MeganMN

One of the doctors explained it to me by saying that when we exercise or run or get our heart rates up and then stop, our system cannot equalize and we get this dump of catecholamines and our body cannot regulate them, so we get all these weird symptoms.

Hugs. I know some of how you feel. I struggle with all of this most because of the burden on my family (husband and 3 little kids). It is definitely over whelming and scary and feels very disheartening. Hope you can find a new doc. You need someone on your team that is going to encourage and support you! So sorry you had this exper ience.

Thanks for all the info @CarolS and @Pistol !! This whole process has been so frustrating to figure out. I hope that I can get to Mayo eventually and do better testing. I am going to get a Holter 48 hour placed tomorrow because now I have tapered the Proprolol (which seems to be what was causing my dizziness), my dizziness is better, but my heart rate is high, of course, and I have had several episodes in the evening of having my heart rate drop into the 30's with almost passing out. So what in the world is that? Who knows. This all just seems kind of crazy and bizarre.

I definitely do! It is better when I take Magnesium, but I always have problems with this too.

@Stark thanks! I am in Minnesota and have thought about Mayo but my insurance is pretty wimpy. I was going to call and see what if anything they would cover out of network. It is only about 4 hours from me. Hard to figure out logistics with a 3,5, and 7 year old! Family vacation to the doctor? HAaha. Looking into it though. Up to this point, everyone (including me) thought the symptoms might resolve but here I am...... 😉

Ooooh, we have become coffee snobs! We built our own house and did not have electricity for a bit, so we had to have coffee kind of old-fashioned. My husband got a hand-pump espresso maker so we started making 2-shot espresso with Cuban (Bustelo) coffee and then we would boil the milk with a tsp of vanilla and 5 tsps of local maple syrup (for 2 coffees). Once the milk was boiling we would use a frother, pour it all in a mug and top it with a cinnamon and sugar sprinkle! We just recently bought an electric espresso maker to use on sunny days (we have solar power) and it even steams/froths the milk! I might have to try that syrup recipe though with the coconut sugar.

@CarolS We talked about that when I saw the EP but he seemed to think that it would be of no benefit because my blood pressure is generally normal and higher when standing. How would the beta blockers make one feel without increasing volume? I have found that when I take the higher dose of beta blocker, my dizziness is out of control (with normal vitals), but when I drop the dose of beta blocker, I get breakthrough symptoms that are equally as disturbing (lots of tachy and extra beats/ectopy and flushing/sweating/tremors). I am actually feeling fairly discouraged right now. I tried to lower the dose of Propranolol as he suggested and had a TON of breakthrough symptoms, but then today, when I tried to take the higher dose, my heart rate was perfectly normal and felt super dizzy and nauseated all day to the point of ridiculousness. I am super down. He will order the event monitor, but unless I stop the beta blocker, he is only going to see totally normal readings. I do not know what to do. See a neurologist? Someone else? He wants to see me again in 2 months. I hope I can make it that long because I feel HORRIBLE....

@Pistol and @jklass44 thank you both for the replies. At the moment, it may be a non-issue because I cannot afford the Corlanor. We will see what happens after I meet my deductible, but right now it would be $1000 for the first month! I am going to see if the Cardiologist would be okay with trying a lower dose of the Metoprolol ER, because the short-acting took care of my symptoms but made me too tired and depressed. THe pharmacist that I work with thought maybe the long-acting would be better tolerated. We will see when I message the doctor on Monday.

How long have you had POTS ? Diagnosed in November of last year, but had an episode 6 years ago that went away on its own. Has the symptoms got better since you 1st got POTS as time went by ? Unfortunately, at the moment, I feel that my symptoms have gotten worse. Initially, I was occasionally dizzy, occasionally tachycardic, and then at the beginning of November, I passed out. Since then, I have spiraled downhill and fight constant dizziness, fatigue, irritability, nausea, palpitations, etc. If I take the Beta Blocker, the dizziness gets worse. If I do not take it, all the other symptoms get worse. Ick. How much are you able to do ? (Drive, stand, walk, shop, get out and about) ? I guess I just do what I need to do because I have no choice. I work part-time, I take care of three little kids, I shop, clean the house, and generally take care of business. I feel like crap most of the time and feel like I might fall over at any moment, and try to rest as much as I can when I am home, but....... What are your Pulze and BP readings ? Before medication, I was at rest in the 70's to 80's with a BP generally around 110/80 and standing was in the 120's to 150's with a BP around 130/80. After medication, I run resting in the 60's with occasional drops into the 40-50's and a BP about the same as before. Standing is usually in the 90's with BP about the same.

Thanks for sharing, Shane. My symptoms started in earnest last November, and still trying to sort it all out, find meds that work and do not make me feel worse, etc. Glad you found this site! It has been extremely helpful for me. Welcome.

So, here is my hang-up...I really dislike taking medication. I am always super sensitive to side effects and almost always end up with weird stuff happening to me as a result. So I finally adjusted to the Propranolol and mentally felt okay with taking it. The problem is that, according to my EP, the dose I was on is too high and is decreasing my heart rate variability too much, and the lower dose gives me too much symptomatic tachycardia and palpitations. SOoooo, he wants me to try Corlanor. Unfortunately, I just read through all the warnings and side effects and it scares me. I just always feel nervous about meds. So give me your good, bad, and ugly about Corlanor! Mostly good, really, is what I need! Needing reassurance tonight gang. I feel so discouraged. The EP basically left me with the plan to decrease my Propranolol and see if I became symptomatic. If symptomatic, he wanted me to call his office and he would switch me to the Corlanor and order an event monitor. If not symptomatic, then he wanted me to just continue on the lower dose of Propranolol and follow up in two months. I know that there was this little part of me (maybe big part) that just wanted to not be symptomatic and bump along on a low dose of Propranolol and pretend like my life has not been turned upside down. Sigh.....

Try not to worry too much (easier said than done) until you see the cardiologist. When do you go? Sometimes, right blocks can occur in young, healthy people! also can be from hypertension or virus, heart valve issue, etc. have you had a normal echo? If you have had a normal then it is certainly less concerning! Hope you get answers soon- I am sure that is super stressful!

Is it hyper pots? Have you had high blood pres sure? What meds have you been on?

Eek! That would not be expected at all! How old are you? Any heart history?

Thanks for the info! Just got back from the EP. Seemed like a good visit. he agreed with the diagnosis this far and ran a few blood tests. He would like to see me switch from the Propranolol to Corlanor and get a 24 hour Holter, then re-evaluate. Sounds like an okay plan to me.

@potsiebarbie if they are originating from the top of the heart, then they are 'harmless' according to doctors, but annoying. Mine are worse when lacking sleep, stressed, if I drink caffeine, alcohol, exercise, etc, so pretty much all time- haha. We will see what they say after my event monitor, but in the past they have not been concerned. Drives me crazy though.

@potsiebarbie sorry- my medical brain at work again. I get early beats that cause a big Thump and breathless feeling. What happens is that the beat happens early and then there is a pause before the next beat. Mine have been getting weirder though. Instead of the top part of the heart contracting and then the bottom, I get these weird beats where the top contracts and the bottom doesn't so I feel icky. Hope that you can get in to see the Cardiologist sooner than later!

@potsiebarbie what did your doctor think? I have done some digging because I have had some recent episodes of dizziness with a slow rate and figured out that my 'normal' bigeminal (every other) Premature Atrial beats are non-conducted, which is making my intrinsic rate about 36-40! Eek! Wondering what ended up happening with you.

@bombsh3ll thank you for the post! I always appreciate the science behind things, which is probably one of the many reasons why this whole diagnosis has been frustrating, because there are so.many unknowns! I used to take deglycyrrhized licorice for reflux and it helped tremendously. Would that be the same formulary that is good for blood volume? If so, I have some in the cabinet. Too bad they cannot do Echos while standing up, might help sort out some of the stroke volume and cardiac output mysteries! It also makes sense that the beta blockers could actually make some symptoms worse. I found that the higher doses of beta blockers were much harder for me to handle. My feet and hands were frozen (more so) and on really bad days when the headaches and dizziness were at their worst, I found that I had absolutely no color in my face at all. My co-workers could actually tell if it was a good day or not based on my color (or lack of)! last week I decided to try to stop down to 10mg Propranolol instead of 20mg at a time. Since decreasing the doseage, I have actually found my dizziness has almost vanished and my hands and feet are less cold. Interesting. thanks for the food for thought!

@Tiredtoday I totally understand your anxiety. I, too, have similar feelings. I am going to see an EP tomorrow and while the hospitalist diagnosed me with POTS, and the Cardiologist in the hospital agreed, the follow up Cardiologist that I saw was skeptical and tried to pull me off the Beta Blockers. I ended up back on them because my heart rate skyrocketed again, and he referred me to the EP. I always worry, though, that if my symptoms do not fit in their box or do not line up with what they know, then they will discount me. I guess what I have to hold onto is that I used to be fine, and now I am not, and so even if they cannot agree or figure it out right away, I will just have to keep searching and researching until I can find someone who is willing to work with me. It is scary because we can get labelled and it is hard to go up against that, but I am just hoping my sincerity and ability to describe what is happening will help motivate people to want to figure it out. I wish I had more advice or comfort but I, too, am nervous! Good luck and keep searching for answers! We really have to be out own advocates!

@Pistol So I wrote a big, long reply last night and it looks like it never sent! Eek! Essentially, I said that I am trying to keep a running tab on my symptoms, but I am really struggling with the triggers because other than a few random things, I have been unable to really sort out WHAT makes things better or worse. Sudafed seems to make symptoms better, but fluid intake, compression, salt, etc do not seem to make much difference. Stress definitely makes it worse! I am wondering what I should be thinking about in terms of other testing. I feel like i should probably get a Holter/Event monitor but am guessing that i would have to be off the Propranolol for that? I am also wondering about Norepi levels, other Cathecholamine testing, etc. I have also wondered about ENT and/or Neuro because of the awful lingering dizziness/head pressure that remains in spite of everything. Any suggestions on what else I should ask the EP? Nervous about the idea of stopping the Beta Blocker for testing. I am always so tachy in the morning and then at night it is the opposite- I get unconducted bigeminal ectopy with rates in the 40's!

@Pistol they initially treated me with an antibiotic after leaving the hospital and I actually felt pretty decent. Then the house got sick with head colds and I feel back to crummy again. The only time I feel better is with Sudafed. I Have Not seen an ENT. My insurance is fairly crummy. I met my deductible last year and so I did not mind going to see extra docs, but now it starts all over again! Will see what happens, I guess.

Thanks! It took me by surprise for certain. I had a pretty terrible week and even had a pretty rough time through Wed. And then yesterday and today have been much better! No dizziness at all! Yay! Am optimistic that I might have some sort of plan after my appointment this week with the EP. Hope he is a good one.

@Pistol No it is good for me to have the reality check, even if it takes a bit for it to sink in! This past week was pretty terrible for me. Oddly, the last two days have been fantastic and the only thing different is that I was taking Sudafed due to head congestion. I am trying to be more realistic also about the good days and not getting too hopeful that the bad will it come back. Still soaking up all the things that you said, but I Do appreciate the honesty and support! It helps!

when I passed out in November they did a head CT and I had acute on chronic sinus inflammation. I never had sinus problems in Alaska, but everywhere else that I have lived it has been a problem and has been worse as of late, almost hand in hand with my POTS symptoms.