changes in heart rate

[friday]

I recently was here asking about some horrible symptoms I was having. I found out they were related to an overdose of Mestinon. One of the things that was weird is that my heart rate was so low, 57 when standing, and I didn't even need to take my Beta Blocker. Also instead of it rising when I stood , it would drop, and the blood pressure that would normally drop, went up. anyway, I stopped the Mestinon and the heart rate went back up.

Since then I have been monitoring my BP and heart rate. I have noticed that although the heart rate wasn't low anymore it was still doing the opposite of what it used to do. The heart rate would go down upon standing and the bp goes up. Also the BP has been low when lying down like 85/54 and like that. Sometimes even when standing. I dont really understand this and don't know if it means anyting. I haven't even needed the Beta Blocker.

However, today I woke and my heart rate was 87 lying down. I got up and took it and it went up to 137. The BP went down just a little.

Now it's gone back to about 75 the bP is normal and it really doesn't change much upon standing.I'm just confused by all of this changing. Does this make sence to anyone?I haven't really noticed a worsening or lessoning of symptoms, but I just wonder what's going on. I also don't know whether or not to take the BB. I hadn't been taking it for a few days and then like I said, the heart rate was high this morning. I'm not sure if you have to take it steady or if you can use it on a " as needed" basis. any help appreciated.

Also I'm taking 5 salt tablets a day + on my food. My sodium level has gone up within normal limits but the BP is still low. I'm wondering if there's anything else that will raise the BP?

Susan

[MomtoGiuliana]

Friday

That's great that you have resolved the most troubling symptoms with your doctor's help. As far as your current symptoms--do you think it could still be effect of the mestinon (don't know how long it takes to clear the system)? Unfortunately, too, this is all too common with POTS--wide fluctuations in hr and bp. There are days that I cut back on my beta blocker a bit b/c I notice my hr is not too high, or I can just tell my bp is low. Other days I use the full amount prescribed. I talked to my dr about this and he said that is fine to do. He also told me (which I think I mentioned before) that he has seen this phenomenon you are describing--hr actually going down when standing, in POTS patients, after having the condition for awhile. He didn't explain how it would be treated or if it would need to be, necessarily. Anyway, these are questions for your doctor.

As far as things besides salt to raise bp--there are medications available. Some people find that support hose helps. Some people use licorice root to raise bp. It would be a good idea to talk to your doctor before self-medicating, tho!

Take care,

Katherine

[justme]

Florinef can be very effective in raising your blood pressure. It helps your body retain salt and water. I have read out here where it can cause problems with some people, but my wife hasn't had side effects from this medication (or at least nothing beyond her normal problems). She had to "play" with the doseage quite a bit and she runs into problems because she can go into periods of severe pain, which will raise your blood pressure significantly and this coupled with meds that do the same thing can actually raise your pressure to dangerous levels. We have decided to try to maintain on the lower side as best as we can, so she doesn't run into the severe danger zones when she does run pain. Low blood pressure can cause all kinds of side effects, but high blood pressure can be deadly.

[Guest GayleP]

I'm not on any meds and sometimes my HR and BP are all over the place. My resting HR can be anywhere from 50 to 85 and my BP can be 80/50 or 140/90 within a small time frame. They keep telling me not to worry about it but on the days that my BP and HR fluctuate are the days when I feel the worst.

BTW, my BP is always much lower when I lie down.

[katsusu]

HI,

There are many times that my BP goes up and my HR numbers go down. If this happens at the doctors office, I always try to question it- asking why my bp is now in the 140 instead of the 100s- and that it is strange that my hr is in the 69s- they always answer me that 1)- that bp rate is not that bad (missing the point that this is not normal for me)and 20 (which is what i find interesting because my bottom no. is always the high one around 100 (if it happens)) -they sasy that they do not worry about that as much as long has it is not always there. Because that is thet body responding to something happening in the body like pain or stress . That they start being concern if both bp and hr go high at the same time, but it is how the body works -when one is up the other one should be lower.

My hr no matter how low it is standing always goes down 30 points when lying.

I am not sure if this is correct but this is what i was told several times.

Kathleen

[friday]

Friday

That's great that you have resolved the most troubling symptoms with your doctor's help.  As far as your current symptoms--do you think it could still be effect of the mestinon (don't know how long it takes to clear the system)?  Unfortunately, too, this is all too common with POTS--wide fluctuations in hr and bp.  There are days that I cut back on my beta blocker a bit b/c I notice my hr is not too high, or I can just tell my bp is low.  Other days I use the full amount prescribed.  I talked to my dr about this and he said that is fine to do.  He also told me (which I think I mentioned before) that he has seen this phenomenon you are describing--hr actually going down when standing, in POTS patients, after having the condition for awhile.  He didn't explain how it would be treated or if it would need to be, necessarily.  Anyway, these are questions for your doctor. 

As far as things besides salt to raise bp--there are medications available.  Some people find that support hose helps.  Some people use licorice root to raise bp.  It would be a good idea to talk to your doctor before self-medicating, tho!

Take care,

Katherine

<{POST_SNAPBACK}>

Thanks for the help. I think the Mestinon should be out of my system because my doctor told me it would take 12 hours. I felt better after that time, although it lingered into the next day a bit. I am still actually on the mestinon because when I was taking it at a lower dose it had helped me to feel better. It's just that my dose was raised a bit and I was getting too much, and an overdose can cause those symptoms. I will have to ask if that might be causing the fluctuations. Like I said the fluctuations don't seem to be making things better or worse, it's just that I'm not sure how to deal with them, as far as medication and just knowing what to expect.

Susan

[friday]

Florinef can be very effective in raising your blood pressure.  It helps your body retain salt and water.

<{POST_SNAPBACK}>

Yeah, I remember hearing about Florinef. i'll have to ask the doc about that.

Thanks

Susan

[friday]

I'm not on any meds and sometimes my HR and BP are all over the place. My resting HR can be anywhere from 50 to 85 and my BP can be 80/50 or 140/90 within a small time frame. They keep telling me not to worry about it but on the days that my BP and HR fluctuate are the days when I feel the worst.

BTW, my BP is always much lower when I lie down.

<{POST_SNAPBACK}>

That's the thing. They always think if it's in or around the normal level it's fine. Like our only concern is whether it's life threatening. Sometimes I think maybe the fluctuations themselves aren't normal and I would like to know if that's effecting the way I feel. Like maybe if they were more level I might not get those days when I suddenly get exhausted out of the blue or about a hundered other things like that. I think what they fail to understand is this effects the quality of life, and I feel the more I understand what's going on, the more I can help myself. Unfortunately most doctors don't seem to like the educated patient.

Susan

[friday]

They keep telling me not to worry about it but on the days that my BP and HR fluctuate are the days when I feel the worst.

<{POST_SNAPBACK}>

P.S. this is interesting. I will have to chart myself and see if that is true in my case.

Susan

[friday]

There are many times that my BP goes up and my HR numbers go down.  If this happens at the doctors office, I always try to question it- asking why my bp is now in the 140 instead of the 100s-  and that it is strange that my hr is in the 69s-  they always answer me that 1)- that bp rate is not that bad (missing the point that this is not normal for me)Kathleen

<{POST_SNAPBACK}>

This is what I was talking about in the last post. It's seems like us patients want a better understanding of why this is happening but docotrs are just concerned with normal limits. Although like I said. This doesn't seem normal at all. so why doesn't that matter to them? I could see if you're feeling perfectly fine, but if you're having symptoms that are affecting your life it should matter what's going on. That's how I found out I had POTS to begin with. I kept having low normal blood pressure readings. Then I looked up low blood pressure symptoms, and it was exactly what i felt. So I got a monitor and started recording what my readings were standing sitting and lying, and sure enough they were going below low at different times. I also found my heart rate was raising and that's how I found out about POTS. This just really pis*$#! me off because I have told them for months that I think my symptoms may have to do with the blood pressure and they ignored me.

Susan

[Merrill]

I don't know how big your blood pressure swings are, Susan, but EVERYONE'S blood pressure changes when posture changes. Have you had a TTT to diagnose POTS? (Sorry, I haven't the energy to go back in time to read your whole story...)

best,

m

[friday]

I don't know how big your blood pressure swings are, Susan, but EVERYONE'S blood pressure changes when posture changes. Have you had a TTT to diagnose POTS? (Sorry, I haven't the energy to go back in time to read your whole story...)

best,

m

<{POST_SNAPBACK}>

Well, what I mean by changes is my BP is under 90/60 at one point in the day and another time in the same day it'll be a little high. I know normal BP fluctuates a bit but it just seems to go to extremes. When I first noticed the symptoms of POTS it was always increase heart rate upon standing and lowered pressure. Then for some reason it got all turned around and it was the opposite. THink this was due in part to Mestinon overdose. Now it just varies wildly. Either way the BP goes too low at times and the heart rate goes high. I was diagnosed by a CFS specialist who also treats POTS. He didn't do a TTT but based it on my findings at home + my symptoms, and then he's been checking the BP, and heart rate stand/sitting/lying himself as well.

Sue

[yogini]

Susan,

I think it's pretty normal to have the kind of swings in BP you are talking about. Normal activities like eating, bathing and walking have a big effect on BP, and medicines too. When I have been hooked up to a constant BP monitor, I have noticed swings like you are describing even over a short period of time and the drs said it was fine.

-Rita