Blood Pressure Issues Persist....

[comfortzone]

Hi ~

I was told that my blood pressure and medication to treat it would be very tricky to treat - and indeed it is. And has been. And I hope won't be forever. So while I don't have POTS - I have symptoms and issues that are requiring some of the same treatments you would use for POTS. The compression hose, staying hydrated with electrolyte drinks.... My blood pressure is labile on it's own ~ and I guess I have some measure of orthostatic intolerance in that it tanks when I stand too long. Is too high most of the time - and I have three meds to work with thus far.

I will get flushed, tachy and sweaty with upright standing and posture at times too. I have Diovan - Dyazide - and Bystolic. The first is an angiotensin receptor blocker, the next a diuretic, and the third is a beta blocker. While I know you are not physicians - I am still looking for anecdotal evidence from your experience about how you have titrated meds for 'too low' (when it fluctuates with a too high baseline) & what was the most successful for you...

For example - I am exhibiting a rather hyperadrenergic pattern in my vitals as a rule....the adrenalin surge with standing upon testing was evident...

So with the venous pooling - and all - and the need to stay hydrated --- it seems perhaps the diuretic should be the first to go if I have a low couple of days.....

Yet -- it is only when I am on the Bystolic that my lows get super low and that's on only 2.5mg.

And then there's the Diovan - that is not enough on its own.

I am only on the end of day number four of restarting the Bystolic after 3 weeks off of it. And my b/p is heading low tonight. I did work on my feet today for four hours and went for a 40 minute walk. I guess I am a bit symptomatic with 96/61 and HR of 60. It's bed time and it will just get lower yet.

So tomorrow I wonder (since I was told I would need to tinker with my meds).... maybe I should try life without the Diovan -- It doesn't work all that well and since the beta blocker works too well - maybe the combination is too much. I'm thinking I might do just that (after I make sure that it's safe to just stop it suddenly) Or if not stopping it altogether maybe I'll half it tomorrow.

Then the beta blocker and the dyazide can work together as long as I stay hydrated. I will get a phone call into the doctor tomorrow and likely see my local primary care doc as well - so don't think I'm doing this alone & worry.

But still I wonder - does anyone here do the titrating to blood pressure needs? Do hyperadrenergic people seem to respond more readily to beta blockers than other people? Does anyone else have this issue aside from me that does this necessary daily tinkering?

Thanks in advance everyone...

[nmorgen]

Hi nowwhat!

I have the hyper POTs. I can't take beta blockers because I have asthma, so I cant give any advice on that. I do tinker with my meds, not everyday, but when I need to I do. Im only using clonidine right now for my POTs. I have to use more in the winter to control my hr and less in the summer. I also take a little more when Im in a very hyper state. I've started exercising more and it has dropped my hr and so I am taking less clonidine now. My cardiologist told me that it was fine to adjust the dose based on what my symptoms were doing. I dont really feel well when my hr drops too low. I guess Ive gotten so used to it being high that what would be considered normal is just too low for me. I also think that just dropping my hr really isnt solving the underlying problem with what is going on, and that is why I feel so bad if my hr drops too low. Good luck on adjusting your meds. I hope you find something that works for you.

[Sarah4444]

Under the Research link in the POTS section of the dinet homepage there is an abstract of an article by Dr. Raj et al., that "less is more" when it comes to using beta-blockers for POTS. Apparently low dose beta-blockers can be helpful while a higher dose of the same med can make POTS symptoms worse.

[comfortzone]

Under the Research link in the POTS section of the dinet homepage there is an abstract of an article by Dr. Raj et al., that "less is more" when it comes to using beta-blockers for POTS. Apparently low dose beta-blockers can be helpful while a higher dose of the same med can make POTS symptoms worse.

Thank you Sarah4 - and that's what I suggested to the nephrology dept - who canned the diuretic and the diovan in favor of only a small amount of the beta blocker..... Then in about 3 days I'll had just half a diuretic if needed.......... So it seems that you get to know your body and what will work - as this is what I was requesting to do - but it's always prudent to get the doc's blessing. I'm starting to feel a bit better - good thing as I try to tackle a busy Friday night on my feet at work.....which makes my bp low anyway - so by only taking the small dose beta blocker - hopefully I don't crash again tonight!

[comfortzone]

Hi nowwhat!

I have the hyper POTs. I can't take beta blockers because I have asthma, so I cant give any advice on that. I do tinker with my meds, not everyday, but when I need to I do. Im only using clonidine right now for my POTs. I have to use more in the winter to control my hr and less in the summer. I also take a little more when Im in a very hyper state. I've started exercising more and it has dropped my hr and so I am taking less clonidine now. My cardiologist told me that it was fine to adjust the dose based on what my symptoms were doing. I dont really feel well when my hr drops too low. I guess Ive gotten so used to it being high that what would be considered normal is just too low for me. I also think that just dropping my hr really isnt solving the underlying problem with what is going on, and that is why I feel so bad if my hr drops too low. Good luck on adjusting your meds. I hope you find something that works for you.

Aha! Thanks for sharing so much nmorgen! If I require a bunch of tinkering i guess it will be clonidine for me as well - so for today I learned the doctor wants only the beta blocker at a low dose to see how I do..... About to head into work -- hope I don't get too low while at work - that's always embarrassing as the 'old lady' gets woozy around all the young kids working at the restaurant! I'll bring my zero calorie electrolyte drink with me and hope for the best - and where my tightes knee highs as I didn't get to the store for the compression stockings yet --- thank you !

[tinkerbella]

Hi, I get low very easily and take many meds... I have to watch and take my meds on a sliding scale.. But if I start to drop below 110 top number I pop two thermotabs and start tanking up with fluids. The newest fluid to stay hydrated is coconut water. I feel it coming on I get very warm all over when everyone else is fine, at night time I was dropping to the floor like crazy and hurting myself. I found that I'm no longer wanting to eat and it's making my BP stay low also. I would rather drink instant breakfast, vitamin water, Kiefer, than have a heavy meal. Meals tend to upset my tummy and I then load them with salt. Bullion is a good way to push up the pressure and also with a Gatorade but drink it slowly if you have tummy troubles.

The nights I take a thermotab or two at bedtime I'm less likely to start fainting when I wake in the night. It's strange that although my BP will be below 90/75 even at hydration I will have to add the tabs. Hope this helps...I don't know your meds, so if one is for BP I would talk to your doc about what number your BP should be before you take it. MY # IS 130 TOP.

GOOD LUCK~ Bellamia

[tinkerbella]

Hi, I get low very easily and take many meds... I have to watch and take my meds on a sliding scale.. But if I start to drop below 110 top number I pop two thermotabs and start tanking up with fluids. The newest fluid to stay hydrated is coconut water. I feel it coming on I get very warm all over when everyone else is fine, at night time I was dropping to the floor like crazy and hurting myself. I found that I'm no longer wanting to eat and it's making my BP stay low also. I would rather drink instant breakfast, vitamin water, Kiefer, than have a heavy meal. Meals tend to upset my tummy and I then load them with salt. Bullion is a good way to push up the pressure and also with a Gatorade but drink it slowly if you have tummy troubles.

The nights I take a thermotab or two at bedtime I'm less likely to start fainting when I wake in the night. It's strange that although my BP will be below 90/75 even at hydration I will have to add the tabs. Hope this helps...I don't know your meds, so if one is for BP I would talk to your doc about what number your BP should be before you take it. MY # IS 130 TOP.

GOOD LUCK~ Bellamia

[comfortzone]

Thank you very much!

I was on three b/p meds for being too high - but when I got super low - I called and they now have me only on the Beta Blocker Bystolic at just 2.5mg. So no more Diovan and no more Dyazide. If though after three days of only the Bystolic and I start to go up again too much I'm to add half a dyazide, and maybe 80mg of Diovan. But so far the Bystolic alone is handling things pretty good. My morning high is now120/80..... much better -- it's just that I have to stay really hydrated with G2 and water or I do get too low. I exercise by walking & suddenly I'm new to sweating - which makes hydration even more an issue. I am supposed to stop salt I guess except in an electrolyte sports drink - no seasoning food with salt. In the end I was told I'd probably have to tinker a lot with my meds as I work at this weight loss and orthostatic intolernace issue. Thank you for sharing your story - I really appreciate it! I saw coconut water at Trader Joe's last week and thought that was an interesting idea for sure. I wouldn't mind the fluctuations in b/p if they weren't loaded with so many symptoms....I feel horrid with the highs (150's over 110) and I feel horrid with the lows (80's over 40's) - and they can all happen in a day -- day after day -- sigh. Hopefully as I lose more weight I'll take readings that are more normal and less problematic!