RecipeForDisaster

My beta blocker hasn't lowered my BP. Some don't as much as others do. I've never had a remotely high BP no matter what I've done, since the 90s. I wish I could tolerate 10mg- that's what my cardiologist recommended and I bet it'd be more helpful. I never want those feelings again, though! Glad we could help-this forum has been a big help so I am sure we are all happy to pass that along. Let us know how you do- I'm going to be surprised/impressed if it helps you a ton because your BP is so low like mine (I can get into the low 70s systolic) . I needed more than just midodrine and I'm still low.

I was afraid to try this for a long time until my cardiologist assured me that I could take a dose once in a while when I needed it, and it'd be fine. He was right. I take it when I'm doing worse or know I'll need to have an uneventful day, or will be exercising. If I am managing and won't be doing a whole lot, I skip it. So, you can take it once and never again, or take it regularly and stop. That made me comfortable enough to try it, and it does help me somewhat. It's out of your system within a few hours, so IMO definitely worth a try. I am complicated and persistently hypotensive, but midodrine does tend to help me function and exercise a little more than I could without it. You aren't supposed to lay down within 3 hours of the dose because of the risk of supine hypertension-that is not a risk for me, after thoroughly testing (my lying BPs are still low, even on midodrine). I certainly have fatigue, but little hope of alleviating that-it's presyncope and collapse that I need help with most. I have 10mg tablets which is far too much for me. I do best on 2.5mg every couple of hours. On 5mg I get chills and tingly/cold scalp. The chills keep me from taking that much unless I truly need it all at once. At 10mg I get really intense, cold chest pressure that is unpleasant enough that I don't go that high for any reason. It's nice that you can break the tablets. Good luck.

Colomom, I'm on those forums too! Great advice. I have a CPAP and have had great difficulty dialing everything in-mostly mask fit but other issues too. I did like the airway splinting from the first night, and could see that this would help me. My sleep is still bad but I don't have the horrible events waking me often like I did before CPAP. For me, it was well worth persisting for years and trying more tweaks to get it right. The forums helped with this. With these modern machines, you basically have a sleep study every night you use them, which is pretty awesome. My sleep apnea is gone with this therapy-I average less than 1 event per hour while on the machine, and my pressure is only at 6. It's silent and the exhalation relief makes it pretty comfortable. My asthma has improved a ton since I started using this-side benefit! I hoped this would be a magic bullet that'd fix all of my problems, but it still definitely benefits my life.

I hope you find answers, and share them here... I don't really fit any diagnosis (about 10 doctors into this and have done every test imaginable, sometimes more than once) and just have chronically low BP after being HYPERtensive for many years. My BP doesn't change too much with position either. My heart rate also doesn't change very much, it's just fast 24/7 other than shooting up with activity(not standing) but now controlled by metoprolol. I do not function well at all and am basically in some degree of shock all the time, collapsing or passing out too often. Without meds I'd guess my BP would be about 70/30 now. I'm on midodrine, mestinon, florinef, 15gm salt per day, 4L water (usually consumed as a homemade oral rehydration drink) and IV fluids and generally run near 84/60 on all of that. In my teens I was 150/90 and really nothing in my life has changed. My diet, weight, environment are the same. I was very active in many athletic activities but still keep trying to do so. Good luck!

I have the rate-flow tubing, too. With a pump I wouldn't need an IV pole and could more easily go places in the car, etc. It's hard enough going up and down stairs, and I sure don't do errands or anything! I could also run it overnight if I had a pump-I could make sure it didn't run quickly enough to run dry before I got up. Rate-flow is good but it's not extremely accurate.

Sometimes I really need the fluids but I don't have 6 hours to run it.... it's not worth it to run it quicker, for my body. It's hard with no pump and just an IV pole.... you're fairly limited.

That's great! I wouldn't start with more than a liter-not everyone can handle it, plus it'll take you a long time to infuse if you go nice and slow, which so,e of us have fund beneficial. I had the same experience where the doctors who were knowledgeable in this area didn't want to order the fluids, but my hematologist was brave enough. Now that's it's obviously a huge help, one of the cardiologists said he'd take over prescribing. My original order was for a liter 3 times a week, but with my clotting, that's brutal on the veins. I do 1.5 liters when I need it-it could be every other week or every day. I charted hourly BPs.

I don't understand it, but even tiny infections like a little cellulitis push me right over the edge. Yep, I need IV fluids too... at least it's an explanation for worsening symptoms sometimes, I guess! Better than the mystery kind.

I have bad asthma so there are only a few BBs I could try-and I was afraid of even the specific ones. I have had good results with long acting metoprolol. It helps me to sleep because it reduces the intense pounding palpitations and fast HR. I do take it at night... it makes me more comfortable but I can't think of other benefits.

I haven't tried LR but I suspect it would be helpful compared to NSS. I am grateful to have any IV orders at all, so I don't want to rock the boat. I don't get edema from NSS, though. I definitely find that slower infusions are more helpful. When I've had a time crunch or been very hypotensive, we've run the first liter in wide open, and I never seem to get as much benefit. I usually run 1500mL over 5-6 hours - I bet slower than that would be even better, but I don't have a pump so can't run it while sleeping, or in the car. If it were safe and doable for me, I sometimes fantasize about a slow, continuous drip on a pump-I just know I could do everything I used to do without much trouble, and I'd feel so much better.

I do better with 2.5mg midodrine taken more often , versus 5mg taken 3 times daily. I get chills as well as the tingly scalp, and if I take 10mg at a time as was first prescribed to me, I get this weird cold chest pressure that is very unpleasant. So if the side effects bother you, with your doctor's approval, you can try taking less.... I get a little boost in BP fairly soon, maybe in an hour? But, it's not dramatic.

We are all different, but I'm already on midodrine, mestinon, and florinef (small dose because of major edema if I take more-salt or IV fluids don't cause edema ever for me). I'm prescribed 15gm salt with my tons of water daily! Plus, compression. Just to show you there is at least one other person in this boat. Maybe we have the same issue. I can't get my BP out of the low 70s some days. I feel better with all this, but obviously not good enough. I feel bad enough laying down but it's better than standing. I try to do the fluids as infrequently as possible for a lot of reasons... a liter and a half only gets me 36-48 hours of doing better, so if I wanted to be at my best all the time, I'd have to have many IV sticks which is not so good for the veins, $30 per day of fluids, and be connected to a pole for 5 or more hours every other day... some people do keep a peripheral IV in for the whole week, but I have clotting issues and can't keep it good overnight. I don't know what can cause problems like this, but I'm seeing an endocrinologist next week. I have 2 cardiologists, a neurologist, a hematologist.... No one really knows what else to do with me. Other than my leg temperature and color, paleness, and wobbliness, I look surprisingly good for my BP and still try exercising and working. I feel rotten but still do just about everything. Sometimes I pass out, but my life is still good overall. Hang in there, hope this helps, and know that it's possible to manage even despite all this!

Also like me... my interventions boost my BP 5-10 points, usually. I was previously hypertensive so I don't feel okay until my BP is 115 or higher , usually.

You are so much like me! I don't seem to fit in any mold except plain old hypotension. I do have cold hands and feet, heat/cold intolerance, and lack of sweating... but most of my symptoms can be attributed to shock itself. I have no idea why my BP is low-I seem to be hypovolemic, but why? I've had a lot of testing. My TTTs were inconclusive. Hang in there, this is a great group! I hope you can get some answers. Salt, water, and meds help but not enough. I will eat plain salt-I crave it so much. IV fluids are the most helpful but also least convenient and I am trying to save my veins, since I can't have a PICC or port.

I've found the same exact thing-I can drink perfectly isotonic solution and pee just about all of it out quickly. When I get it IV, I hardly urinate at all. It's so weird. The kidney should see "extra" fluid the same way whether oral or IV... but it doesn't seem to with us!

Yep, in my case I seem to be low blood volume and I only have very low BP, never high. My orders are for 1000mL up to 3 times weekly. I have it done at home and do try to do it as infrequently as possible to save my veins. I don't have any permanent access.

I had a very hard time getting to try this and to keep getting it prescribed. Doctors often say "if you can drink, you don't need IV fluids". By hearing from all of us who have gotten good results from IVs, it's not true in every case. I think it's the fact that you are forcing all of the fluid right into your vessels, because if you aren't dehydrated, why would your GI tract hold onto much more water that you drink? Plus, yes, the pressure being forced up. I don't think i have EDS so I can't speak to that. Good luck, I know exacly how you feel wanting to try this and having so much trouble getting it arranged.

I have these and bigeminy and neither of my cardiologists is concerned. They do bother me, and are worse if I take extra metoprolol. I think that's because of the rate going too low for me, like low 60s, but I'm not sure. I don't take in more than a half cup of caffeinated coffee to avoid them getting worse, and IV saline seems to help.

Hope I can help here-I have had similar symptoms and inability to sleep due to pounding/tachycardia is on of my worst symptoms. I have bad asthma AND pretty bad hypotension, never hypertension anymore although I had it 20 years ago. When I go to bed, my BP is usually in the high 70s or low 80s. I was very afraid of metoprolol but it has made a big difference in my ability to sleep. It takes the edge off the pounding and lowers the rate somewhat. My cardiologists say it's unlikely to lower BP at all at low doses (I can take up to 50mg per day but usually 25mg). You could take a non long acting version to try it out, because it would leave your system quickly. I take the 24 hour extended release which doesn't even last half as long for me, but it's usually enough. I can deal with the pounding and tachycardia much better when I'm not also trying to sleep. When I have to be off this drug for a test or something, I really don't sleep that night. I did hourly BP checks with and without each drug I've been prescribed. I found absolutely no difference with or without metoprolol, thankfully. It made no sense to take a "BP lowering" drug when I am hypotensive, but apparently it is not a good antihypertensive, I'm told. At least not at these doses. It also never affected my breathing. We picked this one for the selectivity-there are only a few that are this selective and less likely to affect breathing. Good luck!

Ugh, thanks, he wasn't too helpful! I wonder if that's true, I sort of doubt it. I know I don't have pheo, I was tested for it years ago when I had unexplained hyPERtension and now I can't keep my BP up at all.

That's wonderful, I'm so happy for you. I know just having bags available is a major confidence booster. I know I will be able to get better at home!

Same with me, i had to work to get my primary to order these tests. Good luck, I'm eager to hear what the nephrologist tells you... for me I really doubt my kidneys are the problem (compared to some chemical telling them to misbehave) , but who knows! My cortisol was okay but my ACTH stim was done at 4pm and required multiple IV sticks. I guess that time of day is not right for a true test, and I hope that if I have to do it again, they'll put an IV in this time.

I'll be interested to how you do because I'm seeing an endocrinologist for help figuring out a diagnosis on 10/30 and I also have high renin. Some have told me it's nothing, some say it's an indicator of chronic hypotension.

I use an APAP for sleep apnea myself and it took years to optimize my therapy. I'd say I've tried 15 masks and different liners and stuff too. I wouldn't be without it now. I didn't see any mention of automatic titration, where your machine stays within a range and doesn't hit that 24 unless it's needed that night? It could help... I'm on another forum, CPAPtalk, that has been really helpful. There are lots of tricks shared there. Good luck-I hope you can make the machine work for you since it clearly seems to be needed! IMO, if you need that high a pressure, it's very important that you consistently use the machine.

I can't have a port or a PICC but for most people, those are the best answers. If things got really bad, maybe a port someday, but the risk outweighs the benefit right now. The port can stay accessed for days if that's better, just so you know. Literally knowing I can get almost instant BP elevation that always works and gets me out of trouble is major peace of mind. I fought hard for it! I used to resign myself to 5 day stretches of not eating, barely being able to get off the floor, crumpling, passing out... thank goodness I never have it let it get that bad now. I do have to wait for my husband (RN) to get home from work sometimes but I find I can usually make it. If I'm getting bad I usually do fluids early.