JennKay

@KiminOrlando -- Sorry to hear you are dealing with covid19 and amplified dysautonomia symptoms. Totally not fun. My BP also went up, but so did my pulse. The second time I tested positive for covid19 I ended up hospitalized b/c my electrolytes were off and my QT interval was prolonged. Maybe at the least you can ask your cardio to check your electrolytes? Not sure how that would help your BP though... The first time I had covid19 I was "weirder" than normal for about 1.5-2 weeks after I became symptomatic. The second time I had covid19 I felt fine after my electrolytes were re-balanced, but did have some lingering gastrointestinal symptoms. The doctors were convinced that my second positive test was related to my first infection, but I believe I was reinfected.

@MikeO -- Give this one a try with spaghetti squash! I used 1lb ground turkey + 1 lb ground beef instead of 2lbs ground beef, to lighten it up a bit more. https://thedefineddish.com/perfect-whole30-italian-meatballs/

@DysautonmiaMatt -- I have the yellow tablets. I was surprised that it helped so much b/c I was already adding extra salt and fluids. This seems to keep things in me a bit longer and I can be on my feet with my kids a bit more.

@MikeO -- I have no idea! I've only been "off" sugar since Sunday. I cant imagine it would have an effect like this so quickly, but you never know. And, I made this amazing Whole30 marinara and meatball recipe with spaghetti squash I need to share it on your bon appetite thread. It was absolutely fantastic and I feel so good after eating it -- no carb high and then hypoglycemic low. @DysautonmiaMatt -- the rx they gave me was for 0.1mg tablet once a day, with option to add second tablet if needed. I found that taking one dose in the morning was good, but I found I was crashing by late afternoon. Since then, I split my 0.1mg tablet and do half morning with the other half late afternoon. Adding the afternoon half dose helped with my evening crash.

@DysautonmiaMatt -- Yes, I agree. Any improvement is good. Not going to complain about that 😁 The EP office did check my potassium about 1 month ago and it was good. I can ask them to check again, I guess.

Hi all -- I have posted many different times about my battle with PVCs. However, I've been taking florinef for about 2 months and my quality of life has very much improved. I'm having less orthostatic issues and have more energy to chase my kids around. I thought I was also having less PVCs overall, but am starting to feel palpitations again so thought I would try to catch them on my Kardia. Interestingly, the last couple of Kardia's only caught PACs and not PVCs. I find this very strange!! Has anyone ever dealt with this previously -- a dominance of PVCs that converts to a dominance of PACs? Does anyone have an explanation for this? I don't have another appointment with my EP until early November, but may send him a trace or two to get his opinion. Although, I'm guessing they will say to just ignore them unless I have a long run of them or my BP tanks/spikes. I attached the portion of the Kardia that caught 2 PACs. Thanks!!

@MikeO -- wow, such an interesting thread and set of observations. I also suspect my symptoms flare from chnages in blood sugar. I connected it to my blood sugar when I was pregnant and had to do the OGTT, except mine was hypoglycemic as you suspected yours would be. I apparently get nauseous, lightheaded, and flushed when my sugar drops into the 60s. I'm still trying to connect it to my situation now though. I have been taking florinef for almost 2 months now and it has made such an improvement in my quality of life. I still get PVCs, but they are much less frequent and I'm sleeping a little better. Little is the key word there, but every bit counts, right? 😆 Then yesterday I was at a baby shower and had some pudding pie dessert thing that was delicious, but about 10-15 mins after my chest got tight and the PVCs when crazy. Now, I suspect sugar must be kicking my sympathetic side into over drive. Will be avoiding sugar as much as possible for the next 2 weeks to see if this helps any. It will be sad to give up sugar, but I will gladly compromise if it makes the PVCs better! I feel like I am still paying the price for that sugar bomb today...

@Bailee -- I feel you too!! I will get all the pre-syncope feelings but my vitals will be normal. Have never figured out why either. I've tracked my symptoms and the one thing I know will trigger things is standing for prolonged periods, which for me doesn't have to be that long!! I am taking propranolol to help with random adrenaline surges and just added florinef about a month ago to help with low BP. Florinef has made a huge difference for me. Like @MikeO, I will get symptoms when my diastolic drops below 60 and Florinef helps with the low BP. Propranolol seems to be the only beta I can tolerate, but unfortunately it doesn't help with my PVCs. I've tried metoprolol, atenolol, and carvedilol -- all of which made me feel very lousy. Like the others have suggested -- keep trying until you find a better combo for you and don't give up hope! We are all different for different reasons.

@MikeO -- oh my!! From.what Ive read, I get ya though 😉

@MikeO -- correct! It is essentially varicose veins in the pelvis area.

@MikeO -- I think men can get similar variscosities in their gonadal veins, it is just more common in women b/c we are responsible for growing new humans which puts pressure on everything down there!! 😆

Am laughing b/c when I was first diagnosed with pelvic congestion syndrome I wasn't looking for connections to POTS. Just found this article which states, with statistics, that women with POTS have a higher incidence of pelvic congestion syndrome than women w/o POTS. https://pubmed.ncbi.nlm.nih.gov/32757696/ I am going to proceed with whatever treatment is recommended and will report back since this may help other women in our community.

Hi all - I've seen this topic come up before, quite frequently about 10 years ago, but nothing much since. I've also messaged a couple of users that posted a decade ago, but haven't had any responses -- which is totally understandable -- so thought I would start a new discussion thread. Before all my dysautonomia symptoms started I had regular, cyclical pelvic pain that started after my second pregnancy. My OBGYN looked into this, I was referred to a vascular surgeon, and we found that I have pelvic congestion syndrome. At the time we agreed that no treatment was needed, especially since I could pop a couple of Advil and work through it most days. Then my main dysautonomia symptoms started about 1 year later. I have asked everyone (the vascular surgeon, my cardiologist, my EP, my neurologist) if the two were related and always got the "I'm not 100% sure" response. So, I just let it go. In the last few months, in trying to find alternative treatment options for me, we discovered that my hormones are menopausal even though I'm in my mid 30s. So, I gave progesterone a try about a month ago. Crazy enough, the progesterone improved my orthostatic symptoms, eliminated my PVCs, and I slept through the night for the forst time in over a year. I felt normal again. But, it aggrevated my pelvic congestion syndrome to where it was painful when standing -- no more lightheadedness, just pelvic pain!! And, when I went off the progesterone to have a cycle the PVCs and other symptoms were worse than before...didnt think they could get worse. So, this didnt seem like a good long term option anymore either. I discussed this with my husband and we talked about my veins again. So, I messaged the vascular surgeon and told him I'm ready to fix these veins to see if it alleviates my dysautonomia symptoms. And if not, at least I may be able to take progesterone long term once the veins are fixed. We just did a CT scan with contrast to get the big picture of what is happening and I see the surgeon Monday. All of this to say -- have any of you been diagnosed with pelvic congestion syndrome, or know of someone diagnosed with it who improved after treatment? I've read a few places that POTS can be secondary to pelvic congestion syndrome but havent found any studies quantifying the association, just anecdotal evidence. Thanks!!

@Ana -- just curious, are you still using the flecainide? Was wondering if you were able to stop it once your symptoms inproved.

@MikeO -- Am curious to see how it works for you too! Yes, if I eat any amount of refined sugar, like anything more than what is in a handful of M&Ms or something similar, my sugar spikes then crashes. Not as bad as when I was preggers, but still enough for me to notice it. I usually have to go eat some protein to correct it. Large amounts of sugar just aren't worth it anymore...unfortunately!

@DysautonmiaMatt -- I second what @MikeO said, glad to hear the new doc said to stop the Lexapro. Hopefully that will help settle things down for you! And, I'm going to try supplementing with potassium that I got from CVS today (potassium gluconate) and will see what happens. You and I have similar issues so hopefully the potassium will help me too! My most recent 2 week Holter was done in May of this year. At that time my total PVC burden was <1%, but at certain times of the day (especially at night b/w 10pm and 6am), my PVC burden climbed to 5-10%. I asked my EP if this was sufficient for an ablation and he said no b/c there still weren't enough PVCs to map the problem location appropriately. But, I know my current burden at times is b/w 10-20% b/c I will catch 5 PVCs in a 30 second Kardia trace, which is nearing 20% of my total beats. Lately, I will be trying to go to sleep and I will be in and out of bigeminy until I fall asleep. It is just horrible.

@MikeO -- Not as far as I am aware. I do tend to run on the lower end of normal though. I can't get a hold of any of my cardiologists to prescribe it anyway!! So frustrating...

@DysautonmiaMatt -- Thanks for the suggestion. I am going to ask about the 10MeQ. Is that something you can get over the counter or is it prescription only?

I also experience this daily - the hot flash upon waking and being awake for an hour or more in the middle of the night. I think both are probably related to the normal circadian rhythm of hormone release at night, at least that is what my endocrinologist suggested to me. He thinks I am super sensitive to the release of catecholamines. I suspect the normal break in my sleep cycle causes a release of catecholamines, resulting in vasodilation, the subsequent hot flash, and then my PVCs always start going once the hot flash hits. I haven't found anything that helps yet. I didn't have this when I first started having symptoms, but rather it appeared after a few months and hasn't gone away. This has been going on for about a year now. But, this isn't my worst issue -- the constant PVCs are my worst symptom. Now I am getting them 1 of every 5 or 10 heart beats despite change beta blockers and adding florinef. I'm completely miserable at the moment 😢😫

One more thought!! I guess this means that for some of us our vagal response is both friend and foe (b/c it is still active, just over active or inappropriately activated) while others don't have the same vagal activity to lower their pulse -- making their phenotype more like traditional POTS with a sustained elevated HR in response to NE.

Thanks for the thoughts and experiences! I am beginning to wonder if I am in a constant state of reflex bradycardia then b/c my PVCs correlate with a low resting pulse. I think I posted a screen shot of my last heart monitor showing that my PVCs follow a diurnal pattern with more at night.

Hi all, I came across this while searching the internet and had never heard of it before - "NE also acts on β-1 receptors in the myocardium, resulting in a mild increase in myocardial contractility and myocardial oxygen requirements. However, NE has minimal effect on cardiac output and heart rate as the increase in afterload from α-1 stimulation results in a reflex bradycardia." NE = norepinephrine https://www.openanesthesia.org/norepinephrine_cv_effects/#:~:text=NE also acts on β,results in a reflex bradycardia. Has anyone ever heard of reflex bradycardia or has anyone ever had a doctor mention it? I will have moments where my HR drops into the low 50s, usually only in the morning after I take the dog for a walk (presumably when my NE and epinephrine would be elevated). I am usually asymptomatic when it happens, but I have always wondered why I would be in bradycardia. I'm no longer doing vigorous exercise like I used to, and I take a beta blocker, but only half of a single dose so I don't think the beta blocker should be having that much of an effect on my pulse. I think this "reflex bradycardia" could potentially be what is going on. Thoughts from the group? I know I have read older posts where someone will say that all of a sudden they are dealing with bradycardia while flaring or it will happen just out of the blue.

@Valerie mcleod -- I think it all depends on the person, as you have probably read in the thread here. Did your doctor give you advice on how much to start with? My EP said to start with 400mg morning and evening, but that was too much for me and caused intestinal issues. I usually take around 300mg-400mg a day and that seems to work for me.

@DysautonmiaMatt -- I agree, I am deflated 😆

@DysautonmiaMatt -- Thanks for the hormone level pic! Yes, my estradiol was 101 pg/mL but my progesterone was 0.5ng/mL on day 22 of my cycle. So, absolutely no progesterone, which matches what I have been experiencing for the last few months - a lack of ovulation. Prior to all of this I could tell when I ovulated b/c it was painful, but I haven't experienced that in a while. For the florinef -- I don't want to change too much at one time since then I won't know what is doing what, so what I've decided to do is to stay on the propranolol for now but try the florinef tomorrow morning. I only had one dose of Coreg today and didnt notice any difference. My BP was already running low on the propranolol before trying the Coreg. I also added the tri-Mag, not the one you ordered, but a similar version. It did nothing, sadly. Honestly, the only thing that I know is different is that I am less stressed at the moment (my boss is out of town and we are finally settled into our new place after moving at the end of July). I think the decrease in stress has lowered my BP, causing the PVCs to tick up b/c of poor blood return to my heart. I suspect this is happening b/c the PVCs get better when I recline for a bit. When I was trying to work at my desk today, I was getting PVCs sooo frequently! If this is what is going on, then hopefully the florinef will help raise my BP enough to reduce the PVCs. We will see! I am going to start with a low dose (0.1mg), drink lots of electrolytes (like usual), and check my Na and K early next week to see how they are doing.