Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 I think those are all excellent points. I also think this needs to be checked carefully and immediately. I also wondered about blood pressure. Various meds may interact and react differently with all of us. Bring a list of any med's you are taking Randall even over the counter and things like aspirin. Good luck! Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Randall, I too have the cholesterol issues, but was told that due to having Mito I should not take Stanton based drugs. I believe it is due to the fact that Stanton drugs block the Mito cells from working properly and if you are already compromised you can't afford to block the working ones. Maybe someone else has a little more info on this. I know we avoid them with my son as well due to his Mito. You might want to ask on this one from the Nuro or the cardiologist. O Mom to Kira almost 16 yrs- Mitochondrial Myopathy- Maternally Inherited Dysautonomia-Cyclic Vomiter-Complex Regional Pain Syndrome- ASD/VSD mitral valve repair 2000-G tube 1999 13yrs- Mitochondrial Myopathy-Maternally Inherited Dysautonomia- Complex Regional Pain Syndrome- Lipoma removals 2004/2005 upper neck area. Krisalynn 10 yrs- Mitochondrial Myopathy Maternally Inherited Dysautonomia- Complex Regiaonl pain Syndrome set off by compound break of arm 2005-hypertonia of the bladder Enrique- The dad of the group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 I've noticed people mentioning heart-related issues here. Up until now, assumed I didn't have any or didn't make the possible connection. For the past 4-5 days I've been having some intermittent, if mild, discomfort in chest and sometimes a weird sensation in head that is hard to describe. It is sort of like light-headedness but not exactly. Exercising seems to bring on these symptoms but they also seem to occur when at rest. I had a similar " flare up " of these kind of symptoms about 4 - 5 months ago that lasted for a few weeks, then seemed to get better. Went to the ER a few times and to Cardiologist. Had various tests - regular echo, CT coronary angiography and, recently, pulmonary testing that involved treadmill testing - that did not show anything. In fact CT coronary angiography surprisingly showed no coronary blockages. Have had Thallium stress tests - most recent about a year ago - that were considered normal. Cardiologist said symptoms most likely due to Costochondritis of ribcage, which he had dx years before and which I definitely have (soreness of chest muscles, rib area). I'm pretty sure that some of the symptoms are related to the Costochondritis, but not sure they all are. Aside from that, just mild, intermittent mitral valve prolapse (not always seen on echo) and high cholesterol, currently controlled by statins. Wondering if any of these symptoms could be related to Mito (which I still have doubts about neuros dx). Are there specific things the Cardiologist would need to look for to find mito-related cardiac problems? I ask this because the Cardiologist didn't know of the Mito dx when he did work up (and past work ups). I do have some bradycardia (resting heart rate is usually around 55 - 60, though once in awhile in 40's) which seems to run in mother's side and father has atrial fibrillation, which 1 or 2 of his siblings apparently also have. I exercise pretty regularly and am in pretty good cardiovascular shape for someone in their early 50s. Is bradycardia or mitral valve prolapse related to Mito? Think I may have mentioned it before, but apparently both mitral valve prolapse AND some myopathies are often associated with a very high-arched palate. Is this common in Mito folks? If so, might point to connection between Mito and Mitral Valve Prolapse (MVP), and to connective tissue disorder, which MVP might be related to. Wondering if I should call the Cardiologist and specifically mention the Mito diagnosis in case there are things he should test or look for that he might not otherwise have done. For example, have never had a stress echo and wonder if I would need this to rule out Mito-related cardiac problems, despite having had regular echos, thallium stress tests (even halter monitors many years ago), etc. I want and need to exercise for physical and mental health) but am again a bit scared to do much while having symptoms. Was on treadmill yesterday and head symptoms seemed to start up when got up to a fairly high intensity. Would appreciate any thoughts. The neuro who says I have Mito didn't mention anything about cardiac complications. Does CoQ10 help with the Mito cardiac problems? I know, from my past experience, that anxiety about possible cardiac symptoms can exacerbate symptoms, if not create some of them, so don't want to simply give in to this anxiety and avoid exercise, but also don't want to do something foolish either. Also realize, from past experience, that anxiety or depression about other things can bring on some apparent cardiac-related symptoms in the first place. Hope everyone here has a good 4th weekend. Randall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Hi, I'm not a doc, so keep that in mind. I have had various mild heart issues that I have been lucky enough to seem to have been resolved by upping my CoQ10 level. I had left ventricular diastolic dysfunction that is no longer present, per the same cardiologist that dx'ed it in the first place. Before that I had tacicardia (sp) episodes, especially at night at rest, CoQ10 increase took care of that too. The discomfort in your chest should be checked out. I would mention the mito as there might be things that they would only look for cardiac wise in a much older person that they might look at now if they knew about the mito. THAT, is if the doc knows anything about mito. Basically, anything cardiac can happen more quickly with mito if the heart happens to be one of the muscles with a lot of bad mito % wise. Don't assume it is the ribcage issue like before. The weird sensation in the head sound like it might be what I experienced when my blood pressure was up. I have determined two things that raise my blood pressure, taking Naprosyn (other NSAIDs don't seem to be an issue) and of all weird things, creatine. Yes, CoQ10 is known to help with some cardiac issues from what I have read and from my own cardiologist. He was thrilled to find out I took CoQ10 and Fish Oil. Are you aware that Statins deplete even non mito folks levels of CoQ10? That is another reason you might want to ask your doc about upping it. I would get things checked out. Let us know how you are doing and if you go to the doc what they say. I hope you have a wonderful holiday too. Randall Bosin wrote: > I've noticed people mentioning heart-related issues here. Up until > now, assumed I didn't have any or didn't make the possible connection. > For the past 4-5 days I've been having some intermittent, if mild, > discomfort in chest and sometimes a weird sensation in head that is > hard to describe. It is sort of like light-headedness but not exactly. > Exercising seems to bring on these symptoms but they also seem to > occur when at rest. I had a similar " flare up " of these kind of > symptoms about 4 - 5 months ago that lasted for a few weeks, then > seemed to get better. Went to the ER a few times and to Cardiologist. > Had various tests - regular echo, CT coronary angiography and, > recently, pulmonary testing that involved treadmill testing - that did > not show anything. In fact CT coronary angiography surprisingly showed > no coronary blockages. Have had Thallium stress tests - most recent > about a year ago - that were considered normal. Cardiologist said > symptoms most likely due to Costochonditis of ribcage, which he had dx > years before and which I definitely have (soreness of chest muscles, > rib area). I'm pretty sure that some of the symptoms are related to > the Costochondritis, but not sure they all are. Aside from that, just > mild, intermittent mitral valve prolapse (not always seen on echo) and > high cholesterol, currently controlled by statins. > > Wondering if any of these symptoms could be related to Mito (which I > still have doubts about neuros dx). Are there specific things the > Cardiologist would need to look for to find mito-related cardiac > problems? I ask this because the Cardiologist didn't know of the Mito > dx when he did work up (and past work ups). I do have some bradycardia > (resting heart rate is usually around 55 - 60, though once in awhile > in 40's) which seems to run in mother's side and father has atrial > fibrillation, which 1 or 2 of his siblings apparently also have. I > exercise pretty regularly and am in pretty good cardiovascular shape > for someone in their early 50s. Is bradycardia or mitral valve > prolapse related to Mito? Think I may have mentioned it before, but > apparently both mitral valve prolapse AND some myopathies are often > associated with a very high-arched palate. Is this common in Mito > folks? If so, might point to connection between Mito and Mitral Valve > Prolapse (MVP), and to connective tissue disorder, which MVP mightbe > related to. > > Wondering if I should call the Cardiologist and specifically mention > the Mito diagnosis in case there are things he should test or look for > that he might not otherwise have done. For example, have never had a > stress echo and wonder if I would need this to rule out Mito-related > cardiac problems, despite having had regular echos, thallium stress > tests (even halter monitors many years ago), etc. I want and need to > exercise for physical and mental health) but am again a bit scared to > do much while having symptoms. Was on treadmill yesterday and head > symptoms seemed to start up when got up to a fairly high intensity. > > Would appreciate any thoughts. The neuro who says I have Mito didn't > mention anything about cardiac complications. Does CoQ10 help with the > Mito cardiac problems? I know, from my past experience, that anxiety > about possible cardiac symptoms can exacerbate symptoms, if not create > some of them, so don't want to simply give in to this anxiety and > avoid exercise, but also don't want to do something foolish either. > Also realize, from past experience, that anxiety or depression about > other things can bring on some apparent cardiac-related symptoms in > the first place. > > Hope everyone here has a good 4th weekend. > > Randall > > Quote Link to comment Share on other sites More sharing options...
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