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New diagnosis, need direction?


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Hi.  I'm so excited to have found this forum!  We finally have some answers and I"m hoping you guys can make suggestions to us.

The history (if you don't want to read the history, the question is toward the bottom):

My 17 yr old daughter has just been diagnosed with POTS after a 5 year search for her odd and scary symptoms.  At 12 she fainted twice (months apart) after jumping up and racing up the stairs to tell me something.  Her GP referred her to a neurologist.  That doc gave her an MRI and did other tests, scratched his head and said b/c he ruled everything else out, she was a migraine patient.  :/  I very much doubted that diagnosis, but other neuro-type stuff was happening so I wasn't sure.  She has also had a life-long wheat allergy that also causes neuro stuff if she's not careful so I just observed her and followed the docs recommendations.  From the age of 12-14 strange things happened a few times a year...one episode left her unable to use her left side, including her tongue, mouth and eyesight, for an hour.  She also didn't recognize us for that hour.  Then it reversed completely.  Scariest hour of my life.  She was fully scanned and checked and found to be completely and totally healthy.  Healthier than most teens, her doc said :/  No resolution, no follow up.

At 14 she started having these scary episodes that starts with a very "off" feeling, followed by a severe hot flash, extreme dizziness and sometimes fainting feeling (although she's not fainted since she was 12).  They are not always followed by changing position or getting up from a seated or lying down position, either.  If the episode is severe enough, her adrenaline shoots up high and she becomes very inconsolable emotionally and might even have panic.  There are other POTS symptoms, but after an episode, she is left like a ragdoll with fatigue.  If it is not that bad, she carries on with her day.   When these started at age 14, they were coming several a week.  I  have always been big on drinking lots of water and noticed when I insisted she drink a half gallon of water a day she felt better, tho this did not go away completely.  We are now down to around 4 episodes a year.  This year she had 3 minor episodes, but this last Saturday she had the worse one yet.  

At 14 I started taking her to more specialists as well as journaling each episode.  Even thur extensive journaling, there was no pattern found by me or doctors.  Another neurologist did a full seizure study on her, with EEGs and other tests.  She said it was all inconclusive and to watch her, don't let her swim or shower without some type of supervision.  An endocrinologist said she wasn't a hormone patient (even tho he missed that she had Hashimoto's).  A naturopathic hormone/female doctor found that she had Hashimotos but has helped that go into remission.  Otherwise, she said she was a normal teen. 

From the very FIRST episode I insisted to my husband and mother that she was a heart patient.  My gut just nagged at me about her heart (not realizing it actually might be a blood issue).  I waited a long time for her to see a ped cardiologist BUT he listened to her chest/heart in his office and declared she was not a heart patient.  Before seeing him, she had her wisdom teeth out and during that consultation I mentioned to the surgeon that she had these weird episodes and wondered if he wanted me to wait for the heart workup before taking her teeth out.  He sat straight up in his chair and said, "That sounds dysautonmia...I know nothing about it except my nephew was just diagnosed. "  He wrote it down on a piece of paper and I looked into it.  I thought it sounded close to her problem and later mentioned it to that cardiologist at her appt.  He talked a little about it but I felt like he swept it under the rug.  He said if I was still concerned to come back for a echocardiogram since leaky valves and prolapses are in my husband's family history.  I felt strongly like I should have pushed the cardiologist harder for that testing THEN!??   but I just left and went with his suggestions.  

We then moved across the country this year and a couple weeks ago she had a small cluster of light episodes again.  They were so light I only found out about them later in the week.  I told my husband I was taking her back to a cardiologist and insisting on more intensive testing.  I had to go to her general doc (a brand new doc for us) for the referral.  He reviewed our complaint then came into the room and wouldn't you know, he asked, "Have you ever heard of POTS?"  We shook our head NO and he said, "That's odd, b/c the notes from the cardiologist you saw last year said he had an extensive conversation with you about POTS specifically and informed you that this is what she had".  We were in disbelief,....we had never heard of it!  That first cardiologist did NOT mention it!   This GP is now sending us to a new cardiologist for an official diagnosis.  I knew it all along!  She needed a heart doctor!  And being able to search on POTS has yielded FAR FAR more helpful info that just 'dysautonomia' itself.

That was last week and I have been reading a lot about it since then and I feel strongly that this FINALLY the correct diagnosis.  3 days after the DX she the MOST severe episode she's ever had and b/c I had read so much about it, I immediately salt loaded her and hydrated her heavily.  Then, for her panic, we did breathing exercises.  The episode reversed within a much shorter period of time than normal, which told me we were indeed on the right track!  She was still left with extreme fatigue and brain fog.  

******************************************

My question for you guys is this...........  

When she wakens, she immediately drinks a few teaspoons of sole water in an 8 oz glass of water.  Next, she works on a quart of filtered water until she leaves for school.  I send her to school with a quart of water to drink during the day.  Since the salt worked so well to shorten her episode, I'm looking for a simple way to get her some salt/electrolytes to (hopefully) shorten any episodes that might happen at school so she can self-manage like we did during her last episode.  Sending a sole mixture to either keep in her backpack or in the office seems too messy.  I've been looking into oral solutions like the Banana Bag https://www.bananabagdrink.com/  or Hydrolyte http://www.hydralyte.com, Salt Stick capsules or Vitassium http://saltstick.com/ others?   I know each has different ingredients. 

My goal is to help her slow or shorten an episode while at school or work like we did this weekend, and maybe, if it's recommended, I would give her something like this a couple times a week just to keep her salt/potassium/electrolytes more level?  This is so new to us, I'm not quite sure.

Experiences or suggestion about these or similar products?  Or advice to a POTS newbie?

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I buy pedialyte powder packets and mix one into every single bottle of water I drink. If it's not pedialyte, it's a mixture of half Gatorade, half water, and a little added salt. For me, it means  the electrolytes don't just relieve symptoms, but can also work to prevent them. Plain water makes things a lot worse for me, because my body doesn't retain it and it flushes out my electrolytes rather quickly.

There's a lot of electrolyte options, and I've heard really good things about the banana bag oral solutions. I just prefer the convenience of simpler things like pedialyte or Gatorade that I can find in my regular grocery store. Many of the options will have the similar effects though, as they're all going to provide necessary electrolytes to stabilize POTS symptoms.

Has your doctor discussed compression socks with you? They weren't life changing for me, but I definitely noticed some improvement in blood flow and recovering from symptoms quicker when I'm wearing them. 

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If she has a dx of POTS, have they looked at putting her on florinef or do you not want her on meds? Florinef helps your body retain fluids and helped me tremendously and it is commonly used to treat POTS. Might be a good question for your doctor. They may have a reason it is contraindicated in her case. Or the doc could have been like my first doc..... 'it is just POTS.' No meds because it is no big deal.

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Welcome to the forum.  It might be useful for you to review this and discuss with her doctor, if she is still not feeling well on extra fluids and salt:

https://www.dinet.org/content/information-resources/pots/pots-what-helps-r100/

There are a lot of treatment options available.  It can be trial and error to find what works best for each patient.  Hope she feels better soon.

 

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21 hours ago, vepa said:

I buy pedialyte powder packets and mix one into every single bottle of water I drink. If it's not pedialyte, it's a mixture of half Gatorade, half water, and a little added salt. For me, it means  the electrolytes don't just relieve symptoms, but can also work to prevent them. Plain water makes things a lot worse for me, because my body doesn't retain it and it flushes out my electrolytes rather quickly.

This is exactly what I'm hoping will happen with her..........hoping to find some things that help to prevent the episodes as much as possible.  Thank you for the suggestions.

Has your doctor discussed compression socks with you? They weren't life changing for me, but I definitely noticed some improvement in blood flow and recovering from symptoms quicker when I'm wearing them.   I'm going to buy some of these for her.  She JUST got a job as a cashier at a grocery store, and so far her systems are so spread out that she hasn't had an issue while working, but I'd like her to wear the socks anyway as a preventative measure.  My first job was a cashier and I just wore them to keep my legs from getting tired but she will need them for her issue, I think.

I

 

20 hours ago, haugr said:

 

19 hours ago, KiminOrlando said:

If she has a dx of POTS, have they looked at putting her on florinef or do you not want her on meds? Florinef helps your body retain fluids and helped me tremendously and it is commonly used to treat POTS. Might be a good question for your doctor. They may have a reason it is contraindicated in her case. Or the doc could have been like my first doc..... 'it is just POTS.' No meds because it is no big deal.

We discussed meds in the future but b/c her she has around 4 episodes a year, for now we are concentrating trying to find other ways to prevent them.  If she starts having more frequent issues, we will probably have that conversation again.

2 hours ago, MomtoGiuliana said:

Welcome to the forum.  It might be useful for you to review this and discuss with her doctor, if she is still not feeling well on extra fluids and salt:

https://www.dinet.org/content/information-resources/pots/pots-what-helps-r100/

There are a lot of treatment options available.  It can be trial and error to find what works best for each patient.  Hope she feels better soon.

 

Thank you for the link.  I need to spend a little more time looking at the links and files.  :)

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