entrance and back again later. We live in Boston where it's currently 17 degrees and the sidewalks are icy, so going for a walk just isn't an option. I guess this winter isn't really much different from past years - he's not really ever outside much on a typical winter day, but now that he's having health problems (POTS), I wonder if he has a greater need than ever for some natural light. So yesterday I made him sit on a window seat in the house that was bathed in (cool) sunlight for about 20 minutes. He grumbled and told me what a waste of time it was, but I swear he had better energy the rest of the day. I'm going to make sure he does it again today, but not every day is sunny, or he's not always home during that hour when the window seat is in the sun. Which makes me wonder about those therapy light contraptions you can get for people with seasonal affective disorder. I was just wondering if anyone has any thoughts on this. Thanks! Lenna

My son's POTS doctor also told him to try very hard to exercise daily. He suggested walking, but we're in Boston where it's more like Antartica these days (without the global warming). Fortunately we have a treadmill that my son walks on for 20 minutes when he's having a good day. He usually does about a mile in the 20 minutes, although there are days when he goes a lot slower. And some days when he's too fatigued to do it at all.

Thanks for your replies and links. I actually have read through it all (about 100 times over the last few weeks) and have spoken to my son's doctor about each of these questions, but I do agree that it's very individual (and the doctor agrees with that as well), so I'm interested in hearing about individual experiences, particularly about the Chinese Herbs. Thanks. -Lenna

Hi, My son is a teenager who has recently been diagnosed with POTS. I'm trying hard to identify what things will help or hurt, and your experiences are so valuable to me. Have any of you tried Chinese Herbs to help with your symptoms? What did you take, and was it helpful? Does caffeine help or hurt? Are your symptoms triggered by Chinese Food/MSG? Thanks! -Lenna

mkoven, What dose are you taking? My son, who has POTS, started on Midodrine two and a half weeks ago. He had goose bumps and scalp chills for a few days. Then they went away and I don't think it bothers him much anymore. He started on 5 mg. 3x/day for a week, then we upped it to 10 mg. 3x/day. He's also on .1 mg Florinef 1x/day. Initially he had a really noticeable surge of energy that lasted for a few days. Then he started feeling poorly again but when we increased the Midodrine dosage to 10 mg., he had another huge surge of energy. He may have overdone his activities at that point, because a couple of days later he CRASHED. It took 5 days, but he's starting to feel a little better again. By the way, my son's bp is stable - not much difference between supine and standing. His heartrate races when he stands. The doctor said he's not too concerned about his bp going too high with the midodrine because my son is 15 years old, and that's not so much of an issue with kids. We were just warned not to give him a dose less than 4 hours before bedtime. Hope that helps. Let's stay in touch about the Midodrine because I'd love to know how other people are doing with it. Lenna

My teenage son was diagnosed with POTS a couple of weeks ago. The doctor started him on Midodrine and Florinef at small doses but we were told to build up the doses gradually. Right now he's on 10 mg. Midodrine 3x/day and .1 mg Florinef 1x/day. The first 9 days on the meds seemed so encouraging! His side effects from the Midodrine went away after just a few days, and he had so much more energy than he's had in quite a while. He was back in school for several hours a day (major accomplishment!) and even went out with his friends one night. We were all feeling so hopeful. The he CRASHED. He has been feeling worse than ever for the past 6 days. I don't know what happened. Was the first 9 days just a placebo effect? Or is this just typical with POTS -- up and down? He hasn't been in school all week and I've gone from hopeful to hopeless. -Lenna

I've read on various websites, including Dr. Andrew Weil's website, that magnesium is a helpful supplement for people with POTS. But I don't understand how that can be. Magnesium dilates blood vessels. That's why it's effective against migraines. So how can it help people with POTS? Isn't the goal to constrict the blood vessels if you have POTS? I'm interested in hearing about anyone's experience with magnesium supplements, and any explanations (in english, not medical-ese) about why it would help. Thanks!!! -Lenna