brethor9 Posted December 4, 2021 Report Share Posted December 4, 2021 Hi All Haven't been on for many years now and like many of you had just gotten used to and into a rhythm of living with my hyperadrenergic POTS and Dysautonomia symptoms. To say life has been awesome would be an understatement as many of us know but I was functioning. Cue early menopause and now I have crashed so hard I can barely move some days. Wondering if there are any other members on here who have hit meno and crashed? Are you on HRT? Low dose? High dose? Does anyone have an idea of what Estrogen has on blood volume etc? My understanding is it's a vasodilator so in turn would it not make POTS symptoms worse? especially if you have low blood volume and problems with vascular constriction? I would appreciate any kind of insight any may have. Bren Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 6, 2021 Report Share Posted December 6, 2021 I had two very bad POTS relapses--one at age 49 and one at age 51--both lasted about two months and were very disabling. I was in perimenopause at the time. I suspect the hormonal changes/fluctuations played a role. But I was also diagnosed with low B12. I was also losing a lot of blood due to heavy periods. So I think there may have been several factors. Knock on wood I have not had another relapse--so far. Quote Link to comment Share on other sites More sharing options...
Nin Posted December 6, 2021 Report Share Posted December 6, 2021 Has hrt only got estrogen in it? Has it got progesterone in it?? Quote Link to comment Share on other sites More sharing options...
Nin Posted December 6, 2021 Report Share Posted December 6, 2021 I've gone right down the past few weeks. I had the flu jab and then a few days later the contraceptive jab depo. Depo has progesterone in it and it definitely messing with me. Im back to where I was 2 yrs ago when I was in hospital. Having seizures again after not having them for a Yr. Quote Link to comment Share on other sites More sharing options...
Picklesquish Posted December 11, 2021 Report Share Posted December 11, 2021 I am 54 and my symptoms spiked at menopause. Progesterone really helps me adrenaline. I also take very small amounts of estrogen and testosterone but each time u tried to increase my symptoms got worse. Have a full sex hormone panel. Progesterone can be taken alone. I take a BHRT troche. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted May 9, 2022 Author Report Share Posted May 9, 2022 Nin My HRT is estrogen only and patch. Quote Link to comment Share on other sites More sharing options...
redpenny11 Posted June 7, 2022 Report Share Posted June 7, 2022 I’m wondering if this could be the cause. I was mostly normal for almost 10 years developing Dys after pregnancy. For 2 months now the symptoms have been everything I experienced before with new ones added in . I’m 47 and the worst being shortness of breath not correlating with heart rates. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 8, 2022 Report Share Posted June 8, 2022 Sorry to hear its come back but it does seem to have a habit of doing that during periods of change or hormonal fluctuations. Jealous of 10 year remissions however Quote Link to comment Share on other sites More sharing options...
redpenny11 Posted June 19, 2022 Report Share Posted June 19, 2022 So back following up… EP Cardiologist sees nothing abnormal in Echo or Holter other than a few runs of skipped beats but very short in duration .(I don’t feel it) HR at its lowest 39 while asleep and 144 (I’m pretty sure I was on a bike then ). Rheumatologist dx Chronic Fatigue Syndrome also but thinks issues are Primary Dysautonomia not secondary to anything . I’m still struggling with low heart rate 42 sitting most of this morning and goes to 70 and fluctuates standing . (110 if I go up the stairs ) . Very atypical from the last 12 years. Dizzy , exhausted and struggling to keep moving☹️…any thoughts on if Fludrocortisone could be at play possibly affecting endocrine system (hormones ,I’m 46) maybe suppressing adrenals or even the sympathetic system allowing Parasympathetic to dominate ? This is month 3 with bradycardia and I’m not able to work and just struggling to find answers . In addition my 17 year old started with presyncope several months ago. Dr says she misses official diagnosis of 40 bpm but fit the criteria for autonomic dysfunction. That’s ❤️🩹 heartbreaking for me ….Any thoughts on this change would be appreciated. I know how y’all get this . Thanks Quote Link to comment Share on other sites More sharing options...
Pattie Posted September 21, 2022 Report Share Posted September 21, 2022 I used HRT (lowest dose estradiol patches) to help with osteoporosis. I was on the patches for many years. Shortly after I quit using them, I began to notice symptoms that eventually were diagnosed as POTS. I have no idea if eliminating the estradiol is related to the onset of POTS. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted December 14, 2022 Author Report Share Posted December 14, 2022 redpenny11 did you ever get any answers about the Florinef? Since early menopause I am wondering in the Florinef that I have been in for 12 years is now interacting negatively with my Estrogen HRT. No matter what I do I can't seem to stabalize. I'm now as sick as I was 12 years ago before diagnosis. It would seem Menopause has crashed the system... Quote Link to comment Share on other sites More sharing options...
brethor9 Posted December 14, 2022 Author Report Share Posted December 14, 2022 Thanks Rama! Good to hear from you btw. I would love to call it total remission more of a learning to live with it decade. 😉 Quote Link to comment Share on other sites More sharing options...
brethor9 Posted December 14, 2022 Author Report Share Posted December 14, 2022 Pattie curious to know what was the lowest dose HRT you were on and how are you faring now? Quote Link to comment Share on other sites More sharing options...
brethor9 Posted December 14, 2022 Author Report Share Posted December 14, 2022 Picklesquish any updates on your battle with POTS and Menopause? I have become completely disabled by it despite trying several doses of estrogen. My specialist will not give me progesterone or testosterone as she feels it isn't required. I disagree but here in Canada hormone specialists are almost impossible to find Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 15, 2022 Report Share Posted December 15, 2022 I haven’t got round to watching this lecture yet, so I’m not sure how relevant it will be, but just thought I’d mention it: https://www.youtube.com/watch?v=Cg1-iS59V4o It’s called “Sex hormones and dysautonomia”, presented by Dr Blitshteyn. Quote Link to comment Share on other sites More sharing options...
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