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Clairebun

What to expect - new to this

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My daughter 19 was diagnosed this week with POTS. Brought on with a sinus infection.

BP tested at rest and standing etc. She went to ER and they did lots of tests and she is healthy apart from feeling faint, headaches, chest pain and head tingling.

she is day 3 of electrolyte drinks and water. Seen some improvements (she slept last night).

how long until we should see benefits of salt?

Ive ordered Licorice root - is this ok to take.

My plan is to call the doctors and get a referral to see a specialist.

What do I need to know / watch out for?

 Thanks in advance 

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Hello @Clairebun - I am so sorry you and your daughter have to go through this. Fortunately in many cases of dysautonomia in teens it improves after a while. 

1 hour ago, Clairebun said:

how long until we should see benefits of salt?

Ive ordered Licorice root - is this ok to take.

These questions should really be directed at her physician, since members on this forum are not allowed to give medical advice. We can, however, share our experiences. 

In my case salt was always immediately effective - but often not enough. It is very important to increase both salt AND water together, since they only benefit us together. They can increase blood volume, and usually this occurs right away. 

There are several posts about licorice root on this forum, you might want to search in our search engine for them. Some people here have found relief from licorice root, however - many report that the benefit is temporary and that it stopped working after about a year. 

It is good to see an autonomic specialist but they usually have a long waiting list and often require test results prior to the visit. The most important test is the Tilt Table Test ( commonly referred to as TTT ). This test usually is the one every doctor looks for when it comes to diagnosing POTS. You can find more here

https://www.dinet.org/info/dysautonomia-disorders-diagnostics-info/autonomic-testing-for-dysautonomia-r206/

https://www.dinet.org/info/pots/pots-guide-hydration-and-pots-r150/

2 hours ago, Clairebun said:

What do I need to know / watch out for?

I assume you are asking what you need to watch for in HER? Definitely any fainting spells, palpitations, racing HR, tremors, fatigue … POTS is an orthostatic disorder, meaning the symptoms are triggered mostly when upright ( but many other triggers exist ). In most people suffering from dysautonomia a careful balance of rest and exercise helps, as well as compression hose ( helps with circulation while upright ) and - as you already know - increased salt and water. 

It is also important to remind her to get on the floor if she feels dizzy or faint, since passing out is common in some types of dysautonomia. If you check under our information resources tab you will find many helpful articles to guide you and your daughter. And under the physicians tab you can find a list of physicians treating dysautonomia patients. 

I hope this helps to clear up some of the fear and confusion that naturally comes with a dysautonomia diagnosis. Good Luck - there are many people here that are willing to help and can share their experiences. 

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21 hours ago, Clairebun said:

Ive ordered Licorice root - is this ok to take.

There are two types of licorice—one may be helpful and the other not. Sorry I can’t remember which is which but others here may know,

A specialist in Dysautonomia is be very helpful to most of us.

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It needs to be regular licorice root, not DGL:

De-glycyrrhizinated licorice (DGL) has been manufactured to avoid the side effects of licorice by removing the active compound glycyrrhizin .

that can increase BP and fluid retention, so healthy people don’t want to take that component, but it’s important for us.

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