Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Celia It might be good to see a cardiologist. It is recommended that mito folk have a yearly echocardiogram and EKG. laurie > dear Groupies, since I posted about my muscle problems I thought I'd > ask one more question. I have been having probs for a long time now > with rapid heartbeat: that is up around 110-120. My family doc is > content with trying to give me a BP medication that will also lower my > heartrate. To this end, she now has me on cardiazam (as well as altace > and a diuretic) and my HR has lowered to about 90. My questions is, do > you think I should pursue investigating the cause of my hight heart > rate, or just be content that is is down to the 90s. It has never been > investigated, but because of my intermittant problems with long QT > syndrome i do have regualr ECGs. Thanks again for your help, Celia > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 ---Yes, I think it is a good idea to check for abnormalities of the heart. If your heart checks out OK, it may be Postural Orthostatic tachycardia syndrome a form of dysautonomia. This is diagnosed with the tilt table test. If you have this it is very helpful to learn as much as you can about it. Even though it is not serious, it symptoms are very disabling. There are many ways to help alleviate and avoid symptoms. One of the best sources for patients to learn about dysautonomia is through DINET (dysautonomia information network) Just type it into your browser. Even if your think you may have this...it is very important to rule out other serious heart conditions. Hope this helps. Dawn Anich In , " cghng888 " wrote: > dear Groupies, since I posted about my muscle problems I thought I'd > ask one more question. I have been having probs for a long time now > with rapid heartbeat: that is up around 110-120. My family doc is > content with trying to give me a BP medication that will also lower my > heartrate. To this end, she now has me on cardiazam (as well as altace > and a diuretic) and my HR has lowered to about 90. My questions is, do > you think I should pursue investigating the cause of my hight heart > rate, or just be content that is is down to the 90s. It has never been > investigated, but because of my intermittant problems with long QT > syndrome i do have regualr ECGs. Thanks again for your help, Celia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 My MDA mito doctor, and also Dr. Shoffner in Atlanta, recommend a baseline from a cardiologist, in addition to audiology tests. I don't have the full list of " baselines " they recommend, but I remember those two. I had both per this advice, and I now know I have a slow heart rate and also arhythmias, but did well on the stress test. I also have good hearing but one hearing value was weird (acoustic reflex) and that may be due to mito. Take care, RH > dear Groupies, since I posted about my muscle problems I thought I'd > ask one more question. I have been having probs for a long time now > with rapid heartbeat: that is up around 110-120. My family doc is > content with trying to give me a BP medication that will also lower my > heartrate. To this end, she now has me on cardiazam (as well as altace > and a diuretic) and my HR has lowered to about 90. My questions is, do > you think I should pursue investigating the cause of my hight heart > rate, or just be content that is is down to the 90s. It has never been > investigated, but because of my intermittant problems with long QT > syndrome i do have regualr ECGs. Thanks again for your help, Celia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 dear Laurie, i guess i just needed to hear it from someone. When I saw the mito specialist she said I should have an echo but then she forgot to put that in a letter to my family doc so it didn't get done. i didn't want to rock the family doc's boat, but i keep thinking i should have requested one. Thanks for the shove in that directing, Celia > > dear Groupies, since I posted about my muscle problems I thought I'd > > ask one more question. I have been having probs for a long time now > > with rapid heartbeat: that is up around 110-120. My family doc is > > content with trying to give me a BP medication that will also lower my > > heartrate. To this end, she now has me on cardiazam (as well as altace > > and a diuretic) and my HR has lowered to about 90. My questions is, do > > you think I should pursue investigating the cause of my hight heart > > rate, or just be content that is is down to the 90s. It has never been > > investigated, but because of my intermittant problems with long QT > > syndrome i do have regualr ECGs. Thanks again for your help, Celia > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 -Thanks Dawn, As I said to Laurie, I think I just needed some encouragement to bug my family doc into sending me for these things, Celia -- In , " dawnanich " wrote: > ---Yes, I think it is a good idea to check for abnormalities of the > heart. If your heart checks out OK, it may be Postural Orthostatic > tachycardia syndrome a form of dysautonomia. This is diagnosed with > the tilt table test. If you have this it is very helpful to learn as > much as you can about it. Even though it is not serious, it symptoms > are very disabling. There are many ways to help alleviate and avoid > symptoms. One of the best sources for patients to learn about > dysautonomia is through DINET (dysautonomia information network) Just > type it into your browser. Even if your think you may have this...it > is very important to rule out other serious heart conditions. Hope > this helps. Dawn Anich > > > In , " cghng888 " wrote: > > dear Groupies, since I posted about my muscle problems I thought I'd > > ask one more question. I have been having probs for a long time now > > with rapid heartbeat: that is up around 110-120. My family doc is > > content with trying to give me a BP medication that will also lower > my > > heartrate. To this end, she now has me on cardiazam (as well as > altace > > and a diuretic) and my HR has lowered to about 90. My questions is, > do > > you think I should pursue investigating the cause of my hight heart > > rate, or just be content that is is down to the 90s. It has never > been > > investigated, but because of my intermittant problems with long QT > > syndrome i do have regualr ECGs. Thanks again for your help, Celia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Celia You are very welcome. Please keep us updated. laurie > dear Laurie, i guess i just needed to hear it from someone. When I saw > the mito specialist she said I should have an echo but then she forgot > to put that in a letter to my family doc so it didn't get done. i > didn't want to rock the family doc's boat, but i keep thinking i > should have requested one. Thanks for the shove in that directing, Celia > > > > dear Groupies, since I posted about my muscle problems I thought I'd > > > ask one more question. I have been having probs for a long time now > > > with rapid heartbeat: that is up around 110-120. My family doc is > > > content with trying to give me a BP medication that will also lower my > > > heartrate. To this end, she now has me on cardiazam (as well as altace > > > and a diuretic) and my HR has lowered to about 90. My questions is, do > > > you think I should pursue investigating the cause of my hight heart > > > rate, or just be content that is is down to the 90s. It has never been > > > investigated, but because of my intermittant problems with long QT > > > syndrome i do have regualr ECGs. Thanks again for your help, Celia > > > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements > contained herein are not necessarily those of the list moderators. The > author of this e mail is entirely responsible for its content. List > members are reminded of their responsibility to evaluate the content > of the postings and consult with their physicians regarding changes in > their own treatment. > > > > > > Personal attacks are not permitted on the list and anyone who > sends one is automatically moderated or removed depending on the > severity of the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Dear Lauire, I was just wandering about my rapid heart beat. It seems to go up an anytime... even most of the time now. I tried your little test for POTS the other day and standing after sitting doesn't seem to particularly bring it on. Can it still be classed as autonomic disfunction in this case. I have had ECGs and an echo and it just shows rapid heart beat (and a slight amount of mitral insufficiency, normal for my age the doc said) My doc has been treating me for my high BP and rapid heart beat with cardiazam(diitazem HCl, diltiaz) and it seems to work for a while then both HR and BP go up again so she increses the dose. I think this drug is more for thsoe suffering from coronary artery disease. I beleive you once said you took beta blockers for the raid HR. Is this the way to go? Should I be suggesting this to her. I am seeing her about this on Tuesday.Any advice appreciated, Celia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Hi Celia, We were all tested for autonomic testing and my 20 year old son is the most severe he has severe POTS/ Dysautonomia. My daughter and myself have POTS/ Dysautonomia to a more moderate degree. Before we were tested a friend of mine who is a RN nurse and worked in Neurology for years she also has POTS. She told us to do what she calls the poor man tilt test taking your blood pressure lying and than standing it worked for us best of luck. Smiles, Donna K ---- cghng888 black_lake@...> wrote: > Dear Lauire, I was just wandering about my rapid heart beat. It seems > to go up an anytime... even most of the time now. I tried your little > test for POTS the other day and standing after sitting doesn't seem to > particularly bring it on. Can it still be classed as autonomic > disfunction in this case. I have had ECGs and an echo and it just > shows rapid heart beat (and a slight amount of mitral insufficiency, > normal for my age the doc said) My doc has been treating me for my > high BP and rapid heart beat with cardiazam(diitazem HCl, diltiaz) and > it seems to work for a while then both HR and BP go up again so she > increses the dose. I think this drug is more for thsoe suffering from > coronary artery disease. I beleive you once said you took beta > blockers for the raid HR. Is this the way to go? Should I be > suggesting this to her. I am seeing her about this on Tuesday.Any > advice appreciated, Celia > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Celia I think it was that told you how to do the test. I do take a beta blocker and ACE inhibitor, but for my blood pressure. My blood pressure and heart rate still bounce around if my dysautonomia is acting up. Mine seems to come for several days to a coouple of weeks and then go away for several weeks. My blood pressure goes up and heart rate drops as the day progresses when my autonomic system is doing it's thing. I don't get the rapid heart rate, but that may be due to the meds or mito cocktail or have no relationship at all. There is an article in the most recent issue of Quest on cardiac issues in neuromuscular disease that is interesting. I'm sure it becomes that more complex with mito, which isn't covered, but I found it interesting. laurie > Dear Lauire, I was just wandering about my rapid heart beat. It seems > to go up an anytime... even most of the time now. I tried your little > test for POTS the other day and standing after sitting doesn't seem to > particularly bring it on. Can it still be classed as autonomic > disfunction in this case. I have had ECGs and an echo and it just > shows rapid heart beat (and a slight amount of mitral insufficiency, > normal for my age the doc said) My doc has been treating me for my > high BP and rapid heart beat with cardiazam(diitazem HCl, diltiaz) and > it seems to work for a while then both HR and BP go up again so she > increses the dose. I think this drug is more for thsoe suffering from > coronary artery disease. I beleive you once said you took beta > blockers for the raid HR. Is this the way to go? Should I be > suggesting this to her. I am seeing her about this on Tuesday.Any > advice appreciated, Celia > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Hi Celia, I forgot to mention there is a websight called POTS Place.com www.dynakids.org and www.ndrf.org are also great reading information good luck. Smiles, Donna K ---- Laurie Fitzgerald laurie.fitzgerald@...> wrote: > Celia > > I think it was that told you how to do the test. I do take a > beta blocker and ACE inhibitor, but for my blood pressure. My blood > pressure and heart rate still bounce around if my dysautonomia is > acting up. Mine seems to come for several days to a coouple of weeks > and then go away for several weeks. My blood pressure goes up and > heart rate drops as the day progresses when my autonomic system is > doing it's thing. I don't get the rapid heart rate, but that may be > due to the meds or mito cocktail or have no relationship at all. > > There is an article in the most recent issue of Quest on cardiac > issues in neuromuscular disease that is interesting. I'm sure it > becomes that more complex with mito, which isn't covered, but I found > it interesting. > > laurie > > > > Dear Lauire, I was just wandering about my rapid heart beat. It seems > > to go up an anytime... even most of the time now. I tried your little > > test for POTS the other day and standing after sitting doesn't seem to > > particularly bring it on. Can it still be classed as autonomic > > disfunction in this case. I have had ECGs and an echo and it just > > shows rapid heart beat (and a slight amount of mitral insufficiency, > > normal for my age the doc said) My doc has been treating me for my > > high BP and rapid heart beat with cardiazam(diitazem HCl, diltiaz) and > > it seems to work for a while then both HR and BP go up again so she > > increses the dose. I think this drug is more for thsoe suffering from > > coronary artery disease. I beleive you once said you took beta > > blockers for the raid HR. Is this the way to go? Should I be > > suggesting this to her. I am seeing her about this on Tuesday.Any > > advice appreciated, Celia > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail > > is entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with > > their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 -Thanks Laurie, I'll look up the Quest article, celia -- In , " Laurie Fitzgerald " wrote: > > Celia > > I think it was that told you how to do the test. I do take a > beta blocker and ACE inhibitor, but for my blood pressure. My blood > pressure and heart rate still bounce around if my dysautonomia is > acting up. Mine seems to come for several days to a coouple of weeks > and then go away for several weeks. My blood pressure goes up and > heart rate drops as the day progresses when my autonomic system is > doing it's thing. I don't get the rapid heart rate, but that may be > due to the meds or mito cocktail or have no relationship at all. > > There is an article in the most recent issue of Quest on cardiac > issues in neuromuscular disease that is interesting. I'm sure it > becomes that more complex with mito, which isn't covered, but I found > it interesting. > > laurie > > > > Dear Lauire, I was just wandering about my rapid heart beat. It seems > > to go up an anytime... even most of the time now. I tried your little > > test for POTS the other day and standing after sitting doesn't seem to > > particularly bring it on. Can it still be classed as autonomic > > disfunction in this case. I have had ECGs and an echo and it just > > shows rapid heart beat (and a slight amount of mitral insufficiency, > > normal for my age the doc said) My doc has been treating me for my > > high BP and rapid heart beat with cardiazam(diitazem HCl, diltiaz) and > > it seems to work for a while then both HR and BP go up again so she > > increses the dose. I think this drug is more for thsoe suffering from > > coronary artery disease. I beleive you once said you took beta > > blockers for the raid HR. Is this the way to go? Should I be > > suggesting this to her. I am seeing her about this on Tuesday.Any > > advice appreciated, Celia > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail > > is entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with > > their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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