14 replies to this topic

[nowwhat!]

Hi Just Me Again....

My internist agreed with me stopping my metoprolol because it did nothing for my tachycardia and nothing for my blood pressure in the couple of months on it. She said yes to seeing Dr. Goodman as, "no one around here knows how to take care of what you got".... Then she said how about we try Bystolic to slow your heart rate and get your high blood pressure under control -- we'll leave you to sit down and rest or lie down if you begin to dip low....but hopefully this will agree with you. (I'm also on Diovan 320mg and weekly Dyazide). I mentioned catapres and she said it didn't make sense for a fast heart rate with high b/p...I told her but dysautomia patients sometimes are treated with it with success....that's when she was glad for me to go to Mayo...But she thought this should slow me down enough and decrease that high b/p hopefully not crashing me down low when I get bouts of the low b/p. I'm to start with 5mg and then go to 10mg if I feel okay

So just curious if anyone here has experience with this drug....

Thank you!

nowwhat! (<= see I say it first so the doctors don't have to!)

[issie]

Took it for awhile, but eventually had to stop. It made the low's too low. It did help with the high's though. I felt better on nothing vs. being on it. But, everyone is different. Of all the things I tried, it was the best of the beta blockers. Less problems.

[firewatcher]

I was on it briefly. It did more for the tachycardia, but less for the BP, but I did not sleep! I would wake up several times a night with severe headaches. My sleep doc said I was the second patient he's had to have this symptom with bystolic. It lasts longer than my dose of propranolol, so I probably went too bradycardic at night. It also did nothing for the "secondary" symptoms of POTS: tremor, etc. It can work wonders for the right patient though.

[It'sMyLife]

I'm taking it right now and like it better than the rest of the beta-blockers I've been on. It controls my bp and pulse pretty well and doesn't seem to give me as much fatigue as the others. Good luck!

[It'sMyLife]

I'm taking it right now and like it better than the rest of the beta-blockers I've been on. It controls my bp and pulse pretty well and doesn't seem to give me as much fatigue as the others. Good luck!

[nowwhat!]

Thank you! I ended up taking one pill and I went for four days with low blood pressure and felt really quite symptomatic -- so I didn't take it again - that was only 5mg too - she said you can go up to 40! Well not me evidently lol -- I feel kinda cruddy with a b/p about 90's over 60's. Anyway first tab was Tuesday -- It's saturday night and finally my blood pressure went to normal today. Then an hour ago it was high again :-( 152/104 Crud. So I guess I'll go back to the Diovan and start up the dyazide diuretic daily until I can call the office on Monday. Not that she'll know what to say! She's as stumped as I am and is glad I'm going to Mayo in August...

[It'sMyLife]

I'm sorry you had such a bad experience with it. Just goes to show that POTS presents itself so uniquely with each individual's body chemistry.

I should have added that I have a type of POTS that causes a dysregulation of bp where I get high spikes. The last day it was taken before I started the Bystolic (in-office poor-man's TTT) it spiked to 180/106. So, I wasn't leaving the office without a med to get that down.

[nowwhat!]

Wow I don't blame you !! It seems that if you go to a cardiologist and look healthy - suddenly a blood pressure with the diastolic above 105 isn't an issue..... Yet I'm a nurse for 25 years and in the hospital it was always a big deal -- it was thought of as rather dangerous even. So I will again try to get my pressure under control somehow - maybe she'll let me take a 1/2 of a tablet and titrate to my need somehow. Even if it's every third day or so -- I'll find out soon enough I guess. What type of doctor diagnosed your POTS? My geneticist for EDS-HM just didn't get it when I sent my cardiology work-ups - he was ignorant of the dysautomia facet of EDS and tried to tell me tha my cardiologist was looking for just orthostatic hypotension........that's not the case at all. Yes I do think I have some venous pooling and my pressure dips when standing for hours -- but I have orthostatic hypertension ~ Anyway I'm really glad that medication is helpful to you -- it's such a neat thing to get a good fit!

[mountain girl]

I take Bystolic, and it does come in 2.5 mg tabs, but when my dr increased me to 5 mg and I found that was too much, I break the 5 mg in half and take half of 5 mg tab a day. It keeps my hr down with out lowering my bp too much, but on the 5 mg my bp went too low. I also take Florinef which is supposed to keep my bp from going too low. The first beta blocker I was tried on was metoprolol and my bp went so low I could hardly get out of bed. I was hesitant to try bystolic, and did not feel good on first pill, but when florinef was added I could tolerate it. Now when I have tried going off Bystolic, not sure if it was really helping me feel better I felt worse off of it and hr went up much too easily. Consider trying 2.5 mg or 2.5 mg every other day. I did the every other day thing with the 5 mg before I knew it was ok to cut the pill in half.

[nowwhat!]

thank you mountaingirl! my doc called yesterday and told me to do just as you said and try cutting the samples in half and take only 2.5 mg. my pressures yesterday were okay - but I had the diuretic on board. i didn't take the bystolic today because I hated how it made me feel -- for 4 days from just one pill. I think tomorrow I'll start fresh and give it a go....only hesitant cuz my mayo clinic appt. is coming up in a few weeks and I came to think that maybe I don't want to confound the diagnostics by being on it -- Guess i'll run that by the doctor too...Thank you for sharing your experience - it's helpful!

[HopefulLady]

I just got back from the Mitral Valve prolapse center of Alabama and was diagnosed with Pots and the doctor there prescribed me Bystolic 2.5 mg, and Kolonipin 0.5 mg and am currently taking Effexor Xr 37.5 mg. I haven't taken the Bystolic yet but plan to within a few days so I will let you know how I do with it. I know it's one of the newer beta blockers at least here in the US.

[HopefulLady]

Well after 3 days of being on bystolic .5 mg I am quite shocked it's actually working!!! My heart rates are well within normal ranges both supine and standing ... I am in total disbelief but do hope it continues to work. I haven't checked my BP but I have had virtually no side effects no dizziness ect which is so amazing because normally I get them all and then some. The only thing I notice is when I take it in the morning about 30 minutes later I feel a little sleepy. But it wears off as the day goes on. I have been running around all day doing laundry and cleaning and my Hr stays in the mid 90's to low 100's vs 140 + sitting it's been in the 60s-70s .. I really hope this Bystolic continues to work because I feel a sense of relief for the first time my heart does not feel like it's overworking. When I tried the 2.5 it wasn't really doing anything so I took the other half that's when I noticed a huge difference at least for me. I also have been sleeping through the night on it. Only marked side effect for me is slightly fatigued about 30 minutes after I have taken it but does wear off in a few hours. I was scared to death to take a beta blocker but this may just be what I needed. I can't take the other beta blockers because I have exercise induced asthma. It's amazing how differently we can react to medications.

[Reen]

Well after 3 days of being on bystolic .5 mg I am quite shocked it's actually working!!!

How wonderful that you found a med that works for you - I'd love a day of energy


hope it continues to help
noreen

[carinara]

Hi everybody, just thought to chip in because of the high blood pressure subject. My BP is almost allways on the higher side. My daily average is around 150/100. My BP comes down in during the night though. I do sometimes have spikes to 190\130. I have been trying all sorts of medication over the past 7 years. Diuretics left me bedridden, they are a big NO GO for me. In fact all medication that dilate blood vessels are a big NO GO for me. I currently just take a Beta Blocker. I have been to many doctors including POTS specialists and over the past 7 years i was in different hospitals 4 times. My higher BP was allways one of my concerns and i talked to many many different doctors and specialists about it. And they all reasured me, that my BP numbers are not dangerous because symphatetic overactivitiy is the cause of it. Its important that the numbers come down in during the night because thats a sign that the reason for high BP is not severe. For the BP to be dangerous, the numbers must stay high all the time including during the night. I also went to 2 rehabs were they told me the same thing, the nurses and doctors even meassured their own BP in during activity and stress and showed me (because i was so scared about my numbers) and they had similar numbers. Then they also told me that i should never ever meassure my BP in during stress because Stress can cause an enourmos increase in BP. People with panic attacks for example can reach also numbers like 200/120. Weightlifters can get even numbers from 320/200 or higher. I just wanted to post this because i know how scared one can get if the numbers are high. But as long as the numbers dont stay up there ALL THE TIME and you got checked through without finding an "organic" reason. You are ok.

[issie]

Hi everybody, just thought to chip in because of the high blood pressure subject. My BP is almost allways on the higher side. My daily average is around 150/100. My BP comes down in during the night though. I do sometimes have spikes to 190\130. I have been trying all sorts of medication over the past 7 years. Diuretics left me bedridden, they are a big NO GO for me. In fact all medication that dilate blood vessels are a big NO GO for me. I currently just take a Beta Blocker. I have been to many doctors including POTS specialists and over the past 7 years i was in different hospitals 4 times. My higher BP was allways one of my concerns and i talked to many many different doctors and specialists about it. And they all reasured me, that my BP numbers are not dangerous because symphatetic overactivitiy is the cause of it. Its important that the numbers come down in during the night because thats a sign that the reason for high BP is not severe. For the BP to be dangerous, the numbers must stay high all the time including during the night. I also went to 2 rehabs were they told me the same thing, the nurses and doctors even meassured their own BP in during activity and stress and showed me (because i was so scared about my numbers) and they had similar numbers. Then they also told me that i should never ever meassure my BP in during stress because Stress can cause an enourmos increase in BP. People with panic attacks for example can reach also numbers like 200/120. Weightlifters can get even numbers from 320/200 or higher. I just wanted to post this because i know how scared one can get if the numbers are high. But as long as the numbers dont stay up there ALL THE TIME and you got checked through without finding an "organic" reason. You are ok.

Thank you for posting this. I too, have high BP in the day and it drops out from under me at night. I wasn't able to take the BB because of this. It goes so low with sleeping. It's good to know that they don't worry so much about the high BP when there are the really lows at night.