I'm so overwhelmed...

[Shawna]

I am a 46 year old female that had my 4th child 4 years ago - it was an emergency c-section and I also suffer from a blood clotting disorder and suffered clots in my lungs and left leg. Ever since this event I have experienced strange and scary symptoms. I would often feel a sinking sensation and then my heart would race. Every morning(usually 3-5) I awake and as soon as I sit or roll over in bed my heart is racing. I've had all tests - just sinus tachycardia is found.  I know something is wrong with me...the cardiologist just told me to relax and live my life. I do suffer from panic disorder, but what is happening in the early morning and even during the night at times...is NOT due to panic, although I add panic when I feel that heart rate soaring. I'm tired most of the time due to not sleeping and miss my old self. I live in Maine and there are not many Drs who even know what POTS/Dysautonomia is. I don't know what to do.  I would welcome any suggestions or advice. 

[HangingByAThread]

Hi Shawna,

 

I’m so sorry you are going through this.  I’m a mom, close to your age and live on the East Coast as well.  I know how hard it can be to go through this and still have kids to take care of.  You mentioned that you had testing but all that showed was sinus tachycardia.  What testing did you have?  Any autonomic testing or just cardiac testing?  I assume your doctor was able to catch an episode on a monitor?  I get a ton of sinus tachycardia but all my echos and stress tests have always been fine – which is a good thing but it doesn’t solve the problem of totally stopping the tachycardia.  Do you know how fast your episodes are?  What about your blood pressure………..is it normally high or low or does it fluctuate?  How about when you first wake up?  Have you tried to do the “poor man’s” tilt table test (blood pressure/heart rate readings lying down, then standing up for 1, 3, 5, 10 minutes, etc.)?  Does this only happen to you when you are in bed or do you have episodes during the day as well? 

[Shawna]

I've had a treadmill stress test - 3 week heart monitor, and echocardiogram...they clocked my heart rate at 150 but it was a normal sinus rhythm. All blood work looked normal but I know something is very wrong. My episodes almost always happen after being asleep for a few hours. Mostly when I awaken at 3 or so. Feels like an electric surge is rushing through my body. I sit up in bed and I feel my heart increase...then I, of course, add the blasted adrenaline to it! I usually can deep breathe and talk my way out of the spiraling panic...sometimes I call 911. This month I have called twice...they all know me there. Always settles by the time I arrive at the ER. They have caught me with a low bp once or twice...my blood pressure also surges during the attacks. I do take an ativan before the 911 call - I have never had a tilt table test...my cardiologist laughed at me when I spoke of it because I have never fainted. Sometimes healthcare professionals can be so uncaring. 

[Hippopotsamus]

I have had episodes like this too. EKGs always only show just sinus tachycardia. It really feels awful. It usually happens when I am in bed or resting and I get a sinking feeling then HR zooms up, feel like I'm going to die. I usually feel hot then cold and start shaking. (And have to use the bathroom). Episodes frequently happened after I did too much activity. I would feel like crap for days after too. I don't know what to make of them either.

[MomtoGiuliana]

Have you had a Tilt Table Test?

I also had symptoms like that years ago when I started having problems with POTS.  I was diagnosed with panic attacks but that never felt right to me bc they would come on randomly and I was not particularly stressed.

[Shawna]

I haven't had a tilt table test - the tachycardia always seems to resolve itself once I am up for a while.  The E.R. sometimes has me lay, sit , and stand and take my bp...I notice my top number increase but the bottom is good so they never seem too alarmed.  I'm wondering if my heart rate/bp are dipping too low while I'm sleeping.  I wonder if a sleep study would reveal any abnormalities? The dr.s always assume it's panic/anxiety  - they assumed that when I had my lungs full of blood clots too! I find that when I awake in the early morning it seems the heart goes zooming even before I sit up, sometimes just turning over, and then once I sit on the edge of the bed it really takes off. I also am sweaty and shaking. Could this be POTS? 

[yogini]

Hi Shawna, you could also look up POTS doctors in your area on the DINET website to get the tilt table.  You can also measure your HR and BP at home - and you will get a sense.  In dysautonomia, though, symptoms are usually worst while standing and the longer you stand, the worse they are.  

[Shawna]

It seems odd that it happens only in those early morning hours. I do suffer from panic disorder and I know what those attacks feel like - this seems more my body than my mind.  I will sometimes lay back down and the rate will slow...and then as soon as I get up again it beats harder and faster. I have been researching "extreme dipper" bp and maybe I'm getting a reflex tachycardia due to low heart rate and bp during sleep? I also thought that maybe it was hormonal - like surges of adrenaline and cortisol...I just wish I knew what the root cause is, or could find a Dr. that won't dismiss it as "anxiety". 

[HangingByAThread]

I think one of the biggest misconceptions about POTS is that doctors think you need to actually pass out to have it so patients (myself included) think we must not have it. I may not pass out but I get pre-syncope quite often as I'm sure many others do as well. 

shawna, I can relate to your tachycardia episodes. First of all, I never have tachycardia when I'm stressed but rather when I'm calm, when I'm daydreaming or sitting quietly without a care in the world.  Secondly, I get the worst tachycardia episodes during my sleep for reasons nobody has been able to explain to me. however, what I find the strangest is that it doesn't matter what time I go to bed.....it can be actually going to sleep or just taking a nap but I only have ever had the sleeping tachycardia 30-60 minutes into my sleep, never any other time during the night. I used to think maybe my heart rate is too low but all monitoring has shown that I get the lowest heart rates (20 something beats per minute) around 4 or 5 a.m. So I guess that doesn't explain it. I had a sleep study recently but, of course, I really wasn't able to fall asleep so that was useless.  I have always been advised to have a ton of salt but nobody seems to recommend it at bed time but a couple of months ago I decided I would have very salty late night snacks and pop a salt tablet. I'm not sure if it is coincidence or what but I've had less sleeping tachycardia and the severity and length of the episodes has decreased so that I didn't need to wake up my husband or call 911. My endocrinologist has also advised me to lie still when I have one of them and not get up (I usually feel like I will physically die if I don't sit up because I shake so bad but I'm trying to listen to him and see if that helps with the heart rate not shooting up to the 170s).  So far I've only had smaller episodes of short duration the last month or so so I haven't really had to try this out.  I also was told to apply ice to my neck and thus helps. I go to bed with a couple of really cold cans of seltzer in the night stand and the remote control for the air conditioner within arm's reach and find that helps a bit. I've also noticed that sometimes it feels like the tachycardia is a positional thing and some start when I roll over.  I also can only sleep on my right side or a little bit on my back if I'm really propped up. If I roll onto my stomach all **** breaks loose and I feel like someone is inflating my head with a bicycle pump. If I lie on my left side I can feel every heart beat and get ringing/squeaking in my ears so I have a ton of pillows to try to keep me from moving around.  You might also want to put the top of your bed on 6 inch riders like is advised by athe Cleveland Clinic. I sleep much better this way and have less episodes of waking but it is important that the entire bed is in an angle, you can't just prop yourself up with pillows. 

[mountain girl]

I experienced similar "surges" as you describe them when I first started with POTS symptoms. I could feel the tachycardia coming on so to speak, then my HR would go to the 160 area. I too had several visits to the ER where they diagnosed anxiety and normal sinus tachycardia. I had some when I was laying in bed doing nothing, and some that actually woke me up during the early morning hours.

It was not until I saw a cardiologist with my journal of symptoms, that I had the tilt table test done. I also experienced the trembling and shaking and felt like I could not breathe. I did not pass out in the beginning, but felt like I was fading away.

Do you have other symptoms?

I started keeping a journal of symptoms and what I had been doing. For example, I would get short of breath going up steps, or be exhausted after vacuuming, and my heart rate would be around 100-120.

I too would suggest trying to find a doctor, even if you have to travel, that is listed on the website, because as of now, it does not seem like you feel you have the correct diagnosis or treatment. 

[Shawna]

Thank you all for replying - you don't know what a comfort I feel in just knowing others out there understand what I'm experiencing...or maybe you do. It's Thanksgiving morning and I just called 911 - they checked me out but by the time they arrived the ativan kicked in and I chose to stay home. The ER always sends me away with 'palpitations".

After my C=section and blood clots I noticed that I would get these random feelings of "fading away" or like an inner dropping sensation....then my heart would kick into overdrive. The early morning tachycardia is the most frightening - I know it is not "anxiety" although it is similar feeling to a panic attack. My blood pressure is always elevated when they take it in the ambulance....like 144/81 - then drops to normal after lying on the stretcher for a bit. I am so tired and frustrated. How do you all manage the fear part of the tachycardia?