New Person Needing Opinions.

[Statix]

Hey everyone, my name is David and I am 24 years old. I joined to try and get some answers to what might be going on with me recently. After searching the internet with what is going on with my heart rate, it seems that POTS is the only thing that comes up. First, let me say I have an anxiety disorder that has left me basically housebound, so it's very hard for me to travel far for tests and such. Let me start with my story.

All through December I seemed to have had a persistent chest and back pain. I noticed the symptoms were getting better day by day rather than staying the same or worse, so I self diagnosed with a pulled muscle or something similar. On Jan. 8th, I was walking down my stairs and had a near fainting experience, which never happens to me. My heart rate jumped to 140 and I was also having an anxiety attack with it. I called the paramedics and everything checked out and didn't see any reason I should go to the ER. The next day, my heart rate jumped when I stood up so I called them again. With some serious convincing, they talked me in to going to the ER just to get everything checked out. Everything did in fact check out (chest x-ray, EKG, blood test). Fast forward to today, I am still having a 30-40 jump in heart rate when I stand. I do not, however, have any other symptoms that seem to be related with POTS. This has made me very confused as to what this is or what could be causing this. I remember having something similar to this about two years ago that lasted a week or so and eventually went away.

In conclusion, this is the 15th day of me having these symptoms of tachycardia upon standing, but I have no other symptoms associated with the heart rate increase other than anxiety and some palpitations. I am trying to get to my doctor on Tuesday, which is familiar with POTS (my mother talked to him), but he said he would like to do some other tests first. Any help would be greatly appreciated. It just seems that being a 24 year old male with a sudden onset of these symptoms would be fairly rare for it to be POTS from what information I have gathered. Also, without any dramatic changed in BP that wouldn't be considered normal fluctuations upon sitting and standing doesn't really seem to make sense to me. I have found myself constantly checking my heart rate and BP with my home checker. One last thing, it seems that the worse of the symptoms are when I wake up, and the longer I stay up, the lower my RHH gets. When I have been up for 12-14 hours, my RHH will be in the mid 50's low 60's. Even with the lower RHH's the standing will still raise it 30-40, but it won't get in tachycardia ranges. Only in the morning when my RHH is higher will my heart rate get in the 110-130's with standing.

Thanks for reading and hopefully I can get some answers.

[FarmerAmy]

I'm very sorry you are dealing with this! I suffer from anxiety, too, but I have found ways to keep it under control. I wish you could, too!

Have you been to a cardiologist? That is the doctor who would most likely diagnose you with POTS. And the tilt table test is the most reliable way to confirm or deny a diagnosis.

It does seem to me that the tachycardia and the anxiety are related. Anxiety just does such horrible things to your whole system :-(

Good luck!

Amy

[SeattleRain]

Hi David,

Welcome to the forum.

I'm a 24 year old male as well and have symptoms similar to yours. When I stand up, my BP will stay roughly the same or a tad bit higher (although sometimes I feel a strong throbbing pressure in my face like my BP is increasing). My RHH will drop through out the day and end up in the mid 50's to 60's at night. Again, like you, my HR increase when standing at night will still be 30 - 40 but won't go as high as it did during the day. When my onset of POTS symptoms occurred I also had a really scary near fainting experience walking down my stairs. It was like an instantaneous sensation of being at the closest point of losing consciousness/fainting. It wasn't preceded by feeling light headed or any warning that I'm about to pass out.

If you haven't already, check out this page here at DINET:

http://dinet.org/what_causes_pots.htm

Do you feel like your back pain is related to the onset of your symptoms or possibly just a coincidence?

When you stand up, does the increase occur immediately? When I stand up, I have 5 - 10 seconds of slower, throbbing (heart) contractions which are very uncomfortable then, my HR will shoot up.

Even though my BP reads out normal I'll tend to feel a little light headed or like my head is starting to go numb.

Good luck with your doctor visit - I hope you find some answers!

Make sure to let us know how it goes!

[Statix]

Rain, it sounds like you and I have almost the exact same thing. I do believe my heart will stay thump harder once I stand then start to speed up like yours. Sometimes I think it's almost an instant speed up of heart rate.

Farmer, I am unsure if I think the chest/back pain are related, I do know, however, that I lost 13 lbs that month because of my anxiety/pain. I didn't really want to eat because it made things worse.

With my anxiety condition also comes very little exercise and activity. I usually sit just about all day with exception of walking around a bit and going up and down two flights of steps a few times a day. I try to jog in place sometimes, but with my heart rate going up, I find it uncomfortable to do it until my heart rate decreases once I have been up a while.

I do live near Nashville, so if it comes down to it, I will just have to suck it up and head down to the Vanderbilt center to perhaps get some answers.

[SeattleRain]

With my anxiety condition also comes very little exercise and activity. I usually sit just about all day with exception of walking around a bit and going up and down two flights of steps a few times a day.

I wrote up a Microsoft Word document that I printed out and gave to one of my doctor's. This is what I said in part of it:

"Working from home, I spent all day sitting and did not get out much at all (most activity came from walking up and down my stairs to get food, etc".

Another interesting coincidence!

This was describing the majority of the past 3 years or so. The previous 6 months before my POTS onset I was doing high intensity cardio and had a strict diet. I lost a lot of weight and was only a few pounds above what would be considered a perfect BMI. I had also spent a couple weeks in Florida the previous month walking around in the hot sun all day and dropped another few pounds.

However, the week of my POTS onset I let myself go and wasn't eating well and was not exercising at all. I think my overall history of poor diet and lack of exercise has played a role in this. I definitely felt like my heart was weak well before my POTS onset.

[Statix]

It's crazy how similar our stories seem to be. I have a hard enough time dealing with my anxieties and i'm just afraid that this will just manifest itself in to being another problem further hindering my mobility and quality of life.

The sad thing is that I was actually feeling pretty comfortable with my anxieties, but since the chest thing and now this, my anxieties have increased. I guess I should just be hopeful that no other symptoms start arising from this and that I can find something quickly that will get me back to where I was before this month.

Like I said before, I remember having something very similar to this a few year back, but it only lasted a week or two. I'm just frustrated I guess.

The doctors appointment will be hooking me up to a 24hr holter, prescribing me some anti anxiety meds, and probably some blood work to try and rule out some things that may be causing my problem.

[SeattleRain]

I think you'll be okay. I hope the anxiety meds help you.

A 48 hour holter was one of my first tests (after a stress echocardiogram). If you feel the 24 hours they record wasn't enough and didn't record the symptoms you usually have, I would suggest asking for a "Zio" patch (might have to go through cardiologist). I had mine for 2 weeks - didn't have cords or anything to deal with and when you press the button, it records the data both forwards and backwards (I think 60 seconds both ways). In other words, if you have 1 palpitation then press the button - it will still be picked up. I believe with a Holter, you have to push the button first (which is impossible to predict 1 palpitation) then it starts recording on more channels.

What do your palpitations feel like?

I also had some really bad anxiety and being isolated at home for so long I developed social phobia where it became very uncomfortable being around groups of people (like at the grocery store, waiting in line somewhere, etc). All that has passed. I thought for over a year I would never get over my anxiety and social phobia but now I practically have neither.

[Statix]

My palpitations just feel like a very hard heart beat. Sometimes my heart feels like it's being a little over sensitive to how I breathe. Like, it will be beating fast, but when I breathe in it speeds up and when I exhale it slows down too much that it would normally. But like I said before, I haven't so far had any more significant symptoms other that the fast heart beat and palpitations. Also, the palpitations seem to ease up throughout the day as well as my RHH. The doctor won't be seeing the morning symptoms as my sleep schedule is I go to sleep early morning and get up late afternoon. I will be going to the doctor early morning when my symptoms will most likely be not as bad.

[SeattleRain]

We have too much in common.

"My palpitations just feel like a very hard heart beat"

So do mine. They have gotten more painful as time has progressed, especially after trying a Beta Blocker for one day (they felt 10x more painful after that). I described them to my doctor as them feeling like a sledge hammer smashing into my heart. If I'm lucky they won't be as painful and feel more like a padded hammer. Another member here had an interesting description of theirs: something like a pressure building up in their heart and then in one hard beat, the pressure's released. I think that might accurately describe mine.

Sometimes my heart feels like it's being a little over sensitive to how I breathe. Like, it will be beating fast, but when I breathe in it speeds up and when I exhale it slows down too much that it would normally.

Again, another thing that I've also experienced. I brought this up to my doctor and he talked to me about the Vagus nerve and how inhaling stimulates it to slow down your heart rate. My POTS onset occurred when I was holding my breath and ran up the stairs really fast. By the top of the stairs it felt like my HR dropped to 15bpm for about 10 seconds and I thought it was about to stop beating. Whenever I held my breath after that point the symptoms would be similar to that. And when I describe what it feels like standing up (with the throbbing heart beat) - was very similar to that. He told me to avoid lifting heavy objects, etc - cause you tend to hold your breath.

Also, the palpitations seem to ease up throughout the day as well as my RHH

Same here. I'll usually have a few palpitations in the morning while laying down in bed. I may or may not have one or two while standing up during the day (I never had them standing up at first, but after the beta blocker I started to). Then maybe at night I might have one or two if I stay up too late. I've found that for me, laying on my chest will have the least odds of having a palpitations. Laying on my back - it's almost guaranteed and on my sides is alright but certain positions on my side I can completely feel one about to occur.

The doctor won't be seeing the morning symptoms as my sleep schedule is I go to sleep early morning and get up late afternoon.

Yet another similarity. When my POTS onset occurred, I was going to sleep around noon. For the past several years I'd have this horrible fluctuating sleep schedule where one week I'm waking up at 2pm and a couple weeks later I'm going to bed at 2pm. My POTS onset occurred after I tried fixing the schedule by staying up as late as I possibly could (big mistake - I'm not 18 anymore - my body couldn't handle it).

The cardio electrophysiologist that scheduled my Tilt Table Test looked at me like I was being immature when I told him I have sleep problems and there's no possible way I can wake up at 7am to be there for the test. I probably fell asleep at 7am the day before!

Does your sleep schedule stay the same or do you often have it slowly transitioning into a different one? Do you have trouble falling asleep?

[Statix]

Oh man, my sleep schedule is ALWAYS messed up. Again, I blame this on my anxieties and lack of a routine. I would get on a "normal" sleep schedule (getting up in the AM, sleeping in the PM), but it would always get messed up because I would either stay up playing games, or because my body didn't have time to acclimate to it and would refuse to go to sleep until it was early morning. I would then try rotating it around. I would say my sleep schedule changes at least once a month. I constantly try to rotate it back around by staying up as long as possible then sleeping as long as possible until it is where I want it to be.

The only times I have trouble falling asleep is when my body simply refuses due to what I think it because my internal clock is not use to it. I have noticed, however, since I have started experiencing these POTS type symptoms, I cannot stay asleep all night like I could before. It has not failed yet to sleep for four hours and I wake up, fall back asleep for a few more hours then I wake up again. Since I have been dealing with this, I have not slept a full night without waking up at least two times.

Oh, and another weird thing is I have had hyperhydrosis since I could remember. My arm pits would sweat no matter the temperature or activity level. Since I have been experiencing this, my arm pits are not sweating nearly as bad as before. I then thought this all could be due to dehydration, but my urine is clear and I pee two to three times a day. Also, underneath my arm pits have been sore, almost like I have a swollen lymph node, but I cannot feel any swelling or bumps.

[SeattleRain]

Your sleep schedule is exactly, word for word, just like mine. It's refreshing to know someone else exists that has had this habit. Like you, I would stay up as late as I could, then sleep in as long as I could until I was on a normal schedule. Again, like you, I've attributed this to a lack of a routine.

I find it nearly impossible to wake up early to alter my schedule. In the very rare occurrence that I am able to bear with waking up while my body is screaming to go back to sleep, it won't matter - I'll end up staying up just as late as I would anyways. My body's biological clock can't go back, only forward!

Interesting about waking up during the night. Before my POTS onset I would wake up several times probably. As in, I would open my eyes for a second, switch positions, then fall back asleep or something. Now with POTS, I tend to do this about 3 - 4x as much. It doesn't bother me cause I can fall asleep pretty easily but it is a little annoying. I'm very jealous of people who can fall asleep within 5 minutes of hitting the pillow, and won't move a muscle for 8 hours then wake up.

Sometimes I think my lack of exercise and exposure to the sun have something to do with why my sleep schedule is messed up. I've thought about going to a sleep specialist or doing a sleep study but have dragged my feet and made excuses (like knowing I wouldn't be able to fall asleep if they did a sleep study on me).

It seems like we've found a difference between us - my arm pits are just fine! Though, near my armpit on my left side it will ache when I wake up in the morning. I've noticed that when I'm laying on my left side, I can feel my heart beat physically pushing out through my ribs - really far. Farther than what I would consider normal and that I've never experienced before having POTS. It's like my heart is enlarged, or nudged to the left, pushing up against my lungs, which protrudes out of my ribs. In the same spot, it will hurt like it was being poked all night. I've read several posts from other's who've experienced this.

[corina]

Hi David, welcome to the forum, it seems you have found your perfect dysautonomia match here!

[Statix]

I think I have also experienced the pushing against my left rib cage. This happens when I am laying on my side, or almost fully on my side, when I am trying to sleep.

It's pretty crazy, though, how similar our stories seem to be. I mean, same age, sleep patterns, gender, onset of POTS (although I haven't been diagnosed).

If you don't mind me asking, what adjustments have you had to make since you realized you had POTS? How long has your symptoms been going on? What do you do about the tachycardia? Since I haven't been to the doctor for this yet, I just have to wait them out and suffer through it.

And thanks, Corina!

[SeattleRain]

what adjustments have you had to make since you realized you had POTS?

Well the first adjustment I made was my sleep schedule. I was physically incapable of staying up late like I used to. So my schedule is a lot more "normal" now. I'm waking up around 12 - 2pm consistently and I try really hard to keep it that way. If I get on a bad schedule where I'm going to bed at that time, my symptoms are unbearable - so I do everything I possibly can to avoid that. I've noticed a huge difference in overall well-being.

The second adjustment was moving from my office/desk to buying a new laptop and working from bed. This was when my blood pressure was extremely low, along with horrible slow pulse - sitting upright was too uncomfortable.

When my symptoms were at their worst I was forced to keep a strict diet of organic fruits and vegetables. Absolutely no grains or refined sugars (chocolate was shown to be a huge trigger). I started tanning (I have a tanning bed) and the Vitamin D increase seemed to help. I drink 3/4ths to 1 gallon of spring water a day - and that's paramount to how good I feel. If I neglect my water intake my body gives me **** for it.

Exercise has shown to be the best thing to alleviate my symptoms and make me feel a lot stronger. My most active period since having POTS was in August and while I still had bad POTS "attacks", I had no palpitations for a long time (almost a month). Well, I might have had a couple but they weren't bad at all. If I lay in bed all day, the palpitations haunt me. If I'm up and around, get my HR going, the palpitations subside for at least a day after that. I wouldn't recommend exercising though until you see your doctor and he approves of it.

I made another thread about how a certain exercise experience made a world of a difference:

How long has your symptoms been going on? What do you do about the tachycardia?

POTS onset was in late June, so about 8 months.

I don't really do anything about the Tachycardia. It's only been unbearable 2 or 3 times and that was in the thread I linked to above - where the prolonged exercise caused my heart to go nuts - but after that it calmed down and was the best I've felt since my onset.

I tried compression stockings and at first I think they helped. My standing HR was 70. I think they may have lost elasticity, though, as they don't seem to help as much anymore. That, or possibly placebo effect although not sure. I plan on trying the expensive compression stockings that are a bit tighter and go all the way up to your abdomen.

I took a Beta Blocker as mentioned and it brought my HR down but it was the unbearable - I was about to go to the ER. My HR dropped to 35 while resting and my BP was pretty low. But the worst was the horrible chest thuds/palpitations. It was like a cruise missile smashed into my heart while I was standing up - it made everything so much worse. It was the lowest dose of Atenolol, and I still feel like I only have standing palpitations now because of it - whereas before I only had palpitations while lying down...

[SeattleRain]

I'd also like to point out that the turning point for when I went from really low pulse, low blood pressure to normal RHH to moderate tachycardia was when I took a stress echocardiogram. They took an ultrasound of my heart, then put me on a treadmill and made me sprint until my HR reached 185. This was the first time I exercised in months since having my POTS onset and after the test I felt great. My heart felt pretty sore - like a sore muscle - but after that my palpitations were way less common and way less severe. That's when I started noticing being active is important and if you lie in bed all day, things are likely to get worse, not better.

[Statix]

Yeah, I am going to try and stay on a sleep schedule as well. Right now I am in a "rotating" period so I can get to the doctor. I need to start experimenting with diet as well. I don't eat right as it is, so I need to find foods that make me feel better. I just looked up some compression stockings so I might be purchasing some of them soon.

I think the tachycardia is worse for me because I make it worse. Having anxieties and knowing your heart rate is over 120 doing nothing but standing scares me. I know the anxieties that go with this is only making things worse. Hopefully the anxiety meds will help me enough to where I feel more comfortable at home as well as being able to go out to get the proper tests.

[SeattleRain]

I can imagine that the anxiety would make it worse - I'm sure that's tough to deal with.

Do you have constant anxiety, attacks through out the day, or usually have big anxiety/panic attacks at certain times?

[Statix]

Before this, I would only have them when I was outside of my comfort zone. With this, and being stressed and having anxieties about it, they come depending on how I am feeling.

[Statix]

Like I said earlier, my symptoms seems to get better the longer I stay up. I have now been up for 14 hours and my RHH is 58-61. When I stand, it only goes to 82-84 (which is within normal range). That is right upon standing. If I walked around a bit, it would actually go down slightly. The same heart rate decreases have happened every day so far I have been dealing with this. It seems like my symptoms reset themselves every time I go to sleep and wake up.

[SeattleRain]

Interesting. My "numbers" appear to be the same as yours as the day goes by but my perception of them are different. Before sleep is the worst I feel. I feel like after 14 hours of being up, my heart is feeling weaker and slowing down - telling me it's ready for sleep and doesn't want to keep beating that fast.

[jpjd59]

David:

Welcome to the forum! My daughter is also 24 years old and has POTS (she was diagnosed at 22). She was feeling perfectly fine and then one day she came down with a virus which lasted about a week. Two weeks later the POTS symptoms started. It's been quite an experience trying to get a diagnosis and treatment plan. So far we have not found anything that has helped but she is just starting a new treatment and we are hoping to see improvement (if we see improvement I'll let you know).

Pam