Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 , I'm only going to respond to the OH situation. My husband is also taking florinef for his OH. At one time he was taking 5 pills a day. Now he's down to 1/2 pill twice a day! Even at that dose his BP was 234/117 last night! 9 hours after taking 1/2 pill! His BP is all over the place, even when he's just sitting in his wheelchair or on the couch. He has been able to maintain a reasonable BP more effectively when he drinks around 80 ounces of water/gatorade per day. I'm just learning little tricks to raise or lower the BP as necessary. I push fluids and make him lie down with his feet elevated when it drops. When it's too high, I make him stand with his walker until it gets down to a more reasonable level. Right now I'm VERY worried that he could have (or has had) a stroke. I'm waiting to hear back from his doctor about refering us to a neurologist. The tests that were run on him over the weekend, showed no signs of him having a stroke, but I'm not convinced. Beth ---------- Maciejewski writes: To: " 'shydrager ' " <shydrager > Subject: Duragesic Patch-Retirement-OH! Date: Thu, 24 Oct 2002 09:46:27 -0400 ON OH: Jeff did not initially have symptoms of orthostatic hypotension (OH), but it has developed over time. RIght now we are struggling with the florinef raising his BP too high. He has BP spikes at least a few times a day now. Last night he had one that measured 175/122. Pretty scary. We were hoping the start of Sinemet would help, but it hasn't done anything. The Sinemet has helped the tremors, though they are not completely gone. So, there's my three cents..... M. If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 , I'm only going to respond to the OH situation. My husband is also taking florinef for his OH. At one time he was taking 5 pills a day. Now he's down to 1/2 pill twice a day! Even at that dose his BP was 234/117 last night! 9 hours after taking 1/2 pill! His BP is all over the place, even when he's just sitting in his wheelchair or on the couch. He has been able to maintain a reasonable BP more effectively when he drinks around 80 ounces of water/gatorade per day. I'm just learning little tricks to raise or lower the BP as necessary. I push fluids and make him lie down with his feet elevated when it drops. When it's too high, I make him stand with his walker until it gets down to a more reasonable level. Right now I'm VERY worried that he could have (or has had) a stroke. I'm waiting to hear back from his doctor about refering us to a neurologist. The tests that were run on him over the weekend, showed no signs of him having a stroke, but I'm not convinced. Beth ---------- Maciejewski writes: To: " 'shydrager ' " <shydrager > Subject: Duragesic Patch-Retirement-OH! Date: Thu, 24 Oct 2002 09:46:27 -0400 ON OH: Jeff did not initially have symptoms of orthostatic hypotension (OH), but it has developed over time. RIght now we are struggling with the florinef raising his BP too high. He has BP spikes at least a few times a day now. Last night he had one that measured 175/122. Pretty scary. We were hoping the start of Sinemet would help, but it hasn't done anything. The Sinemet has helped the tremors, though they are not completely gone. So, there's my three cents..... M. If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Beth, I was told by Dr. Freeman of Harvard that dysautonomia patients that have orthostatic hypotension, with varying blood pressure depending on whether they are lying down, sitting up or standing up rarely, if ever, get strokes. He explained that such a phenomenon is probably due to the fact that some of the day is spent with very low blood pressure and it the low blood pressure balances out the high blood pressure. The doctors seem to say that low blood pressure is more of a problem than high blood pressure because very low blood pressure causes patients to faint and fall, and they get hurt that way. So, all that to say, don't worry too much about strokes since it is altogether rare despite the scary high numbers. Still, it is good to check it out, but it is usually not a major cause of concern. I am not a doctor, but am just passing on information I learned at the NDRF seminar in August. Colette (from DC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Beth, I was told by Dr. Freeman of Harvard that dysautonomia patients that have orthostatic hypotension, with varying blood pressure depending on whether they are lying down, sitting up or standing up rarely, if ever, get strokes. He explained that such a phenomenon is probably due to the fact that some of the day is spent with very low blood pressure and it the low blood pressure balances out the high blood pressure. The doctors seem to say that low blood pressure is more of a problem than high blood pressure because very low blood pressure causes patients to faint and fall, and they get hurt that way. So, all that to say, don't worry too much about strokes since it is altogether rare despite the scary high numbers. Still, it is good to check it out, but it is usually not a major cause of concern. I am not a doctor, but am just passing on information I learned at the NDRF seminar in August. Colette (from DC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Well, where do I begin.? Speaking of high blood pressure. Ralph's was up and down and all around. Over 200 at times. One very high spike blinded him in his left eye. The specialist told us if it had gone to the brain it would have been much worse. There was never any pain as it occurred but the pain came later. He had a clot behind the eye in the central artery of the retina. There was no way to remove it via laser. They tried but the pain was too severe to go deep enough for a long enough session. So he was to have the eye removed but he became too ill to have it done and the pain became quite severe as the eye ball deteriorated. Please be careful about the high bp. The low causes falls but the high is very dangerous. Barb -- " Love may be priceless, but it demands a huge expenditure of time. " --Suzanne Fields Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Well, where do I begin.? Speaking of high blood pressure. Ralph's was up and down and all around. Over 200 at times. One very high spike blinded him in his left eye. The specialist told us if it had gone to the brain it would have been much worse. There was never any pain as it occurred but the pain came later. He had a clot behind the eye in the central artery of the retina. There was no way to remove it via laser. They tried but the pain was too severe to go deep enough for a long enough session. So he was to have the eye removed but he became too ill to have it done and the pain became quite severe as the eye ball deteriorated. Please be careful about the high bp. The low causes falls but the high is very dangerous. Barb -- " Love may be priceless, but it demands a huge expenditure of time. " --Suzanne Fields Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Yvonne, While it may be true that strokes are less common in people with autonomic failure, people on this list should still watch their BP carefully. High BP is common and can cause other problems such as Barb Selleck and others mentioned. A burst vein in the eye can be a terrible thing as can other high BP problems. Strokes are NOT the only worry of high BP. Let's focus on how to prevent high and low BP. Medicines and drinking liquids can help prevent low BP - but if the BP goes too high when reclining, raising the head of the bed can lower the BP to acceptable limits. Everyone on this list should have a machine to check BP and use it often. If the upper number goes above 160 - you should attempt to get it down somewhat (sit or even stand). If the lower number goes below about 50, you should sit or lay down to try to bring it up. The consequences of not being aware of the problems can be serious - either way. Several people have had eye problems over the years due to high BP. Low BP if ignored can cause falls and serious injury. Let's not get too caught up in strokes and ignore this. Common sense should tell us to be aware of all possible problems and treat them as well as possible. Almost everyone on the list had a couple of bricks under the feet at the head of the bed at one time, we were not trying to prevent strokes, just treating high BP. I think the doctors were just trying to downplay strokes and not telling you that uncontrolled high BP was okay. High BP up to about 160 (upper number) is probably liveable - but above that should still be treated with body position. Take care, Bill Werre ============================================== Yvonne Carpenter wrote: >Thank you so much > dancowins@... wrote:Beth, > >I was told by Dr. Freeman of Harvard that dysautonomia patients that have orthostatic hypotension, with varying blood pressure depending on whether they are lying down, sitting up or standing up rarely, if ever, get strokes. He explained that such a phenomenon is probably due to the fact that some of the day is spent with very low blood pressure and it the low blood pressure balances out the high blood pressure. > >The doctors seem to say that low blood pressure is more of a problem than high blood pressure because very low blood pressure causes patients to faint and fall, and they get hurt that way. > >So, all that to say, don't worry too much about strokes since it is altogether rare despite the scary high numbers. Still, it is good to check it out, but it is usually not a major cause of concern. I am not a doctor, but am just passing on information I learned at the NDRF seminar in August. > >Colette (from DC) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Yvonne, While it may be true that strokes are less common in people with autonomic failure, people on this list should still watch their BP carefully. High BP is common and can cause other problems such as Barb Selleck and others mentioned. A burst vein in the eye can be a terrible thing as can other high BP problems. Strokes are NOT the only worry of high BP. Let's focus on how to prevent high and low BP. Medicines and drinking liquids can help prevent low BP - but if the BP goes too high when reclining, raising the head of the bed can lower the BP to acceptable limits. Everyone on this list should have a machine to check BP and use it often. If the upper number goes above 160 - you should attempt to get it down somewhat (sit or even stand). If the lower number goes below about 50, you should sit or lay down to try to bring it up. The consequences of not being aware of the problems can be serious - either way. Several people have had eye problems over the years due to high BP. Low BP if ignored can cause falls and serious injury. Let's not get too caught up in strokes and ignore this. Common sense should tell us to be aware of all possible problems and treat them as well as possible. Almost everyone on the list had a couple of bricks under the feet at the head of the bed at one time, we were not trying to prevent strokes, just treating high BP. I think the doctors were just trying to downplay strokes and not telling you that uncontrolled high BP was okay. High BP up to about 160 (upper number) is probably liveable - but above that should still be treated with body position. Take care, Bill Werre ============================================== Yvonne Carpenter wrote: >Thank you so much > dancowins@... wrote:Beth, > >I was told by Dr. Freeman of Harvard that dysautonomia patients that have orthostatic hypotension, with varying blood pressure depending on whether they are lying down, sitting up or standing up rarely, if ever, get strokes. He explained that such a phenomenon is probably due to the fact that some of the day is spent with very low blood pressure and it the low blood pressure balances out the high blood pressure. > >The doctors seem to say that low blood pressure is more of a problem than high blood pressure because very low blood pressure causes patients to faint and fall, and they get hurt that way. > >So, all that to say, don't worry too much about strokes since it is altogether rare despite the scary high numbers. Still, it is good to check it out, but it is usually not a major cause of concern. I am not a doctor, but am just passing on information I learned at the NDRF seminar in August. > >Colette (from DC) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 , Many of us have learned through experience (the hard way) that certain things can and should be handled rather than ignored. In the few years that I have been on the list (almost four), I have seen problems that pop up often and know from listening to others the consequences of waiting to do something. We were lucky that we had good doctors who understood the problems and helped us. But several others on the list had similar experiences. We all learned from each other and " talked out " problems as a family in those days. We learned that exercise helped keep movement longer, we learned how to deal with " cannonballs " , we learned to raise the head of the bed to lower reclining BP, and we learned how to deal with medical people who were unfamiliar with MSA. Unfortunately MSA keeps changing it's attack, first it throws you a fast ball, then a curve, then something else. And as you say " you have to adapt again " . Hang in there, many of us have been where you are now. It IS a shame that more politicians have not walked a mile in our shoes before they cut off physical/speech therapy, cut medical research and deny us prescription coverage. I still feel we are fighting a war against MSA and need to use some of those 6000 pluripotent stem cells which will be flushed down the toilet today because a politician decided that they should not be used to try to save several million lives. I still do not see the logic of spending $37 billion for bombs and claiming that using live stem cells which will be destroyed (as soon as they are removed from liquid nitrogen) is " killing babies " . A single bomb can kill billions of human cells and a blood transfusion transfers many, many thousands of human cells from one person to another. I hope we have a brain cell transfusion which will cure MSA before I die. I have seen too many friends die. Take care, Bill Werre ===================================================================== Maciejewski wrote: >Wow, guys, thank you all for your input on the BP spikes and high/low blood >pressure problems. It's funny how certain topics can create a tirade of >responses, as in the one on Jeff's sudden blood pressure spikes. He had >another one today when he got home from work. It was 192/120. I was about >ready to take him to the hospital when he said he'd get up and walk around. > After 15 minutes or so he started to feel better. We took it again and it >was 140/90. But then after one of these episodes, he just crashes. He's >asleep on the couch now, and he'll probably stay there most of the night. > You know, I felt some alarm with the sleep apnea and the loud snoring, but >when Jeff got the CPAP that really helped. We've dealt with the other >symptoms as mostly painful and bothersome (like the " Cannonballs " , tremors, >double vision, etc). But in the past week or so since Jeff's BP has >started to go crazy, I've started to feel frightened again. I guess that's >the nature of the beast. You get used to it being a certain way, until >something new comes up and then you have to adapt again. I just feel very >blessed that I have found this group to be able to " talk " to. > > M. > > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 , Many of us have learned through experience (the hard way) that certain things can and should be handled rather than ignored. In the few years that I have been on the list (almost four), I have seen problems that pop up often and know from listening to others the consequences of waiting to do something. We were lucky that we had good doctors who understood the problems and helped us. But several others on the list had similar experiences. We all learned from each other and " talked out " problems as a family in those days. We learned that exercise helped keep movement longer, we learned how to deal with " cannonballs " , we learned to raise the head of the bed to lower reclining BP, and we learned how to deal with medical people who were unfamiliar with MSA. Unfortunately MSA keeps changing it's attack, first it throws you a fast ball, then a curve, then something else. And as you say " you have to adapt again " . Hang in there, many of us have been where you are now. It IS a shame that more politicians have not walked a mile in our shoes before they cut off physical/speech therapy, cut medical research and deny us prescription coverage. I still feel we are fighting a war against MSA and need to use some of those 6000 pluripotent stem cells which will be flushed down the toilet today because a politician decided that they should not be used to try to save several million lives. I still do not see the logic of spending $37 billion for bombs and claiming that using live stem cells which will be destroyed (as soon as they are removed from liquid nitrogen) is " killing babies " . A single bomb can kill billions of human cells and a blood transfusion transfers many, many thousands of human cells from one person to another. I hope we have a brain cell transfusion which will cure MSA before I die. I have seen too many friends die. Take care, Bill Werre ===================================================================== Maciejewski wrote: >Wow, guys, thank you all for your input on the BP spikes and high/low blood >pressure problems. It's funny how certain topics can create a tirade of >responses, as in the one on Jeff's sudden blood pressure spikes. He had >another one today when he got home from work. It was 192/120. I was about >ready to take him to the hospital when he said he'd get up and walk around. > After 15 minutes or so he started to feel better. We took it again and it >was 140/90. But then after one of these episodes, he just crashes. He's >asleep on the couch now, and he'll probably stay there most of the night. > You know, I felt some alarm with the sleep apnea and the loud snoring, but >when Jeff got the CPAP that really helped. We've dealt with the other >symptoms as mostly painful and bothersome (like the " Cannonballs " , tremors, >double vision, etc). But in the past week or so since Jeff's BP has >started to go crazy, I've started to feel frightened again. I guess that's >the nature of the beast. You get used to it being a certain way, until >something new comes up and then you have to adapt again. I just feel very >blessed that I have found this group to be able to " talk " to. > > M. > > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 , One more thing -- if Jeff's blood pressure becomes too high and can't be brought down by standing and walking, try having him eat something sweet or high in carbohydrates. That should work to bring it down. Yes, this list is a life saver for the caregiver. I certainly don't know how I'd manage without it. Carol & Rob Lexington, MA OH! > Wow, guys, thank you all for your input on the BP spikes and high/low blood > pressure problems. It's funny how certain topics can create a tirade of > responses, as in the one on Jeff's sudden blood pressure spikes. He had > another one today when he got home from work. It was 192/120. I was about > ready to take him to the hospital when he said he'd get up and walk around. > After 15 minutes or so he started to feel better. We took it again and it > was 140/90. But then after one of these episodes, he just crashes. He's > asleep on the couch now, and he'll probably stay there most of the night. > You know, I felt some alarm with the sleep apnea and the loud snoring, but > when Jeff got the CPAP that really helped. We've dealt with the other > symptoms as mostly painful and bothersome (like the " Cannonballs " , tremors, > double vision, etc). But in the past week or so since Jeff's BP has > started to go crazy, I've started to feel frightened again. I guess that's > the nature of the beast. You get used to it being a certain way, until > something new comes up and then you have to adapt again. I just feel very > blessed that I have found this group to be able to " talk " to. > > M. > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 , One more thing -- if Jeff's blood pressure becomes too high and can't be brought down by standing and walking, try having him eat something sweet or high in carbohydrates. That should work to bring it down. Yes, this list is a life saver for the caregiver. I certainly don't know how I'd manage without it. Carol & Rob Lexington, MA OH! > Wow, guys, thank you all for your input on the BP spikes and high/low blood > pressure problems. It's funny how certain topics can create a tirade of > responses, as in the one on Jeff's sudden blood pressure spikes. He had > another one today when he got home from work. It was 192/120. I was about > ready to take him to the hospital when he said he'd get up and walk around. > After 15 minutes or so he started to feel better. We took it again and it > was 140/90. But then after one of these episodes, he just crashes. He's > asleep on the couch now, and he'll probably stay there most of the night. > You know, I felt some alarm with the sleep apnea and the loud snoring, but > when Jeff got the CPAP that really helped. We've dealt with the other > symptoms as mostly painful and bothersome (like the " Cannonballs " , tremors, > double vision, etc). But in the past week or so since Jeff's BP has > started to go crazy, I've started to feel frightened again. I guess that's > the nature of the beast. You get used to it being a certain way, until > something new comes up and then you have to adapt again. I just feel very > blessed that I have found this group to be able to " talk " to. > > M. > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 , galactose is the other big sugar in milk; Lactaid does not address that one; the condition is called galactosemia and needs major medical attention. We found out the hard way that not all doctors doing the testing even know this--frustrating--I mean, if THEY do not know, what are We to do? Highest hopoes on this conuncdrum! Fortunately, galactosemia is rare! n Rojas Quote Link to comment Share on other sites More sharing options...
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