Lau36

30d

I am looking for advice for living with POTS, I am recently diagnosed and have been refused any medication for it because of my age. I was told i had to learn how to live with the condition but have been given no support regarding this, and am having to take time off of work due to fainting and severe dizziness affecting my ability to walk. i’ve tried increasing fluid intake but this is difficult due to overactive bladder. any tips would be welcome because pots has completely taken over my life at the moment!

Midodrine

Dizziness

Postural Orthostatic Tachycardia Syndrome (POTS)

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  • kenda

    30d

    i’m so sorry to hear that! if you don’t mind me asking how old are you? i’m 15 with pots and i’m on beta blockers. A docter should not refuse medication and tell you to live with it considering it’s very difficult to and their are medications that do help.

    • Lau36

      30d

      i’m 22! they told me i was too young to go on beta blockers! :0

      • Asg

        30d

        I started taking beta blockers when I was 17! I would get another opinion

  • JustRachelle

    30d

    Hey I’m on medication and the only thing it does is slow your heart rate down. All the other symptoms are still there and they are the ones that bothers me the most. It’s disabling anyway you look it at to be honest. If rather just lay down.

    • JustRachelle

      30d

      You can also see about switching doctors and see because there has to be something you can take

      • Lau36

        30d

        i would hope so! unfortunately where i live i am very limited in regards to which doctor/s i can see, and i am unable to switch at the moment. :(

  • BoomerangValentine

    29d

    I don’t know if it’s something you’ve thought about but mobility aids have made a big difference in my life. I got a rollator that was really helpful because it offered stability and a guaranteed place to sit down. Then I ended up getting a wheelchair that has been very beneficial. It’s vastly increased my ability to participate in life. Beyond mobility aids, electrolyte supplements, compression socks, and increasing salt/ taking salt sticks are helpful. If physical therapy is an option, some people benefit from it. Good luck 💕

  • LemonSnicker

    29d

    A lot of people swear by upping their salt intake! I’ve heard that can help it, if you’re having a particularly hard flare up, to eat some salty foods, or try salt tablets! Also compression socks, knee high is fine, thigh high is probably better. It’s suppose to help your blood flow regulate easier with pots I think? Personally I didn’t notice much difference with them, but I also didn’t wear them super regularly, so it might be worth a shot if you aren’t ready to go on medicine yet! Also yes fluids, but instead of just water you can try dripdrop(it’s a powder you add to water) or Gatorade, or other drinks with electrolytes! Hope you find some relief!

  • Magpie42

    29d

    Drinking more water is great but, you pee it out. My doc that manages my POTS/EDS wants me to make 1/3 of my daily fluids to be electrolytes. Not gatorade, that's just sugar. Look into Liquid IV (does have a lot of sugar), and I've recently been turned on to LMNT. Saltstick by Vitassium is another way to increase your salt/electrolytes. Recommendations differ, but up to 12 grams of salt a day is standard. The point of salt+water is to increase blood volume and blood pressure. We need help with that where the general public doesn't. If you have any questions, feel free to reach out.

  • Belugabear

    29d

    I’m also 22 and am on midodrine which helps! I have tried a couple other meds as well. It sounds like you need a new doctor! But in the meantime I’m terms of living with it, I recommend salt tablets, drinking absurd amounts of water, and giving yourself extra time to go places so you can sit or stand slowly! My issue is mainly going from lying down to standing, so I always give myself five minutes to sit before getting up so I don’t faint. I also have been loving compression socks, they help a lot! Question about your bladder - do you have IC? If so I do too and can tell you more about that as well :) message me any time if you want to chat more!!

  • Lyzard

    29d

    Maybe you need a specialist that knows more about pots! So many doctors aren't very knowledgeable about it and there's no reason you shouldn't go on beta blockers. Electrolytes will probably help you a lot as well. I have had some issues with bladder control with my increased fluid intake, if I'm not going to be close to a bathroom I wear my period underwear ha

☝ 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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