Have several questions! Can anyone please help??

[FairWy]

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!!

[HangingByAThread]

Hi FairWy,

I'm no doctor, obviously, but will try to answer these questions with what I experience with my own symptoms and things I've picked up along the way.  Please note that with Dysautonomia the only thing we all have in common is that we are all so very different.

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?  I have some variation of symptoms every day but nothing is constant.  Some days are worse than others.

Has anyone had a period of time when the symptoms disappeared for a month or more then came back?  Unfortunately, no, I haven't

Is it possible to experience pots symptoms sitting for extended periods of time, primarily lightheadedness? I'm at work right now and have been sitting for a couple of hours without getting up.  I'm getting pretty lightheaded (my blood pressure tends to be low when I'm sitting quiet).  I'm going to pop a salt tablet and then take a walk to get my circulation going.

Can lightheadedness be present without tachycardia?  Yes.  I have lightheadedness more often than the 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? Never checked.

Is pots worse standing completely still then walking around gently or doing easy house work?  The "kiss of death" for me is standing still (like on store lines, while waiting for my children to try on clothing in a dressing room, or food shopping (I do ok for a while but if there's a big line, I need to sit down).  I can walk around gently for a while but need to keep sitting down every once in a while.  House work was becoming impossible for me - I would sweat bullets but since taking meds, salt, compression stockings, etc. I can now get stuff done but I use a dishwasher instead of standing still at the sink doing dishes and I still get pretty sweaty using the vacuum.  Funny thing is that if I stay home and do light house I'm ok.  My ideal day is a weekend where I do a little house work, then load the dishes, sit and watch tv with my feet up, then fix myself some food to eat, then sit on the recumbent bike and read a bit, put the laundry in, etc. (as opposed to going to work).  I think the key for me is varying my positioning every so often and not doing one thing for too long - this prevents my heart rate from being too low or too high and my blood pressure from being too low or too high.  Also, I can eat and drink all day long and control my temperature (not get too hot or too cold).

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?  I never was into exercise.

Does anyone have nocturnal tachycardia, frequent urination, confusional arousals? YES!!! this is the most horrible part of all of this for me.  I will wake up one to two times a month with horribly scary tachycardia that lasts for a long time.  I wind up terrified and barely able to move.  I keep a glass of water on my nightstand and a cold can of seltzer nearby.  When I am woken up I grab the air conditioner remote and blast it.  I sit up and put the cold can on my neck.  I used to have to get up to pee all night long until I followed a Cleveland Clinic handout that said to elevate the top of my bed by 6 inches.  I bought metal risers and I was finally able to sleep through the night.  I can't remember the medical reasoning for it but the doctor said my body would produce less urine.

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?  I think I fall into this category.  Everyone agrees I have Dysautonomia and Orthostatic Intolerance (among other things) but depending on the doctors I've seen I either have "POTS", have "POTS-like symptoms", have "Orthostatic Intolerance with Inappropriate Sinus Tachycardia", have "both Hyper Vagal and Hyper Adrenergic Autonomic issues" or have "Delayed POTS".  Vanderbilt didn't even want to give me a diagnosis of POTS because they didn't want to "pigeonhole" me into a category and prefer to treat my symptoms.  I've had 3 tilt table tests and only had horrible issues with one (was bedridden the entire day), but failed the poor man's tilt table test at home several times.  I saw many doctors and it was a long journey but I noticed that I improved over time.  Little things like salt, compression stockings ALL day, tilting the bed, recumbent bike daily (even if I can only handle 5 minutes some days) really made a difference but I have to be consistent.

I hope your EP is able to help you.  My EP is wonderful but there's really nothing else he can do for me other than to hold my hand here and there and send letters all over to get me seen by specialists.

[FairWy]

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!!!

[HangingByAThread]

Wow, FairWy, we have a LOT in common (except I was never one for exercise - but I was always too thin so it didn't matter).  My worst symptoms also happen in the morning (usually on the way to work), during showers, bending over, and raising my hands is a definite no-no.  I think I'm worse in the mornings because I wake up with low blood pressure and haven't eaten or drank anything for hours (during the day I eat and drink non-stop).  My throat feels as dry as the desert when I wake up.  Most times my body gives me a warning I'm doing something it doesn't like and if I stop what I'm doing I'll be ok.  I'm not sure if you are male or female but my worst nighttime symptoms only happy right before my period - that time is **** for me.  I'm going into that period now and I'm actually terrified to fall asleep because who wants to wake up disoriented and having a heart rate of 175? 

Have you ever had a cardiac ablation?  I had one in about 2001.  This was way before my dysautonomia symptoms started.  What happened was one day I was at work and I took a bite of my sandwich and all **** broke lose.  I thought I was having an allergic reaction and then a heart attack.  I couldn't walk or really talk and they called me an ambulance.  Of course, I was fine when I got to the hospital.  Took them a while to figure things out - people accused me of being "nervous".  Every workup came back normal and the cardiologist said I had only a 1% cahnce of having it so he put me on a 30 day event monitor.  I got so frustrated when it didn't happen again but suddenly on the 29th day of wearing it all **** broke lose.  After that it happened every few days (heart rates of 210-230!!!!!).  Turns out I had AVNRT (AV nodal reentrant tachycardia).  It was "fixed" with an ablation.  I did good for a while, had a couple of kids (no problems during pregnancies) but then the tachycardia (to a lesser extent) crept back - mainly at night but I lived with it because they didn't find anything wrong.  The tachycardia wasn't that bad so they told me I should try to live with it.  I did but several years ago it got really bad and I had light dysautonomia symptoms (just didn't know what it was).  I had another ablation about 2-1/2 years ago.  At that time I was told I had a high atrial tachycardia.  Then the dysautonomia really started. 

My EP suggested I try Ivabradine if the Methyldopa doesn't help me but I've been a bit scared to stop the Methyldopa because I've improved a lot but whenever I have a set back I think about trying it some day.  Do you feel the Ivabradine helping you?

Other than feeling like falling apart, they tell me that I'm in great shape (other than bradycardia - heart rates as low as 24 during sleep) and heart block.  My heart is otherwise perfect and I ace all the regular cardiac testing.  Sometimes I wonder if the dysuatonomia was somehow caused by the two ablations.

[FairWy]

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.

 

 

[jvherenow]

I have lightheadedness without tachycardia. I haven't worn a monitor yet (although it may be coming soon) but I've seen my HR down in the low 40s a few times. 

My symptoms definitely come and go. I've had a whole weeks where they were so mild I was able to be fully engaged with life. The next week, in bed for more than half of every day due to shortness of breath, dizziness, and brain fog. My period definitely affects my symptoms...just like you, 1-3 days before and 1-2 days during you can pretty much just put me to bed. But the higher dose of mestinon (90 mg TID) is helping keep me functional in the midst of that.

I was super athletic before this happened but now if I do just 30 minutes on the ellipitcal or hiking or 40 minutes of weight training, I'm wiped out the next day. So, I'm trying to do shorter bursts of exercise throughout the day (5 minutes yoga, 15 minute walk, 5 minutes calesthenics, 10 minutes ellipitcal...all hours apart). 

I think the big thing to keep in mind is that dysautonomia makes NO SENSE! I'm working on trying to notice reality (I have a big denial, I can shake this off history) and then accept it instead of being totally pissed all the time

[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! 

[vepa]

From my experience, I can say yes to most of this. I'm not diagnosed with POTS, but with NMH (Neurally mediated hypotension). It's very similar to POTS, with the difference being that, in addition to my heart rate usually spiking, my blood pressure drops drastically when I sit up or stand. I was only very recently diagnosed, but have had symptoms since I was 12 (I'm 25 now).  One of the reasons it took me so long to get diagnosed was because my symptoms never really affected my day to day living for a long time. I would get really dizzy and my vision would black out if I stood up too fast, I often got nauseous in the mornings (which I figured out I could fix by downing a gatorade first thing) and I passed out a couple times when up in the mountains in the summers, but aside from that I played sports and was very active and seemingly healthy as a teenager. My family and I just dismissed the symptoms as a sensitivity to altitude, since I grew up in Colorado, and laughed it off. I never sought medical treatment for it. It was certainly not an everyday problem and I would go for months without any issues before it popped up again.

It wasn't until recently that everything took a turn and started affecting my life in a very real way.  I started getting heart palpitations, blacking out every time I bent over, feeling constantly exhausted, getting dizzy from sitting up for too long, and having absolutely no tolerance to cold temperatures. That's when I decided it was time to see a doctor and received my diagnosis. Funnily enough, similar to what you describe, when I went into a cardiologist appointment and they stuck the pulse ox on me for my initial work-up, I was sitting still in a chair and my heart rate went from 70 to 100 to 80 to 120 in about 2 minutes. The nurse was so baffled by it that she had to get another nurse and a different pulse ox to make sure it wasn't a technical issue. I almost laughed at the look of confusion on their faces. 

I often get lightheaded without tachycardia, and in fact, sometimes when I'm feeling at my absolute worst and I go to check my heart rate and expect it to be really high, it is actually extremely low (it can drop down to 40s if I overexert myself). 

I can also say that for me, standing completely still is ABSOLUTELY worse. If I'm sitting, my heart rate is between 70-90. If I stand up, it jumps to 120+. But if I walk around, it drops to low 100s. I'm not sure why this is, but I know that if I try standing completely still for more than a few minutes, I start to feel as though I am going to pass out. Whereas if I'm up and about and moving around, I usually feel relatively fine. Turns out that I've also naturally developed some countermeasures without ever realizing it before to deal with this. For example, I often stand with my legs crossed, or lean up against walls or furniture, and now I'm learning that these things lower my heart rate. 

Unfortunately, with my health in its current state, I have not been able to maintain my fitness level. I used to be very active. I would run, play sports, climb mountains, etc. But recently my exercise is limited to walking my dog a few times a day and even that can take a toll. I almost passed out in the park with her today. But I'm hoping that once I get this under control again, I will be able to get back into my old hobbies. 

As for your last question, I have a heart rate wrist band that I wear, though I often question it's accuracy, but almost every night it will say that my heart rate spiked extremely high while I was sleeping. Sometimes it goes up to 140+, which doesn't even usually happen during the day. 

[Lemons2lemonade]

Yes, for me standing exercising always aggrevates it about 1.5-3 hours afterwards. I swim now instead and it is a much better option for me. When I had pots symptoms exacerbated, it would always escalate at sunset. I do get lightheaded from sitting long periods of time and get lightheaded without tachycardia. For me standing still is a lot worse than moving around like housework etc. And yes, there are good and bad days.

[Lily]

I'll answer a few of your questions, too.

Has anyone had a period of time when the symptoms disappeared for a month or more then came back?

- No.  This has not happened to me.

Is it possible to experience pots symptoms sitting for extended periods of time, primarily lightheadedness? 

- Yes, oftentimes I feel lightheaded when sitting in a chair with feet on the floor.  If I have the feet up, or I'm sitting cross-legged, then no or lower symptoms.

Can lightheadedness be present without tachycardia?

- I don't wear a heart rate monitor, but I seem to have lightheadedness with hr elevated but not over 100 bpm.

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?

- No, I do not think this has ever happened to me.  More likely I'll be sitting with my feet on my desk and my heart cranking away at 96 bpm.

Is pots worse standing completely still then walking around gently or doing easy house work?

- Standing still and walking slowly will give me POTS.  Walking quickly makes me feel better.

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?

- I was never an athlete, but I can still work out however I want to.  My limit on cardio is attentional, not POTS-related.  Gym time for me is weightlifting, and I got an under-desk elliptical trainer so I can get in the "cardio against resistance" in a way that I will actually do it.

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?

- Yes!  This is me.  I'm a college professor on the tenure track at a teaching-oriented university.  Standing up for 1.25 hrs to teach is a problem, but I can sit.  I can work with my feet on my desk.  I can take a nap if I need to.  It is a very flexible job, but it comes with self-doubt built in.  Until you get tenure, you constantly worry that you won't get it, that you're not good enough.  But if I have to give more than I have in order to get tenure, then I shouldn't have it. The brain fog is my biggest concern, job-wise, but if I keep the blood pooling under control with positional adjustments then it is workable.  College professors are allowed to be eccentric, so sitting on a table to teach works.  Plus, I have combined-type ADHD, so it also works with my hyperactive nature.