JMB Posted June 9, 2022 Report Share Posted June 9, 2022 Hello all! My name is Joy and I am very new to this network (this is my first post). I'm 21 years old and was diagnosed with POTS around 11 years ago. Growing up with POTS, it was very easily managed with different doses of propranolol. However, that stopped working about two years ago and due to other health complications I cannot take any other medications to control my POTS. In general, I have been able to keep up with my normal activity, including going to university, although I do things at my own pace and have lots of accommodations at school. I do experience episodes every now and then, especially when I get busy. However recently, I've noticed I'm having more episodes (near or full syncope, weakness, sweats, etc.) around my period. I've only started having my period regularly within the past year because of a change in birth control. I wanted to reach out and ask if other people experience this too? If you do, is there anything you find that helps less the intensity of the episodes? Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 9, 2022 Report Share Posted June 9, 2022 Hello @JMB - welcome to the forum, Joy! I am sorry to hear you are going through all of this. -- I know that menstrual hormonal fluctuations can cause your body to retain fluid - that is why often we become bloated, swelled and gain weight around that time of the month. That means the body draws fluid from the circulation and that makes our blood "thicker". meaning it causes our body to work harder to circulate the blood. Sometimes that can cause a faster heart rate or brain fog ( b/c the blood does not get to the brain fast enough ) or passing out because our BP goes too low. Whatever the mechanism - what helps is taking in plenty of fluids and increasing salt intake ( this will help the body to keep the fluids in the vessels ). Compression stockings can help to maintain good circulation back to the heart, so the body does not have to work so hard to pump the blood back up. I can tell you from my own experience that stress often makes our symptoms worse, as does heat. Can it be that you might be suffering from one or both at the time? For many members on this forum warm ( or changing ) weather is a trigger. If your doctor agrees you might benefit from the usually recommended first-line regimen of fluid/salt/compression. You also might find some helpful tips in the Information Resources tab on this site. Wishing you all the best! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 10, 2022 Report Share Posted June 10, 2022 Thank you for that explanation Pistol. I never really understood the mechanism that explained why I would feel worse right before and during my period. But yes extra fluid and salt helped me too each month. I also use coconut water bc of the added benefit of a little potassium that seems to help me. I had a very difficult time through perimenopause with POTS but since now going thru menopause many days I feel the best I have felt in years! So yes for many of us there is a connection of monthly cycle and POTS. (And also pregnancy--my worst experience with POTS was during pregnancy and it was even worse post partum). If increasing salt and fluids is not enough--for me--my dr has prescribed IV fluids in the past and perhaps that could be tried. There are of course medications that can be tried too if this isn't helping enough. Quote Link to comment Share on other sites More sharing options...
JMB Posted June 18, 2022 Author Report Share Posted June 18, 2022 Thank you so much @Pistol and @MomtoGiuliana! I really appreciate you taking the time to explain all of this and give me your insights. I didn't know the mechanisms either, and this specific experience has been so new I wasn't sure how to approach it. Again thank you Quote Link to comment Share on other sites More sharing options...
brethor9 Posted December 14, 2022 Report Share Posted December 14, 2022 @MomtoGiuliana are you on any HRT? I just started early menopause due to ovary removal and have had such a severe relapse I am.almost bedridden again. I am currently on just an estrogen patch and florinef. I have no idea how meno affects POTs hormone wise. Any insight? Bren Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 14, 2022 Report Share Posted December 14, 2022 17 minutes ago, brethor9 said: are you on any HRT No. I am still feeling quite well and menopause if anything has brought improvements for me so far. However, I was lucky enough to go through a gentle menopause--no hysterectomy etc--my cycles just petered out on their own. I imagine having your ovaries removed would be a big adjustment for your body. So sorry you are in a bad relapse. I think from what I have seen on the forum and read anyway that for many women symptoms improve after menopause. But perimenopause can be difficult. If you just had your ovaries removed it makes sense unfortunately that you are experiencing a flare up. I hope once your body adjusts that you will have a big improvement. Quote Link to comment Share on other sites More sharing options...
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