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matthewlswanson

Just got diagnosed with POTS - What advice do you veterans have for me?

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I'm a 28 year old man who has recently been diagnosed with POTS. Since high school I have been experiencing dizziness, migraines, irritable bowel, trouble sleeping, extreme lethargy, low motivation, etc and no doctor or specialist has been able to help. My sister also got diagnosed with it this summer. I'm hoping the POTS diagnosis is finally the answer. The problem is the quickest they can get me in to see a specialist (at OHSU in Oregon) is September 1 2020, almost 9 months away!

I have just started researching and there is a ton of info out there. I guess I am hoping to find ways from the community to manage my symptoms until then. So far what has helped me with the migraines is taking Excederin and eating Vietnamese Pho soup (random I know), and the only thing that has maybe helped with my stomach is Gatorade, although I would like to find something without all the food coloring, corn syrup, and chemicals. I have been trying to exercise more but finding it really hard to make myself do it.

I would really love to get back to my active lifestyle without constantly feeling dizzy and sick, any helpful suggestions would be so greatly appreciated! What has helped you the most?

Thank you,

Matthew

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Hello @matthewlswanson - welcome to the forum! Here is an article from our information section that might be helpful: 

I have had POTS for 10 years and also had to treat myself ( with help from my PCP ) until I could be seen by an autonomic specialist (1 year waiting period). What helped me the most was a beta blocker and SSRI, increasing water and salt, avoiding prolonged standing or walking. Personally I cannot wear compression hose due to excessive vasoconstriction in my toes but most people find it helpful. The vietnamese soup might be due to the high salt content.  Exercising is important but you have to be careful not to overdo it. I use a rowing machine but yoga, aerobics etc has helped others. -- I am sorry you and your sister are dealing with this. My 2 sisters also have POTS. Try to research as much as possible and educate your PCP along with you. Best of Luck - be well!!

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Hi there Matthew, 

I totally agree with @Pistol It's so important to have enough mild exercise, but not overdo it, because that can make things worse. Just listen to your body. 

Salt. Lots of fluids. Prioritising rest. Healthy eating. Being as positive as you can. Knowing your boundaries. 

Hang on in there! I know 9 months is a while away, but it will come around fast and I hope you're given some good options for treatment. I'm sure you will be! 

Take good care of yourself! 

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Get this book The Dysautonomia Project. https://www.amazon.com/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243?SubscriptionId=AKIAILSHYYTFIVPWUY6Q&tag=duckduckgo-d-20&linkCode=xm2&camp=2025&creative=165953&creativeASIN=1938842243  It’s written for patients, family and doctors that might not be familiar with dysautonomia.  Lots of advice on how to live with this.  Absolutely exercise, starting slowly is essential.

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It is overwhelming when you are first diagnosed.  But it does get easier over time and you begin to manage your symptoms.  You may want to take a look at a video we produced about POTS  called Changes:  Living with Postural Orthostatic Tachycardia Syndrome.  It includes interviews with patients and specialists.  Understanding the syndrome is half the battle.  

https://www.dinet.org/info/video-living-with-pots/changes-living-with-postural-orthostatic-tachycardia-syndrome-r113/

Best of luck and keep asking questions and talking to other people living with this - it really does help.  Hang in there. 

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Thank you everyone! Sounds like the first steps for me to take are easing into more exercise, increasing salt intake, and a lot more research. I have been attempting to do exercise but have been finding myself very unmotivated because I feel so tired and dizzy, but you all are giving me hope that I will overcome this! Another thanks for those resources, I will check them out!

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