redpenny11

I stopped florinef maybe a year ago , it wasnt making a difference in how i felt like the first time i took it when i was mostly tachy. I am still struggling with bradycardia, fatigue, light headed feelings more often than not. No one has any answers its pretty discouraging honestly. And its most definitely worse around my cycle and a day or so after a stressful event. I would agree perimenopause (and having covid )really set me back.

So I don’t have answers sadly but am experiencing the same. I am 47 and since earlier this year my heartrates are hovering low forties (holter showed 29 while asleep). (I’ve had POTS for 12 yrs) Cardio says it’s just dysautonomia and a specialist in autonomic dysfunction said he has seen that but not often . I rarely go high anymore although if dehydrated I’m still low level tachy. I was told a pacemaker would elevate the numbers but I would still feel the same so not recommended. My best guess is hormones are the contributing factors . My thyroid always shows normal but I have every symptom of being hypo. Extreme Fatigue and nausea/dizzy are my worst symptoms . I wish I could find someone who could figure out how to even slightly improve symptoms . I’m sorry you are experiencing the same. I honestly prefer just the tachycardia because it was easier to mitigate . Nothing seems to help this .

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

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.

I don’t take anything outside of the Fludrocortisone .5 so pretty low dose. I was thinking the same about parasympathetic .(or sympathetic withdrawal) the nausea comes on suddenly and I can get adrenaline at the same time along with panic anxiety. Everything is out of whack no matter if my vitals are in a normal range. Evenings and nights seem to be worse. I was able to get into a cardio next week to look further into my Echo and hopefully a Holter. Trying a chiropractor tomorrow for the neck/head pain. Wondering if I have cranial instability driving this or blocking signals to vagus nerve. This flare started one day after a massage to my neck/shoulder for pain . Palpitations at night as well which I haven’t really had before. Dizzy standing but sometimes laying down too. So a plethora of symptoms in all my systems . It feels like you just can’t make it through all the dysfunction but I did once before so trying to stay hopeful .

How did you fare with the headaches? I am experiencing the same right now very intense back of neck up head with nausea and intermittent vertigo . I’m also in a full on flare after years or normalcy with pots.

I live in Florida and while the humidity can be excessive , I feel so much better at sea level than even if I visit North Georgia. It seems like there is a bit of a struggle finding physicians who are Dysautonomia literate but it probably depends on where in Florida. If anything I feel better in summer and worse in a Florida winter….

I am definitely dealing with this right now and most definitely in a flare . You described it perfectly. I do get migraines but only have a moderate headache . The sensation is awful!!

@shasta43 Did your Bradycardia resolve? I am suffering for 2 weeks with palpitations and heart rates in the low 40s in the evening . It’s awful and atypical.

Yes I did read that about Echos. I most definitely will look into a second opinion. Still presently waiting for the first cardio to schedule me, everything is in such slow motion. I wondered if the bradycardia is only at rest could that be from the valve? I have had the shortness of breath intermittently for a year and last years Echo was mild( unless it was misread also) the only new symptom is the reoccurrence of near syncope after being faint free for years.

Thank you so much, will do.

Hi All! I joined the forum 10 or so years ago after being diagnosed with POTS/NCS. I have not posted before but gained a lot of knowledge from frequent check ins. I have been well for many years after the initial 2 yrs of being home bound . About a year ago I began having shortness of breath that did not seem to correspond with bp/hr. All tests came back normal(lung, heart etc) and I was told anxiety. 2 weeks ago I began feeling off so checked vitals and noticed resting heart rate was quite low running in low 40s in the evening but 50s during the day sitting. I experience an increase in heartrate standing but not sustained and not like when I was first diagnosed. I restarted Fludrocortisone last year as my dr thought it may help with sob (it didn’t) heartrate seems to bounce up and down with movement, standing , talking etc. ( I am dizzy , nauseous and generally feel sick at this point ) New Ekg was abnormal but they questioned accuracy and Echo showed moderate mitral valve regurgitation. I started experiencing near syncope last week again sitting/standing and last night during sleep . I’m waiting on a cardio referral now. Does any of this sound Dysautonomia related or has anyone experienced this? It’s really scary because I have been well for many years (I am now 46, 35 at time of diagnosis ) Thanks for reading 🙏

Hi Kate, I would definitely be interested . I am not in Orlando, but on the west coast. It's only an hour and a half drive though. My email is redpenny11@yahoo.com. Thanks, Stacey