POTS is not an easily searched term in a mom-centric forum!

[Carrie12345]

I know that POTS has been discussed here, though I vaguely remember most talk being about serious and complicated cases.  Unfortunately, searching turns up mostly cooking pots!

My teen got this diagnosis yesterday.  Her tachycardia, to me, seems severe, but the ped-cardio isn’t very alarmed.  Dd has never passed out or been terribly incapacitated. I probably wouldn’t have noticed any real problem if not for her work with EMTs and occasionally going to the gym with her. But now we know, and her current “treatment plan” is to basically just take better care of herself and keep an eye on things.

I keep flipping back and forth between “we’ve got this” and “this kid is going to make me sit on her and pour water down her throat at some point”.   She can be so smart and responsible some days, and then 15 on other days!

[kiwik]

I sympathise.  I am having a similar problem at the moment.  In my case the claim it is a learned behaviour - it started at 6 months 

[Tap]

22 minutes ago, Carrie12345 said:

I know that POTS has been discussed here, though I vaguely remember most talk being about serious and complicated cases.  Unfortunately, searching turns up mostly cooking pots!

My teen got this diagnosis yesterday.  Her tachycardia, to me, seems severe, but the ped-cardio isn’t very alarmed.  Dd has never passed out or been terribly incapacitated. I probably wouldn’t have noticed any real problem if not for her work with EMTs and occasionally going to the gym with her. But now we know, and her current “treatment plan” is to basically just take better care of herself and keep an eye on things.

I keep flipping back and forth between “we’ve got this” and “this kid is going to make me sit on her and pour water down her throat at some point”.   She can be so smart and responsible some days, and then 15 on other days!

Instead of POTS search Postural.  You will find several posts.  If you have any specific questions, feel free to ask here or PM me. DD20 has a fairly severe form of it. She was diagnosed a few years ago, so we have quite a bit of experience with it. 

Edited January 26, 2019 by Tap

[LMD]

My bestie has pots. She has fun in hospitals when they take her blood pressure and tell her she's dead...

Hope your dd continues to be well!

[Carrie12345]

27 minutes ago, Tap said:

Instead of POTS search Postural.  You will find several posts.  If you have any specific questions, feel free to ask here or PM me. DD20 has a fairly severe form of it. She was diagnosed a few years ago, so we have quite a bit of experience with it. 

Thank you, on both fronts!

[hippiemamato3]

We are seeing a cardiologist on February 4 because I was concerned my DS16 has this. He faints, feels short of breath, is often light-headed and dizzy. Today I got a report from a recent ER visit saying he has an enlarged right aorta and now I'm completely freaking out. Ugh.

 

[MrsRobinson]

I've been researching this myself lately. I have a history of SVT that put me in the ER twice to get IV meds to lower my heart rate. (One visit, I was 8 months pregnant and the other visit, my heart rate was so high, they brought the crash cart.) All the other numerous times, I've been able to lower it myself. 

But I think there is something more going on. I've never fainted, but I feel like I'm going to a lot. Just yesterday, in fact. Lots of shortness of breath, tingling at the extremities, and dizziness. 

What was it that sent you all in (or your kids, as the case may be) to get checked out? If you don't mind me asking... I hope this isn't a thread highjack!

Edited January 26, 2019 by MrsRobinson
Added other symptoms

[kbutton]

4 hours ago, hippiemamato3 said:

We are seeing a cardiologist on February 4 because I was concerned my DS16 has this. He faints, feels short of breath, is often light-headed and dizzy. Today I got a report from a recent ER visit saying he has an enlarged right aorta and now I'm completely freaking out. Ugh.

 

If you need someone to talk to on PM about the aortic stuff, you can PM me--there are some really good basic information sites I can help with, and depending on whether this leads to a diagnosis, I can be more specific than just the general sites. I am super glad they caught this in the ER! Enlarged aortas often do not cause symptoms for a very long time. Knowledge is power, though I know it's very worrisome and serious. Hugs.

3 hours ago, MrsRobinson said:

What was it that sent you all in (or your kids, as the case may be) to get checked out? If you don't mind me asking... I hope this isn't a thread highjack!

I've been wondering too--at what point does this become a consistent, persistent, or severe enough problem to seek a diagnosis?

[HollyDay]

also try searching dysautonomia

[melmichigan]

On 1/26/2019 at 4:48 AM, Tap said:

Instead of POTS search Postural.  You will find several posts.  If you have any specific questions, feel free to ask here or PM me. DD20 has a fairly severe form of it. She was diagnosed a few years ago, so we have quite a bit of experience with it. 

Does your DD happen to wear jobst gloves?  We are debating them, but they are expensive!  DS was diagnosed at the University of Toledo this last fall with dysautonomia, POTS, and mast cell activation disorder.

 

Edited January 29, 2019 by melmichigan

[Tap]

Never tried glvoes. 

4 hours ago, melmichigan said:

Does your DD happen to wear jobst gloves?  We are debating them, but they are expensive!  DS was diagnosed at the University of Toledo this last fall with POTS, and mast cell activation disorder.

 

Never tried gloves, sorry. Look online for compression items there are lots of websites that sell them that have sales periodically.

[Tap]

6 hours ago, kbutton said:

If you need someone to talk to on PM about the aortic stuff, you can PM me--there are some really good basic information sites I can help with, and depending on whether this leads to a diagnosis, I can be more specific than just the general sites. I am super glad they caught this in the ER! Enlarged aortas often do not cause symptoms for a very long time. Knowledge is power, though I know it's very worrisome and serious. Hugs.

I've been wondering too--at what point does this become a consistent, persistent, or severe enough problem to seek a diagnosis?

For dd it was this odd fatigue issue that would come and go. On top of that she had chronic pain that no one could understand or diagnose. Starting in middle school about every 3 months she would get a simple cold/congestion illness. She would go to bed and sleep 12-16 hours a day for a couple of weeks and then rebound and be fine again. The doctors called it mono, or a virus, or allergies..whatever they could kind correlate it to. By the time it seemed serious, she would rebound. Every time she seem to fully recover, so we believed the general PCPs in the beginning. Then after about 4-6 times over 2 years, of her having these heavy fatigue weeks, I said "a healthy pre-teen/teen doesn't have the exact same illness, so many times in a row."

One random day in middle school she fainted (this was around when her fatigue cycles started). Long story short...we went to a cardiologist to rule out anything cardio. Echo and all other tests were fine, so she was diagnosed with syncope. No biggie, only need to follow up if things got worse. 

SHe has had migraines since she was 6yo (diganosed by a neurologist at that time) and they were getting worse.

She has severe seasonal type allergies manifest in middle school and took allergy shots for years to get them under control. (now at 20 yo, she has chronic hives that last for months at a time).

Odd things started popping up. One day I asked why it took her so long to shower...that is when she told me, she would have to sit down and take a break when she was showering, because having her hands above her head so long made so tired and her arms would ache. At this same time, she had been an almost year round cheerleader for 3+ years. She swam  in an endurance class, rowed crew, played on her high school volleyball team and sailed (different times of year). She was not a weak person, so this didn't make sense.

By high school she was in severe pain. We started looking for the root of her pain and that led us down many rabbit trails. We live outside of Portland Oregon, so luckily we have access to lots of doctors. Every doctor we saw, said they believed she was in pain and that there was something wrong, but no one could figure it out. Soooo many specialists, bone scans, MRIs, xrays, CT scans, even an EMG. On a whim we went back to the same cardiologist to have her heart looked at again, (due to worsening fatigue).  At that visit he diagnosed her POTS. Luckily, the cardiologist we picked all the way back when she was in middle school, became the Only POTS specialist in Portland when she revisited him, or we would have missed her diagnosis again.  The doctor was a jerk and we never went back after her diagnosis, but that gave us a place to start and to get information.  He diagnosed her within 15 minutes, simply do to 'poor man's tilt table test' and her history. 

To give you an idea what we have been through....I totalled up the number of doctors/specialists she saw between the ages of 15 and 19yo......I stopped counting at 30. 3 of those providers were after diagnosis but the others were all part of that journey. If that helps you realize how many things we went through looking for answers before the cardiologist finally diagnosing her.  Her insurances have been billed over half a million dollars in the 5 years, but luckily we have a max out of pocket each year of $5,000 or less (having multiple insurances drop that number a bit). Our goal for 2020 is to get her to one of the major clinics (most likely Mayo) to see if we can get some new ideas.

Unfortunately, she has continued to deteriorate despite many, many treatments. She can no longer attend college (not even online classes) or work. 3 years ago, she was an honor student, worked part time and was a 2 to 3 sport athlete in high school (even with her fatigue cycles). Now, she can only be up walking about 3-4 hours a day. And she has to take breaks between those hours.  Her fatigue never stops now. She has a port implanted in her chest to help her get  a liter of IV fluids on top of drinking 80-120 oz of liquids a day. If she misses her liter, she will pretty much not be able to get out of bed the next day. She takes a handful of pills daily and lives in chronic pain. Just getting out of be takes her 30-60 minutes and she has to plan a shower like a NT person would plan a workout. Stressful events take her down for a full day (like a visit to the doctor, simple medical procedures like dental work) and she needs a day of recovery.  She goes to PT 2x every week, gets deep tissue massage/chiro and walks/swims/exercises on the alternate days.  

[Carrie12345]

16 hours ago, MrsRobinson said:

 

What was it that sent you all in (or your kids, as the case may be) to get checked out? If you don't mind me asking... I hope this isn't a thread highjack!

I had noticed that dd’s heart rate would get crazy high at the gym, so I intended to talk to her doctor the next time she went in.
Before that wound up happening, she was working on a fire dept. call and started feeling dizzy and short of breath. The EMTs (who are close friends) didn’t like her heart rate or the fact that it wasn’t coming down, so they took her to the hospital, where it still didn’t get down to a normal person’s range even hours later, with IV fluids.
As a mom, I would have followed up no matter what, but it was also a requirement for her to be able to go back to duty. She was moping for weeks. waiting for that appointment!

 

[Carrie12345]

@Tap

Do you have any parent and/or teen online recommendations?
Dd and I had a bit of a “thing” last night. She and I had spent the afternoon and evening handling food and drinks for a long emergency with the fire department. She has a full day of work (on her feet) today, so I took her home last night a little earlier than she wanted so she could get some decent rest in between. She would have been less mad at me if I had just taken away the internet.
She isn’t stupid. She fully understands that I’m trying to make sure she takes good care of herself so she can do these things she wants to do, but she is SO crappy about it right now!!!

(She does see a therapist, but her first visit since dx won’t be until next week.)

[MrsRobinson]

1 hour ago, Carrie12345 said:

The EMTs (who are close friends) didn’t like her heart rate or the fact that it wasn’t coming down, so they took her to the hospital, where it still didn’t get down to a normal person’s range even hours later, with IV fluids.

 

The bold is what happens to me. The 2nd time I was in the ER, my heart rate was sitting at 108 for a long time and I felt like normal (for me). The ER doc wanted to give me another IV push of meds and I had to convince him that was a pretty normal heart rate for me and I felt like I didn't need more meds. If I had as much experience then as I do now, I'd probably let him do it to see what happened! 😄

[Tap]

3 hours ago, Carrie12345 said:

@Tap

Do you have any parent and/or teen online recommendations?
Dd and I had a bit of a “thing” last night. She and I had spent the afternoon and evening handling food and drinks for a long emergency with the fire department. She has a full day of work (on her feet) today, so I took her home last night a little earlier than she wanted so she could get some decent rest in between. She would have been less mad at me if I had just taken away the internet.
She isn’t stupid. She fully understands that I’m trying to make sure she takes good care of herself so she can do these things she wants to do, but she is SO crappy about it right now!!!

(She does see a therapist, but her first visit since dx won’t be until next week.)

I spent the first year reading everything I could find on POTS. I got bits and pieces from many sources. Dysautonomia International has probably been the place that I find the best information. There are lots of blogs out there from POTS patients. Sometimes they are interesting to read because it is real people living with this illness. My old computer was dying so I switched over and didn't bring my old bookmarks, or I would have more ideas, sorry.  I know there is a TED talk or two online and I watch video lectures from the above link and other medical providers on youtube. Those have been some of the most interesting to me, but they can be fairly specific and may not apply to you.ie  I recently watched ones on small fiber neuropathy and GI issues.DD has always had a sensitive bowel and tended to get constipated. We figured out her triggers when she was young and didn't really thing much of it . It wasn't until her POTS got worse that we realized things had gotten much worse with her GI tract over the years and needed to see a GI doctor. She didn't realize that her experiences weren't normal, so she didn't say anything. 😞  Reading really helped me understand how all the different systems can be affected. 

For dd, the idea of spoon theory resonated with her. There are lots of websites that make it more understandable and cuter, so you can google and maybe find something that is more in depth and personal. She knows she only has a certain amount of energy a day. Even when she is feeling great, she can't over do it because that exertion will have a price the following day. I know dd understands it, so I lether decided how and when to spend her energy. DD made some bad choices when she was in school and wound up in bed, missing important events, but honestly that is a life lesson that people with chronic illness have to work through. It took dd probably a year or two to really start modifying her day around her illness, instead of just living each day as it came. One big thing we fight is deconditioning. We try to get dd up and walking, even small bits every day. We go shopping A LOT. LOL We don't even buy anything most of the time. We jokingly call it taking her for a walk( like you would take a dog for a walk). We live in the PNW, so we shop in the winter (gets dark at 530) and got to the park and walk on sunny days when we can. Honestly I don't think I ever forced dd to start or stop any activity. She made those decisions for herself. 

[kbutton]

13 hours ago, Tap said:

For dd it was this odd fatigue issue that would come and go.

I just snipped this part to have something to quote, but lots of what you are describing sounds familiar enough that it reinforces my suspicion that I have some kind of dysautonomia. However, I thought POTS was a narrow diagnosis, and the rest falls under a broad "dysautonomia" umbrella. So, for instance, does all of what she experiences stem from POTS? Are there other categories of similar things that are valid diagnostic categories? The internet has lots of different lists of possible conditions that don't all match, which is part of why I am asking these questions--somehow, people who have a diagnosis got from Point A to Point B. Is that all luck and trying a million doctors, or is there a way to get listened to?

I am asking not to be difficult but because you could list all but the most severe things in your description as something that happens to me, but I am not sure I would be labelled with POTS. I absolutely can say that my body fails to regulate all kinds of normal functions. For instance, my body temperature sometimes drops into the hypothermia range for apparently no reason. Sometimes it would happen before a migraine, but sometimes there is zero reason. I don't mention much of this to a doctor because my doctor doesn't even consider me a reliable witness to state that I have crazy fluctuations in my BP with an overall trend of higher every year--she dismissively calls it "white coat-itis." 

[Tap]

8 hours ago, kbutton said:

.....does all of what she experiences stem from POTS

snipped for clairty.

There are many conditions that are considered comorbid with POTS. (Conditions that are found in  a high percentage of POTS patients). SInce they don't really know the cause of POTS, they don't say they are caused by the same root problem, but they have a definite correlation.  Many of her health problems are worse when her POTS is worse and seem to wane a bit when she is doing better. 

[melmichigan]

On 1/27/2019 at 1:36 AM, Tap said:

Unfortunately, she has continued to deteriorate despite many, many treatments. She can no longer attend college (not even online classes) or work. 3 years ago, she was an honor student, worked part time and was a 2 to 3 sport athlete in high school (even with her fatigue cycles). Now, she can only be up walking about 3-4 hours a day. And she has to take breaks between those hours.  Her fatigue never stops now. She has a port implanted in her chest to help her get  a liter of IV fluids on top of drinking 80-120 oz of liquids a day. If she misses her liter, she will pretty much not be able to get out of bed the next day. She takes a handful of pills daily and lives in chronic pain. Just getting out of be takes her 30-60 minutes and she has to plan a shower like a NT person would plan a workout. Stressful events take her down for a full day (like a visit to the doctor, simple medical procedures like dental work) and she needs a day of recovery.  She goes to PT 2x every week, gets deep tissue massage/chiro and walks/swims/exercises on the alternate days.  

Your DD's story sounds so familiar.  We finally got somewhere with the University of Toledo. Dr. Grubb and his staff are simply amazing, but it was sad that I had to research and get us there myself.  

 

Edited January 29, 2019 by melmichigan