RecipeForDisaster

We can't give medical advice, but I can tell you that's 4x what I started on  I then went down to half of that due to swelling... and have tapered down to half of THAT. I had trouble with impressive edema, headaches, and not a lot of positive benefit. Many swear by it, so I hope that you have great results! You do have to push fluids and salt to make the drug effective. For me, it seemed that all of the fluid retention it gave me was outside my vasculature.

For me, I have had good results with long acting metoprolol in low doses , and I'm allowed to take twice as much if I need it. I find that if I take double, I end up with bradycardia with bigeminy too. I have to keep my rate above 50 to avoid bigeminy. I think it's the heart really trying to get that rate higher!

I hope that you can find comfort soon. I think normal people have no idea how uncomfortable it is when your rate is, say, higher than 90 when doing nothing, or under 50. Laying in bed, I am bothered by a rate above 80 or so. It used to be in the 60s... and now it is if I am taking metoprolol.

This is very interesting-a place recently opened near me and I was just reading reviews last night! I think I do enjoy it if nothing else. It's expensive. You have to shower twice, so that might be a bit challenging. I adore soaking in a warm tub with lots of Epsom salts, and floating is especially nice, but my BP can't handle very warm water anymore. I think our place has 10" deep water with 800 lbs of salt in it, if I remember right?

Metoprolol succinate but I have low BP and not high. I'm using it for tachycardia and pounding heart. It helps, but not for the whole 24 hours-barely 12?

My arms are quite thin... luckily we can both do a manual reading. I usually don't do my own because I don't believe the reading, but when I do and have my husband (a nurse) check it, it's very accurate. It's not easy to do it correctly because of propping the arm up correctly.

My legs get insanely itchy, and mottled gray, when I walk sometimes. It must be a blood flow issue but no one has seemed interested.

Ditto here-no BP machine even in clinical settings has been accurate for me for a while. I'd love to have the auto recording of a machine but all of my measurements have to be manual if I want a true result.

I was extremely hesitant to start any meds at all, particularly any I had to take daily. I'd be sunk without them so little by little I accepted them. It goes against my grain but is clearly needed. 

I take a bunch of my meds daily including the beta blocker, florinef, etc. I take a starting dose of midodrine and mestinon each morning and add more doses if I need them. I can take several more doses of each if it's not a great day. I also add doses if I need to be doing particularly well to get through an activity or just make sure I don't collapse.

I don't do well any day, but some days are worse than others so I need the extra meds available on top of the baseline ones. We are all so different and many can just take meds as they need them. 

Repeat explanation of why this would help and a request just to let me see if it helped. All of my doctors were unwilling to prescribe it until my kind hematologist said "okay". That was after I suffered through a week of mostly being on the floor, blacking out and not being able to eat or walk. He knew there was nothing else that could be done for me and he has a heart.

One cardiologist said the same, "if you can drink you don't need IV fluids". Now that he has heard of how helpful the fluids were, he's willing to take over prescribing. Aggravating!! It took me months of hard work to be able to try it.

My tablets are 60mg and scored both ways, so I started with 15mg. I'm glad you didn't have issues starting with 90mg! I have better exercise tolerance and temperature regulation on it, but it's not dramatic.

definitely ask your pharmacist about the interaction. I tried a supplement that had rhodiola and didn't have much effect, but maybe you will.

I find that this is a good benchmark for how bad I feel, even if my BP isn't incredibly low. The smaller the pulse pressure, usually, the worse I'm doing. I haven't found doctors to be that interested in this either.

For me, I have no port so I get a peripheral IV started each time. My husband is a nurse so he takes care of that. Once it's running, I am independent (only cause I can't start an IV on myself, although I am qualified and trained to... I'd need another hand) and run fluids as slowly as I can, making sure I'm done before I go to bed or have to go somewhere. I normally do 1500mL over about 7 hours. The slower I go, the more benefit I get. I could remove my own IV and can control the rate with dial a flow while it's running... getting around with a pole is a pain but it's doable. 

A visiting nurse would usually just get you started and you'd either disconnect and flush your IV after, or remove it. It'd be unusual for them to stay the whole time, but then again the "normal" rate for this is 250-333mL per hour so it wouldn't take that long.

I tried to get help from an endocrinologist recently and she said there was nothing she could do for me. She repeated the ACTH stim that we knew would be normal... that is all. Every doctor is different, but mine wasted my time and money. I bet this drug would be helpful for me.

This is wonderful. My experience has been very similar except for the port, hypertension, and seizures. I have my own version of this story-but I don't get fluids as often as I would need to to really feel better. I'm grateful for having them on hand and knowing I can get somewhat better anytime I get them. It was very surprising to me when I noticed my mood improving from the fluids-I was doing okay before, but was clearly happier after fluids.

What a shame it is that people are denied this very effective, simple solution. Of course it won't work this well for everyone, but why not try if you're doing that poorly? The amount of work we have to do to convince doctors to give us access to fluids is not fair.

Oh yes, I can take anywhere from 0 to 50mg of metoprolol if I need to.... I always take 25mg at night but sometimes add in another 12.5mg.

Midodrine is one drug you can take as needed, intermittently. Compression is something else you can add in when you need it. My cardiologist assured  me that metoprolol really doesn't affect BP at these low doses. I have confirmed that is true with hourly logging, comparing days with and days without metoprolol. My BP is very low anyway so I wouldn't be able to afford it going lower.

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.