JennKay

@MikeO -- I hope we can solve this too!! I'm guessing they may not have seen this type of pattern before. @Sushi -- I've been offered flecainide too, but I really don't want to go in that direction for the reasons you listed. I'm secretly hoping this is something that can be ablated. An ablation scares the crap out of me, but if it would be curative, then I would do it.

Alright, just got my Holter monitor results back and am scheduled to chat with the EP next week. This is incredible, look at the pattern of my hourly PVC burden in the attached image. It matches my symptoms EXACTLY. My PVC burden is a lot worse b/w 6pm and 6am. I also had a run of a 4 beat NSVT at 3am, which completely freaks me out. My last Holter also caught a 5 beat run of NSVT. I've been reassured multiple times that it is nothing to worry about b/c my heart is structurally normal, but the fact that it is happening in my sleep at 3am is concerning to me. I was laying down in bed asleep and it was provoked! I've argued multiple times that I think my PVCs are more associated with parasympathetic dominance. I think this is more evidence for that, potentially. I've also read that sympathetically driven PVCs usually calm down at night. Mine clearly do the opposite. Do you all have any other thoughts? I am pretty shocked by this pattern. Hopefully this will finally get someone's attention.

@Nihongowasha -- Sorry to hear about your situation. My experience and symptoms have been similar to yours. I've found that propranolol helps me with most of the symptoms you listed, but I still struggle with ectopic palpitations, mainly PVCs, that can be very distracting and make me feel very fatigued. Am hoping to find something that will work for the PVCs. I'm not a medical doctor (I'm actually a research scientist) but I came across this a little while ago, the COMPASS 31 autonomic scoring system. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3541923/ The scoring system is explained in the article and you can Google COMPASS 31 and find a PDF version for you to assess your symptoms. Again, not an official diagnosis, but it might give you a bit of reassurance and is something you could take to your doctor.

@DysautonmiaMatt -- yes, I should probably consider seeing a chiropractor. I mean, at this point I am open to trying almost anything w/n reason! My main goal at the moment is finding an antiarrhythmia agent, preferably a beta blocker, that helps to eliminate the majority of the PVCs I experience. I am taking propranolol now, and this helps a lot with my other symptoms, but not the ectopics for whatever reason. I tried metoprolol and atenolol previously and they definitely made things worse. I am going to ask about trying Coreg after my latest monitor report is returned since other members of the community have had success with it. Fingers crossed Coreg might be the right beta for me!

@DysautonmiaMatt -- thanks for sharing that link! It was actually my normal obgyn who ran the tests. I contacted him b/c I was so desperate for answers and he ordered cortisol and a few other hormones but not the female hormones for whatever reason. My 24hr urine 5HIAA test was slightly elevated as was my vasoactive intestinal peptide (VIP). This meant a consultation with gastro and an abdominal MRI with contrast to rule out VIPoma and carcinoid tumors. The MRI came back all clear, which was a big relief. Then, I was referred to my endo after asking my primary provider for guidance. I've seen in the archives here that elevated serotonin is not uncommon in POTS/dysautonomia and I've seen at least a few others on here with elevated VIP. I don't think anyone really has answers. I feel like I read somewhere that the vagus nerve can stimulate the release of VIP, which I guess would make sense in my situation as I think my parasympathetic side is a bit more dominant. I have always, since my teenage years, had issues with standing for long periods. I get lightheadedness and can't think straight until I sit and rest.

@DysautonmiaMatt -- Thanks! I do think my cortisol was tested about a year ago. It was a morning blood draw and I believe it was normal. I have worn several long term Holter monitors. Am hoping to get results back on my latest one soon. I was referred to an endo and he thought I was going to have Addison's but after meeting he said he didn't think that was it either. I suspect a hormone imbalance is the main culprit for me, though. Not sure if a bunch of hormones are a little bit off or if one is the main driver. I have always struggled with hypoglycemia, which I know can cause adrenaline surges. I think the low blood sugar may be responsible for my 2-4am adrenaline surges. I am also about to see an integrative gyno who recently tested my female hormones. I registered as having postmenopausal levels of progesterone and I'm in my mid-30s! I know progesterone calms the ANS and this month I have felt better post-ovulation. I suspect I haven't been ovulating regularly, leading to low progesterone, which then causes my symptoms to flare. Am hoping to start progesterone to see if this helps. Definitely not excited about menopause if progesterone is an issue for me...

@CallieAndToby -- please keep us updated on what you find out about the low E, N and E + N levels. I am like you, my metanephrines were low or undetectable as was my 24 hr catecholamine urine analysis. Yet, I struggle with adrenaline surges, mainly b/w 2am - 4am almost daily. I started taking propranolol before bed and this has helped, but still hasn't fully eliminated the issue. I always wondered why my N and E levels were low with my maim symptoms - adrenaline surges and ectopics.

Sometimes I get transient tinnitus when things are acting up. One cardiologist told me parasympathetic activity can cause ringing in the ears.

@MikeO Hang in there! Hopefully it is just a "regular" respirarespiratory and not covid19. My 4 year old just had a week long flu-like virus. We tested him for covid19 2x and he was negative both times. Stuff is going around again...

@MikeO -- I too cook with a lot of parsley. Had no idea it could interact with medication. Wow! Thanks for sharing.

@RecipeForDisaster -- It looks like acebutolol can stimulate as well as block the beta receptor, so this is probably why it causes more alterness than other betas? And, that is definitely what is happening to me, when my HR drops to about 60ish, this is when the PVCs go bonkers. That is why I thought they were happening more at night before bed, when I am trying to relax and unwind for the day. These episodes also started happening more as I was gaining a bit more energy back and was trying to walk a little farther each day, per the suggestion and encouragement of my EP. The PVC episodes aren't happening when I walk, but a few hours after walking. It doesn't make sense to me!

@RecipeForDisaster - thanks! I will also ask my EP about acebutolol. I didn't realize it had more of those properties. There are so many beta blockers, I guess I will just have to keep trying until one works.

Thanks all for your responses. @Pistol -- I was thinking it might be worth trying another beta blocker like Carvelidol. I tolerate propranolol much better than metoprolol or atenolol, I almost feel like my "normal" self on propranolol except for the PVCs. It seems like many of us do better with non-selective beta blockers. Maybe the non-selective ones do a better job at balancing things compared to selective betas? It took me months to deal with the side effects of metoprolol. Anyway, I'm thinking my EP will want to see what the Holter shows before making changes. I will ask about Carvelidol, though. I messaged his office this week out of desperation and his PA mentioned we could try flecainide, but I would prefer to try one more beta blocker first. @Alex D. -- That is ridiculous!! Were you offered an ablation? Sounds like you have found something that works for you, which is great 😀 I would love a day where I only have a handful of PVCs. Do you feel pretty good on propofanone otherwise? @MikeO -- You are brave to have a drink! I've given up alcohol and am afraid of what would happen now with my PVCs... Would probably be up all night dealing with them after one glass of wine!

Hi all, I am continuing to struggle with PVCs. I have been taking 10mg propranolol morning and evening, which helps with my other symptoms (adrenaline surges, brain fog, fatigue, sleep) but does absolutely nothing for the PVCs. I am wearing a 2 week Holter which will finish in a few days and I am eager to see my % PVCs per day. Although, I suspect it will be a low total overall burden. Maybe I'll be wrong... Anyway, in the last month the PVC "episodes," as I like to call them, happen in the morning when I wake, late evening right before bed, and sometimes randomly during day. Like right now... I will be in bigeminy, trigeminy, or will have a PVC every 5-10 beats for an hour, then things stop abruptly and they don't bother me for a few hours. Has anyone had a similar experience, where their PVCs typically cluster at certain times of the day? Did you ever figure out a cause and solution? I can't find a trigger for the episodes, but the one thing that is common is that the episodes always start when I am NOT doing anything. When I'm up moving around they usually go away.

@Hippopotsamus You didn't mention what type of POTS you have, but I saw this article recently (or one similar to it) and thought it might be of interest. https://news.emory.edu/features/2019/02/fantastic-mind-hunger-nerve/index.html I have gained weight since my dysautonomia issues started, but I figured this was related to the fact that I haven't been able to be as active as I was previously. I miss the days where I could do pilates or go for a walk w/o my body (or brain) freaking out...

@MikeO -- Yay!! So glad you liked them. They are from a recipe book by Alex Snodgrass, The Comfortable Kitchen. I love all of her recipes b/c most are gluten free and can be modified to be dairy free or nut free as needed. I encourage you to check out her website: https://thedefineddish.com/ These are a few of my favs: https://thedefineddish.com/sheet-pan-harissa-salmon-roasted-veggies-with-cashew-crema/ https://thedefineddish.com/pan-roasted-chicken-with-cherry-tomatoes-feta-and-herbs/ But seriously, you can't go wrong with any of her dishes. I am sad it took me so long to discover her!

I too suspect that my dysautonomia symptoms were brought to the forefront following my two doses of the Pfizer vaccine. Prior to being vaccinated I definitely had underlying POTS-like issues. But about 3 months after my second dose is when I started struggling with ectopics and adrenaline surges. I never struggled with them previously and suspect they are related to underlying inflammation associated with the vaccine and having covid19. I have not gotten an mRNA booster, but would be open to getting a booster with one of the more traditional vaccines if they are ever approved in the US. I have wondered if the mRNA vaccines hyper-stimulate the immune system which leads to issues in some individuals, particularly those with high levels of inflammation to start.

These all look so good! I recently made some potatoe wedges that were salty goodness! Figured I could share the recipe here since potatoes are high in potassium and these are oven baked so they are a little healthier than the usual fried potatoe!! Sorry, didn't take a photo, but you will not be disappointed. You need - 1.5 lbs yellow potatoes cut into 1 inch wedges 1.5 tsp kosher salt 0.5 tsp each paprika and garlic powder 3 tbsp avocado or sunflower oil Toss everything together and bake on a lined 9x13 baking sheet at 400F for 35-40 mins, or until the potatoes are nice and roasted. Serve with ketchup and enjoy!

@MikeO -- it is fun to play with, right? I was just going through some of my older Kardias too. I have been meaning to add a recipe to your bon appetite discussion. I made some delicious salty potatoes recently that were amazing. Lots of salt and the potatoes have lots if potassium...perfect for dysautonomia!

Hi all! I have been searching for an online tool that will convert the QT to QTc from a Kardia ECG trace and think I finally found one. Thought I would share here b/c I know from reading current and archived topics that many of us are data driven, or use data to help manage our symptoms, report observations to our doctors, etc. Here is the link: https://www.mdcalc.com/corrected-qt-interval-qtc I know this is likely an approximate conversion and shouldn't be used as a substitute for a doctor in an emergency situation, but I've been wanting to find something like this since I was hospitalized in March for an unexplained long QTc...although I think it was probably from omicron, even though I was infected in January. One of the nurses showed me how to calculate the QT interval when I was admitted, which helped me understand the situation and was reassuring -- something I desperately needed. I will still be sending Kardias to my EP when needed or when I'm highly symptomatic, but this little tool will definitely help with my anxiety about long QTc issues. I hope others might find this useful too!

@MikeO -- Yes, am trying to get an appointment for a monitor. A request has been submitted but, you know, it can take a while to get an appointment. I called yesterday and I'm sure I will have to call again tomorrow for an appointment sometime next week. By that point this may have all passed (hopefully!!) which is super frustrating. @MTRJ75 -- I was only taking 5mg of propranolol 3-4x each day. This seemed to be helping for about a week, but maybe my body got used to this and readjusted? My pulse has been around 65 at 5mg w/o the side effects I had on metoprolol and atenolol. Both of those I took at low doses, 12mg metoprolol and 1/4 tablet atenolol, and both dropped my BP too much. When I spoke to the EP's office this morning they said to try 10mg morning and evening. This is still a pretty low dose, no? They also said to add the Corlanor at night. I think I am going to try the 10mg propranolol alone first so I know if this helps any. You only need 10mg propranolol in the morning? Does it wear off by the evening?

Thanks for sharing, @MTRJ75. I think I need to increase my propranolol to see if this helps. I know this is what my EP will tell me when I call his office today. Last night, the PVCs were ridiculous. I was definitely in bigemeny continuously for about an hour. It is so uncomfortable and makes me dizzy. They are frequent again this morning, but hopefully that will subside in an hour. I found this article about nighttime PVCs: https://pubmed.ncbi.nlm.nih.gov/32067918/ Based on the abstract, seems like the authors found patients with frequent nighttime PVCs had greater sympathetic tone as measured by SDNN. Encouragingly, after ablation the SDNN was less biased. Were you ever offered an ablation for your frequent PVCs? I know they are contraindicated in dysautonomia, but being in bigemny for extended periods of time has to qualify a person for an abaltion!!

@MTRJ75 -- my EP suggested I try Corlanor with this recent uptick, but I have a pretty low pulse normally, 60ish, when not having regular adrenaline surges so I'm hesitant to give it a go. That, and I had issues with long QTc in March of this year. I know the EP wouldn't intentially prescribe something dangerous to me, but I thought I saw that Corlanor can prolong the QTc interval. Did you start Corlanor for tachycardia? What dose do you take and how often? And, what is LDN? Thanks for entertaining my questions 🙂

@MTRJ75 -- I know this is a couple years old, but did you ever figure out the nightly ectopic issue? My experience with dysautonomia started with a week of intense ectopics and adrenaline surges about a year ago. After that week, they subsided substantially. I tried multiple beta blockers and they help, but don't eliminate the PVCs. Recently, in the last 3 weeks, my PVCs have returned with a vengeance and are probably more frequent than my initial experience with them!! And, they are also worse (1 happening every 10-20 seconds) starting about 9pm until about 9am. I don't tolerate beta blockers well, but thought I would give propranolol a try since I don't really want to start a stronger antiarrythmia drug like flecanide. The propranolol helps a little, but I wish it would help more. I actually think the propranolol helps with my other random symptoms substantially (twitiching, tremor, migraines, tachycardia), so I cant complain about that...but, I'm so sick of dealing with PVCs! Just curious if you ever figured out the trigger for yours when they happened regularly at night. Did they ever stop? Did they stop randomly? Did you find a drug or lifestyle modification that helped? I am convinced mine are driven more by my parasympathetic system, but no doctor I ask has an explanation for me.

Thanks for your input, @Jyoti and @MikeO!! I know I should just give it a try... Here I am, a 30-something year old woman and I'm having to talk to myself like I talk to my 4 year old..."You can't say you don't like it unless you try it." Will keep you all updated. Today has been better so far, although I was up at 3am dealing with them again this morning - a PVC every minute or 30 seconds until they finally calmed down after another dose of propranolol. @Jyoti -- And, I hope it helps you too! Yes, please let us know how it goes. The ectopics are soooo annoying...