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How can I stop feeling so bad with POTS?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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How can I stop feeling so bad with POTS?

Well I am 13 and last summer I got diagnosed with POTS. If you have POTS you know about all the test that come back normal and what not... They thought I had a brain tumor and I was put on seizure meds, then they thought I was mental and was making this all up. Anyway they didn't do a tilt table test but when I was in the hospital whenever I would stand up or sit up my bpm would jump by almost 50! They said that it was enough to tell them I had POTS.

Anyway my question is how can I get rid of my symptoms? My mom refused medications because of the side effects and risks especially after the seizure meds. I want to know what supplements I could take to help, what is a good exercise program (I am pretty active on the days I have dance class but other days I just sit around), and whatever else I can do to start feeling like a normal kid again. For supplements I mean like a multivitamin and stuff like i could get at GNC.
Tags: feeling, bad, POTS, test, help, brain, symptom, how?
6 Comments Post a Comment
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Avatar_f_tn
I am new to this, so I am still trying to figure it out myself.  Sorry to hear that you are having to deal with this at such a young age.  The good news is that I have read that you have a chance of growing out of POTS.  I am taking vitamin C, B12, B1, alpha lipoic acid, folic acid, magnesium, and fish oil.  You can try drinking coconut water for the potassium.  Of course, it is important that you run it by your parents and doctor just in case there could be potential issues.  Drinking 2-4 liters of fluid a day is important (Gatorade or Powerade may help), and increasing your salt intake.  Wearing compression stockings may help.  I prefer the footless leggings, because I can hide them under pants or long skirts/dresses, and still wear sandals.  There are some cute ones that come in black or different patterns that you can wear with skirts.  Exercise is important.  I find swimming or pool exercises are good, especially if the water is cool.  I go to the pool almost every day with my daughter, but I am careful to stay close to the shallow end since I still get a little lightheaded at times.  We have lifeguards at the pool, so that makes me feel better.  I started jogging afterwards.  I found that it is easier to jog after I have been to the pool.

You can also go to another website, dinet.org, for advice.  There are other people in their teens dealing with POTS.
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1857376_tn?1328886464
Well I don't have much to add
to that wonderful post of advice for you! I agree those things are good things to try and will help. Do you faint much? If so, my doctor recommends using a recumbent bike for excercise to keep you safer. Also, I wanted to recommend that you get a book about pots called, Together We Stand by Jodi Epstein Rhum. It is very comprehensive AND is filled with information about kids. The author is a mom of two with pots. The salt is importent, as well as the fluids. One thing I would say though is don't drink sugary electrolyte drinks. Your body will spend its energy processing the sugar and the electrolyte benefits will "go down the drain" literally!! Drink the ones without sugar. Good luck although you may need some meds in the end. I couldn't be doing as well as I  without them. And because you are so young it won't be forever. My son is your age, so my heart goes out to you. Take- care!

Lfreemom- Hey where do you find "cute" patterned compression tights? I'd love to know. I have to wear them too and it's getting warm so they show. Thanks!!
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Avatar_f_tn
I agree about the gatorade and some of the other sports drinks.  I drink powerade zero, which tastes pretty good and is sugar free.  I have started drinking coconut water.  I like Vita Coco with pineapple or mango.  

Compression Stockings:
http://www.rejuvahealth.com/eshopping/pattern.html http://www.discountsurgical.com/
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1857376_tn?1328886464
Thanks! I'll go check them out. Do you feel they are good quality stockings? I've had some that are and some that aren't. I'm looking for some good black leggings right now to wear with skirts and dresses. I didn't wear any yesterday to run a couple of errands, and I got stuck in lines and really paid for it. I'm sure you know what I mean! Ugh...
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2078882_tn?1333489661
Sorry to hear that you are having issues with pots! Its pretty miserable especially for someone as young as you are... I do the following and my pots is getting better:
Compression stockings 15-20mm they have footless ones which lfreemom02 recommended, these keep the blood from pooling in your legs and help with the circulation.
2- 4 liters of fluid helps a lot, I drink one Poweraid zero in the morning followed by water.
Nuun has sports drink tablets that are really good too.
Glucerna diabetic drinks ( my blood sugar is affected really badly by the pots and this makes me feel awful) Costco has these for a case of 30 for about 30.00)
Small meals, and eat frequently
Phillips colon health one tablet a day, seems to help with my awful bowel irritations.
Salt, add it to your food to taste, when I was first diagnosed I could eat salt straight out of the shaker and it did not taste too salty
stay away from sugar as much as possible
a healthy diet seems to really help
try to stay away from tyrosine foods, they may not affect you but they really made my symptoms worse, here is a list:http://www.livestrong.com/article/230947-list-of-foods-that-contain-tyrosine/
I also use an older total gym that my kids gave me... its been awesome, you can build exercise tolerance without being on your feet the whole time.
Be sure and log how you feel and what you try so you know if something is affecting you either making your symptoms better or worse...
Good luck! Feel free to message me :)
Kim
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Avatar_f_tn
Hi! I refuse to take beta blockers because of the side effects so I take Carditone and Arjuna. They are natural herbs you can find at a health food store. The combination of the two lowered my heart rate and stabilized my BP. I havent gotten any side effects taking them.
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