kalamazoo Posted January 3, 2013 Report Share Posted January 3, 2013 Does anyone else feel substantially worse during their period? The day before and for the first few days my heart rate is so elevated that I practically can't do anything and if I do I get so winded and it starts to hurt. I've always had bothersome periods but now theyre just getting ridiculous regarding my heart. It just pounds so hard and loud. I mean, It always does that but quite noticeably more during the first few days. The doctors seem to just think I'm anemic, which I'm not. So I think its pots related. Quote Link to comment Share on other sites More sharing options...
misstraci Posted January 3, 2013 Report Share Posted January 3, 2013 A big YES!! I'm bad before, during, and after, and there is a lost little week in there somewhere where I'm not as bad but of course still don't feel good due to regular pots or whatever is wrong with my body. It was explained to me very vaguely about the hormones is what's causing things to be worse, well of course. BUT which hormones, why? is there anything we can do to counteract this process? etc etc Quote Link to comment Share on other sites More sharing options...
Relax86 Posted January 3, 2013 Report Share Posted January 3, 2013 I'm the same....I may consider stopping my cycle thru some sort of birth control or an ablation which has been suggested. I have watched the forum for ppl who tried these options and so far there's been no one who has said stopping their period made their POTs better. But at the end of the day if I had one less thing to deal with it might be a good thing. Quote Link to comment Share on other sites More sharing options...
lissy Posted January 3, 2013 Report Share Posted January 3, 2013 Hi,I was one that had severe problems due to hormones changes resulting in POTS symptoms being worse, I had a hysterecomy and left one ovary ( found out I had endometrosis) during surgery....my symptoms aren't as severe now but I still feel the flucuations since that ovary is still working so in my case no periods but still feels like I do, just not as bad. ITS been posted about alot so I think its a pretty common complaint :(Im at least 50% better but who knows if that due to getting rid of the endo....There is some hormone therapy that completely shuts down the ovaries but have heard it has some nasty side-effects maybe u can speak to your gyno about all options.Take care. Quote Link to comment Share on other sites More sharing options...
lissy Posted January 3, 2013 Report Share Posted January 3, 2013 And to add stopping the lining from shedding is not the fix its the ovaries, unless you are anemic then the options would be different. Quote Link to comment Share on other sites More sharing options...
Altruism Posted January 3, 2013 Report Share Posted January 3, 2013 Hi, I just started a similar topic. I am a pregnancy-induced POTS case and I'm breastfeeding. My baby I 2 months old and I'm bedridden due to severe POTS. On top of this, I developed severe PVCs 2 days ago and I also had my first period. So, YES, I got substantially worse with my period coming and I developed much more health issues - including these scary palpitations, heart fluttering sensations and severe dizziness.Do you girls think oral contraception helps? Or stopping our periods altogether? Quote Link to comment Share on other sites More sharing options...
k&ajsmom Posted January 3, 2013 Report Share Posted January 3, 2013 Right before my autonaumic issues turned into POTS I was diagnosed with endemetreosis and I have always had a lot of cysts that rupture on my ovaries that are very painful. I actually went to the gyn before anyone else because I thought the gi issues were related to my period, thats when they found the endemetreosis and more cysts, which they said it was possiable but should relent some when Im off my period, and it was unrelenting...24/7 and 7 months later it still is. I feel like I have menstraul cramps all month long...ughI have tryed various bc in the past and always had bad reactions to them. ie; lowers bp, makes me manic, nauseated, weight gain even without eating alot, headaches increase, etc... so I just deal with it, but I've heard it help others tremendously.I am slighty more symptomatic during my period but the worst is really the week beforeand week after....so thta 3 weeks out of a month..... oh the joys of womanhood lol Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted January 4, 2013 Author Report Share Posted January 4, 2013 One of my ovaries is full of cyst so I think this aggregates my pain. But I'm comforted knowing I'm not the inky one who experiences this. As it's so bad that I usually stay home from anything that day. But as far as birth control I was told I could never take birth control as it changes your blood volume and increases the risk for clots. I have vein swelling and pooling in my limbs so doctors demanded I never take birth control. I don't know how to deal with this then. Maybe a normal pots patient, if such a thing exists, would be able to take birth control. or maybe up the beta blocker Meds around this time of the months. Its hard to say especially since no doctor seemed concerned about it. So frustrating. Quote Link to comment Share on other sites More sharing options...
westernmass Posted January 5, 2013 Report Share Posted January 5, 2013 YES. I was on the mirena iud, not having a period at all- and felt bad most of the time. I went off of it a few months ago, thinking I've tested just about all I can think of, so may as well take it out and see how my body responds.I am cycling with symptoms- a few days before, the week of and a few days after-- BAD BAD Terrible!The other week or two- I feel substantially better and have more "good" days than before. Not sure what it means. Quote Link to comment Share on other sites More sharing options...
UnderwaterThing Posted January 5, 2013 Report Share Posted January 5, 2013 Yes. It's actually becoming a bit of a crisis. I have intense pain, GI problems, and vomiting on the day of and a few days after. I have to miss work and work my life around it now. It's incredibly inconvenient. I got off birth control two years ago and that's when the dysautonomia really started. I haven't figured out a solution yet. Anyone else use something besides hormonal birth control that helps? I have considered trying a chasteberry supplement Quote Link to comment Share on other sites More sharing options...
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