Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Hi everyone thank you for all your input on the central apnea. Here is our other big challenge. Max struggles daily thru many tachycardias. That means her heart goes over 170. Hers usually trips 200 easily. Only in a resting position will her heart slow down to somewhere around 110. Still very high for a little 5 year old. Does anyone else have experience with this? Our cardio is scratching is head. She had an ech and EKg and a 24 hours monitor session. Her heart itself is fine. Something else is causing it. And no one knows how long she will be able to handle these high levels. thanks rosy, mum to max, 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 the FIRST sign something was up with me (now im not officially mito yet, my son is being worked up and we are awaiting muscle biopsy results, but his labwork and MRI are pointing to mito... i have had MANY bizarre health problems so they are wonderign about me too). was when i was 12 my resting heart rate was 120. i couldnt run, as after about 15 seconds my heart rate would be over 200. they did a holter monitor (24 hour monitor) on me and at several points my heart rate actually topped out at nearly 300. they had no explanation for this, and no treatment as it wasnt considered dangerous at the time. after I had my son, I crashed and developed something called POTS (postural orthostatic tachycardia syndrome - basically when i stand up my heart rate goes way up and this causes my blood pressure to drop). they think it HAS to be related to my history of tachycardia because its too much of a coincidence... the treatment for me is beta blockers, and florinef (increases blood volume, and therefor blood pressure). the beta blockers sole role is to slow down my heart. my resting heart rate is now usually around 70. As a child my doctor (I was never even referred to a cardiologist!) played it conservatively. He agreed it was abnormal that my heart went so fast, but the bloodwork and tests all came back normal, so he just wanted to watch it. I REALLY wish he hadnt. my childhood and teenage years were very difficult physically and I am quite certain it was partly the result of the fact that my heart was always racing. I was always tiered, I could NOT run, or take part in strenuous activities (even though I was athletic, I could only participate in sports like rock climbing, strength rather than cardiac workouts). I was made to feel like I was just being lazy by the vast majority of my gym teachers (until i actually took one aside and made him check my pulse after I ran one lap... he couldnt count it as it was so fast. he stopped hassling me after that.) looking back I wish they had done more. I realise its hard to consider medicating a child for something that may not be life threatning, but quality of life needs to be considered as well... if I could do it over again, I would look for another opinion and find a doctor that was willing to at least TRY treatment. Since I started on the beta blockers, I have my energy back, I am active, I can walk around the block without ending up out of breath... it took 3 cardiologists before I found one that had the attitude " it may not be life threatning but your quality of life stinks so we need to do SOMETHING " . and while i wish i wasnt dependent on meds, I gotta say Im way happier on them... Does your daughter have any symptoms related to the tachycardia (breathlessness, excercise intoloerance?), I was assured by several docs that the fast heartrate was not inherintly dangerous, just exhausting, does she tire quickly? Is her cardiologist considering any sort of treatment? If I learned one thing from my experience, its that sometimes you need to treat the symptom even when there is no cause apparent... alot of docs hate to do this, but in some people you will never find a root cause for a problem and the least you can do is alleviate it... I hope you guys get somewhere with it! how is her blood pressure? does she get faint, or lightheaded? has she passed out at all? does she have trouble standing for long periods? One of their theorys on me is that my heart rate and blood pressure issues are caused by autonomic dysfunction, and I know this is not uncommon among mito patients... good luck! Keely > Hi everyone > > thank you for all your input on the central apnea. Here is our other big > challenge. Max struggles daily thru many tachycardias. That means her heart goes > over 170. Hers usually trips 200 easily. Only in a resting position will her > heart slow down to somewhere around 110. Still very high for a little 5 year > old. > > Does anyone else have experience with this? Our cardio is scratching is head. > She had an ech and EKg and a 24 hours monitor session. Her heart itself is > fine. Something else is causing it. And no one knows how long she will be able > to handle these high levels. > > thanks > rosy, mum to max, 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 Rosy, this is funny you should mention this because I was just discussing this very issue two minutes ago with another mom. My daughter Molly I beleive is having tachycardia. has diagnosed sinus tach too. I have been diagnosed with POTS> Now the thing is that I am treated with a med to slow down my heartrate while is not. Molly has not yet been evaluated. I am going to get her into a cardiologist soon. I really don't have any answers for you, but hopefully will be finding out soon. I know others have issues with this and maybe can offer some guidence. I think it causes complete exhaustion to have your heart running at the fast of a pace all of the time-like running a marathon all of the time not to mention the damage it must be doing to the heart itself??? i will let you know if I find out anything. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Both of my children are tachycardic. Not sure why. My son also has some non-specific T wave changes. Quote Link to comment Share on other sites More sharing options...
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