RecipeForDisaster

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.

I'm written for 1500mL 3 times per week or as needed. Sometimes we try to leave the access in and do two days in a row. No one minds if I do it daily or every two weeks, so I decide based on how bad I'm feeling and if I can actually be hooked up for a few hours. If I know I will be having a rough patch, need to be at my best, or have been unstable, I'll do fluids anyway... and I did them on a schedule at first, for a few months. I definitely did better, but between logistics and wanting or save my veins (plus $30 a pop copay) I decided to save it for when I really need it. Just knowing it's there is very nice.

Will you have someone come to access the port, say, weekly? I'm happy for you, having this option at home!

I couldn't try propranolol due to my lungs, but I haven't had any of the side effects you mention with metoprolol succinate other than a little sleepiness-I take my routine dose at night so it's welcome. I'm only on 25mg which does take the edge off the tachycardia without lowering my BP any further. If I take another half tablet at another time of day (I'm prescribed to take up to 50mg daily as it does not last 24 hours for me, and if I'm not doing well my heart rate can still run high), I have more PVCs which is bothersome. Otherwise, I'd take another half tablet more often. Just my two cents-it has been very helpful to me. It has lessened the booming palpitations which lets me sleep a lot better (not well but better!). Hope this helps.

I hate to tell you I had a horrendous experience with Walgreens. I use a local provider of BioScrip which might be available to you in your area. They have their own nursing but I don't use them.

Usually, if you call a local infusion company, and they can't take your insurance, they'll find you someone who can. Or, you can ask your insurance company for help. I actually work in this industry but not for the company I use for my own infusions  I think you're better off with a nearby branch of a national company, or a totally local one.  Good luck! It wasn't fun setting mine up, but we are good now,

I trust you guys and my primary isn't actually arranging the urine collection test as the neurologist asked him to anyway, so I won't go through the bother of the test! My renin is high, and I've been on licorice and then florinef for a while as well as salt and fluids. I sure don't want an artificial normal result! I guess I won't get my blood volume measured. I'd be willing to go to Yale for Daxor, but most of my doctors say it isn't worth doing. I think they are pretty sure I have it and there's not much specific treatment anyway.... especially treatment that I'm not doing.

Interesting... it was a well known autonomic neurologist who ordered the 24 hour urine electrolyte measurement to estimate blood volume. I would think that would be extremely variable considering your electrolyte levels fluctuate!

I'm supposed to have testing done using 24 hours worth of urine electrolytes to estimate blood volume... my PCP is supposed to get it done so I don't have to actually do the test in Boston, but I haven't heard anything about getting it done-and in the meantime they started me on licorice and then florinef, so I don't want to bother if the test will be skewed.

i am nearly positive my blood volume is low and most of my doctors don't think it's worth testing for, partly because there's not a specific treatment for it. I kind of AM being treated for it, florinef, IV saline.... 

My doctors are often skeptical that even 20+ tubes of blood can cause a problem.... once one said that isn't even half a blood donation. I asked if I should be donating even half a donation of blood with my BP in the 70s.... duh! 

I was just thinking physiology and how often the body loses and replenishes small amounts of blood without us even realizing it sometimes....

Personally, I wouldn't think that amount would really affect you, but I have had significant issues with having more than 20 vials drawn at a time (yes it IS a lot of blood). I have collapsed trying to get back to the car and also fainted in the lab right after the band aid went on, which has never had anything to do with the needle. I'm not needle phobic and IVs or injections don't do this. Lately when I get a lot of blood drawn I get IV fluids right after and I'm good. I don't think doctors realize how many different tubes are required for all those tests... it can add up.