FairWy

Jvherenow, thanks for your response! Good to know others have intermittent symptoms. I am not diagnosed as there are no specialists here, but it's looking like IST or mild POTS. I'm just mainly miserable because simple exercise like walking produces high heart rates and they stick for the whole day. I can push through but the next day I am so tired. When symptomatic, EVERYTHING sends my heart sky high and it's the surges that bother me, not the high rate. I don't pass out. I am starting to realize though that my pulse pressure is real low shortly after exercise and when feeling bad, theres a difference in systolic and diastolic of only 15-20. I feel really bad for those who truly can't function with this. I'm only complaining because I used to be extremely athletic and an outdoor enthusiast and now I have to rest a lot and I can't think straight often and the fatigue is weird. I used to never, ever even sit down. Laying down for an hour or so now is just my new reality to recharge and I fall asleep without wanting to in the middle of the day now too. So bizarre. Anyway, best of luck to all in whatever this crazy illness is I wish you all the best!

Wow, hangingbyathread, we do have a lot in common! Your rates were super high! And I can't believe they told you you were nervous, I would have wanted to punch them in the face if they told me that! I'm sure an ablation was a wise choice for the AVNRT and your first ablation is usually a very successful location to have ablated. The second location definitely could have contributed to the dysautonomia. I have not had an ablation. If I do have a focal tachycardia it is too near the sinus node to be safely ablated and those, as you know have poor success rates and bad outcomes. And if there's a reentry tachycardia in my heart, the EP believes it is inside the sinus node itself! So, also not ablatable. My rates have never been over 160 though (at least from random tachy, obviously it's over 160 for exercise). Oh, and yes, I'm a 39 yr old female. I have 8 yr old twins so I'm quite busy no matter what. My husband is out of town several days a week but I work from home for our business so I am thankful to have flexibility with that! There is no day off around here so I just keep moving even though at times I feel like the room is moving underneath me, and I repeatedly try to remember what the heck it was I was doing as my memory fails me constantly, haha. I guess it's like running a marathon daily. Probably why you are thin without exercise, because your doing cardio all day just walking around : ). I've always been thin too but exercise is just a huge stress reliever, but I have to eat a ton to compensate. And, yep, I'm thirsty all day and night and have to get up usually twice in the night to go to the toilet because I drink so much water! I also have noticed a clustering of symptoms right before my period 3-5 days leading up and on day 1-2, then better for a bit. I also sometimes have issues mid-cycle as well. I will say I am thankful I haven't woken up with a 175 pulse, it's hard to catch because I have a hard time waking fully during but the tail end of the ones I have caught are around 125. My EP actually just made me go to a sleep doctor for all that and the sleep Dr was convinced I had narcolepsy even though I couldn't imagine. I had sleep paralysis, sleep hallucinations and daytime sleepiness so those are 3 of the 4 symptoms. Long story short, I don't have narcolepsy and I could barely sleep in any of the night or day studies, I was so nervous and miserable being hooked up with all those wires. I liked the ivabradine and given a few weeks it did help. I had very mild stomach discomfort for the first 3 days then my body adjusted. Occasionally I'd get the "strangled heart" feeling but it wasn't bad. After a month or so, my heart rate was great, not too low, and not too high, exercise was a lot easier, and I only had maybe 2-3 nocturnal tachycardias the 4 mos I was on it. The second I came off, my heart started some shenanigans again but then settled and felt better than ever...for about 2.5-3 mos...now, for the past few weeks, I fear the tachy may be returning, but hopefully it will just go away. I can't wait to see what the EP says in September since I haven't seen him since May. I'm just glad I'm feeling like I'm starting to figure out a pattern here so I have some good info to tell him.

Thank you, hangingbyathread for such a detailed and helpful response!! All of your answers help piece out what I am dealing with. And if a few more people chime in on even a question or two, that would be awesome! I am not symptomatic all the time but I was on ivabradine dec-apr so that knocked my heart down a bit for may, June, and half of July. Things (mainly tachycardia) started rearing their ugly head again recently, though I never got rid of random lightheadedness, fatigue, sleep tachycardia, and severe brain fog (to the point of amnesia). My heart and levels have been completely checked out, I'm 39, healthy, fit, used to be college athlete and continued major exercise until recently where my heart can reach 167 during a 3 min warmup. Target is 155 tops. My bad tachycardia symptoms are almost always 8am-11am, or anytime I shower, raise hands above head, bend over, eat, drink, get emotional, tell a funny story, etc. In the afternoon, I'm pretty good most days. I'm type A so never stopped much but now I find myself just laying down on the floor when I get so lightheaded. Exercise seems to really get my heart out of wack but I'm stubborn and I love it, so I keep doing it. After reading some posts on here, I did a poor mans ttt yesterday an hour and a half after exercise and it was BAD. I did one today, no exercise, and it wasn't great either but not as bad, still bad enough to be weary of potential pots or dysautonomia. And my standing blood pressure was real high on those. Have no idea what that means? My initial "diagnosis" so far is focal atrial tachycardia in mid-crista terminalis OR IST, Dr not sure, (my resting hr is 60-64), as well as possible sinus node reentrant tachycardia as on several occasions my heart got "stuck" going up/down between 90-155 even when laying down in ER for 6+ hrs. ANY thoughts would be helpful, thanks!!!

I've had heart/lightheadedness/memory and sleep issues going on since last November. I'm not going to go into any major detail right now but I am starting to suspect pots or dysautonomia of some sort. My electrophysiologist follow up appt is in a few weeks and answers to some of the following will help me in deciding what to bring up with him. Thanks so much!! Do pots symptoms have to be 24/7? Everyday? Only active during certain hours of the day? Has anyone had a period of time when the symptoms disappeared for a month or more then came back? Is it possible to experience pots symptoms sitting for extended periods of time, primarily lightheadedness? Can lightheadedness be present without tachycardia? Does anyone experience a pulse after sitting for awhile that goes up/down (not in a single beat, but over 30 sec), from say 70s-100s or 60s-90s then back again, occurring over and over for 30+ min? Is pots worse standing completely still then walking around gently or doing easy house work? Did anyone start out being diagnosed with pots after having a good fitness level? Were you able to stay on top of your fitness (at least maintain if even at a little lower level) despite high heart rates? Does anyone have nocturnal tachycardia, frequent urination, confusional arousals? Is it possible to have a milder pots (or well controlled) where most days can be doable just with tachycardia and a mild lightheadedness, brain fog and fatigue? Thanks so so much for an answers anyone can give!!! This will help me a lot!!