gertie Posted November 4, 2009 Report Share Posted November 4, 2009 My PCP says I need to get my BP under control. When sitting my BP is 156/76, when standing 143/86. I feel better when it is higher because if I have less syncope.I don't understand why when I stand the top top number comes down 10 pts & the bottom goes up 10 pts. Is this normal to do this. thanks. Quote Link to comment Share on other sites More sharing options...
erik Posted November 4, 2009 Report Share Posted November 4, 2009 I feel way better when my BP is high. Was even 190 today which is getting a bit too high. I may be responding to fludrocortisone stronger than I did last time on it... normally my BP is normal and falls badly upon standing. I had high BP with a cold a week ago, then it dropped out normal/low again, now it's high again. Either I'm going volatile, as some with dysautonomia do, my fludro/salt management isn't consistent enough, or who knows what (lingering cold effects without symptoms)??? Anyway, I am unusually energetic but sadly continuing this would apparently put me at risk longer term so perhaps we're in a similar boat.I was hoping there is some way to get the benefit of high BP without the risk!?!? I guess ensuring good blood flow (perfusion) somehow without overdoing the pressure would do it... not sure how to accomplish that!I don't remember for sure, but I think a modest drop in systolic and perhaps a slight rise in diastolic is normal... but don't quote me on that! Quote Link to comment Share on other sites More sharing options...
gertie Posted November 5, 2009 Author Report Share Posted November 5, 2009 Thanks for your reply. I'm beginning to wonder if anything is ever going to be normal again. Quote Link to comment Share on other sites More sharing options...
lmt033167 Posted November 5, 2009 Report Share Posted November 5, 2009 I feel better too when mine is higher, but I can't get mine above 125/80 even with salt loading & midodrine. The only way mine goes up is if I lay down while taking Midodrine.I have NCS & OI so maybe this is the difference, but my cardiologist wanted mine to stay about 150/90.I would love to find a happy medium for me - good higher lvl bp/hr and just the right amount of salt intake not to mess too much with my heart conditions Quote Link to comment Share on other sites More sharing options...
potsgirl Posted November 5, 2009 Report Share Posted November 5, 2009 I have some of the same symptoms/concerns that Lisa has. I have OI, so I'm supposed to ingest about 10 grams of salt a day and water load, but I also have heart problems and the salt is not good for that. Even with salt, water, and Midodrine, I can't get my BP above 85/70 when standing. Grrrr!Hope you feel better soon, Alicia and all!Cheers,Jana Quote Link to comment Share on other sites More sharing options...
StacyRN Posted November 5, 2009 Report Share Posted November 5, 2009 Alicia, this is the norm for me too! My diastolic BP goes up by 10, and my systolic goes down by at least 10. Just the body's way of trying to adjust to standing I guess... Quote Link to comment Share on other sites More sharing options...
godslyric Posted November 27, 2009 Report Share Posted November 27, 2009 My BP usually stays between 160/90 to 90/55 but symptoms get bad when I get around 95/55, (vertigo, dizziness, numbness and so on) when I go above 140/85 my ears ring real bad. I seem to wake up to a bp on the high side in the winter and the low side in summer. Sunlight seems to be a huge part of my symptoms kicking up. I have tried vitamin D3 but get tacky from it. Its a constant fight with this thing no matter what I do... Quote Link to comment Share on other sites More sharing options...
godslyric Posted November 27, 2009 Report Share Posted November 27, 2009 Also dose anyone know of a site that gives a guideline for BP readings in different circumstances. Like standing as apposed to sitting as apposed to walking and so on. Quote Link to comment Share on other sites More sharing options...
skyblu Posted November 27, 2009 Report Share Posted November 27, 2009 I've noticed I feel better when my BP is stable when sitting. Doesn't matter if it's high normal or low...as long as it doesn't bounce around up and down. The days I feel the worst is when my BP is erratic. Quote Link to comment Share on other sites More sharing options...
flop Posted November 28, 2009 Report Share Posted November 28, 2009 I don't understand why when I stand the top top number comes down 10 pts & the bottom goes up 10 pts. Is this normal to do this?Alicia, the numbers in a BP reading show the systolic (first number) and diastolic (second number) pressure readings. The systolic pressure is the reading of how much pressure in in the artery when the heart is contracting. The diastolic reading is the pressure in the artery when the heart is relaxing between beats. The heart contracts and relaxes over and over which sends blood along the arteries in waves. It is these waves of pressure that you can feel when you take your pulse.The drop in the systolic pressure shows that your body can't keep your BP up as much when you are upright.The rise in the diastolic pressure shows that the blood vessels have tightened up (constricted) when you stood up to try to help keep your BP up. If the vessels didn't constrict then your over all BP would be much lower when you stand.For a healthy person it is normal for the HR to speed up a few beats (maybe 10/min) and for the systolic BP to drop a couple of points and the diastolic BP to rise a couple of points. Usually these physiological changes are small and aren't noticed by the healthy person - it is a normal body adapting to change in posture and the effect of gravity.In people with dysautonomia our bodies can't adjust correctly and often our numbers change much more than the average healthy person. The numbers you quoted are on the high side, but the change is probably typical for one of us.Getting the balance between BP high enough for us to feel well but not so high that it becomes a risk for heart disease and stroke is a constant juggling game. I can understand why your PCP wants your BP a little lower. You need to find a happy medium where you feel good - monitoring your BP regularly whilst adjusting your salt and water intake should help you learn just how much your body needs (we are all different in our requirements for salt and water).Flop Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 28, 2009 Report Share Posted November 28, 2009 My PCP says I need to get my BP under controlHyperadrenergic presentations are characterised by increased peripheral resistance (and thus blood pressure) but perhaps increased vasodilation in the splanchnic and thoratic circulation from possible beta 2 stimulation or other mechanisms. the increased sympathetic activity could be reducing blood flow to the brain by overconstricting cerebral arteries, but the hyperadrenergic response and the increased blood pressure could be a legitimate response to impaired cerebral perfusion, increased thoratic venous permiability (leaking volume during orthostatic stress), hypovolumia or impaired cerebral vascular control. In other words, its not clear whether the increases in blood pressure seen in some POTS patients are part of the abnormality or a coping mechanism. I wouldnt rush out to reduce mine - I feel better in the higher areas usually. You PCP is playing safe, but hypertension causes nearly all its problems from arterial blockages rather than bursting them so short term increases and fluctuations arent regarded by the POTS researchers as a great concern, particularly given that our brains have paradoxical reductions in blood flow at the time rather than similar blood pressure increases. the only organ Id be concerned about would be the kidneys although again there is ubpublished data that suggests that even they suffer from malperfusion in POTS.Getting the balance between BP high enough for us to feel well but not so high that it becomes a risk for heart disease and stroke is a constant juggling game. I can understand why your PCP wants your BP a little lower. You need to find a happy medium where you feel good - monitoring your BP regularly whilst adjusting your salt and water intake should help you learn just how much your body needs (we are all different in our requirements for salt and waterIts unclear how cerebral reductions in blood flow would effect our stroke risk but because of these reductions it is unlikely that we would experience the same risks of strokes as pure hypertension. POTS patients dont have overall hypertension in the same way, we have paradoxical reductions in blood flow to the brain and heart even with this blood pressure increases. As for heart disease, the mechanisms behind POTS may predispose this in other ways (reduced nitric oxide, sympathetic potentiation through reduced norepinephrine reuptake, reduced stroke volumes due to relative standing hypovolumia) but again the normal rules of hypertension do not apply to POTS. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 28, 2009 Report Share Posted November 28, 2009 Although your response to reduced blood pressure might be very telling in terms of what your primary problem may be Quote Link to comment Share on other sites More sharing options...
potsgirl Posted November 28, 2009 Report Share Posted November 28, 2009 Alicia,If you go to the home page of this site, you can read about BP numbers when you go from lying/sitting to standing. Usually when you stand, your systolic number will increase about 10 points or so, while your diastolic pressure will lower slightly. So, your reading was normal. What did your heart rate do?Cheers,Jana Quote Link to comment Share on other sites More sharing options...
StacyRN Posted November 28, 2009 Report Share Posted November 28, 2009 Jana, correct me if I'm wrong, but I think Alicia's systolic bp went DOWN by ten, and her diastolic went UP about ten. This is what happens to me, too. Like from 105/70 to 95/80... this isn't normal, is it? Quote Link to comment Share on other sites More sharing options...
potsgirl Posted November 29, 2009 Report Share Posted November 29, 2009 Yes, it is. Go to the home page, then click the link under 'POTS overview'. It's in the first or second opening paragraph. Systolic will stay about the same or DROP 10 pts, and diastolic may go up slightly. Unless I'm totally brain-fogged!J Quote Link to comment Share on other sites More sharing options...
StacyRN Posted November 29, 2009 Report Share Posted November 29, 2009 "Normal" normal? Or POTS normal? Quote Link to comment Share on other sites More sharing options...
StacyRN Posted November 29, 2009 Report Share Posted November 29, 2009 Oh,sorry, found it! Normal normal! Thanks, I'm foggy lately... Quote Link to comment Share on other sites More sharing options...
erik Posted November 29, 2009 Report Share Posted November 29, 2009 (edited) Also dose anyone know of a site that gives a guideline for BP readings in different circumstances. Like standing as apposed to sitting as apposed to walking and so on.Response expanded & moved here. Edited December 5, 2009 by Erik Quote Link to comment Share on other sites More sharing options...
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