Slow Heartbeat When Standing?

[Steven9011]

I haven't been officially diagnosed with pots, but I think I have something along the lines of it. One reason I haven't been officially diagnosed is because my doctor says what I get is a normal reaction to standing (before I said anything about heart beating slow).

Anyways, my symptoms are strong heartbeats felt in head when rising that sometimes causes headaches, strong slow heartbeats for about 20-30 seconds when rising then the heartbeat slowly goes faster and faster,and sometimes lightheadedness, palpitations, shortness of breathe.

Has anyone experienced slow strong heartbeats because when I get them for that 30or so seconds I can feel the slow strong heartbeat in my chest and head.

Does this sound at all normal? I'm worried I have some heart problem, and I really don't know if my doctor will take this seriously, because I have been to him so many times about headaches (which I presume are from this, I even had a ct scan)

And I know I have asked this before but this is really worrying me, especially since I started working out again.

Any help would be appreciated!

[persephone]

If you feel your heart beating slowly when you stand and you get lightheaded this could potentially sound more like Vasovagal or Neurocardiogenic Syncope- tht means your heart beat and blood pressure drop when you stand, rather than the rapid pulse (tachycardia) you might expect with POTS.

Has your Dr ever measured your pulse lying, sitting and standing?

If not, get them to do this- it may offer some more insight into what's going on when you change posture.

I usually get a rapid pulse on standing but it can go through phases of being REALLy slow when I stand and then, like you, I feel the slow strong beats in my head and my chest.

Good luck for getting it sorted!

P x x

[baby_boy]

Im so glad someone actually brought this up. I have this and have had it for over 3 Years now. Im so glad i have someone to relate to.

On days i can feel terrible and standing does become a problem, my family think its in my head so i have to hold a brave face and get on with life. On occasions ive been very near to passing out. Im 20yrs old and male and at the moment im going to the gym 5x a week to do my body building routine. I wont deney that it is a struggle and very hard for me, but im determained to win over my body. Im not on any meds as i refuse to take artifical medication to alter the body. I drink PRO MASS which is something for skinny people to build on mass in order to get a body builders shape, it contains 45G Protien per drink which i think helps make me feel better, i take it 2x a day + food, over 3000 Calories on some days, ive actually had over 4000 on days, im nearly 12" Stone with a good figure.

The way i look at it is my heart is good, i can walk far ( although anxiety plays its roll in keeping me down ), i can do 45 Mins + at the gym every day, not to mention the hardcore cardio workouts. I know some people are in harder positions then me, but theres been days when standing is a BIG NO!, some days i sit at the PC all day just so i dont have to stand. I cant walk anyware on my own, any time i feel im in danger my body will start to go over and i find it hard to do things, my mouth goes dry, my HR become irregular and i start feeling like i cant cope. Ive learnt on most occasions to take deep breaths and carry on.

Im not saying my life isnt hard, it is very!!!! hard and sometimes i honestly feel like killing myself, ive even tryed it a few times, One time being Bulimia.

When i stand my HR goes slow, sometimes i stand there and it goes normal, sometimes it lasts longer. I first noticed it in the morning i went to the toilet (as boys do) and i always felt funny, i started taking my pulse and i then noticed why. I cant climb stairs or the same happens, if i yawn or take deep breaths the same happens, if i stretch it also happens.

I just wish my DOC would tell me whats going on as its very fustrating. Id rather know whats going on so i can adjust, at the moment im living to my own knowledge, which could be wrong, although its worked for 3 years so far . Im 99% posative i have an orthostatic intolerence, i have alot of symptoms i would like to discuss with you as im sure we feel the same every day. Im not sure how bad you feel but im here for support

Im young so my mind drives me to do well and keep up with other young people, even if it hurts. Id love to talk with you, my email addy is: mixmedown@hotmail.co.uk

Add me on MSN or email me, id love to chat.

Regards.

[Steven9011]

I can't believe you get it while you yawn because the EXACT same thing happens to me to, when I yawn it feels like my heart starts to pound slower and harder then slowly it goes back to normal.

I think it would be better to talk about it on here becauase I rarely use my msn messenger.

I'm so glad there is someone else with the same thing, I really want to know whats going on, and better yet how it could happen when yawning!?!?

I want to talk to my doctor about it, but he will likely just brush it off like it's nothing, as usual.

Do you think anxiety can cuase this because I have HIGH anxiety some times, mostly worrying about this, whatever I have is really making me have even more anxiety, and I frequently worry about it.

ALL I WANT IS AN EXPLANATION, how can you not be worried when no one has any idea what the **** is going on? this is making me so unbelievably frustrated.

[baby_boy]

Steve its very fustrating i know. By the way im from the UK.

Do you have problems sleeping, i often awake at the middle of the night with a slow HR then it returns to normal. I usually switch on the TV to stop myself getting paranoid.

I think anxiety has alot to to do with our problems ( well mine anyway ). I constantly, and i mean 24/7 think about dieing, werever i am or whatever im doing i always think i will die, most the times i think im gonna die of a Heart Attack or something.

I think the problem is in out brain patterns, whenever we have anxiety (which is all the time for me) our brain patters get mixed up. And the fact i think our bodys cant ajust to changes quickly.

What other symptoms do you get steve? and do you feel it everyday all day? What do you eat? Do you excersice? and Do you do ordianry things when you can?

Alot of question, lol, but im just trying to compare you to me if you know what i mean. Tell your Doctor btw, if he brushes it off, tell him its a problem. Doctors always tell me its in my head then lecture me on Anxiety.

[MightyMouse]

Baby_boy - if you are suffering from anxiety, paranoid thoughts about your body's issues, and also have had suicidal thoughts, it is important for you to get treatment for those. If, on treatment, you are still having the same problems, then you need to speak to your doctor about the fact that your treatments aren't effective, and either need to change your treatment or change your doctor.

Generally speaking, anxiety is NOT the cause of dysautonomia. In some cases, it either co-occurs with dysautonomia and/or is part of having a hyperadrenic type, and the anxiety and/or depression are still to be addressed medically and through psychological treatment. I want to clarify for others reading this forum that, for most cases, your supposition about anxiety being closely related dysautonomia is not correct. Depression can happen with anxiety, and can result from any long-term illness, including autonomic problems.

Steven, generally speaking, dysautonomia is life altering and difficult, but not fatal. There are, however, some exceptions. Additionally, bradycardia (slowing heart rate) is something to discuss and have assessed by a cardiologist and/or e.p. cardiologist.

Nina

Edited August 22, 2005 by MightyMouse

[Steven9011]

first of all....

Steven, generally speaking, dysautonomia is life altering and difficult, but not fatal. There are, however, some exceptions.

I don't know if that was supposed to make me feel bettter or not but it really didn't, I'm paranoid mostly about why this is happening and the fact that some exceptions are eventually fatal freaks me out even more, especially when what I have isn't very common (on this board anyways) and what I have could very well be the type that turns out to be fatal.

What other symptoms do you get steve? and do you feel it everyday all day? What do you eat? Do you excersice? and Do you do ordianry things when you can?

I have woken up once before with that feeling, but that was it (maybe just the beginning of this happening a lot more) I don't feel it all day everyday, because some days I don't feel it at all and I can go a while without it and sometimes I'll have it without it going away for a long while. I'm eating between 1500-2000 calories and have been exercising (trying to lose some weight). And usually I can do ordinary things without it bothering me, sometimes it will bother me while exercising but not often, and it basically only bothers me when standing up from sitting.

Oh and another symptom that I don't think I listed was graying of the vision when standing although it hasn't bothered me in quite sometime now.

I still can't believe you get the slow heartbeat when you yawn, I never mentioned that because I didn't think it was a common symptom at all.

[baby_boy]

MightyMouse i am seeking help but these doctors seem to be taking there time ( as always )

Steveo, My symptoms started of very light, i was getting them Twice a week, then it mooved to everyday. Ive had another new symptom what im feling latley. Yesterday i was in the car and i felt really tiered, we wre driving through contry lanes were there were ALOT of up and down hills and roads. After a while i put my head back and relaxed, next minuite my heart skipped, it felt like a bang, i automaticlly cough and reach for something to touch, very annoying!!

As for the yawning, yeah it can be very annoying at times. How long have you had this condition? Im not trying to scare you but if u havnt had it long and you have the same as me it may get worse within time. Like mighty mouse said anxiety doesnt come with autonimic syndromes, but personally for me the fact i got through these feelings every day scares the **** out of me, my anxiety is always on high, which i do belive contributes to the worsening of my symptoms. Maybe once i get a DX ( diagnosis ) ill feel better, but 3 years of this pain with no meds or DX is fustrating.

Get your doctor to take you pulse sitting and standing, if he ingnores you tell him you pay for treatment and you WANT help.

[Steven9011]

So are you just waiting for the results???

What tests have you taken, and have the doctors give any insight into what could possibly be causing this, because I really am getting worried.

[MightyMouse]

Steve, the two most well known types that can be fatal are 1) familial dysautonomia and 2) multi system atrophy. FD is genetic and usually diagnosed in early childhood--and highly unlikely that you have it and are undiagnosed as an adult. MSA involves, as it's name implies, problems in all the body's systems. There are also genetic variants such as a neurotransmitter transporter defect. Yet again, this is something that is typcially noted in childhood, not adulthood. To read about the types of dysautonomia and causes please read:

http://www.dinet.org/what_causes_pots.htm

BTW, it's not uncommon to have a problem with yawning as it may activate the vagus nerve.

Panicking about what's going on isn't helpful. It's not going to make you feel better, it's only going to make you feel sicker, whether you have a true illness or not. Take a deep breath and do something to help yourself: find a good doctor.

It sounds as though you haven't had a good medical workup. It's possible that you *just* have a bradycardia issue and not a true autonomic disorder. My suggestion is to fire your current doctor and find one that takes you seriously. Even if you're not sure what's going on, or if is or is not pots or similar, you might do well using a physician from the listings on DINET, or over at NDRF, or over at CFIDS.

Nina

[steph37822]

Hi, I may get in "trouble" for not being very friendly here, but Steven please be careful where you get your information from. Nina aka mighty mouse, is a forum moderator, I agree with her, if your doctor is blowing you off, you should probably find a doctor from the lists she suggested who can run the proper tests.

Have you ever had a tilt table, that is one of the main diagnostic tests for dysautonomia? If none of these docs are near you perhaps you can find an electrophysiologist cardiologist willing to at least hook you up to an event or holtor monitor to record your heartbeats, at home, and see what they are doing?

Much as James, aka baby boy, likes to give advice, and relate to people, sad fact remains that he actually HAS NO DIAGNOSIS, nor has he for 3 YEARS. It can be very dangerous for people to self-diagnose themselves, and/or give advice to other people. I've said this to James before.

I've had POTS for 7 years now, I'm 27, I also have 4 other rare disorders, and Mitral Valve Prolapse, Inappropriate Sinus Tach and a murmur, I don't have ANXIETY, I don't have panic attacks. I don't think I'm going to die. I don't believe they have to go hand in hand with dysautonomia. If I did have anxiety, I would certainly take medications my doctors thought would eliminate those feelings, I'd imagine they are scary. I'm not sure what James' is trying to accomplish by not putting "artificial medication" in his body, but I'd imagine his quality of life would improve. Again, I don't think this forum is the place for James' problems.

Regardless of that my heart is fine, it keeps me going, I work out, I live my life. There are many people on this forum who are very different from one another, and many people have lots of wonderful advice, just please be aware of where your info is coming from, and don't stop until you get an accurate diagnosis yourself--it took me 13 months, but I found one.

good luck steve

-Stephanie

[Steven9011]

I went to my doctor today and the first thing he wants to do is an ECG to see if my heart is in good health... Then after that we take the results and go from there, I'll ask him about a tilt table test afterwards.....

Thank you all for your input... Muchly appreciated!

[MightyMouse]

Sounds like a good start Usually, most people with autonomic dysfunction have normal structure of the heart and other than tachycardia, have a normal rythymn. Once that's been established, you should consider asking for a tilt table test, as this is the definitive test used in diagnosing POTS, NCS, etc.

Good luck at your ecg appointment. Nina

[baby_boy]

Yes steph, i understand

Im also off to the doctors today, im also going to ask for an ECG. I will update you on it more when ive got the appointment.