Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Jo: I was just deleting e-mails and have a question re your falls. Have a high number of them occurred after getting up from a meal, during, or with extra exertion or when you have gotten up and performed an action with arms above your head....or when you became too hot in the sun. At ages 4-10 Meaghan would have drop episodes, where she would get up quickly from dinner, always at end of meal and fall when at the same distance from the table (not every day) and it would seem as though her foot appeared to slip. She would then smash down to her knees and experience horrible knee pain....would be down in a flash. We even wondered if she was having some sort of petit mal seizure because of the suddenness. We now understand that this was post prandial hypotension or fainting and a very sudden drop in Blood Pressure after eating. When you eat, blood rushes to the stomach for digestion and you have less going to the brain and extremities. At that age she also always sat on her haunches( feet under her butt, knees bent)so that when she stood up she would get a rush of blood to her lower extremities. It confounded us for years. At 17 she can precipitate a very quick low blood pressure(fainting)episode by rapid change in temperature, say going from cool air conditioning to the hot exterior temperature of a July day (very quick), and she can go down. Barbecuing can do it too. Just the blast of heat from opening a hot barbecue can very quickly precipitate it. She has had to put her hand out to steady herself and has even burned herself so it is very quick, no warning. Getting up from sitting and reaching to the top cupboard and she can go down. She describes it as her knees suddenly failing to support and she is down, but she does not pass out, just foggy. Perhaps, with your very loose joints, the dislocation happens as a result of quickly meeting the floor. With using crutches your arms and hands are hanging down and encouraging pooling in those extremities. Perhaps the crutches are contributing somehow. Meaghan gets amazing colour changes in extremeties if hands hang down at her sides for a time (get blue) and then she raises them above her head( go white), very noticeable, particularly in hot weather as heat causes blood vessels to dilate more with quicker and greater pooling of blood in vessels. It was much worse when she had a borderline low hemaglobin. Bringing up her hemaglobin even a bit helped and she dislikes meat. Perhaps using the crutches contributes in some way and a walker where your hands are at waist level would be just enough to help. Would it give support tho? Just my thoughts, as it is only this very day that I am realising it was sitting on her haunches that must have been the factor that tipped the balance. Roll it over in your mind and see what you think. There are a huge number of strategies to cope with the effects of this syndrome and we have had to use every one. Do you jiggle your legs LOTS before getting out of bed in the morning. Difficult to remember when sleepy! I do hope examining the events surrounding falls and looking for these triggers I mentioned might give you clues to possible prevention. Bernie Re: Mutant update! Thanks for your kind thoughts and support Bernie, my surgeon is very keen for me to get my cardiology assessment too and has actually written to my cardiologists expressing his concerns. I have injured myself in a few falls caused by my blacking out and altered BP/HR so it's definitely an issue that needs sorting out. I'm really hoping that getting to the bottom of that will help avoid some of my falls and injuries, but sadly most of my recent falls have been more joint failure induced than a case of blacking so we are fighting two causes of falling! My leg joints have a habit of just letting go and dislocating at the slightest things, leaving me in a heap and nursing more bruises, tears or breaks - that's why I'm splinted up to look like an Egyptian Mummy right now and having to use the walkers and wheelchair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Jo: I was just deleting e-mails and have a question re your falls. Have a high number of them occurred after getting up from a meal, during, or with extra exertion or when you have gotten up and performed an action with arms above your head....or when you became too hot in the sun. At ages 4-10 Meaghan would have drop episodes, where she would get up quickly from dinner, always at end of meal and fall when at the same distance from the table (not every day) and it would seem as though her foot appeared to slip. She would then smash down to her knees and experience horrible knee pain....would be down in a flash. We even wondered if she was having some sort of petit mal seizure because of the suddenness. We now understand that this was post prandial hypotension or fainting and a very sudden drop in Blood Pressure after eating. When you eat, blood rushes to the stomach for digestion and you have less going to the brain and extremities. At that age she also always sat on her haunches( feet under her butt, knees bent)so that when she stood up she would get a rush of blood to her lower extremities. It confounded us for years. At 17 she can precipitate a very quick low blood pressure(fainting)episode by rapid change in temperature, say going from cool air conditioning to the hot exterior temperature of a July day (very quick), and she can go down. Barbecuing can do it too. Just the blast of heat from opening a hot barbecue can very quickly precipitate it. She has had to put her hand out to steady herself and has even burned herself so it is very quick, no warning. Getting up from sitting and reaching to the top cupboard and she can go down. She describes it as her knees suddenly failing to support and she is down, but she does not pass out, just foggy. Perhaps, with your very loose joints, the dislocation happens as a result of quickly meeting the floor. With using crutches your arms and hands are hanging down and encouraging pooling in those extremities. Perhaps the crutches are contributing somehow. Meaghan gets amazing colour changes in extremeties if hands hang down at her sides for a time (get blue) and then she raises them above her head( go white), very noticeable, particularly in hot weather as heat causes blood vessels to dilate more with quicker and greater pooling of blood in vessels. It was much worse when she had a borderline low hemaglobin. Bringing up her hemaglobin even a bit helped and she dislikes meat. Perhaps using the crutches contributes in some way and a walker where your hands are at waist level would be just enough to help. Would it give support tho? Just my thoughts, as it is only this very day that I am realising it was sitting on her haunches that must have been the factor that tipped the balance. Roll it over in your mind and see what you think. There are a huge number of strategies to cope with the effects of this syndrome and we have had to use every one. Do you jiggle your legs LOTS before getting out of bed in the morning. Difficult to remember when sleepy! I do hope examining the events surrounding falls and looking for these triggers I mentioned might give you clues to possible prevention. Bernie Re: Mutant update! Thanks for your kind thoughts and support Bernie, my surgeon is very keen for me to get my cardiology assessment too and has actually written to my cardiologists expressing his concerns. I have injured myself in a few falls caused by my blacking out and altered BP/HR so it's definitely an issue that needs sorting out. I'm really hoping that getting to the bottom of that will help avoid some of my falls and injuries, but sadly most of my recent falls have been more joint failure induced than a case of blacking so we are fighting two causes of falling! My leg joints have a habit of just letting go and dislocating at the slightest things, leaving me in a heap and nursing more bruises, tears or breaks - that's why I'm splinted up to look like an Egyptian Mummy right now and having to use the walkers and wheelchair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Hi Jo, boy oh boy does this all sound so familar!! You are right about developing " startegies " to keep from going down!! I have been really good at " disguising " my sinking annd faintinng spells. I amm sorry that I haven't been able to read all the posts on this but I 'm sure that you realize that this is POTS annd is very common with us edsers. THe stretchiness extends to the walls of our major arterties and veins and, as you said, blood pools in all our extremeties, making it hard for our heart to pump anny blood that it isnn't gettinng!!! Have you gone to www.NDRF.org site. It is a great site with a discussion group of very supportive people. Take care and stay off the floor! In a message dated 8/27/04 9:56:05 AM Eastern Daylight Time, russjjj@... writes: > > > > I managed to " cure " my drops (which may not have been as extensive as > others problems) by either getting up very slowly or very quickly and > energetically - it seemed to be the in-between efforts to get up that > were the problem. It's probably been years now since these have been a > bother to me. > > Somehow the muscular effort of getting up quickly, with muscles > squeezing the blood vessels in the arms and legs, kept enough blood in > my noggin - even at a time when I was given medication that > dramatically lowered my blood pressure. Needless to say, if someone > wants to try even quicker elevations as a coping mechanism, they > should try it out for a while with someone else there to catch them, > or at least over a soft bed for a while to be sure. > > > >Jo: > >I was just deleting e-mails and have a question re your falls. Have a > >high number of them occurred after getting up from a meal, during, or > >with extra exertion or when you have gotten up and performed an action > >with arms above your head....or when you became too hot in the sun. > > > >At ages 4-10 Meaghan would have drop episodes, where she would get up > >quickly from dinner, always at end of meal and fall when at the same > >distance from the table (not every day) and it would seem as though her > >foot appeared to slip. She would then smash down to her knees and > >experience horrible knee pain....would be down in a flash. We even > >wondered if she was having some sort of petit mal seizure because of the > >suddenness. We now understand that this was post prandial hypotension or > >fainting and a very sudden drop in Blood Pressure after eating. When you > >eat, blood rushes to the stomach for digestion and you have less going > >to the brain and extremities. At that age she also always sat on her > >haunches( feet under her butt, knees bent)so that when she stood up she > >would get a rush of blood to her lower extremities. It confounded us > >for years. > > > >At 17 she can precipitate a very quick low blood > >pressure(fainting)episode by rapid change in temperature, say going from > >cool air conditioning to the hot exterior temperature of a July day > >(very quick), and she can go down. Barbecuing can do it too. Just the > >blast of heat from opening a hot barbecue can very quickly precipitate > >it. She has had to put her hand out to steady herself and has even > >burned herself so it is very quick, no warning. > >Getting up from sitting and reaching to the top cupboard and she can go > >down. She describes it as her knees suddenly failing to support and she > >is down, but she does not pass out, just foggy. Perhaps, with your very > >loose joints, the dislocation happens as a result of quickly meeting the > >floor. > > > >With using crutches your arms and hands are hanging down and encouraging > >pooling in those extremities. Perhaps the crutches are contributing > >somehow. Meaghan gets amazing colour changes in extremeties if hands > >hang down at her sides for a time (get blue) and then she raises them > >above her head( go white), very noticeable, particularly in hot weather > >as heat causes blood vessels to dilate more with quicker and greater > >pooling of blood in vessels. It was much worse when she had a borderline > >low hemaglobin. Bringing up her hemaglobin even a bit helped and she > >dislikes meat. Perhaps using the crutches contributes in some way and a > >walker where your hands are at waist level would be just enough to help. > >Would it give support tho? > > > >Just my thoughts, as it is only this very day that I am realising it was > >sitting on her haunches that must have been the factor that tipped the > >balance. > > > >Roll it over in your mind and see what you think. There are a huge > >number of strategies to cope with the effects of this syndrome and we > >have had to use every one. Do you jiggle your legs LOTS before getting > >out of bed in the morning. Difficult to remember when sleepy! > >I do hope examining the events surrounding falls and looking for these > >triggers I mentioned might give you clues to possible prevention. > > > >Bernie > > > > Re: Mutant update! > > > >Thanks for your kind thoughts and support Bernie, my surgeon is very > >keen for me to get my cardiology assessment too and has actually > >written to my cardiologists expressing his concerns. I have injured > >myself in a few falls caused by my blacking out and altered BP/HR so > >it's definitely an issue that needs sorting out. I'm really hoping > >that getting to the bottom of that will help avoid some of my falls > >and injuries, but sadly most of my recent falls have been more joint > >failure induced than a case of blacking so we are fighting two > >causes of falling! My leg joints have a habit of just letting go and > >dislocating at the slightest things, leaving me in a heap and > >nursing more bruises, tears or breaks - that's why I'm splinted up > >to look like an Egyptian Mummy right now and having to use the > >walkers and wheelchair. Quote Link to comment Share on other sites More sharing options...
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