My story and questions about POTS

[AmyRS]

I'm waiting to have a Tilt Table test done, and I have a question about POTS. First, here is my "story", sorry that it's a little lengthy!

About a month ago while sitting in a movie theatre I noticed my heart was beating really fast. When my husband and I came home I mentioned it to him and he listened and thought it was going twice as fast as his. We laughed, thinking it was nothing and decided to time it to see if he was right. His was 70 and mine was 130.

After realising the "normal" resting rate is anywhere between 70-90 I started to realise something was not right!! We monitored it for a while and finally headed to emergency just in case. I spent the day there while they watched me go from 115 to 160 by simply lifting my arm to scratch my face. At this point I had no other symptoms besides my heart beating out of my chest. They released me that same night, under the impression that the medication I've been on due to some neurological problems (Nortriptyline) was causing my heart rate to be elevated. They made me stop cold turkey that night until I could talk to my neurologist.

When I spoke to him, he said he has never had this happen before, only in elderly patients who had prior cardiac problems before taking the meds. Now we were getting a little worried, condsidering nobody knew why my heart was going crazy and it still hadn't slowed down.

About 2 days later I was having trouble breathing and quite a bit of chest pain. Back to the hospital, where they admitted me for 8 days to run a bunch of tests. Lung scan to make sure no embollism which was clear, blood work for magnesium, thyroid, blood surgar all clear, echo showed no signs, and holter monitor that recorded beats up to 188. This is all laying in a hospital bed!!! They also had me do a 24 hour urine test which has just come back clear yesterday.

Because of the previous neuro problems I had already had a brain MRI scheduled, which also came back clear yesterday. The hospital had originally released me thinking they'll know more when the urine test comes back and once we have the MRI as well.

When I visited my family dr after being discharged, she tried to convince me that this is generalized anxiety disorder and chronic panic attacks. I've only had difficulty breathing once, and I certainly haven't been anxious while watching a funny movie. I've been starting to feel like they're putting me off because they can't figure out what it is and they don't want to take the time to.

I saw her again yesterday (to follow up & get those results) and she didn't mention panic/anxiety once. I was so happy! She also finally admitted that she didn't know where to go next. I mentioned that I had found out about POTS and have almost all of the symptoms, and she agreed it was worth checking into and has put the wheels into motion to get me a referral for the tilt table test.

I'm not sure if the whole tachycardia thing is seperate from my neuro symptoms or not. One of the major new symptoms I have noticed since the movie theatre has been the colour changes in my skin. My feet and toenails turn a lovely shade of blue/purple when I am sitting up or standing and the area in my hands by my thumbs does the same thing. I also have incredible bloating when I'm finished eating and feel full much quicker than normal.

I have a heart rate monitor now and I have been checking my numbers when I go from lying/sitting to standing. I am usually somewhere around the 27+bpm increase and always at least into the 120s/130s. Yesterday I had a nap on the couch and decided to try it when I hadn't been on my feet for over half an hour. Still lying down my rate was 107 and when I stood up it went to 153!!!

My question is - I see all the sites mention at least a 30+ increase in beats on standing within 10 minutes. My rate always increases within the first 10 seconds (along with a brutal head rush) and goes down a little, and then comes back up and evens out in the 120s. Do you have to maintain that increase for the whole 10 minutes? Also, I have never fainted in my life, and I know that is a big symptom. When I first stand up and get that "rush" I feel dizzy and like I could black out, but I never do.

I'm so glad to have found this message board - I am already off work due to the severity of my other neuro symptoms and it's great to have a place to come to for support. I've already been to potsplace.com - that was when I realised how similar their symptom list is to what I have.

Thanks for reading all of this if you actually made it through!

Amy

[Michelle Sawicki]

Hi Amy!

Welcome to the board.

POTS is an ever fluctuating illness. Some days some of us will have extrememly high heart rates, other days they are a bit lower. Sometimes my heart rate goes up very high and then comes down a little....especially if I begin walking or flexing my leg muscles. BTW, I've never fainted in my life either. I've blacked out many times and I know if I didn't sit down when it happened I probably would have fainted....but not everyone with POTS faints.

I did have about 2 weeks, years ago, when my heart rates were completely normal. I guess I didn't have POTS then. Unfortunately this plateau of normalcy did not remain and I "got" POTS once again.

I'll fill you in on a little something since you are just beginning your journey: Most every POTS specialist has their own spin to the disorder. If you read research publications you will find subtle disagreements and sometimes downright contradictory information. POTS is still not fully understood and therefore the definitions are still being worked out.

I hope you can get to a specialist and be on your way to feeling better.

Michelle

[Merrill]

Hi Amy -- You've come to the right place. I did read your note all the way through--nicely done! Boy, sounds like classic POTS to me, based what you've described, on the medical articles I've read, and on my own experience with this. I had many of the tests you've had (minus the MRI/neuro tests): extensive blood work (thyroid problems can cause elevated heart rate), EKG, stress echocardiogram, 24 hour holter monitor, 24 hour urine, and a series of autonomic nervous system tests (sweat and a couple breathing) and most important, the tilt table.

I believe I've read that HR goes up 30 bpm in the first minute--and then stays elevated during the next 9. Mine went from 85 resting flat to 125 in first minute (40 bpm) and then went up from there. From what you wrote, you should have no trouble "passing" this test! It's the tachycardia that got me asking more questions of the docs and ultimately finding answers. You may also find that you're exercise and heat intolerant. Are you?

The bluing of hands and feet is also typical, tho I don't have that. I've also never passed out, though if I stand from sitting or lying too quickly I can get pretty darn dizzy. (Michlle, I always thought blacking out and fainting were the same thing?) Some people with POTS have blood pressure problems (and pass out on a pretty regular basis); some people (including me) do not experience blood pressure highs or lows or swings. It just depends on your own unique physiology. The fast heart rate is a compensatory measure for something off in your nervous system; the veins don't constrict in your legs enough when you stand, and you get pooling etc. It's all very complicated!

I hope you don't have to wait long for your test, because I'd like to share a couple "low tech" things you can start doing for yourself that should make you feel a little better: eat a ton of salt, drink a ton of fluids, and have your doctor prescribe compression hose (so you can get them paid for by your insurance). The first time I put those socks on I sighed with relief and wondered how I'd managed all my life without them. You can buy them at medical supply store--they're expensive, but worth their weight in gold if insurance won't cover the cost. The salt and fluid is to increase your blood volume, and the compression hose helps get that blood flowing to your upper body when you rise.

By the way, you wrote that you first noticed the tach when watching a funny movie; when I was on my holter monitor, my peak was reached when I was sitting down on my bed talking to my husband and laughing really hard!

I didn't have sudden onset as it sounds like you did... I've just always had fast hr and those other symptoms (exercise intolerance etc.) Your docs may prescribe beta blockers to slow your heart once you get a diagnosis. Try not to worry too much, even though this is a scary time as you're waiting for answers and to feel better. You WILL!

Hope this helps (and mostly, I hope it doesn't end up contradicting the advice and diagnosis of your docs! Listen to them, not me! This is just my experience!)

Take good care,

Merrill

[MightyMouse]

Here, here to what Michelle has said! Each doctor has their own way of thinking of this group of disorders. Even if you're sitting in the presence of an autonomic GURU, take everything with a grain of salt. There are still lots of unknowns and some docs think they "know" but the research has yet to bear out those ideas.

Glad you found us! Nina

[denabob]

as far as the hr goes... I've had days when I maintain for the first four minutes then WHAM spike up! The one thing I can say that probably any doctor would agree with is ...POTS is very unpredictable! symptoms wax and wane and are different in most of us! As the others have pointed out not all POTS patients pass out. I unfortunately do! But I have also been DX with NCS and that's where most of my passing out comes from!

This forum is a great place to turn! I've gotten many benefits from it!

My previous electro.cardio doc said that even if I went months without symptoms that it would almost positively return fantastic huh? that's when I found out that I was fighting a losing battle for my job! It all works out in the end I guess!

Welcome and Good Luck!

By the way follow Merrill's advice because those things really do help!

Deanna

[Jackie]

Thank God your treatment is falling into place so quickly and that you didnt' get the round around for long. I think you are well on your way to getting to the bottom of your true problem and it sure sounds like autonomic instability to me from everything I've read, all the people here, and my own symptoms and experience and dx. too. Good luck with the testing, don't fear the tilt table, and it sounds to me like you will be positive like me even without the injection. Everything can fluctuate so much I wouldn't worry about exact heart rate at exactly how many minutes, etc. The point is there sounds like there is instability and it will show up...everybody has it to a different degree and their bodies react to compensate at different rates at different times, etc. Keep us posted and welcome to the board!

[Michelle Sawicki]

Hi Merrill,

I was referring to when I'm standing up and everything around me goes black and I can hardly see and feel like I'm about to faint as blacking-out. Maybe graying-out is a better description... Whatever the proper term, it ain't pretty

Michelle

[Merrill]

Michelle--Gotcha! I had my first black out exactly as you've described it this week! I won't be rising from lying to standing in a nanosecond again! Gotta remember to sit for a spell first! It was close!