Lenna

Hi Julie, Yes, Danny tried erythromycin; it didn't do much for him. Gaining weight would actually be a great thing! Dan is almost 6' tall and weighs about 120 lbs. Seriously underweight. I'm not thrilled about trying domperidone, but we're not getting a handle on the nausea. We'll see how it goes. Thanks.

For those of you who are taking domperidone, I have a few questions: 1) Does it help with your nausea? 2) Does it help with constipation? 3) Have you had any side effects? 4) What is your dose and what times of day do you take it? 5) Did you have to build up on the dose gradually, or did you start on a full dose? 6) How long before it kicks in? Do you know within a day or two that it's helping (or not) or do you have to stick with it for awhile? My son's Dr. wants him to give it a try. I just want to check on YOUR experiences first. Thanks. Lenna

You all may already know about this, because I haven't been logging in to the forum lately. But in case you missed it, there was a radio blog program earlier this week about POTS. You can still listen to it. Click Here

Patricia, My niece has had similar symptoms - chest pain, anxiety and a POUNDING heart beat. She was told by numerous doctors that these episodes were panic attacks but it turns out that she has tumors on her adrenal glands - hence the feeling of surging adrenaline. The tumors are called pheochromocytomas. Ninety percent of the time these tumors are benign and can be removed lapriscopically. Because my niece's situation went undiagnosed (or shall we say MISdiagnosed) for years, her situation is much more complicated now. I think that your symptoms could be indicative of many different things, but I felt that I had to let you know about this possibility as well. It may be worthwhile to see an endocrinologist. -Lenna

Well, my neice Lauren has golf-ball size tumors on both her adrenal glands. She is very very sick; in Intensive Care. The doctors are trying to bring down her blood pressure and heart rate enough to operate, but have been unable to get in under control over the past 3 days. At best, she'll lose both her adrenal glands; at worst, the tumors are malignant and may have even spread beyond her adrenals, or her condition may worsen before they can operate. She has been going to doctors with her symptoms for years and was always brushed off as an anxious person who is having panic attacks. Of course she was anxious - large amounts of adrenaline were surging through her for years because of these tumors. If someone has taken her seriously along the way, the tumors could have been caught before they became a life-threatening problem. Please pray for her.

Not yet, although I think a halter is being planned. After years of being told she's just too stressed, her doctor finally picked up some abnormalities when he did an EKG during an episode. She's being referred to a cardiologist, but I keep encouraging her mom to set up an appointment with someone familiar with disautonomias.

Hi, My 19 year old neice is having symptoms which include tachycardia, chest pains, headaches (sometimes) and vomiting. Her doctors have been calling this panic attacks but I believe it's some sort of dysautonomia, especially since her first cousin (my son) has POTS. Does this sound like PSVT? I've been doing some Internet searching of PSVT, but I don't see anything about vomiting. Thanks. Lenna

I agree wholeheartedly that there are a lot of people out there who prey on the vulnerable, and you have to be very very careful about which bandwagon you jump onto. But I also know that medical science is in its infancy. Can you remember how things like acupuncture and chiropractors used to be scorned and the patients who used those techniques were ridiculed or warned of its dangers by their doctors. Radiation? Chemotherapy? At one point they were not mainstream treatments. Remove gluten from your diet? I'll bet there was a lot of skepticism about the necessity of that not too long ago. I don't know much about electrodermal screening and I'm not defending or criticizing its use, but I encourage anyone who has not been helped by tradtional medical science to investigate other options. Talk, read, research, ask questions. I KNOW that Integrative Manual Therapy has given my son his life back while traditional POTS treatments did not help at all. The timing was not a coincidence and his recovery has lasted long enough for me to be certain that it isn't just power of suggestion. There are a lot of holisitic approaches out there and some of them might help some of you. Just as you shouldn't jump into something with both feet unless you're really comfortable with the practictioner's credentials, turning your back on a technique because it's not mainstream can be equally harmful to your life. I don't mean to sound preachy! It's just that my son missed the entire school year because he was so sick and I never imagined that I would rely on holistic treatments to help him overcome POTS, but every morning when he goes off to his counselor's job, and then bikes to his friends' houses after work, I thank God that someone on this forum encouraged me to give Integrative Manual Therapy a try. Lenna

I've heard about this. My son has a holistic therapist (Integrative Manual Therapist) who has talked about something called EFPX, which sounds very similar to what you're describing. My son has never tried it but has gotten so much better under the care of the Integrative Manual Therapist. I think that "peeling off the layers of paint" is exactly how she would describe her work with my son. I know it all sounds very wacko to people, and unfortunately insurance has not covered our Integrative Manual Therapy costs, but sometimes you have to go outside of the mainstream if the mainstream isn't working. I started out very skeptically, and now I'm just grateful we tried it. Thanks for letting us know about your experience. -Lenna

My son has always had very achy joints - ankles, shoulders, elbows... He has POTS, and recently saw a geneticist to see if he has EDS. He doesn't, thank goodness! But we have no firm explanantion for his achy body. He has a holistic physical therapist who gave us a talk just yesterday about how too much gluten can cause this kind of problem. I'm going to try and help him reduce the gluten in his diet and we'll see if it helps.

Hi Jesse, I was wondering how old you were when you developed POTS, because my understanding is that the younger you are, the better your prognosis for recovery. I guess that assumes that your POTS isn't caused by some other chronic disorder. My 16 year old son developed POTS 10 months ago. The first 6 months were horrible, but for the past 4 months he has been slowly getting better. He is about 50% of the way back to normal; it's not great, but it's a lot better than it was last winter!!! I'm happy to hear that you think you're improving, and you have my best wishes for even more progress. -Lenna

Thanks for your replies. He really feels like he was wheezing; maybe he does have asthma. Anyway, the good news is that although it led to a full blown POTS episode, he felt better within an hour. Four months ago it would have taken him a week to recover! Your replies helped. Thanks. -Lenna

My teenage son has POTS but has been feeling pretty good lately. Today he was riding his bike and called me to say he was really sick and needed to be picked up. When I got there, he was sitting at the side of the road. He said he had been wheezing - couldn't get enough oxygen into his lungs, and that led to a full POTS episode. By the time I got there, his breathing was normal but he was sweating profusely and was very lightheaded, etc. Even before my son developed POTS, there were several times he had mentioned that he thinks he has exercise-induced asthma because he occasionally can't get enough air in during aerobic exercise. Obviously, we'll let his doctor know about this, but in the meantime I'm wondering if this is just part of POTS. I know that hyperventilation is a common symptom, but at the risk of sounding stupid, I don't really know what that means. What does it feel like to hyperventilate? Does it feel like you can't get enough air into your lungs? Does it make you wheeze? Lenna

Hi, My 16 year old son was told by his POTS specialist to take a total of 6 tablets/day - 2 at each meal. He said to start slowly and build up to that dose. Unfortunately, my son has lots of GI issues and the salt tablets were too hard for him to tolerate, even at the low beginning dose. Once we get the GI stuff under control, we'll try again with the salt. Good luck. -Lenna

One other thing I thought of that might help your daughter a little bit - if she's getting sick when she's eating, divide her meals into 3 portions, and have her eat each portion an hour apart. She should be eating small frequent meals so that she doesn't overwhelm her digestive system. Where are you from? Do you have any major hospitals near you? You can try calling and asking if they have any specialists who deal with the autonomic nervous system. Let people on this forum know where you live, and you may get some advice about which doctors to contact.

Hi Alli40, Your daughter's symptoms are almost identical to my 16 year old son's. He has every single symptom you mentioned. At first we thought his problems were originating in his inner ear, then we thought he had Migraine Associated Vertigo. We were very fortunate that it only took 2 months to finally figure out what was really going on. He has been diagnosed as having POTS by 2 different doctors. One was a cardiologist and the other was a neurologist. Both performed tests called Tilt Table Tests which confirmed the diagnosis. I've been in your shoes. There is nothing worse in the world than having a sick child. You need to find a doctor who is familiar with POTS and can perform the diagnostic tests. In the meantime, there are a few things you can do that might help your daugther a little bit. She needs to be drinking 2-3 liters of water each day. Mineral water or water with electrolytes would be even better. (If you have a Whole Foods near you, try the "365 Mineral Water" - either sparkling or still. A lot of people will tell you that she should be drinking Gatorade, because she also needs a lot of salt which Gatorade has, but I believe that the sugar in Gatorade will be detrimental to her, and it's better to get the salt in other ways. Feed her as much salty food as you can. The increased salt and water will increase her blood volume and help it circulate throughout her body. Decrease the sugar in her diet as much as you can. Get her to eat as much green leafy vegetables as you can. The other thing that is very important is that she get some exercise every day. The first couple of months my son was sick, he was never off the couch. That just made him worse. His body got totally deconditioned. When he walked, it looked like he was dragging a load of bricks behind him. And he had to run his hand along a wall to balance himself. But when he finally saw the right doctor who said he had to walk every day, he started building up his strength a bit. We walked outside every day, very slowly, starting with just a couple of blocks. Gradually he ws able to build up and go further and faster. The more your daughter works the muscles in her legs, the more effectively they'll be able to pump her blood. Of course, you don't want her to do too much; that will just make her feel worse. Just start very slowly and build up. My son had a huge problem with insomnia. Regardless of how tired he was, he couldn't sleep. He couldn't fall asleep until about 1AM, and then he kept waking up all night. Of course, he was exhausted and barely ever made it to school. These days, he takes 6 mg. of Melatonin about a half hour before bed. (We starting with 3 mg. and worked up slowly to 6 mg.) He doesn't eat any chocolate (caffeine) after dinner, and doesn't eat anything at all after 8 PM. The theory behind this is that his digestive system is very sluggish from POTS, and if he eats in the evening, his system is digesting well into the night. This is one of the reasons he couldn't sleep. I also get him up at the same time every morning, and he isn't allowed to nap in the afternoon. He's been sleeping much better lately since we started all these steps. My son is much much better than he was last fall. I don't mean to make it sound easy. It was a year from ****. He missed so much school that he couldn't get any credits in most of his courses. He was depressed, and I was depressed. He lost weight and is still nauseous a lot. He didn't see his friends for a long time. However, at this point he is not taking any medications. He is on natural supplements (Magnesium, CoQ10 and Omega 3 Fish Oil) and he has weekly sessions with a holistic physical therapist (it's called Integrative Manual Therapy). He still has all of his symptoms but the intensity has decreased. He is active again and I can't keep up with him when we walk the dog. He is working part-time at a day camp. He goes out with his friends. He still has a long way to go before he's back to normal, but I finally feel like he's on the road to recovery. You have one advantage. You know that your daughter got POTS as a result of her surgery. We don't know why my son got POTS and he's still going through so many tests to figure out what triggered it. We've had him evaluated for Ehlers-Danlos Syndrome, he's getting his thyroid checked tomorrow...the testing never seems to end. I hope I've helped a little. I do agree with you that your daughter has POTS, and you'll get a lot of support from this forum. Have hope. You can send me a private message if you want. Lenna

I wish they would do that in Massachusetts! My son's high school begins at 7:30; he has to catch the school bus at 7:00.

I think that one of the most frustrating things about POTS is that there is nothing that works for everyone, and nothing that works for no one. Everyone has to experiment with different strategies to see what works for them. I know that forcing a person with POTS to wake up at a certain time each morning can potentially have devastating effects on them. It would have been impossible for my son to get up at 8AM every day last fall or winter. But he's been a bit better for the last 2 months or so, and it is within his realm of possiblity now. We're starting out slowly... For a week I woke him up at 9AM every day, then 8:45 every day for a week, and now we're at about 8:30. It still takes him about 1/2 hour to get himself out of bed, and another hour or two before he's ready to start the day. But that means he's starting his day at 10 or 10:30 instead of noon, so we're making progress. It also means he's able to eat a little earlier in the day, so breakfast has become a word in our vocabulary once again. There have been a few days when he just could not get up, and I let him sleep an hour longer on those days. He also gets to sleep until 10 on Saturdays. The goal, of course, is to get to school earlier next fall. This may be working for my son because we're addressing some of his digestive issues. The thought is that if he's digesting more effeciently, his digestive system isn't keeping him up all night. He's falling asleep more easily at bedtime (still using Melatonin) which may be attributable to his digestive improvements, or may be attributable to getting up earlier. Or maybe to something else entirely...who knows.

Mary, My local drugstore ordered it for my son; it just took a few days. Walmart will also order ThermoTabs salt tablets if you request it. My son just started taking them last week. I don't know if you have nausea issues, but if you do, start slowly with tablets and build up over several weeks. At least, that's what my son's doctor said. And MAKE SURE you take them with meals. Lenna

Aquadiva, Oh my goodness, can I relate! My son is a high school sophomore and developed POTS in September, just a few weeks after the school year began. He felt so sick for the first 5 months. He withdrew from a couple of his classes and his wonderful school team rearranged his schedule so he didn't have to be in school in the mornings. He arranged to complete 2 subjects independently at home, and needed to be in school for 2 more. Well, it didn't work out great. He didn't make it often enough to the 2 afternoon classes and won't get credit for them. He was only able to do one subject at home. So the upshot is, he'll only get a grade and credit for one class. Dan had a 504 plan; I don't know how much different that is than an IEP. The school offered a home tutor, but because Dan was sick so much, the tutor wasn't really the issue. The issue was whether or not he could concentrate. The one thing we would have liked would have been to have his classes videotaped. The school refused and we didn't fight their ruling. If Dan is not in school full time next year, we will fight for that. With videotapes, he could catch up when he feels better, like in the evenings. I hope your daughter's high school staff is helpful and supportive. Dan's is, and it makes all the difference. Try to develop a great relationship with the guidance counselor. Danny is a little bit better these days and I'm hoping that the next school year isn't the disaster that this year was. If you want to send me a private message, I'll be happy to get into more detail about it all. Good luck! Lenna

My son saw a new POTS doctor today. We discussed Dan's insomnia, among many other things. He was okay with Danny taking Melatonin (which helps a little, but not much) but said that under no circumstances would he ever put Danny on something like Ambien or other sleep aids. I guess he feels that they would be more distruptive to Danny's system in the long run. We didn't specifically talk about Xanax, but I bet that it would be on his list of things NOT to do. This new doctor is insistent that Danny wake up and gets out of bed by 8AM every day, regardless of how much sleep he's had during the night. I think it's going to be very difficult, if not impossible, for Dan to do that, but I also know that this is something we need to try, even if it means the whole day is ruined until he adjusts. Dan could not go to school in the mornings this year because of his sleep issues. He will be a high school junior next fall and cannot have another year like this past one. This is not the first doctor who has told Danny that he needs to reset his rhythms. This doctor has a lot of experience with POTS, so we'll give his advice a try. Lenna

I apologize and agree that I shouldn't have posted this. I'm not sure how to remove the post. Lenna

sorry...removing this post.

You do not have to have a drop in blood pressure to have POTS. You must have an increased heart rate 0f 30+ bpm when standing to "qualify" for POTS. My son's blood pressure either remains stable, or goes up a bit when he stands. His heart rate goes up 40-50 bpm. He has definitely been diagnosed with POTS. But you should always check with your doctor to be sure, because if there's one thing I've learned from this forum, it's that POTS is different for everyone. Lenna

My son initially took 50 mg./day and got a HUGE increase in energy. It lasted a few weeks, then he crashed and he hasn't ever gotten back to that energy level. His neurologist is a great believer in CoQ10 and now has my son taking 300 mg./day. It might be helping his energy somewhat, but not as much as we'd like. Still, I don't think he's had any side effects or negative reactions to it.