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POTS ?


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Hi everyone,

 

New to the forum, happy to have found a community of people with POTS :) Some background on myself, I am currently 16 and was ‘diagnosed’ with POTS in January of 2019. This diagnosis was given by my primary after going over my symptoms and many negative cardiac, thyroid, and blood panel tests. The reason I put diagnosed in quotations is because my doctor has never seen the POTS symptoms and  therefore, hasn’t provided a definitive diagnosis. The diagnosis was given out as a reasonable conclusion and as a way to get the needed, educational accommodations.  After the diagnosis, the typical management recommendations were given of water, salt, compression socks, and a possible service dog, most of which have been ineffective (currently no SD).

 

Regarding my symptoms, every time I stand, my heart rate increases between 40-120 bpm, however, the increase typically happens within the first minute of standing and then returns to a normal standing heart rate. After another 5-15min of standing/walking, my heart rate will spike again by 20-140 bpm. Symptoms caused by my heart rate spikes/POTS include dizziness, lightheadedness, near-fainting spells (never fainted from POTS ), brain fog, fatigue, ibs, and frequent low grade fevers.

 

These symptoms have been so debilitating that I am now lost in what major and career path to pursue. Ever since I was young, I have always wanted to be a doctor/nurse, however, with these symptoms making a simple trip to Target or Costco extremely difficult and physically demanding, those career paths seem to be unrealistic due to the physical demands.

 

I would love to hear other people’s views on my POTS diagnosis (Is this POTS? What type of POTS? Treatment?) and advice for career paths.

 

Thanks for taking the time to read and comment, wishing you all the best,

Goldfish

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Hello @Goldfish - welcome to this forum!!! I am so sorry to hear about your problems, and at such a young age! But be assured that MANY young people with POTS have a almost complete recovery and enjoy a healthy life. --- The fact that your HR jumps up and then goes back down is not indicative of POTS, but all your other symptoms are. Normally a Tilt Table Test is used to diagnose POTS, which is done by a cardiologist. The recommendations your PCP gave you are appropriate, and I hope you follow them. Do you see ANY improvement with them? If they do not help you enough you might want to see a cardiologist for further investigation. 

As to career path - I know this stressful time of decision making all too well, since my daughter is also 16. Be assured - there is no reason not to pursue what you want at this time! There are many more treatment options available, so just hang on! If necessary you can take a year off between school and college ( or whatever career you want to pursue ). I know several young ladies with POTS that either are at college now or have recently graduated, with all different types of degrees. Even areas that require physical involvement, such as Nurses and Physical Therapists! I think it is best to approach your future as you would without POTS, since there is a greater chance for you to improve ( especially since you have not yet been evaluated or treated by a specialist ) than there is for you to stay symptomatic. As I said: there are many POTS sufferers that completed schooling of their choice even WITH POTS! 

5 hours ago, Goldfish said:

(Is this POTS? What type of POTS? Treatment?)

This question is best answered by a specialist. There is a list of physicians knowledgeable in POTS on this website ( under the physician tab ), and increasingly pediatric cardiologists are becoming aware of POTS. It may be a good idea to make an appointment with a pediatric cardiologist at a major hospital center near you.  

Don't worry - many teens are able to recover with proper treatment!

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