Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Hi, because my bp was going up a few days ago they stopped my florinef and gatorade - now it is down to 77/ 59 upon waking but my pulse is 135. I feel worse when feel the fluctuation. Like at midnight last night i got horrible chills and was nauseated and it shot up high for about half an hour - 134/ 97. Usually it is the diastolic that shoots up for me as was the case the other day - 110/105. My pulse is always sky high when standing but can go down to the 90's when lying down. I am afraid beta blockers will make this all worse - and that seems to be the only option. Then just take florinef as needed (midodrine makes me feel awful). just feel exhausted, out of breath, and weak all of the time. Waverley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Waverly, Have you tried raising the head of your bed to lower your reclining BP? Position is usually the culprit in regulating BP with MSA. Se my note a few minutes ago to Shirley. You need to see a doctor about the pulse of 135 preferably a MSA or OH specialist. Beta blockers are NOT for BP, they are for coronary artery disease. Take care, Bill Werre ------------------------------------------------------------------- katihaiku wrote: > Hi, because my bp was going up a few days ago they stopped > my florinef and gatorade - now it is down to 77/ 59 upon waking > but my pulse is 135. I feel worse when feel the fluctuation. Like > at midnight last night i got horrible chills and was nauseated > and it shot up high for about half an hour - 134/ 97. Usually it is > the diastolic that shoots up for me as was the case the other > day - 110/105. My pulse is always sky high when standing but > can go down to the 90's when lying down. > > I am afraid beta blockers will make this all worse - and that > seems to be the only option. Then just take florinef as needed > (midodrine makes me feel awful). > > just feel exhausted, out of breath, and weak all of the time. > > Waverley > > 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 June 14, 2002 Report Share Posted June 14, 2002 My doctor told me my BP was too volatile for beta blockers, sound like you are similar. I do drink coffee when my BP is low and green tea when it shoots up (also help to take your mind of high BP by doing something as lovely as having tea). Caffeinated drinks do have a diuretic effect, but if you have problems with retention and edema, that would certainly not be a problem. Pop has a lot of caffeine (almost all flavours) and huge amounts of sodium and sugar, I'd think that unsweetened coffee or tea is a far better idea. My heart rate is much higher than it ever was before (and I am fit), but it is a healthy heart, for me the anxiety it makes me feel is hard to deal with (HR does not differentiate between being active and resting, steadily between 80 and 110) and is entirely independent of what my BP is (that is something I cannot understand - anyone?). It works much like being in the gym all the time, I need more caloric intake than ever before to break even - I lost a lot of weight when it first started, now I am eating more to compensate. At Friday 6/14/02 04:43 AM, you wrote: Hi, because my bp was going up a few days ago they stopped my florinef and gatorade - now it is down to 77/ 59 upon waking but my pulse is 135. I feel worse when feel the fluctuation. Like at midnight last night i got horrible chills and was nauseated and it shot up high for about half an hour - 134/ 97. Usually it is the diastolic that shoots up for me as was the case the other day - 110/105. My pulse is always sky high when standing but can go down to the 90's when lying down. I am afraid beta blockers will make this all worse - and that seems to be the only option. Then just take florinef as needed (midodrine makes me feel awful). just feel exhausted, out of breath, and weak all of the time. Waverley 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 June 14, 2002 Report Share Posted June 14, 2002 Waverly, Orthostatic tachycardia (high heart rate upon standing)can be caused from at least two things from the autonomic side of things: 1)over responding to normal amounts of adrenaline (hyperadrenergic response) and/or 2) the heart beating faster in order to keep blood from pooling in your legs when your bloodpressure falls. Having said that, Midodrine is much better at keeping blood from pooling and tends to slow one's heartrate as an added benefit for some. (I am sorry it makes you feel so bad. What side-effects do you feel?) Florinef, though, helpful with orthostatic hypotension is not usually as reliable at keeping bp up. (Of course, each patient has to be treated individually, and some patients cannot take one of these medications and sometimes neither.) Many patients, though, do benefit from both. As far as beta-blockers, Bill Werre has missed the mark here slightly. Besides the usual uses for Beta-blockers, they also do a good job with slowing a fast heartrate in patients with autonomic dysfunction. Beta-blockers are very commonly prescribed to lower bp (as you know). So, I understand any hesitancy in taking them in relation to MSA. However, beta-blockers are used for the autonomic side of things if a fast heartrate is a problem. Because, the responses are so different with autonomic dysfunction vs. normal high blood pressure, beta-blockers do not usually have as much of a bp lowering response in cases such as ours. The object is to get your heartrate down and your system as balanced as possible, and beta- blockers ARE prescribed in conjunction with florinef and midodrine to do just that. Of course, you may have to up the florinef a bit (or the midodrine), but that is all part of the balancing act. As for myself, I benefit greatly from this balancing act. I imagine that others on the board do as well. The autonomic side of things though somewhat the most treatable part of MSA is quite tricky. Many doctors, at first blush, will think that a patient should not take both a beta-blocker and florinef. However, that combination has been around for quite some years now. The trick for me came when I combined the beta-blocker with midodrine and then added back in the florinef. (For a beta-blocker, I use Atenolol. Inderal made me feel like a zombie, but I know it is used as well. Of course, the doctor can discuss possibilities with you.) I hope all of this helps. Many of the top autonomic specialists are familiar with this regime. Also, bear in mind, that your bp reading is of your arm, and it may not adequately predict what the blood pressure in your brain is. So, midodrine patients feeling symptomatic may have to keep their bp up a bit more than usual. To continue that idea, if they do not feel as if they are having high blood pressure, it is not always an issue to be overly concerned about. With Florinef, the balance is not as easy though. Try to figure out though if the feelings you are having could be due to the tachycardia side of things (does your face get flushed when standing and at other times?) or if in fact you are experiencing symptoms of high blood pressure. I know all of it is hard to balance, but it gets somewhat easier as you keep learning your body. Although, there will always be times when everything is messed up regardless. Midodrine patients know that it does not always help. These are all things you can discuss with your doctor. I am sorry you are having such difficulties. And I am, also, sorry that midodrine is not working for you. Perhaps, you could share the side-effects you were having with that medication. I wish you the best. Zachery > > > Hi, because my bp was going up a few days ago they stopped > > my florinef and gatorade - now it is down to 77/ 59 upon waking > > but my pulse is 135. I feel worse when feel the fluctuation. Like > > at midnight last night i got horrible chills and was nauseated > > and it shot up high for about half an hour - 134/ 97. Usually it is > > the diastolic that shoots up for me as was the case the other > > day - 110/105. My pulse is always sky high when standing but > > can go down to the 90's when lying down. > > > > I am afraid beta blockers will make this all worse - and that > > seems to be the only option. Then just take florinef as needed > > (midodrine makes me feel awful). > > > > just feel exhausted, out of breath, and weak all of the time. > > > > Waverley > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Glad to see you back, Zak! At Friday 6/14/02 05:16 PM, you wrote: Waverly, Orthostatic tachycardia (high heart rate upon standing)can be caused from at least two things from the autonomic side of things: 1)over responding to normal amounts of adrenaline (hyperadrenergic response) and/or 2) the heart beating faster in order to keep blood from pooling in your legs when your bloodpressure falls. Having said that, Midodrine is much better at keeping blood from pooling and tends to slow one's heartrate as an added benefit for some. (I am sorry it makes you feel so bad. What side-effects do you feel?) Florinef, though, helpful with orthostatic hypotension is not usually as reliable at keeping bp up. (Of course, each patient has to be treated individually, and some patients cannot take one of these medications and sometimes neither.) Many patients, though, do benefit from both. As far as beta-blockers, Bill Werre has missed the mark here slightly. Besides the usual uses for Beta-blockers, they also do a good job with slowing a fast heartrate in patients with autonomic dysfunction. Beta-blockers are very commonly prescribed to lower bp (as you know). So, I understand any hesitancy in taking them in relation to MSA. However, beta-blockers are used for the autonomic side of things if a fast heartrate is a problem. Because, the responses are so different with autonomic dysfunction vs. normal high blood pressure, beta-blockers do not usually have as much of a bp lowering response in cases such as ours. The object is to get your heartrate down and your system as balanced as possible, and beta- blockers ARE prescribed in conjunction with florinef and midodrine to do just that. Of course, you may have to up the florinef a bit (or the midodrine), but that is all part of the balancing act. As for myself, I benefit greatly from this balancing act. I imagine that others on the board do as well. The autonomic side of things though somewhat the most treatable part of MSA is quite tricky. Many doctors, at first blush, will think that a patient should not take both a beta-blocker and florinef. However, that combination has been around for quite some years now. The trick for me came when I combined the beta-blocker with midodrine and then added back in the florinef. (For a beta-blocker, I use Atenolol. Inderal made me feel like a zombie, but I know it is used as well. Of course, the doctor can discuss possibilities with you.) I hope all of this helps. Many of the top autonomic specialists are familiar with this regime. Also, bear in mind, that your bp reading is of your arm, and it may not adequately predict what the blood pressure in your brain is. So, midodrine patients feeling symptomatic may have to keep their bp up a bit more than usual. To continue that idea, if they do not feel as if they are having high blood pressure, it is not always an issue to be overly concerned about. With Florinef, the balance is not as easy though. Try to figure out though if the feelings you are having could be due to the tachycardia side of things (does your face get flushed when standing and at other times?) or if in fact you are experiencing symptoms of high blood pressure. I know all of it is hard to balance, but it gets somewhat easier as you keep learning your body. Although, there will always be times when everything is messed up regardless. Midodrine patients know that it does not always help. These are all things you can discuss with your doctor. I am sorry you are having such difficulties. And I am, also, sorry that midodrine is not working for you. Perhaps, you could share the side-effects you were having with that medication. I wish you the best. Zachery > > > Hi, because my bp was going up a few days ago they stopped > > my florinef and gatorade - now it is down to 77/ 59 upon waking > > but my pulse is 135. I feel worse when feel the fluctuation. Like > > at midnight last night i got horrible chills and was nauseated > > and it shot up high for about half an hour - 134/ 97. Usually it is > > the diastolic that shoots up for me as was the case the other > > day - 110/105. My pulse is always sky high when standing but > > can go down to the 90's when lying down. > > > > I am afraid beta blockers will make this all worse - and that > > seems to be the only option. Then just take florinef as needed > > (midodrine makes me feel awful). > > > > just feel exhausted, out of breath, and weak all of the time. > > > > Waverley > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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