Christy_D

I am so sorry you are feeling terrible, for sooo long. My son has POTS and it took us 3 years to get the correct diagnosis, I can't imagine 18 years without the correct diagnosis. His symptoms escalated after a 7 inch growth spurt from the age of 13 1/2 to age 15. I would recommend you have a Tilt Table Test done. While my son was diagnosed based on his symptoms, he later had a Tilt Table done by specialists in Cleveland for further confirmation. The forum is a wealth of information. I read it daily to get information. Have you approached you doctors with this possible diagnosis and the information to back it up? (also, my son was told he had anxiety or depression or didn't want to go to school, your not alone with being told it is just anxiety. We took him to several doctors, all saying anxiety. It was a psychologist who finally said "This is not anxiety" and she researched his symptoms and got us going in the right direction)

On Sunday, my son was kicking a soccer ball back and forth with his friend. Not overdoing it, just kicking it, after 10 or 15 minutes they were done. I took his bp/hr. I could not believe how high it was. BP was like 152/100 and HR was 169! I asked him if he felt bad, and he said he didn't feel it. We tested the BP cuff on a couple other people, and the readings were normal. He paid for it the next day. On Monday, he could not get out of bed until 4:00. After doing water jogging yesterday, his stats weren't too bad. So maybe the pressure of the water helps, I guess that's why his doctor wants him to exercise in water.

We did that vicious circle of docs with my son, from the gastro -to the neuro- to the cardio referred back to the gastro who referred my son to the psychologist. Once we found the right POTS docs, we haven't taken him anywhere else. We don't use his pediatrician or anyone in town to treat him for his POTS. That has taken a lot of stress out of having to deal with this.

My son has been nauseated daily since Feb 09. We have yet to find anything to help. He has tried every over the counter anti nausea med and a ton of prescription meds. He wakes up nauseated and as the day goes on it starts to diminish. He over compensates by eating a lot in the evenings, so he has not lost any weight. He can even eat when he is somewhat nauseated(that I can't do), but it is usually when he is still laying down. So I am interested in what anyone else has to say to try. I believe I have even posted this same question in the past.

My 15 year old son experiences most of those symptoms, no vision problems and no fainting though. He was on Zoloft for awhile, but it didn't help anything. There is a lot of trial and error with medications for POTS. I keep a list of all the medications he has tried since there were so many(20+). The anti-depressents are being prescribed because they help with the symptoms, not necessarily prescribed for depression or anxiety.

Hi Tara Lynn, My son was also dismissed saying he had anxiety. His psychologist is actually the one who researched his symptoms and got us pointed in the right direction. When my sons symptoms started(they were not over night, but a gradual increase) he mainly had abdominal pain and nausea. His abdominal pain has ceased since starting Doxepin. He still has the nausea, but he is no longer curled in a ball from abdominal pain. The Doxepin also has a sedative in it, so he takes it at bedtime and it helps him sleep. This forum has been quite helpful to me, I seem to learn something new everyday. Christy

Hi Tara Lynn, My son was also dismissed saying he had anxiety. His psychologist is actually the one who researched his symptoms and got us pointed in the right direction. When my sons symptoms started(they were not over night, but a gradual increase) he mainly had abdominal pain and nausea. His abdominal pain has ceased since starting Doxepin. He still has the nausea, but he is no longer curled in a ball from abdominal pain. The Doxepin also has a sedative in it, so he takes it at bedtime and it helps him sleep. This forum has been quite helpful to me, I seem to learn something new everyday. Christy

I've read Melatonin is supposed to be avoided with autonomic dysfucntion?? I used to give it to my son until I read that on this website on 'What to Avoid'. Is it one of those things like caffeine, some it helps and some it hurts?

We have had a great experience at University Hospital in Cleveland. We see both Dr Chelimsky's. They are both very understanding, caring and have compassion. They know what the POTS patients have gone through.

My son had gone to a sleep psychologist after having a sleep study done. She said don't use the computer at least an hour before going to bed. The bright light that the computer gives off makes your brain think it is still day time and then it takes longer for the brain to start producing the melatonin that it uses to help fall asleep(something along these lines). She recommended a dim lit room reading or relaxing for at least 30 minutes before getting into bed. Also TV in bed was a big No No. Of course a lot of this is hard to follow,as there are only so many hours in a day. Sometimes the only time left in the day to get anything done on the computer is right before bed time.

My son takes fludrocortisone for his dizziness. We had to find the right dosage, but that pretty much takes care of it. Now he only gets dizzy a couple of times a day. Do you take anything for the dizziness?

When my son had the gastric emptying test done(4 hours), they wouldn't let him lay down. They told him he had to sit or stand, and he was feeling horrible at the time. It was very hard to stay upright. Plus, he hates any heat on his stomach, and the machine he had to stand in front of put off a lot of heat making him feel even sicker.

I'm sorry you don't have the support you need. I don't have POTS, but my son does. I can't imagine how he would manage without our assistance. He has gotten better than he was, but still his mornings are very rough. I can only hope that one day, your family will come to realize your plight and have more compassion. Try to focus on the positive, because when I dwell on the negative it zaps so much of my energy and I know you can't afford losing that energy. When I find a saying or quote that makes me smile or helps boost my mood, I type it up and print it out and post it on the fridge or wherever I might glance and see it to help keep my spirits up. Christy

That sounds awful, poor baby. Mack threw up too (during the TTT), but at that point- they already had 24 hours of readings. At Hopkins, they do an X-ray during recovery to ensure the proper placement of the probes. Too bad they didn't check before putting your son through that torture Christy, I have a question about something. You say your son has gastroparesis (but not small bowel dysmotility.) Yet, his doctors don't think his nausea is from his GI tract?????? Hello!!!!!! Nausea is the most common symptom of gastroparesis. I know nausea can also be a part of the migraine process- so he may be experiencing the nausea from both the gastroparesis & migraines. Out of curiosity, what meds does he take? I know it's hard to see him suffer. Hugs- Julie He takes Erythrocin(sp) twice a day. I guess because he is on the erythrocin for the gastroparesis and the small bowel works fine, (they also have done a capsule endoscopy, colonoscopy and endoscopy), they have ruled the nausea out as a GI problem. He used to experience awful migraines that would land him in the emergency room a couple of times a year, but they have stopped. They believe he might still be having them, but they are silent. Migraines run in my family-bad. We go back in July for a follow up. He has gotten better, still sick daily, but not all day and night. He is up and moving about the house around noon. The terrible thing about his gastroparesis is, his original Ped. GI doctor wouldn't even test him for it. He said "It doesn't usually happen in kids" and left it at that. Even after his POTS diagnosis and at the request from the Cleveland doctors, our St Louis GI wouldn't run it. So we went around him and the hospital accepted an order to run the test from an out of state doctor. I wrote the St Louis GI a letter how disappointed I was in his treatment of my son. I am just hoping he can return to school in the fall. He has not been since Feb 09. Even if it is just for a class or two, so he can reconnect with some friends. Christy

My son had the antroduodenal test done in March to check to see if the contractions in the intestines were in sync. They were, so that was good news that he didn't have further nerve damage in the intestines. He does have gastroparesis. After this test, they ruled out my son's nausea being GI related and have determined that it is neurological. (Possibly part of the migraine process). He did have difficulty with the duodenal test. After the placed the probe down his throat, through the stomach and into the intestines, when he was coming to-out of the anestectic- he threw up. So the next day when they went to do the test, the probe was no longer in the intestines, but just in the stomach. So we had to stay in Cleveland an extra day and repeat the whole procedure. The second time, they gave him extra anti nausea medicine so he didn't throw up, so the probe stayed in place.

I monitored my son's daily for over 2 months and found that his was all over the place. And sometimes when his heart rate and bp had a signficant change from lying to standing, I would think he would be really symptomatic that day-but sometimes he was feeling great that day. It made no sense as to when his symptoms were worse or better.

While we were searching for my sons diagnosis, I completely trusted doctors. They were supposed to be so smart. Each time they told me they had it figured out, I was like finally-Yeah. But each time turned out wrong. Then when they couldn't figure it out, "Well he has anxiety or he is depressed or he just doesn't want to go to school." That is when all faith in doctors went out the window. They wouldn't listen to me, I figured I knew him better than they did. One neurologist told me after my son was diagnosed that I probably knew more about it than he did. I respected him for his honesty. He was willing to help me find the doctors to help us. As for our new doctors that are treating my son, I think they are great. They are caring, they listen and have compassion. I don't necessarily think they know everything-since nobody does-but they are very knowledgeable and are not close minded.

My son was also given the "it's just anxiety" by several doctors before finding help. His main debilitating symptom is nausea. He has been nauseated daily since February 2009. He can usually get out of bed in between 12:00 and 2:00 and be able to function. We have not found a medication to help it yet. He is doing much better than he was a couple of months ago though, where he was in bed until late afternoon to early evening (sometimes not at all). Vitamin D seemed to help, but I think that might have only given him temporary relief, as he seems to be slipping back. He also deals with insomnia. His POTS medication(Doxepin) has a sedative in it, so he takes it at bed time and it helps him sleep. It has all been trial and error, from one medication to the next. As for the salt, he takes Thermatabs. His doctor put him on 4 a day to get the salt he needs.

I have neck and shoulder issues, as does my son and daughter. My son has the diagnosis of POTS, while my daughter and me have many symptoms. We all have migraines as well. Our chiropractor hit on that maybe its not the migraines that are hereditary but the neck issues that might cause the migraines that is the problem. I'm not so sure though, because my migraines can be anywhere on my head and my neck isn't necessarily hurting at the time. At the same time if my neck is killing me, a migraine is usually around the corner.

I am so sorry you had that experience! That sounds absolutely horrible. My sons TST was done at University Hospital in Cleveland and was not bad at all. The tec talked to him the whole time and my husband and I were able to stay in the room with him where he could see us. They kept asking him how he was if he could stay in for a couple of minutes more. They gradually brought the temperature up and gradually cooled him down. It was very controlled.

My son did good through his, but he is not a fainter. The same-the tech conversed with him a lot and made jokes, so it wasn't too bad. He did not take any medication for it and he had to stop his medications that he normally takes like 5 days before the test so they could get an accurate result. He said he was mainly uncomfortable and that his heels hurt.

When this whole thing started for my son he was very in shape and athletic so his resting heart rate was upper 50's low 60's, with a lower bp 110/80. Now that he is so deconditioned his resting heart rate is in the 80's and his blood pressure has gone up. When he stands up, his blood pressure goes way up. He goes from about 110/80 to 150/100. I guess that is why he isn't a fainter.

My son seems to be the odd one here. He eats even when he is slightly nauseated. He won't eat when the nausea is really bad, but other than that he is always willing to eat. Before the POTs he was very thin and extremely active. Now since he isn't active at all and still eats good, he has put on weight. He is by no means overweight(out of shape=yes) but no longer lean and thin.

It's not just adults either. My son has had to deal with his friends(he is 15) telling him he just doesn't want to go to school or that he is faking. One friend told him his teachers didn't believe him, he felt so bad that everyone thought he was faking. I spoke with his teachers, and no one thought that and neither did his other friends. This one kid was trying to make him feel like everyone was against him. It made me so mad that not only was he missing his childhood, a friend was isolating him even further from the rest of the world. He had to learn who his true friends were and limited contact with the hurtful friend.

My son took Topamax 1 1/2 years ago for about 5 months. He took is as a migraine preventative. He was in the eighth grade at the time, so the side effects he had from it were not good for a student. He had trouble formulating complete sentences, he couldn't think of simple words. He had trouble reading as well. I called his teachers and asked them to not have him read aloud to the class. He also had a tin taste in his mouth, ringing in his ears and soft drinks tasted off. He stopped having migraines immediately once he started it and has not had one since. If he was not a student still trying to learn, the side effects probably would have been tolerable. The nickname for Topamax is Dopamax, and my son completely agreed.