Anyone have or heard of someone who has POTS syndrome?

[Dizneefamily+4]

Stands for Postural Orthostatic Tachycardia Syndrome. My ds12 may be going through some further diagnostic testing as he failed a blood pressure test that could be a POTS indicator.

I just wanted to see if anyone out there is familiar with it. TIA!

 

[Pea-n-Me]

Can you tell us more about what happened?

 

[diznygirl]

I've heard about it. The yellow Wiggle, Greg Page, retired from the Wiggles because of it.


http://www.gregpage.com/dysautonomia/

 

[Dizneefamily+4]

I've heard about it. The yellow Wiggle, Greg Page, retired from the Wiggles because of it.


http://www.gregpage.com/dysautonomia/

I knew that Greg retired due to health reasons, but I didn't realize it was POTS!

Here's the deal. My ds12 has had ongoing stomach issues for years. About 2 years ago, his pediatrician referred us to a pediatric gastroenterogist after exhausting all tools in his box. When we 1st started seeing her, one of the tests she did was a blood pressure test that is a POTS indicator. He failed. She put him on meds to help his stomach pain and decided that once we weaned him off these meds if the pain came back, she'd send us to another specialist to do some additional POTS testing. If the pain disappeared, she determined POTS was an unlikely diagnosis.

He had his 6 month check with her at the end of July and we decided that we'd finally start weaning him off his pain meds after our Disney trip and after he got back from a hunting trip with dh and grandpa - which is now. In the meantime, football practice started on Monday. He's been having some issues with feeling faint and dizzy, has some generalized anxiety, and of course, his stomach issues. After some serious discussion with him last night (lasting until midnight) after he was really upset about football and wanting to quit (which is FINE BY ME), he said he's been having these same "episodes" during football, during gym, etc. off and on for the past couple of years. Suddenly, I remembered what his ped. gastroenterologist said about POTS and that he may require further testing. I did some more web surfing about POTS and I think we really need to have him tested further. We have a call in to his doctor, but in the meantime, I'm doing some more armchair medicine!

 

[Pea-n-Me]

He has never fallen or near fallen down? Do his symptoms happen all the time, not just with gym or sports? Is it primarily stomach pain more so than dizziness?

There are lots of potential reasons for what he's experiencing.

As a mom (to a male athlete w past GI issues too) and longtime cardiac nurse, briefly, I'd make sure he's plenty hydrated before sports, that he was only participating in sports that he truly enjoyed, and have him learn some relaxation techniques that he could do himself on the way to practices and games to lessen anxiety. (My DS listens to music.) And if something like omeprazole helps his stomach pain, I wouldn't rush to take him off of it. I'd also make sure he's eating a good-quality yogurt at least once a day and other good food, limiting foods that seem counter-productive to good GI health (like fried foods, or junk, for example).

I don't know that I'd spend a lot of time pursuing that diagnosis before exhausting all other ways of helping him overcome the symptoms he does have, since this would be a large part of his treatment even if he did have something like POTS. Certainly if his symptoms worsen, you could go directly to a cardiologist or neurologist. Good luck.

 

[Dizneefamily+4]

He has never fallen or near fallen down? Do his symptoms happen all the time, not just with gym or sports? Is it primarily stomach pain more so than dizziness?

There are lots of potential reasons for what he's experiencing.

As a mom (to a male athlete w past GI issues too) and longtime cardiac nurse, briefly, I'd make sure he's plenty hydrated before sports, that he was only participating in sports that he truly enjoyed, and have him learn some relaxation techniques that he could do himself on the way to practices and games to lessen anxiety. (My DS listens to music.) And if something like omeprazole helps his stomach pain, I wouldn't rush to take him off of it. I'd also make sure he's eating a good-quality yogurt at least once a day and other good food, limiting foods that seem counter-productive to good GI health (like fried foods, or junk, for example).

I don't know that I'd spend a lot of time pursuing that diagnosis before exhausting all other ways of helping him overcome the symptoms he does have, since this would be a large part of his treatment even if he did have something like POTS. Certainly if his symptoms worsen, you could go directly to a cardiologist or neurologist. Good luck.

Thank you for the advice! He hasn't fallen, but he does get weak/noodle legs. He says it also happens sometimes when he's sitting and goes to get up - so not just athletics/activity related. He IS doing sports that he loves. He has always loved football - he just is now telling us that these "episodes" have been happening for the last couple of years, but he was afraid we'd make him quit football. THIS season, he's realizing that his slight stature (vs those 7th graders who've begun to sprout up and out) is possibly going to cause him to get hurt. That realization is what had him so worked up last night. He feels he has to quit and that decision is killing him - but the addition of Cross Country is easing his mind a little.

He actually takes amitriptyline for his stomach pain and has been on it for about 2 years now. That's the one that his ped gastroenterologist wants to start weaning him from. He's also a very healthy eater - which actually doesn't help his low weight issue. This kid will take a piece of fruit over a candy bar every time. He does eat yogurt and all the essential GI foods - we've been dealing with is GI issues since he was a baby. He's run the gamut of GI tests as well as other possible causes. The poor kid has been through the ringer. I'm willing to go as far as possible to make him feel better. He's simply miserable and I'm convinced he thinks that his misery is just normal. It's not and I'll keep trying to get this figured out!

Thanks again!!

 

[AmericangirlinFrance]

Me!

I am on my phone so I can't write a long reply.

But I'll come back and write my experience when I'm in front of the computer (tonight).

 

[Dizneefamily+4]

Me!

I am on my phone so I can't write a long reply.

But I'll come back and write my experience when I'm in front of the computer (tonight).

Thank you - I'll watch for it!

 

[WDWDancer]

I started having an array of symptoms around 9-10 (dizziness, tachycardia, muscle weakness) but didn't actually pass out for the first time till I was 14. We went through all different testing and doctors; POTS was pretty much unheard of in our small town. When I was 16 my mom and I went to a POTS specialist at Cleveland Clinic because my attacks were becoming more frequent and nobody could tell us what they were.

They did an array of testing and we spent 3 days meeting with doctors and testing. I was formally diagnosed with POTS and Neurocardiogenic Syncope; there is no real "cure" I was put on a cocktail of medications to try to help stabilize my symptoms. There was a lot of adjusting my medications and finally after a few years of feeling so "fog" like on the medications I decided to wean off them and try to manage with the tricks I did when I was younger.

I spent most of my 20's of the medications and was feeling pretty much symptom free of POTS. Unfortunately for me it has returned with a vengeance during my pregnancy.

There are a lot of great support groups out there if it is POTS. Let me know if you'd like any of the websites. People have varying degrees of it just like anything else; for me there were scary times but I've adjusted and feel like I can pretty much do anything any other 27 yr old can.

 

[Abbie]

My niece has (had?) this, seems to have thankfully at 22 "outgrown" it for the most part. We also have a family friend whose 17 year old has been fighting this for a couple years. She also seems to be getting past it, so I don't know if it's something more likely to strike teens and get better as they grow or if that is just our experience. I do remember the importance of staying hydrated at all times.

You are ahead of the game if you already know it's a possibility! It took a LOT of testing for both my niece and our friend's daughter to get a definitive diagnosis. Good luck, hope you can pin a name to whatever he's got going on and he finds relief soon!

 

[Dizneefamily+4]

I started having an array of symptoms around 9-10 (dizziness, tachycardia, muscle weakness) but didn't actually pass out for the first time till I was 14. We went through all different testing and doctors; POTS was pretty much unheard of in our small town. When I was 16 my mom and I went to a POTS specialist at Cleveland Clinic because my attacks were becoming more frequent and nobody could tell us what they were.

They did an array of testing and we spent 3 days meeting with doctors and testing. I was formally diagnosed with POTS and Neurocardiogenic Syncope; there is no real "cure" I was put on a cocktail of medications to try to help stabilize my symptoms. There was a lot of adjusting my medications and finally after a few years of feeling so "fog" like on the medications I decided to wean off them and try to manage with the tricks I did when I was younger.

I spent most of my 20's of the medications and was feeling pretty much symptom free of POTS. Unfortunately for me it has returned with a vengeance during my pregnancy.

There are a lot of great support groups out there if it is POTS. Let me know if you'd like any of the websites. People have varying degrees of it just like anything else; for me there were scary times but I've adjusted and feel like I can pretty much do anything any other 27 yr old can.

That would be great if you could share those websites. I'm so sorry your symptoms have come back! I hope they subside once again after your pregnancy.

 

[Dizneefamily+4]

My niece has (had?) this, seems to have thankfully at 22 "outgrown" it for the most part. We also have a family friend whose 17 year old has been fighting this for a couple years. She also seems to be getting past it, so I don't know if it's something more likely to strike teens and get better as they grow or if that is just our experience. I do remember the importance of staying hydrated at all times.

You are ahead of the game if you already know it's a possibility! It took a LOT of testing for both my niece and our friend's daughter to get a definitive diagnosis. Good luck, hope you can pin a name to whatever he's got going on and he finds relief soon!

We've been told about keeping him hydrated and to slightly increase his salt intake. The pediatric GI doc he sees is at Children's Hospital in Milwaukee - 2 hours away. She's amazing and the one who brought up POTS as a possibility. We'll be seeing another specialist if necessary, but I'm glad that she's looking outside the box for us.

 

[AmericangirlinFrance]

Hey, back here to talk about my experience.

I have been "officially" diagnosed with neurocardiogenic syncope and dysautonomia, and "unofficially" with POTS. POTS/neurocardiogenic syncope are related, anyway.

Whew, where to begin. Basically, I got really sick about a year ago with major GI symptoms. Nausea, vomiting, no appetite, abdominal pain. I ended up having my gallbladder out, but my issues continued. I was diagnosed with gastroparesis and severe functional constipation - basically, a test showed that all parts of my GI tract work way too slowly. I have been treated medically for this with different medications, and I'm doing okay.

But I have had another set of symptoms related to my blood pressure. For years, I have felt woozy, lightheaded, pounding palpitations, and my vision blacking or graying out often when I stand up from laying or sitting down. These symptoms got a lot worse in the past year. My primary care dr noticed that I had orthostatic hypotension in her office. My BP dropped about 15 points from sitting to standing.

I started seeing a new GI doctor who is a real researcher. I happened to mention my low BP symptoms to him. He is the first person who suggested the diagnosis of dysautonomia to me. Basically, it is when your automatic nervous system, which controls functions like blood pressure, digestion, bladder and bowel issues, etc. malfunctions. He said he thinks my GI symptoms/gastroparesis are related to a larger autonomic dysfunction.

My GI sent me to have a tilt table test to "formally" diagnose me. I "failed" the tilt table test (or it was "positive", I guess). For this test, you are strapped on a table laying flat, and then tilted up to a standing position. You "stand" there for a certain amount of time (20-30 mins, maybe). My BP dropped and my heartrate increased upon standing, but then adjusted. But after about 15 minutes, I experienced "neurocardiogenic syncope" - my blood pressure bottomed out to 50/20, my heart rate went way down, and I passed out.

Anyway, the result of all this is that now I'm being treated for this dysautonomia. I am about to start 2 new meds. One is midodrine, which is to increase BP. One is an SSRI antidepressant, Celexa. The SSRI sounds crazy, but apparently it has been used successfully to treat dysautonomia. It has something to do with the serotonin receptors in the brain.

I'm a bit nervous about starting new meds, but I guess it's worth a try. My GI and cardiologist both seem to think after 3-6 months of therapy, I may be able to go off the meds and still have improvement.

It really sucks though! I have felt bad for a long time and it's tough. I think this syndrome is common in adolescents and children, and they have better chances to spontaneously recover. I'm 27, for what it's worth.

Good luck to your son!

Edited to add: I'm also supposed to really push fluids and salt.

 

[katiee37]

One of my friends was diagnosed with POTS a few years back after going through a period of a few months where she was passing out on an almost weekly basis. Even if she was feeling fine (although having a headache was often an indicator it was about to happen) if she stood up too fast, she was passed out on the ground immediately. She would feel dizzy beforehand and could sometimes warn someone right before she passed out but not always. She wasn't diagnosed right away because of the length of time she would be out for (we're talking 45 minutes+ of being unconscious, although heart and breathing rates were relatively fine the entire time) and they thought it might be a side effect of birth control or another kind of medication she was taking, but they eventually ruled that out.

She used to play softball and only passed out once while playing during the ordeal. Once it happened though she was advised not to play anymore until they got her medication figured out (once she diagnosed it still took a while to find the right combination of meds that prevented her from passing out.) She's thriving now and I don't believe she's passed out at all this past year.

Good luck to you and your son, OP!

 

[kinntj]

I have a friend who posts on Facebook updates on her daughter who was diagnosed with POTS. She finally got a diagnosis this year when she went to the Cleveland Children's clinic. It was quite a drive for her, but well worth it for the diagnosis. She is 11 years old.

They tried gluten free and anything she could think of to get rid of her DD's pain. Her latest post said that increasing her sodium has helped her be pain free for 9 days. She also gave a disclaimer that this doesn't work for all, but it's worked for her dd. I'm so happy for them that she is getting better.

I wish the same for your son.

 

[Dizneefamily+4]

Hey, back here to talk about my experience.

I have been "officially" diagnosed with neurocardiogenic syncope and dysautonomia, and "unofficially" with POTS. POTS/neurocardiogenic syncope are related, anyway.

Whew, where to begin. Basically, I got really sick about a year ago with major GI symptoms. Nausea, vomiting, no appetite, abdominal pain. I ended up having my gallbladder out, but my issues continued. I was diagnosed with gastroparesis and severe functional constipation - basically, a test showed that all parts of my GI tract work way too slowly. I have been treated medically for this with different medications, and I'm doing okay.

But I have had another set of symptoms related to my blood pressure. For years, I have felt woozy, lightheaded, pounding palpitations, and my vision blacking or graying out often when I stand up from laying or sitting down. These symptoms got a lot worse in the past year. My primary care dr noticed that I had orthostatic hypotension in her office. My BP dropped about 15 points from sitting to standing.

I started seeing a new GI doctor who is a real researcher. I happened to mention my low BP symptoms to him. He is the first person who suggested the diagnosis of dysautonomia to me. Basically, it is when your automatic nervous system, which controls functions like blood pressure, digestion, bladder and bowel issues, etc. malfunctions. He said he thinks my GI symptoms/gastroparesis are related to a larger autonomic dysfunction.

My GI sent me to have a tilt table test to "formally" diagnose me. I "failed" the tilt table test (or it was "positive", I guess). For this test, you are strapped on a table laying flat, and then tilted up to a standing position. You "stand" there for a certain amount of time (20-30 mins, maybe). My BP dropped and my heartrate increased upon standing, but then adjusted. But after about 15 minutes, I experienced "neurocardiogenic syncope" - my blood pressure bottomed out to 50/20, my heart rate went way down, and I passed out.

Anyway, the result of all this is that now I'm being treated for this dysautonomia. I am about to start 2 new meds. One is midodrine, which is to increase BP. One is an SSRI antidepressant, Celexa. The SSRI sounds crazy, but apparently it has been used successfully to treat dysautonomia. It has something to do with the serotonin receptors in the brain.

I'm a bit nervous about starting new meds, but I guess it's worth a try. My GI and cardiologist both seem to think after 3-6 months of therapy, I may be able to go off the meds and still have improvement.

It really sucks though! I have felt bad for a long time and it's tough. I think this syndrome is common in adolescents and children, and they have better chances to spontaneously recover. I'm 27, for what it's worth.

Good luck to your son!

Edited to add: I'm also supposed to really push fluids and salt.

Thank you so much for sharing your story. It's a lot if the same symptoms my ds has. We were told about the tilt table test for diagnostics. My ds was actually put on a very low dose of celexa as well a few months ago for some generalized anxiety which I believe is very much related to all of his pain/discomfort/weakness issues.

Again, thank you for sharing and we'll continue pushing forward to find a solution!

 

[Dizneefamily+4]

One of my friends was diagnosed with POTS a few years back after going through a period of a few months where she was passing out on an almost weekly basis. Even if she was feeling fine (although having a headache was often an indicator it was about to happen) if she stood up too fast, she was passed out on the ground immediately. She would feel dizzy beforehand and could sometimes warn someone right before she passed out but not always. She wasn't diagnosed right away because of the length of time she would be out for (we're talking 45 minutes+ of being unconscious, although heart and breathing rates were relatively fine the entire time) and they thought it might be a side effect of birth control or another kind of medication she was taking, but they eventually ruled that out.

She used to play softball and only passed out once while playing during the ordeal. Once it happened though she was advised not to play anymore until they got her medication figured out (once she diagnosed it still took a while to find the right combination of meds that prevented her from passing out.) She's thriving now and I don't believe she's passed out at all this past year.

Good luck to you and your son, OP!

Thank you for sharing too! I love the DisBoards!

 

[anelson81993]

Stands for Postural Orthostatic Tachycardia Syndrome. My ds12 may be going through some further diagnostic testing as he failed a blood pressure test that could be a POTS indicator.

I just wanted to see if anyone out there is familiar with it. TIA!

Yes! A good friend of mine has POTS, in addition to her congenital heart defects. She's 19, and in college when she's able to attend and her symptoms are under control. The tilt table test is a must. So is insisting that your son's doctor considers POTS as a possible diagnosis--a lot of medical professionals are highly undereducated about this particular condition, and you'd be surprised about the number who don't believe it exists. While armchair medicine gets a bad reputation, in these types of cases it can really be helpful (my mom actually diagnosed one of my heart defects through armchair medicine well before my medical team thought to consider it). POTS is hard to live with, but the more you know the better it can be.

Also, my friend blogs about living with POTS. Here is the link: http://thetachylife.blogspot.com/

 

[Dizneefamily+4]

Yes! A good friend of mine has POTS, in addition to her congenital heart defects. She's 19, and in college when she's able to attend and her symptoms are under control. The tilt table test is a must. So is insisting that your son's doctor considers POTS as a possible diagnosis--a lot of medical professionals are highly undereducated about this particular condition, and you'd be surprised about the number who don't believe it exists. While armchair medicine gets a bad reputation, in these types of cases it can really be helpful (my mom actually diagnosed one of my heart defects through armchair medicine well before my medical team thought to consider it). POTS is hard to live with, but the more you know the better it can be.

Also, my friend blogs about living with POTS. Here is the link: http://thetachylife.blogspot.com/

Thank you!