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Camogirl

789d

I see a cardiologist regularly to help with my POTS. I tried the salt pills, compression socks, I’ve doubled my water intake but nothing seems to be helping. One minute I can be perfectly fine and the next I feel like I’m going to pass out. I can’t go out and do anything or make plans with anyone because I never know when I’m gonna get these “episodes”. I’m only 19 years old, and I have absolutely no quality of life. Everyday is a constant battle with not only my physical health but now my mental health. I’ve seen several different doctors and besides my normal cardiologist they all read me googled articles on my diagnosis… like I couldn’t do that from home. How do you guys cope with this? How do you guys explain to your friends and family that you’re trying your absolute hardest to be productive but this disease is so uncontrollable and the doctors lack the knowledge needed to efficiently help us. How do you live with pots, instead of just surviving?

Top reply
    • Potato_Chip

      784d

      I'm right there with you. I wrote this on another question, but it’s 100% applicable here too: It feels like nothing actually helps, and nobody really understands the extent of the situation since POTS is mostly invisible. I try to stay positive as best as I can by celebrating little wins (my heart rate maxed out at 198 today- I count that as a success since it's below 200!) and reminding myself that losing hope won't help. As long as I hold on to small goals taking things one step at a time, things start to seem a little more manageable. It can be tough when nobody in your close circle truly gets what you're going through, but just remember that you're your best ally and your own health advocate! You got this, stay strong, and feel free to reach out if you need someone to talk to (even if it's just celebrating a little win) 💛

    • Potato_Chip

      784d

      I'm right there with you. I wrote this on another question, but it’s 100% applicable here too: It feels like nothing actually helps, and nobody really understands the extent of the situation since POTS is mostly invisible. I try to stay positive as best as I can by celebrating little wins (my heart rate maxed out at 198 today- I count that as a success since it's below 200!) and reminding myself that losing hope won't help. As long as I hold on to small goals taking things one step at a time, things start to seem a little more manageable. It can be tough when nobody in your close circle truly gets what you're going through, but just remember that you're your best ally and your own health advocate! You got this, stay strong, and feel free to reach out if you need someone to talk to (even if it's just celebrating a little win) 💛

    • Java

      787d

      I’m 24 so I know how it feels to be so young and going through something so scary. I changed careers to something I can do from working at home, increased salt and water, and work with my neurologist. I find that getting hydration infusions helps

    • NewYork

      788d

      I’m going through the same thing right now too. Don’t be to hard on yourself, you are doing your best. I like to chat on discord during the day, that somewhat helps my mental health. Also a walk outside. Since I’m stuck at home, I have a schedule with something different every hour, like read, nap, tv, art, etc.

    • Sophg

      788d

      this made me feel less alone. I just finished my trial of corlanor for pots and it was awful. My usual daily experience sounds a lot like yours. I’ve heard a lot of people w pots absolutely love corlanor. My sister, who also has pots, swears by it !! I would talk to your doctor about starting a beta blocker or a medication like corlanor. Also, raise the head of your bed 6 inches above your feet. I bought bed risers from target and only used 2 for the head side! Also, ABDOMINAL COMPRESSION BINDER !!!! These work well with compression pants. Compression pants don’t work well by themselves, you need the abdominal compression as well. I have a “waist trainer” from SKIMS that I wear. it gives a similar effect to the medical binders. Drink 16oz of water quickly before you get out of bed in the morning as well. These are all things that my doctor has had me implement

    • spookyspoonie

      788d

      I also recommend LiquidIV drinks- they help me way more than any other supplemental drink. And if you are interested, there may be local organizations who help people get service animals- I trained my dog to alert to my pots episodes, she can smell my blood pressure changed before I start feeling symptoms, so she is able to tell me to sit/lay down and prevent fainting

    • spookyspoonie

      788d

      Atenolol changed my life. I know being so young, the idea of beta blockers is something you & your doctors may be wanting to avoid, but its literally the only thing that allows me to be mobile. All the other tips and tricks just don't help enough for me, without atenolol I faint all damn day but with it I am down to a few episodes a week. Low dose beta blockers dont really have side effects and are proven safe in long term conditions, so definitely something to try

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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