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   My name is Catherine, and I’m 20 years old. My mother suffered Dysautonomia in the past, and still has symptoms, although more mild, nearly everyday. I myself have just recently turned 20, and I’m being to show every single symptom that she had. We ruled out thyroid issues, and once we get hormonal problems ruled out, I’m not sure what else it could possibly be. It’s gotten worse In a short amount of time, making it very difficult to do day to day tasks that I would’ve been able to to with relative ease not long ago. Work has gotten more difficult because I work retail and stand up for 5 to 7 hours each shift with only one 15 min break. I am out of breath in seconds, whether it be from bending over for a long period of time or taking the trash cans out of the drawers. My heart races and I shake. I sometimes get very scared I’m going to faint. But one of the most difficult things I’ve dealt with during this is that other than my mother, nobody understands it, or sometimes even believe me. It is difficult being a young woman with an invisible illness. I came here as suggested by my wonderful mother, just to get familiar with others who are like me. I’m looking forward to seeing everyone else’s point of view and Their stories. 

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Hi Catherine

Welcome to the forum although I am sorry you had to seek us out.

Your symptoms sound like classic dysautonomia symptoms.  For many people, and sounds like your mom is one of them, symptoms can wax and wane and do tend to improve over time and/or with treatment.

This information may be helpful to you

https://www.dinet.org/info/pots/

We would recommend you try to see a specialist and get a diagnosis and then of course treatment if you have not started to do so.

We maintain a list of specialists here:

https://www.dinet.org/physicians/

Have you tried adding fluids to see if that helps?  Most people find some relief from extra fluids and salt.  (But again it is best to get a diagnosis from a specialist rather than try to self diagnose and treat.)

I hope you find the forum and our website to be useful and hope you starting feeling better soon.

 

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Dear @catherinedianeabbott - I am so sorry you are going through this! POTS runs in my family as well and I have read that it often gets passed down from mother to daughter. My mother and 2 sisters have it but my 2 brothers do not. Since you mother suffers from it as well you at least have ONE ally! Unfortunately it is extremely common that the struggles from POTS are hard to understand by Others and most of us on this forum experience ignorance from people regarding our limitations, including many physicians.  The book " the dysautonomia project ", which can be purchased from here https://thedysautonomiaproject.org/   or from amazon , is a very helpful tool for both physicians and patients and has also sections for family and friends of people with POTS. It was essential to me in educating Others about the reality of my symptoms, and I gave a copy of it to my PCP as well.  The following is also a very good resource 

That reminds me - since your mother has POTS I assume she already sees physicians that are familiar with POTS? A good PCP is essential in dealing with this disorder b/c many of us have to see several specialists for the diverse symptoms we can have from it, and a PCP is managing all of the necessary referrals for you. 

Until you receive a proper diagnosis through a TTT and see a specialist you may want to follow @MomtoGiuliana's advice and increase salt and water intake as well as use compression stockings, which help many POTS patients.  Also - personally I find it difficult to continue a job that requires so much standing, since standing is the single-most common trigger for our symptoms.  When I was still working my employer had to accommodate a sitting position for me. This is actually a law in the US, so once diagnosed your employer would have to do the same. Your doctor can give you a note for this. 

Although sad that your mother suffers from POTS as well I am glad for you b.c you have someone to guide you through this. And - since she has improved it is quite likely that your symptoms also will improve with proper treatment and lifestyle changes, especially avoiding prolonged standing or walking.  Best wishes for you both!!!

 

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