JennKay

@Dia - Sure! Am glad to hear that someone else is in the same boat with me. I haven't had my serum folate tested, but I was taking 400mcg per day. I don't remember if I bought the supplement from Amazon or Walgreens anymore. On a side note, since posting this I have been working with my gyno to check my hormone levels. He checked them at 3 points during my cycle (day 4, day 11, and day 22 - or something close to these dates) to catch the levels during each phase. Turns out, I have the hormones of someone closer to 50 than their mid-30s. My estrogen ratio (as he described it based on the fractionated estrogen levels) is close to the menopausal transition level and my progesterone is non-existent. He has no explanation for this since I carried two pregnancies to term w/o issues, nor have I had any miscarriages. He mentioned something at our last appointment about the low levels of progesterone being potentially adrenal gland related, but didn't elaborate further. Lately, my BP has been running particularly low and my PVCs have gone crazy -- even more crazy than normal for me and I have had horrible PVCs in the past. My gyno is going to have me try progesterone in the second half of my cycle, which I am completely open to, but based on my PVCs at the moment I think I may wait another cycle. I am currently trialing Coreg (3.25mg) instead of propranolol (10mg) to see if this helps with the PVCs. The Coreg isn't helping yet, but I have only had one dose and I suspect I am in some weird transition phase b/w the betas b/c the PVCs are worse today than yesterday when I was on the propranolol. My EP is also going to have me try florinef since my BP Monday night was 85/55. I have no idea what is happening at the moment!! I haven't been able to figure out my triggers other than hormonal changes and oddly enough, when I am relaxed my symptoms get worse. Anyway, I am hoping the combination of florinef and Coreg will help balance things out.

I wonder if the sugar in the coke is what causes the issues for those who have mentioned soda being a trigger? I have problems with sugar - I essentially get the symptoms you all described for caffeine. I am also sensitive to caffeine and have eliminated coffee, which was makes me sad! I was only drinking half-caf or decaf to begin with, but I miss the smell, taste, and ritual of drinking coffee in the morning.

@DysautonmiaMatt -- Ok, I am game to give Tri MG a go since you have had success with it. Where did you order yours from? And, what brand did you order?

@Bailee -- I used to have my vision grey out when going from sitting to standing. Now I wear compression tights or knee highs at all times, except when sleeping. As long as I am wearing compression garments, this doesn't happen anymore. I don't take midrodine or anything else to help with my BP. I still get lightheaded if I am up on my feet for too long. On a good day I can cook dinner without getting lightheaded, but on other days I have to take a break or ask the hubby to take over. I find if I am able to exercise regularly I have better orthostatic tolerance too.

@DysautonmiaMatt -- Omg, I thought I was the only one dealing with "peanut butter" stool!! I am having issues and the moment and this is my current status. That and more frequent trips to the bathroom. @Bailee -- My struggle is more on the loose side than the constipated side. I have also seen a GI but he had no idea what was going on. I've also removed gluten and that made me feel better overall, but didn't help with my GI issues. I did eliminate dairy for a bit, but brought that back so I can add cheese, yogurts and other probiotics to my diet. I do find that yogurts help with my GI symptoms, as does ginger and mint tea when Im nauseous.

@DysautonmiaMatt -- Left us know if the magnesium combination works. I would like to give it a try if it works for you.

@MikeO -- Yes!! There is a place in my area called Local Foods and almost everything there is amazing, especially the salads. There is an Asian chicken salad that is a dysautonomia persons dream -- a soy sauce-based dressing and pickled cucumbers. So much salt and so fresh. I feel great after one of these salads!!

@MikeO, @Pistol -- I recently added a post-dinner walk to my daily routine, not intentionally, but mainly b/c it has been stupid crazy hot here in TX and this is the only time of day I can walk w/o my heart racing from the heat. In doing this, I noticed that my weird nightly PVC burden has subsided, at least some of the time. I was wondering if the two were related. Maybe so after reading this thread!! I have also noticed that I feel SO MUCH BETTER after a low carb meal vs a high carb meal. This also seems to agree with experience of others 🙂 I can be a salad/veggie/protein girl the rest of my life if this allows me to feel more like a normal person!

@MikeO - I don't know what my BP does after eating, but I'm curious about it now! I've been struggling today so if I have similar symptoms tomorrow I will definitely take my BP an hour after eating. @DysautonmiaMatt - Honestly, none of the betas I have tried have completely eliminated my PVCs. For me, they mainly help with my random bouts of tachycardia. I didn't do as well on the beta1 selective drugs for whatever reason, but you should give it a go! Maybe it will help and you can get some relief finally.

@DysautonmiaMatt -- Makes sense that it would be related to the Lexapro then. I hate trying new things since they can make things get out of balance, but I guess we have to try b/c we never know if it will help until we give it a go! Hopefully they subside soon. Mine seem to get triggered by hormonal changes. When they do get set off, sometimes I have to wait another 2 weeks for my hormones to change again. Oh the joys of being a woman! It is interesting that yours were set off by eating. My initial episode of PVCs that occurred about a year ago also started when I sat down dinner. I didn't know this until recently, but apparently eating is a big stress on our bodies. See here for how it impacts heart rate variability (HRV): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5882295/ Anyway, I just started wearing a smart watch to help me track things better, a Garmin, and this particular watch has a "stress" indicator. The watch measures your stress by monitoring your HRV. Low and behold, my stress usually shoots up when I eat a meal!! Before I started propranolol I would sometimes get tachycardia with eating and I guess this is why...

@DysautonmiaMatt -- sorry to hear about your episode!! I ABSOLUTELY hate when I'm in bigeminy, trigeminy, whatever-iny...nothing is as upsetting as frequent, repetitive PVCs. I can deal with all my other symptoms, but the PVCs are the most troubling to me. Have you tried a beta blocker before? If so, how was your previous experience? I've tried metoprolol and atenolol, both beta1 selective drugs. I didn't do very well on either, but metoprolol was particularly bad for me. I didn't start propranolol until April of this year after, my long QT episode. It helps with the PVCs, but sometimes they just keep happening anyway. I've also been offered corlanor, which I've heard may help with ectopics. Can you ask your primary care to start you on propranolol? I take half a normal dose b/c I'm so sensitive to the associated drop in BP.

@cly09 -- I am in Texas, so not near you at all. But, I have 2 young kids and totally understand how you feel! It is hard to keep up with the other moms sometimes. I get jealous of how other moms can be on their feet for long periods at museums or parks when with their kids. I have a few close friends that understand, but it is still hard!

@MikeO - True, I should try to get BP measurements at the same time. I noticed you get lightheaded when your BP drops to around 100/60-ish. That is me on a regular basis!! @MTRJ75 - we may have you beat down here in south TX! It is hot even for us...

@Pistol -- To add to that theory, I have been wearing a Garmin watch lately and more than once I have noticed that my pulse sometimes drops to the low 50s when I start sitting. This is often, but not always, followed by a round of PVCs. I think this fits the idea that upon sitting the blood just isn't getting back up to the heart - hence the drop in pulse and batch of PVCs. I'm thinking the PVCs are a consequence of the body trying to compensate for the sudden drop in heart rate...maybe a sharp increase/dump of adrenaline/noradrenaline to try and get things going again by constriction and speeding up the pulse?... I'm not sure there is much we can do about this except keeping up with fluids and wearing compression garments.

@MTRJ75 -- I am kind of like you with the sitting vs standing. I get light-headed and loopy after standing for a prolonged period of time. Even if I am up walking I can get light-headed. But, the worst of it, the PVCs and other palpitations, flare up when I sit down. I haven't been able to sort it out. I have no idea why it happens. I asked my EP and he has no clue. The only thought I had was that when walking around my leg muscles compensate for the poor vascular response. However, when I sit down, my leg muscles are no longer contributing and the blood pools in my pelvis. That is the best I have at this point! I did add an abdominal binder to my compression tights and I think this has helped my symptoms when sitting, but only a little bit.

@Pistol -- thanks for the love ❤️ We got our PCR results back and we are all negative. But, my husband and I are pretty certain we all have covid19, just that our immune systems are responding appropriately, which makes us feel so crappy. I'm still running a low fever today, around 99.5F. My symptoms today are the fever and palpitations. Darn those freaking palpitations!!

@outofadream -- I had covid19 in January 2022, so presumably one of the first omicron strains. I had 2 Pfizer vax doses, was not boosted, and had not previously been infected. My main symptoms were increased PVCs, much higher resting pulse, fatigue, and fever. They were most intense for the first 24 hrs of fever, then decreased after that. I did run a low fever for about 7 days, around 99F. I generally felt the same after covid19 as I did before, but it did take a couple weeks to get back to my previous "normal" level. Weirdly, I tested positive for covid19 again (by PCR) in March 2022 and was hospitalized at that time b/c my QTc was prolonged to a dangerous level (over 500ms). My QTc corrected with IV magnesium and potassium, but neither level was below normal when I went to the ER - however, they were both on the low end of normal. The internist said I was PCR positive b/c of my January infection, but I believe I had a second infection. I asked my EP what he thought of the incident and he couldn't definitively say if my QTc issue was covid19 related or not. Who knows! I have since started propranolol for my ectopics, mainly PVCs, which come and go. I take 10mg at night and this has helped a lot with my sleep. I still wake multiple times a night, sometimes with my pulse elevated, but I can usually get back to sleep again with the propranolol. I am suspicious we (me and my family) may be infected again with omicron ba5. We all have some viral something or another and my pulse was elevated a good portion of yesterday afternoon, similar to when I was infected in January and March, and I've been very fatgiued with a low fever today. Here's to hoping it passes quickly since we've already had omicron previously. I don't know how it can be avoided at this point, especially if you have young kids. I think the infectivity of ba5 is like twice that of the measles...

@MikeO -- I am laughing 😃 and agreeing at the same time! Men don't have the same estrogen drop, but I could understand testosterone declining with age and how that reduction could be associated with hormone symptoms.

@MikeO -- sorry to hear you deal with that as well. Guess it isn't just a female issue! Do you get cold sweats at night too? Those are the worst. But, I did have an appointment this afternoon with my OBGYN and my initial estrogen/progesterone tests are back. Only one is left outstanding since we took multiple time points over my the last month. Anyway, my estrogen is at a menopausal level/ratio and my progesterone continues to be postmenopausal. We will wait on the last hormone panel, but it sounds like HRT is a potential option for me. My OBGYN said we should address this now since I'm in my late 30s and not wait until I'm closer to 50. Crazy! Also, when my palpitations ticked up this past month my estrogen ratio was at its lowest point. He said it would make sense that the drop in hormones would increase the palpitations. Hopefully we are moving in the right direction here 🤞

Thank you all for your responses! I will try to track my BP when I get a hot flash going forward. Lately they have been happening in the middle of the night. My mom said this would happen to her during perimenopause/menopause so I just assumed it was hormonal. I didn't think to associate it with a drop in BP, but I guess that makes sense, particularly if something is setting off the vasodilation...like some weird autonomic something or another. I will read through the older post on EDS as well

Hi all - question to those that have been formally diagnosed with EDS. How were you officially diagnosed and which doctor made the diagnosis? Am asking b/c my OBGYN has suspected I have EDS based on my symptoms and her previous experience identifying patients with EDS. But, I asked my EP about getting a genetic test, since he is the one managing my most prominent symptoms (the ectopics and adrenaline surges), and he didn't think it was relevant. I've never sprained anything in the past and am not hypermobile - I'm not double jointed and can't hyperextend anything. My general orthostatic intolerance and cardiac symptoms fit some sort of dysautonomia, but not POTS. Am still working to get my female hormones sorted out as well b/c lately I've been dealing with what feel like hot flashes... Secretly hoping I'm in early menopause and hormones will make me feel better! Thanks ahead of time for your responses 🙂

@flowntheloop and @watercolorist -- my symptoms are definitely influenced by hormonal changes. I was told by the first cardiologist I saw that hormones weren't an issue. But, I subsequently found a female cardiologist who confirmed that our cycles will affect how we feel. I have read on the archives here that some women do well with an IUD that stops ovulation while it doesn't help others. For me, I feel better in the second part of my cycle, when estrogen is lower and progesterone is present. I suspect estrogen increases my symptoms - lowers my BP and effects my circulation in a way that isn't helpful to me. I am working to get my hormones checked over my next cycle b/c I suspect my progesterone is actually running on the low side. I really struggle with ectopics and apparently higher estrogen levels are associated with more PVCs: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8617862/ @Pistol shared an article with me previously that discussed the association b/w female hormones and POTS. I can't find it now, but it is on here somewhere!!

Spoke with the EP today. He thinks my increased PVC burden at night is related to my vagal tone. He thought that potentially my vagal tone is high, which lowers my heart rate and allows the PVCs to appear. He didn't offer treatment options other than maybe trying flecainide. Will need to think on it. Side note - I have been trying to figure out how my female hormones play in to all of this and I was finally able to get my estrogen and progesterone tested. Turns out, I have postmenopausal progesterone levels...which is crazy b/c I'm not even 40. So, my gyno wants to try progesterone and the EP approves. Apparently, progesterone can shorten the QTc interval, which would be beneficial in my situation. I generally feel better in the second half of my cycle as well, so maybe I make some progesterone but not as much as I should for my age...or maybe it is b/c estrogen is lower during that phase. Here's to hoping it helps! I've read in the archives that some women do better with progesterone or estrogen, while others don't. Will keep you all updated for those who are similar age or have similar suspicions.

@MikeO -- Yes, it took me a second too. The grey line across the bar plot is the heart rate in bpm. The y-axis on the right side of the plot corresponds with the heart rate. Looks like my average heart rate stays b/w 50-100 overall. The blue bars in the bar plot are the hourly ventricular ectopics recorded by the monitor. The y-axis on the left side of the plot corresponds with the %PVC burden. So during most of the day, my %PVC burden is usually less than 1%. But at night, it can be as high as 5-6%.

@Sushi -- I did see that thread and was wondering if that was applicable to my situation. I will ask my EP about it at our appointment Monday. I would love it if this is true and would correct things. If I remember correctly, you had been using flecainide for Afib, right? And, your post said you had to stop b/c you developed heart block. You have been a show that your Afib is not sympathetic-driven? And if so, how did you do this? I am beginning to think that my adrenaline symptoms are a reaction to the over activity of my vagus nerve, that is the only way my body can correct itself.