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Piya

11mo ago

Living with POTS: Fear, Heartbreak, and Questions

Hi everyone, I am 31 years old and got diagnosed with POTS last month. I dont know how and when I developed this but I remember during my first pregnancy, I had syncope. Other than that my pregnancy was very healthy and no other symptoms. Then my second pregnancy in 2020, again I had one syncope and rest everything was normal. I never felt anything unusual. I got covid in December, 2021 and I suddenly felt as if something is happening to my heart and I am about to faint so I rushed to ER. I was told its panic attack as my vitals were normal. I kept ignoring it and travelled to India for my brother's wedding and I got so sick with there, I had diarrhoea for two months and lost 8 kilos. I literally stayed in bed as I felt so weak. My ECG, ECHO were all normal. Then I developed daily headaches in last year July. No doctor was listening to me here so I travelled again to India to see specialists. They did a Tilt table test and POTS was diagnosed. I am now on a medication for headache as my neurologist thinks its migraines. I am just so heartbroken. I was absolutely normal and working mum. I have developed this fear of socialising now. I am scared to go to work. I do not enjoy my kids. Can I ask whats life like for you guys? Are you able to work? Do you go on holidays? Is there any chance this condition will ever go away? Please help!!

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Bellea606

11mo ago

Feel free to message me about anything!
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Bellea606

11mo ago

Hi love! I have both migraines and pots as well as some other auto-immune diseases. Life does become "normal" again! It's really hard at first to get through figuring everything out. I am a full time manager in retail, and I travel a LOT. You'll just have to adjust to the symptoms you experience. Extra water salt. Meds. Etc. You got this mama! Life does become so enjoyable and so liveable again I promise! I'm 8 months since diagnosis. 8 months of research and trying new meds, I still haven't figured out all my meds but I'm mostly in homeostasis from my at home treatments. You have absolutely got this!
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Piya

11mo ago

Hey love!! Thank you so much for this message!! I am so glad that you are enjoying your life❤️touchwood!! Can I ask what meds are you on? I am not on any meds for POTS but I have been getting daily headaches since last year and it has changed my life so much. My neurologist from India has put me on Topiramate and Amitryptaline. I am shocked that this medicatio n is not making much difference. What type of headaches do you get? Is it once in a while? With POTS, how do you manage to work full time? I am so scared to go back to work. I feel like my career is finished. 😥

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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