Does anybody have inappropriate sinus tachycardia?

[stepcutgirl]

I was diagnosed today and despite working in the health care field I have never heard of this. Apparently it''s a common cardiac problem in young women. I am only 29 and am possibly going to have a pacemaker put in. Just wondering if anyone out there has dealt with this as well.

 

[whitby_2773]

hi stepcut

i read a little about it, and came up with a few places that said it *wasn't* all that common - certainly less common that sinus tachycardia, which seems to be the more common, catch all condition. apparently it's also most common in young women in the health care industry, tho it's unknown as to why.

take a look here.

fascinating stuff - and pls keep us up to date as this progresses.

thinking of you and sending warm thoughts....

 

[stepcutgirl]

Whitby! i didn''t know you were back! I am so excited to see you are posting again! Yeah, i read that article...along with most others. I don''t know why i thought I had read it was common, maybe the common of the uncommons. I find it odd that I''ve never heard of this despite doing echo''s for cardiologists (my job). I''m hoping to find someone out there who has gone through this.

So glad you are back!

 

[niccia]

Stepcutgirl,
I don''t have much to add but just wanted to say I wish you the best of health. That must be very scary for you.
My mum almost died a few weeks ago from an aortic rupture. We had no idea she had anything wrong with her heart, although looking back there were signs. She came through everything (a stent and valve replacement) just fine and is now on her way to recovery. Terrifying though! Esp when it is something you have never even heard of.
Good luck with your treatment

 

[gemgirl]

Date: 1/12/2010 7:42:00 PM
Author:stepcutgirl
I was diagnosed today and despite working in the health care field I have never heard of this. Apparently it''s a common cardiac problem in young women. I am only 29 and am possibly going to have a pacemaker put in. Just wondering if anyone out there has dealt with this as well.

I''m a heart patient and I''ve been a heart patient since my middle teens, and as scarey as some of my bouts have been, none of them has been life threatening. I was taken to the hospital by ambulance in early October with what they said was sinus tachycardia. My heart (because of stress and an emotional shock) was beating at around 140 bpm during the attack and got down to around 115 bpm for the rest of the day. I was hooked up to monitors all day, given a small dose of Xanax and nothing changed my condition, so they sent me home. I saw my cardiologist the next day, had the usual round of tests (holter monitor and echo) and the results were in fact supraventricular tachycardia. Something a little more serious. My doctor chose to do nothing since I''ve had bouts like this before, mostly in my teens and 20''s. In November, I woke up at 4:30 one morning with my heart popping and skipping uncontrollably. I didn''t want to go to the ER again because they didn''t do much to help, so I drove myself to my cardiologist''s office long before any of the doctors came in for the day. I was seen as the first patient, had three EKGs in order to capture the flukey erratic beats and was diagnosed with running PACs, a different type of upper chamber electrical disturbance. At that point, because I asked for something to break the erratic cycle of beats, my doctor gave me a small dose of a beta-blocker (Lopressor)and a baby dose of Xanax. I had nothing but irregular beats during every minute of every day for the following four days. Frankly, I thought I was going to die, but it seems I have an electrical disturbance in my atrium that kicks in every once in a while, sometimes for a reason and sometimes for no reason at all. Even after all that? My Cardio doesn''t want to do anything except order a 30 day heart monitor the next time it happens. My normal resting heart rate has always been high and is 95 to 100 even now.

All of this explanation is to say... sinus tachycardia is a relatively normal condition and is the least serious of all of them. It''s harmless in and of itself, and it won''t do any damage to your heart. You would have to suffer from SVT (which is different from ST) for quite a long time before any cardiologist would decide to do anything to you, and because of more modern medical treatments, they would probably do an ablation first before saddling anyone with the hardware of a pacemaker. Long before any of that would happen, they''d have to try you on different beta blockers first and they wouldn''t even give those to you unless this is a fairly frequent event.

The long and the short of it is, when it happens, it''s very unnerving, can cause anxiety after having them for a while and they''re exhausting (not because you''re heart is beating insufficiently, but because we become very conscious of it''s beating and subconsciously "monitor it" ourselves). The best advice is to try to ignore it when it happens because nothing bad is going to happen to you. The Internet is loaded with info on it. You''ll find that a lot of people suffer from the same thing. If you find yourself getting over wrought with anxiety when you notice it happening, ask your doctor for a small dose of an anti-anxiety med. That might be enough to break the cycle.

What tests have they done so far?

 

[stepcutgirl]

I''m glad that you are doing better now gemgirl. I started on beta blockers in early December and those haven''t done too much. I''m up to 300mg of Toprol now and my heartbeat still hasn''t come below 115 even with that monster dose. The normal dose of that is 50mg a day. I''m having an echo and nuc med stress test next week as well as some blood work. I was told inappropriate sinus tachycardia is different from regular sinus tachycardia.

I was told that because of the very high dose of beta blockers I am on is still not controlling it that ablation was the next step (assuming these tests show what he expects them to) but that ablation is almost never successful in the long run. And that the most effective type of treatment these days for it is ablation followed by a pacemaker at the same time. I will have to see a electrocardiologist for all that though who will work with the cardiologist.

I try not to freak but it is a little scary.

 

[princesss]

Another heart patient here. I don't have much to add, other than I know how nervewracking it is to get diagnosed (the hard part) and then contemplate the options. (My issue isn't electrical, though I do get bouts of tachycardia and I know how scary they can be.)

*hug*

 

[whitby_2773]

princess, stepcut and gemgirl

i had no idea you were all going through something so tough; i''m impressed by the positive ''can overcome this'' attitude of each of you.

just wanted you to know that i''m going to send some prayers to the only Person i know who can help.

love and hugs to you all - please keep us up to date,

 

[stepcutgirl]

I hope you are ok princess. Tachycardia is a little scary because for me I just can''t catch my breath and my chest hurts and i break out in a cold sweat.

So glad you are back whitby, thank you for the support.

 

[princesss]

Date: 1/13/2010 5:57:11 PM
Author: stepcutgirl
I hope you are ok princess. Tachycardia is a little scary because for me I just can''t catch my breath and my chest hurts and i break out in a cold sweat.


So glad you are back whitby, thank you for the support.

Yeah, it''s definitely a scary thing! I have mild episodes where I feel like it starts bubbling and I have a little mini freak out. And then I remember that freaking out doesn''t affect it, but staying calm can and I try to pretend it isn''t happening. My poor boyfriend has been with me while I''ve been getting to know my "new" body (that has all of these problems), and treats me like a Faberge egg when he notices my signals. It''s hard when you can feel it getting better but your SO can''t.

The best thing I can tell you is get a cardiologist you feel comfortable with, but get a second opinion. I''ve gotten conflicting advice from multiple doctors and I have to wade through and try their advice for a while and see what works. Don''t let fear make your decision - listen to your body. Doctors have a lot of knowledge, and they''ve seen a lot of different problems, but you know your body better than anybody.

I''m lucky - all that''s required for my condition is 5mg of a beta blocker (Bisoprolol) a day with good diet and exercise and to maintain my body''s natural healthy weight - around 140 to 145 (aka about 15lbs less than I am now), but it took 5 years to find that out. I hope the process is quicker and smoother for you.


Whitby, thanks for your thoughts and support.

 

[ksinger]

Can I join the tachycardia club?

I''m just waiting for the cardiologist to tell me the verdict. I''ve had 2 bouts of tachycardia in the last several months. The first was at work, and the second, more scary, was in the middle of the night with my heart running around 188 for about 20 minutes. I was never out of breath, but felt real freakin'' weird. I''ve always had a fluttery heart, ever since I was a teen, so I never gave it much thought. But this was way different. My heart has been kinda weird since my mom died last year, honestly....

Anyway, he''s done an EKG, (it obliged with a mis-beat, but no runs) and an echocardiagram. He also put me on a looping monitor and caught one tiny burst 2-3 seconds -of tachycardia at 177 that they called SVT. His staff told me that he told THEM to assure me it wasn''t a panic attack. I was amused. I never thought it was. I guess panic stricken women are common at the cardiologist? Whatever. I''m just waiting for the final verdict. He suspects (think I) that I may have valvular problems (hence the echo) since I have a pretty fair case of hypermobility syndrome, which apparently can affect the heart. Nice to know that a condition - (recently diagnosed by 3 separate doctors and was almost an afterthought by all of them - oh yeah, HMS, let''s move on) - that has made my life pretty miserable and finally explains all the weird stuff from my childhood - not the least of which was horrible leg pains, might now affect my heart too.

 

[stepcutgirl]

Ksinger...I sure hope you get a diagnosis soon and are able to keep it at bay. I think the reason i was so out of breath was because mine was not a short lived "attack" but 10 straight days of it not getting below 140 before i was put on meds and then two weeks of it not getting below 130 before i was put on the pumped up dose. I had two docs tell me that when your heart is beating that fast you are winded because it is beating so fast that it can''t get enough oxygen in each beat so you are gasping for breath.

Princess, i''m really glad you found out how to keep yours at bay. Your boyfriend sounds really sweet. I''m not really used to the "new" body yet so I just get really quiet and don''t say anything and my bf thinks i''m pouting

until he realizes I just can''t breathe very well! The cardiologist i am seeing now is very highly regarded where i am from but I will be getting one more opinion before anybody sticks anything in my chest or up my femoral artery!

 

[Iowa Lizzy]

I don''t have sinus tachycardia, but I have Mitral Valve Prolapse (Leaky Valve Syndrome). I have a prescription for beta blockers but I rarely take them because my blood pressure is always super low.

Sorry to hear about this. Sounds like it''s manageable though.

 

[vip0802]

Date: 1/13/2010 5:16:08 PM
Author: whitby_2773
princess, stepcut and gemgirl


i had no idea you were all going through something so tough; i''m impressed by the positive ''can overcome this'' attitude of each of you.


just wanted you to know that i''m going to send some prayers to the only Person i know who can help.


love and hugs to you all - please keep us up to date,

+1 and to you too ksinger! big hugs and i''m keeping you all in my prayers.

welcome back whitby!!!

 

[swingirl]

Date: 1/13/2010 4:59:11 PM
Author: stepcutgirl
I''m glad that you are doing better now gemgirl. I started on beta blockers in early December and those haven''t done too much. I''m up to 300mg of Toprol now and my heartbeat still hasn''t come below 115 even with that monster dose. The normal dose of that is 50mg a day. I''m having an echo and nuc med stress test next week as well as some blood work. I was told inappropriate sinus tachycardia is different from regular sinus tachycardia.

I was told that because of the very high dose of beta blockers I am on is still not controlling it that ablation was the next step (assuming these tests show what he expects them to) but that ablation is almost never successful in the long run. And that the most effective type of treatment these days for it is ablation followed by a pacemaker at the same time. I will have to see a electrocardiologist for all that though who will work with the cardiologist.

I try not to freak but it is a little scary

This is not something to ignore. It''s good your condition has been diagnosed while your are young and healthy. DH has a combo pacemaker defibrillator. It was a very easy procedure. His heart has actually improved by not being under the stress of tachycardia.

 

[ksinger]

Thanks guys for all the kind thoughts. I''m hoping whatever I have pans out in the "mild" category. From some of the situations described here, my situation doesn''t sound that bad. some of you are dealing with far greater issues than mine, certainly. My thoughts and prayers with you guys too.

I do think that this runs in the family for me. My grandfather had some form of tachycardia, and one of my uncles breezily told me, "Oh, heart irregularites. You''ll get used to ''em." Not so sure about THAT, but it does indicate that it runs in the family.

The thing that is making my life a living hell these days is the hypermobility. Before I knew about it, I was doing lots of research on fibromyalgia, which if you knew me, would stagger you. I''m not one to complain or go to doctors (ironically, it may be one of the reasons I now have some of the problems I do) - it''s not our family way you know? Suck it up is closer. But for me to think I might have what I consider to be one of the "diseases du jour" is almost shameful. Fibromyalgia is one of those that is still treated as if the people who have it have mental problems, and I just don''t want to deal with that crap. HOWEVER, I found in my reading, that hypermobility is frequently misdiagnosed as fibromyalgia. Bingo! I KNOW I have THAT, and my supposed fibro symptoms were never clear cut - some but not most. As I type this tho, I''d give anything to get back into bed. This is one of those totally unpredictable and tied-to-nothing-I-can-determine mornings when every joint - wrists, elbows, knees, entire spine, ankles - and many muscle groups - just hurt like hell. And I don''t have arthritis. Got the migraine thing going too.

See, here I am complaining! I''m going to shut up now, go get a shower, and do the family thing of sucking it up. Life goes on.

I''ll be keeping up with this thread. I''ll let you guys know what the doc tells me. I''ve got my follow-up in a few weeks.

 

[Callisto]

stepcutgirl, sorry to hear about your recent diagnosis, but I''m glad you have caught it at an early age and can monitor it well.

Hey you all seem to know way more about heart issues than I do so I though I would throw my case out there and see what you all think, is it worth getting it looked at?

Every so often (probably once every other month or so) I get episodes of tachycardia about 20min-2 hours long. Usually associated with very mild stress or adrenaline rushes(i.e playing a game of bocce ball, yes I''m slightly anxious because I want to do well but nothing that would cause extreme stress). The thing about them that worries me though is that long after that brief moment of mild stress is over my heart continues to beat incredibly fast (and feels like its going to hop out of my chest) no matter how calm I try to be. Also not sure if it relates, but I have pretty low blood pressure.

Thoughts?

 

[gemgirl]

Date: 1/13/2010 10:40:09 PM
Author: stepcutgirl
Ksinger...I sure hope you get a diagnosis soon and are able to keep it at bay. I think the reason i was so out of breath was because mine was not a short lived ''attack'' but 10 straight days of it not getting below 140 before i was put on meds and then two weeks of it not getting below 130 before i was put on the pumped up dose. I had two docs tell me that when your heart is beating that fast you are winded because it is beating so fast that it can''t get enough oxygen in each beat so you are gasping for breath.

Princess, i''m really glad you found out how to keep yours at bay. Your boyfriend sounds really sweet. I''m not really used to the ''new'' body yet so I just get really quiet and don''t say anything and my bf thinks i''m pouting

until he realizes I just can''t breathe very well! The cardiologist i am seeing now is very highly regarded where i am from but I will be getting one more opinion before anybody sticks anything in my chest or up my femoral artery!

It''s funny that that was what I was trying to explain to my doctor too, that after four straight days of having SVTs and PACs 24 hours a day, I was exhausted! He also told me that the fact that they stopped after four days on Lopressor might have been just a coincidence since the medication didn''t make them stop immediately (like it does for some people). More often than not, my belief is that beta-blockers are relatively useless. They also make me feel like I have no energy at all and like I''m dragging bricks when I walk.

The results of your Echo will tell the docs whether you have sufficient blood flow going into your heart and if you have enough oxygenated blood leaving your heart. It will also evaluate your heart muscle health. In my case, I have enough blood going in and coming out and my heart muscle is good (my Cardio said). Those results will help the doctors to formulate a treatment plan for you.

What constantly goes through my head when I have another attack is- how can something so abnormal and so damned scarey, also be a totally benign condition?

 

[gemgirl]

Date: 1/13/2010 8:03:02 PM
Author: princesss

Date: 1/13/2010 5:57:11 PM
Author: stepcutgirl
I hope you are ok princess. Tachycardia is a little scary because for me I just can''t catch my breath and my chest hurts and i break out in a cold sweat.


So glad you are back whitby, thank you for the support.

Yeah, it''s definitely a scary thing! I have mild episodes where I feel like it starts bubbling and I have a little mini freak out. And then I remember that freaking out doesn''t affect it, but staying calm can and I try to pretend it isn''t happening. My poor boyfriend has been with me while I''ve been getting to know my ''new'' body (that has all of these problems), and treats me like a Faberge egg when he notices my signals. It''s hard when you can feel it getting better but your SO can''t.

The best thing I can tell you is get a cardiologist you feel comfortable with, but get a second opinion. I''ve gotten conflicting advice from multiple doctors and I have to wade through and try their advice for a while and see what works. Don''t let fear make your decision - listen to your body. Doctors have a lot of knowledge, and they''ve seen a lot of different problems, but you know your body better than anybody.

I''m lucky - all that''s required for my condition is 5mg of a beta blocker (Bisoprolol) a day with good diet and exercise and to maintain my body''s natural healthy weight - around 140 to 145 (aka about 15lbs less than I am now), but it took 5 years to find that out. I hope the process is quicker and smoother for you.


Whitby, thanks for your thoughts and support.

If we try, we''re all able to find things that adversely affect our arrhythmias. For me it''s definitely stress, (more exactly- emotional heartache or heartbreak), my tendency to breathe too quickly and too shallowly, and one thing I can''t help- my estrogen level. Although I''ve had palpitations and tachycardia my whole life, the whole thing was never as bad as it now that I''m post-menopausal. I did take a small dose of bio-identical estrogen for six weeks last year and almost instantly- that crazy fluttering around my chest/crazy leaf in the wind type
heartbeat reverted back to what''s normal for me. The problem is, I can''t take estrogen because of the side effects. But anything can trigger these attacks and we have to figure out for ourselves, what flips that switch for each of us.

Learn diaphragmatic breathing. It''s helps a LOT. Alot of us, especially in the throws of an attack, resort to taking short little shallow huffy breaths that don''t do anything to get enough oxygen into our lungs. Those short little insufficient breaths are just our bodies reaction to something being terribly wrong. I''ve conditioned myself to be more conscious of how I''m breathing.

 

[gemgirl]

Date: 1/14/2010 11:01:37 AM
Author: Callisto
stepcutgirl, sorry to hear about your recent diagnosis, but I''m glad you have caught it at an early age and can monitor it well.

Hey you all seem to know way more about heart issues than I do so I though I would throw my case out there and see what you all think, is it worth getting it looked at?

Every so often (probably once every other month or so) I get episodes of tachycardia about 20min-2 hours long. Usually associated with very mild stress or adrenaline rushes(i.e playing a game of bocce ball, yes I''m slightly anxious because I want to do well but nothing that would cause extreme stress). The thing about them that worries me though is that long after that brief moment of mild stress is over my heart continues to beat incredibly fast (and feels like its going to hop out of my chest) no matter how calm I try to be. Also not sure if it relates, but I have pretty low blood pressure.

Thoughts?

I have a long history of adrenal disease and naturally producing too my adrenaline, and when my adrenaline goes even higher because of a stressful situation, I often kid that if adrenaline were electricity, I could light a small town. All kidding aside, a lot of us with tachycardia are very sensitive to rising adrenaline levels and our bodies overreact somewhat. The problem is - once your adrenaline goes up, it takes a while (from a day to a few days or even longer) for it to go down. It''s not like filling up a sink and draining a sink. It''s more like filling a sink and draining a sink with a terrible clog. Adrenaline goes down slowly. That''s why your heart continues to beat too fast for a while.

The only connection with low blood pressure and tach attacks is that low blood pressure may make you more prone to developing Orthostatic (or Postural) Hypotension, and OH makes you more prone to attacks of tachycardia. I get bouts of PACs every single night when I first lay down after cleaning up the dinner dishes. When I first go from standing to laying down in bed propped up on pillows every night, my PACs kick in for about the first fifteen minutes I''m lying down. Then they''ll stop on their own when my body adjusts to lying down.

 

[Novel]

Wow, I had no idea so many people here were dealing with these kinds of issues! Can I join in? I have something called POTS (postural orthostatic tachycardia syndrome). Its not electrical either, but when I change position (lying down to sitting and sitting to standing) I have tachycardia, black out, etc. Its fun, especially when I get up in the middle of a meeting. The tachycardia is frightening, as are the moments after it. And I think living in fear of it is almost just as bad.

Stepcutgirl, I hope it gets under control for you soon! I think what swingirl is saying about her DG is important, that its easier on his heart now.

Ksinger, I have hypermobility, too. I know, the Fibro thing is kind of annoying, I'm with you. I don't have the 11 spot tenderness but on any given day, I have shoulders, knees, and hips slipping in their sockets (a tendency to sublex) and the ligament and muscle pain, and weakness, that goes along with it. Have you looked into exercises for it, at all? I was told otherwise there isn't much that can be done. And btw, its not complaining, its bonding. Too much stoicism isn't good for your heart, either! Life goes on, but understanding your body and accepting your condition is part of it. Complaining doesn't make you weak, it makes you aware, and thats ok. For me, if I couldn't share these things with other people, I'd feel so alone. I don't think anyone wants that for you.

Gemgirl, you are a wealth of amazing and reassuring info!

Princess, I completely know what you mean about your SO. I live with mine, and if he hadn't been here the past couple years, I think I'd probably still be a fainted puddle on the floor. I don't want to be treated like I'm delicate, but in truth, we probably are, a bit. Its sweet to know how worried he is, but I hate worrying him. Its a really hard line to walk...

Callisto, I'm so sorry you're going through that and that you don't know what is going on! Have you talked to a cardiologist or a neurologist? My neuro was the person who caught my condition...

ETA: The connection between blood pressure and tachycardia that GemGirl is talking about is part of what I've got. Its autonomic dysfunction in that arena and people with OH often have POTS, and vice versa. Callisto, has anyone between dysautonomia to you? My POTS was only caught because they thought the blacking out upon standing was OH, as it is for many. Its when your blood pressure drops too low when you change position or when you're in one upright (sitting or standing) position for too long.

 

[gemgirl]

Date: 1/14/2010 12:57:11 PM
Author: Novel
Wow, I had no idea so many people here were dealing with these kinds of issues! Can I join in? I have something called POTS (postural orthostatic tachycardia syndrome). Its not electrical either, but when I change position (lying down to sitting and sitting to standing) I have tachycardia, black out, etc. Its fun, especially when I get up in the middle of a meeting. The tachycardia is frightening, as are the moments after it. And I think living in fear of it is almost just as bad.

Stepcutgirl, I hope it gets under control for you soon! I think what swingirl is saying about her DG is important, that its easier on his heart now.

Ksinger, I have hypermobility, too. I know, the Fibro thing is kind of annoying, I'm with you. I don't have the 11 spot tenderness but on any given day, I have shoulders, knees, and hips slipping in their sockets (a tendency to sublex) and the ligament and muscle pain, and weakness, that goes along with it. Have you looked into exercises for it, at all? I was told otherwise there isn't much that can be done. And btw, its not complaining, its bonding. Too much stoicism isn't good for your heart, either! Life goes on, but understanding your body and accepting your condition is part of it. Complaining doesn't make you weak, it makes you aware, and thats ok. For me, if I couldn't share these things with other people, I'd feel so alone. I don't think anyone wants that for you.

Gemgirl, you are a wealth of amazing and reassuring info!

Princess, I completely know what you mean about your SO. I live with mine, and if he hadn't been here the past couple years, I think I'd probably still be a fainted puddle on the floor. I don't want to be treated like I'm delicate, but in truth, we probably are, a bit. Its sweet to know how worried he is, but I hate worrying him. Its a really hard line to walk...

Callisto, I'm so sorry you're going through that and that you don't know what is going on! Have you talked to a cardiologist or a neurologist? My neuro was the person who caught my condition...

ETA: The connection between blood pressure and tachycardia that GemGirl is talking about is part of what I've got. Its autonomic dysfunction in that arena and people with OH often have POTS, and vice versa. Callisto, has anyone between dysautonomia to you? My POTS was only caught because they thought the blacking out upon standing was OH, as it is for many. Its when your blood pressure drops too low when you change position or when you're in one upright (sitting or standing) position for too long.

That was so well put Novel! I really do believe that understanding what's wrong and accepting that this is part of who I am, does help people to deal with it better. Asking questions, understanding our condition and sharing information is very important in helping people to cope better.

And here's a really flukey thing to share..... when I had my four day attack in November, my Fibromyalgia and Chronic Myofascial Pain syndrome was in rare form. So much so, I had rocks and spasms from behind my neck all the way down to under my shoulder blades. I noticed that when I moved a certain way, the tach got worse. Then I noticed that if I pressed on one of those trigger points or pressure points, I could cause a series of skipped beats. I said in a previous post that it took three EKGs for the cardio tech and PA to capture the running PACs. They finally recorded them by pressing on the rocks on my shoulders behind my neck. My chiropractor later explained to me that the nerves and supportive tendons and ligaments that come off of a particular area of our spines, wraps around our ribcage and connects to an area in the front of our chests that supports our hearts. It was my chiropractor's very specific manipulation of a certain area of my lower cervical /upper thoracic spine that started to eliminate my arrhythmia. Who knew, right? Regular MDs would never put too much belief in that, but it worked. I'm hypermobile too. I'll have to ask my Rheumy to explain that to me next month.

 

[Callisto]

Date: 1/14/2010 12:57:11 PM
Author: Novel
Wow, I had no idea so many people here were dealing with these kinds of issues! Can I join in? I have something called POTS (postural orthostatic tachycardia syndrome). Its not electrical either, but when I change position (lying down to sitting and sitting to standing) I have tachycardia, black out, etc. Its fun, especially when I get up in the middle of a meeting. The tachycardia is frightening, as are the moments after it. And I think living in fear of it is almost just as bad.


ETA: The connection between blood pressure and tachycardia that GemGirl is talking about is part of what I''ve got. Its autonomic dysfunction in that arena and people with OH often have POTS, and vice versa. Callisto, has anyone between dysautonomia to you? My POTS was only caught because they thought the blacking out upon standing was OH, as it is for many. Its when your blood pressure drops too low when you change position or when you''re in one upright (sitting or standing) position for too long.

My vision blacks out pretty much anytime I stand from any position besides like a desk chair or dining room chair (i.e. couch, bed, etc) Also any time I get chronically stressed I have trouble taking deep breaths, it feels like theres a weight on my chest. I always thought it was just mild anxiety but maybe thats related too.

Ugh I''m looking through different diseases right now and each one has odd related symptoms and I feel like I have all of them haha!
Digestional issues: check
Fatigue: check
Perceived difficulty breathing:check

haha maybe I just have everything....

 

[Novel]

Date: 1/14/2010 1:49:22 PM
Author: Callisto

My vision blacks out pretty much anytime I stand from any position besides like a desk chair or dining room chair (i.e. couch, bed, etc) Also any time I get chronically stressed I have trouble taking deep breaths, it feels like theres a weight on my chest. I always thought it was just mild anxiety but maybe thats related too.


Ugh I''m looking through different diseases right now and each one has odd related symptoms and I feel like I have all of them haha!

Digestional issues: check

Fatigue: check

Perceived difficulty breathing:check


haha maybe I just have everything....

Callisto, you should really talk to a doctor. That was how I felt. Major digestive issues, difficulty breathing when I switched position (it went along with the heart pounding and the blacking out), serious problematic fatigue... all of it. That all goes along with POTS for me, and for a bunch of other people I''ve spoken to. I know, the feeling that it could be a hundred different things made me feel crazy (I have chronic pain issues too, and not just the hypermobility) but it turned out not to be.

Its overwhelming, I know, but it doesn''t have to be...

 

[Callisto]

Date: 1/14/2010 1:58:11 PM
Author: Novel

Date: 1/14/2010 1:49:22 PM

Author: Callisto

My vision blacks out pretty much anytime I stand from any position besides like a desk chair or dining room chair (i.e. couch, bed, etc) Also any time I get chronically stressed I have trouble taking deep breaths, it feels like theres a weight on my chest. I always thought it was just mild anxiety but maybe thats related too.

Ugh I''m looking through different diseases right now and each one has odd related symptoms and I feel like I have all of them haha!

Digestional issues: check
Fatigue: check
Perceived difficulty breathing:check

haha maybe I just have everything....

Callisto, you should really talk to a doctor. That was how I felt. Major digestive issues, difficulty breathing when I switched position (it went along with the heart pounding and the blacking out), serious problematic fatigue... all of it. That all goes along with POTS for me, and for a bunch of other people I''ve spoken to. I know, the feeling that it could be a hundred different things made me feel crazy (I have chronic pain issues too, and not just the hypermobility) but it turned out not to be.

Its overwhelming, I know, but it doesn''t have to be...

Does your heart pounding always go along with changing positions? Cause that seems like the one thing that doesn''t really fit for me since for me those don''t seem to be related. The blacking out is when I change positions, but the heart pounding only seems to occur when I get little bursts of adreneline. The difficulty breathing though is more random, sometimes I can tell when its related to stress and other times it just happens out of the blue.

 

[Novel]

For me its just with changing positions or standing up too long. I don''t know about with the adrenaline but I totally understand why its worrying. Have you ever talked to someone about this? Were there any ideas put forward?

 

[Callisto]

Date: 1/14/2010 2:37:46 PM
Author: Novel
For me its just with changing positions or standing up too long. I don''t know about with the adrenaline but I totally understand why its worrying. Have you ever talked to someone about this? Were there any ideas put forward?

I have gotten the difficulty breathing looked at when I was in high school, they tested me or asthma and didn''t see any problems and figured it was just mild anxiety since I thought I was wonderwoman in high school and was going nonstop from 6am-midnight every day.

My primary doctor for the past 21 years has been a pediatrician but I never really mentioned the heart issues to him, especially since I was worried if they put a 30 day monitor on me and I didn''t happen to have an episode that month they would just think I was overreacting.

I''ve known I have fairly low blood pressure for a while so I always assumed that that was the cause of the blacking out. I just try to be careful when I get up and just deal with it. I''ve never fainted from it or anything so it hasn''t posed a threat to me.

Also I know this is a really bad thought, but I don''t want to get all checked up and end up with some mild issue that would then give insurance companies a reason to deny me from anything. I have really good health for the most part and I hate for something minor and nonthreatening to me be a scratch on that record. I know that''s not a good reason to put myself at risk - I don''t need to be reassured of that. It''s just a thought I''ve had.

 

[ksinger]

Well, this IS a thread isn''t it? Lots of great info, and everyone has been so kind. Thanks guys. It is kinda nice to know I''m not alone in all this.

On the hypermobility, I never knew a name for it even existed, until the last year or so. I just knew I had freaky fingers, really flat feet and could bend over and touch my palms to the floor and fold my ankles in (while knees are locked straight) at a 90, and clap my feet. Clapping feet like a seal: great icebreaker at parties with alcohol. (I''ve since consciously noticed that my knees and elbows hyperextend too. Talk about being unaware, huh?) Not so fun when that ankle folds in between one step and the next and you hit the ground the next instant. After 5 or six times, those injuries accumulate and they never quite heal. The real kicker was the quite severe ankle sprain I had in ''99. Never quiiiiite the same after that one. Of course Miss Stoic here didn''t go to the dr with THAT one either.

I''ve run myself through the Beighton and Brighton tests for hypermobility (which the docs did not, just listened to me, saw my hands and feet and said, "HMS". But I score a 5/9 on the Beighton, and have one major and 2 minor criteria on the Brighton. Pretty clear-cut. I know the cardiologist latched on to me telling him I was hypermobile, like a dog on point. Looking for Ehlers-Danlos (seems unlikely) or Marfan''s (clearly no) I suspect, although from what you guys are telling, it looks like garden-variety benign (anything but, right ladies?) HMS has some link to heart issues. And I''ve been vaguely dizzy for a while now too. I even asked my husband if I had complained recently of dizziness and he said, yes. I''d blown that under my conscious radar under the heading of "sucking it up" too, apparently. Dizziness doesn''t appear to be POTS, might be OH, could be psychsomatic. Beyond the obvious confirmation I''ve done on my own with the seemingly insignificant diagnosis of HMS, I really don''t feel qualified to do my own diagnosis here. Heart stuff is too complicated. But I do read a bit. Probably shouldn''t. Again, the heart issues seem to be mild compared to some. But unless I can get the symptoms associated with HMS under some form of control, I''m going downhill fast. I have one friend who honestly thought I didn''t really want to see her anymore, and I finally said, "Look, it''s not YOU, I can''t DO what we used to do, and I just feel like crap so often." I think she finally understood. But isn''t that just awful? To feel so rotten that you aren''t up to visiting with friends?

I do have decent days - I don''t mean to make it sound like I don''t, but I just tire out quickly and unpredictably. An hour walking the mall can have me hurting by the end of the trip, laid OUT the next day. Very frustrating.

 

[stepcutgirl]

This has turned into nice supportive forum with lots of knowledge. I''m happy to see that. Thanks for all the supportive thoughts everyone.

Swinggirl-I''ve been told that exact thing, that the stress and damage that is happening to my heart will be improved if/when I get a pacemaker put in.I''m glad your dh is improving.

Ksinger-complain away,we are all in the same boat of sorts.

Callisto, I was told MOST people with tachycardia are very sensitive to adrenaline and that too much adrenaline pumping into your system can cause it, maybe because you do sports and on top of that get nervous you might be getting a lot? And maybe it takes hours to get through your system so that is why it still bothers you later.

Gengirl-I''m in agreement with you on the betablockers, on the dose i''m on i''m still tachycardic and my blood pressure is super low! And I feel like I''m a zombie, like i''m just kinda going through the motions of life but I''m not really "there". I have been told that tachycardia is not a benign condition because when you are in tachycardia your heart is not pumping enough oxygen to your body so everything is stressed. I can see where a brief episode might be harmless but it makes sense that after a long time or many brief episodes your organs are deoxygenated. And when it''s bad...it is scary!

Novel-Is there anything you can do?!?!

 

[princesss]

A few random thoughts:

Tachycardia and adrenaline - definitely a correlation for me! Also I find that caffeine can really affect it. It doesn''t cause it, but I am more prone to bouts of tachycardia when my caffeine intake is high. Just something to pay attention to.

Trouble breathing - What happened for me was that I finally had enough and went to see a pulmonologist. After finding out my lung function is pretty darn awesome (somewhere around 120% of normal), my doc started asking about when it started. It turns out that my heart and ability to breathe normally are super sensitive to my weight. I lost 10 pounds and the majority of my problems went away. So if you think back and there''s a possible correlation, don''t forget to mention that. (It usually only happened when I was stressed, and I''d feel like I couldn''t get a good breath in - what works for me is leaning forward. Seems silly, but it takes all the weight of the *ahem* feminine bits off your chest and makes it that much easier to breath.)

Btw - I realized I hadn''t told you guys what I''ve got! I have myocardial bridging (where the heart muscle grows over one of my bigger arteries and squeezes it shut when my heart beats, so I get insufficient bloodflow, which made my heart beat faster to get the blood pumping correctly - my resting heart rate went from 62 to 99 in 6 months) with a small mitral valve prolapse. They thought there was an electrical problem too, but it turns out I''m just borderline - woohoo! One less problem for me.

And just an FYI - it''s cold and flu season, so remember heart patients and pseudophedrine DO NOT MIX. Don''t do what I did and naively believe your doctor knows best - my very panicked post from the night I took it is floating around here somewhere.