Bp Getting Lower And Lower At Night?

[NMPotsie]

I have hyper pots with surges of very high bp. Am on propranolol 10 mg 3xday, which controls them pretty well. My last surge was in August and my bp was 150/110, which is high but better than 180/160. Anyway, since then, it has progressively gotten lower and lower after dinner. It was in the 80/50 range for a couple of weeks, and tonight 67/41. I feel worse when it's high but when it was super low tonight I started feeling pretty shaky.

Anyway, does anyone else get this yo-yo bp? If so, what were you advised to do? So far, I've only been advised to up my salt to 15g (3 weeks ago, and it's just getting lower). I'm afraid to stop/reduce the beta because I feel so bad with the surges, so I wondered if anyone else had this experience. Also, when should I worry about the bp? My doctor just told me not to drive.

Thanks!

[issie]

I'm hyperPOTS and had this same reaction with propranalol - had to stop it because of the low's at night and then got rebound hypertension with it when it wears off. It was pretty scary and hard to come off of. It did help with the surges - but, I couldn't deal with the very bad lows at night. It wasn't enough to take it just once a day.

Issie

[Batik]

67/41? Have you told your doctor about that reading?

[NMPotsie]

Batik I called my GP this morning and told him. He asked how I felt and then said "well, tell Dr. Goodman when you go to Mayo and see what he says." I don't see him until the 25th, and at this rate I'm getting a little nervous to wait that long. My doctor admittedly doesn't know much about POTS so he just sort of waits to see what they say at Mayo.

Issie I had the same reaction to clonidine, but haven't noticed rebound hyper yet. I'm nervous I'm going to, though. How long before you got the rebound hyper? I'm terrified of a surge, so I'd like to avoid this.

[issie]

It's been awhile since I tried the propranalol - it was one of the first ones that I tried and it did help with the surges. I don't remember how long it was when I went on one in the am and not one at night - before the rebound hypertension started. I don't think it was long. Then when I got off of it totally - my high bp was higher than ever. It's so frustrating - we find something that helps and then the other side effects aren't tolerable.

I'm finding motherwort to be helping with the tachy/surge issues - for me. I'm using it in the am and pm. I also think that black molasses - unsulfured - helps with the tachy, surges too. It is really high in potassium. I'm not using it at the moment. But, trialing the motherwort. So far, it's a good one. But, it might be like everything else - a miracle for awhile and then stop working. I've about decided that I have to rotate and cycle most everything I do. It seems to work better for me that way.

Issie

[Batik]

It might sound like a daft question, but when the GP asked how you felt, did you give him an accurate answer or a relative answer? For example, I collapsed a month ago and was taken to A&E. When they asked how I felt a few hours later, I said, "Much better, thank you." I really shouldn't have said that, because what I meant was, "Well, I still can't turn over without getting incredibly breathless, and if I tried to stand up I'd black out, but I've stopped feeling cold from the fever and am not jerking convulsively just now, so I think I'm doing great." I believe that their interpretation of what I said may have been a little different! They figured it out when I blacked out after standing up to use the commode, and then jerked convulsively for the next twenty minutes or so, but otherwise they were all ready to send me home on the spot. You get so used to being in a bad state that it's very easy to think it's not worth remarking upon to a doctor.

[NMPotsie]

Batik sorry I didn't see this and respond earlier; I missed it somehow. I think you're right about reporting how you feel to the doctor. I often say I feel okay but mean "in comparison to the feeling like I'm about to drop dead like a few hours ago." I never feel okay, but I have a tendency to tell the doctor that I do when it's not horrible. Just fyi, my recent visit led to the conclusion that I have a mast cell issue and the theory is that by controlling that we can control the surges and then I can be put on midodrine in addition to propranolol to deal with the low bp.

Interestingly, I brought up my brady (severe at times) and Dr. Goodman said it's just a normal part of the condition and I needn't worry. He also put me on xanax at bedtime to deal with restless legs (all over restlessness, really) and said it won't lower my heart any more so not to worry. That made me feel better.

[issie]

NMPotsie,

Only one problem ----if you really have mast cell issues ---beta blockers make it worse. It will degranulate the mast cells. Really, the only thing most of us tolerate is clonidine. If you find that things are not improving - maybe a change away from the beta will make a BIG difference. But, of the betas - my reaction was less severe with propranalol - just couldn't take the night dose because of extremely low bp's at night with it. Then horrible re-bound hypertension. \

Some have found that treatment for MCAS has really improved their responses. Hope it works for you. The fun begins. It's a lot of trial and error on dosages, correct meds - etc. Hopefully, the combo is the right one for you and it will work wonderfully. Hoping that for you!

Issie

[NMPotsie]

I asked about that, Issie, because bbs work for me. The doctors said everyone is different and react differently to meds and that I can have mast cell issues and still tolerate bbs. It may be that my symptoms are exacerbated by the bb (for example, I seem to now have mild asthma with the addition of the bb) but I tolerate it much better than I did anything else, including clonidine. I get low bp at night so he cut the dosage to 5 mg at night and we're going to try that for awhile. Also, I'm still waiting for results (this was in another post) so I'm not saying I have mast cell issues for sure, just that the doctors agree that it looks like I do.

Trial and error, they both said, is the way to go. I'm not going to give up the propranolol unless I have to because it has worked really well for me.

[Relax86]

I have/had low BP's while I sleep. No one has figured out why. I'm 85/45 and it feels crappy. It got better with a late night dose of hydrocortisone. Some of the forum people may know that I have responded fair to HC. I don't necessarily think this is the best drug for me but in my worst flare it seemed to pull me out. I've been off of it for almost a week - tapered slowly and BP is hangin in there around 106/58 in the am. If I wake up in the middle of the night I pump my ankles for a little until I fall back to sleep. I also eat some salt before bed. I'm being assessed by an Endo at this point, heading to autoimmune after that. If I get an answer to low nighttime BP's I'll pass it along.

As far as how we present to DR's I make the mistake of sometimes downplaying how I feel. For one: the list is a mile long and makes me look crazy and two: we are all so used to living with such a struggle that we actually put up with way more than we give ourselves credit for. The reality is that what I call a good day would have the average person either calling off sick, or at the ER.

We are unfortunately adaptable to the struggle and unpredictability of this syndrome. Good luck with your BP