Terrified Of B/p Fluctuations

[Rene S.]

Hi. Maybe someone can shed some light on my problem. Today I've felt awful. As if a mack truck ran me over. I've probably been overzealous about taking my b/p but I truly can feel it elevating. As soon as I get up bam! heart races and head pulses. If I sit quietly, it's normal. This has been on going and I can't deal with the chest pressure, the flip flops and heartburn (dr says all tests are fine! grrr). Anyway, here is just a sample reading for just today:

136/80 hr 81 (walking into my room) and sitting down

123/76 hr 81 (sitting on my bed)

153/85 hr 92 (walking from one room to another)

138/90 hr 98 (putting laundry away)

108/70 hr 78 (sitting on bed)

115/71 hr 71 (sitting down)

163/76 hr 83 (sitting down)

138/84 hr 105 (standing)

And so on. And they change from minute to minute.

This can't be good for the heart going up down, up down. The lowest is always the morning but my hr tends to be higher.

Trying to get ahold of the cardio is like pulling teeth, but my gastro dr thinks this is also metabolically related. Just since yesterday, I lost 3 lbs and I ate a bunch of fattening things. I'm at my witts end. He's trying to get me in with a a good endo.

Tired of being out of breath just from up down the steps, pulling clothes out of the washer/dryer.

Has this type of b/p change occur with anyone else? Part of me wants to run to the ER but I know they won't do anything and I even put a call into one of the cardios on call last night and told him what was going on and it didn't seem to bother him. He said you had a negative stress test, calcium score was zero so the fluctuating b/p shouldn't hurt me. But it is! I can't function llke this. How long can I lay in bed??????

I know that most of you are on the betas, but I just can't handle them. And if they want to do adrenal studies I think you have to be off of them anyway.

Thanks once again for listening. It's not easy living alone.

Rene

[Ernie]

Hi,

This is part of POTS symptoms.

[firewatcher]

Easy, calm down, at least a little. An Autonomic dysfunction means you will get those screwy numbers! You will find MANY posts about crazy blood pressure readings with narrow pulse pressure, extreeeeeeeeeeemly LOW BP and huge BP spikes. All of us here are screwed up in that way. Keep a log if you want to, it might shed some light on when and why your BP does what it does. Just to reassure you that this happens with most of us, I'll share some of my gems:

99/88 HR 136--cleaned two sinks

115/101 HR 109--cooking dinner

173/149 HR 89 --reaching above my head for a bowl

84/48 HR 48--lying in bed

96/83 HR 96--stirring my morning coffee

Definitely go to an Endo, just be prepared for EGO!

Take it easy, the calmer you stay, the more stable your BP...at least until you stand up!

[Rene S.]

Easy, calm down, at least a little. An Autonomic dysfunction means you will get those screwy numbers! You will find MANY posts about crazy blood pressure readings with narrow pulse pressure, extreeeeeeeeeeemly LOW BP and huge BP spikes. All of us here are screwed up in that way. Keep a log if you want to, it might shed some light on when and why your BP does what it does. Just to reassure you that this happens with most of us, I'll share some of my gems:

99/88 HR 136--cleaned two sinks

115/101 HR 109--cooking dinner

173/149 HR 89 --reaching above my head for a bowl

84/48 HR 48--lying in bed

96/83 HR 96--stirring my morning coffee

Definitely go to an Endo, just be prepared for EGO!

Take it easy, the calmer you stay, the more stable your BP...at least until you stand up!

Thank you firewatcher. I'm becoming overly concerned. I was tested for a pheo back in Dec. but it's still in the back of my mind. I see your numbers, but can do they change from let's say 5 mins to the next 5 mins? In other words, I can be sitting calmly and it's "normal" and I get up go to the other room come back and it's raised like 30 points! My b/p!!!

I just wonder how much our hearts can take. I always thought of POTS as being always low and never high. I have so much to learn!

Rene

[futurehope]

Hi. Maybe someone can shed some light on my problem. Today I've felt awful. As if a mack truck ran me over. I've probably been overzealous about taking my b/p but I truly can feel it elevating. As soon as I get up bam! heart races and head pulses. If I sit quietly, it's normal. This has been on going and I can't deal with the chest pressure, the flip flops and heartburn (dr says all tests are fine! grrr). Anyway, here is just a sample reading for just today:

136/80 hr 81 (walking into my room) and sitting down

123/76 hr 81 (sitting on my bed)

153/85 hr 92 (walking from one room to another)

138/90 hr 98 (putting laundry away)

108/70 hr 78 (sitting on bed)

115/71 hr 71 (sitting down)

163/76 hr 83 (sitting down)

138/84 hr 105 (standing)

And so on. And they change from minute to minute.

This can't be good for the heart going up down, up down. The lowest is always the morning but my hr tends to be higher.

Trying to get ahold of the cardio is like pulling teeth, but my gastro dr thinks this is also metabolically related. Just since yesterday, I lost 3 lbs and I ate a bunch of fattening things. I'm at my witts end. He's trying to get me in with a a good endo.

Tired of being out of breath just from up down the steps, pulling clothes out of the washer/dryer.

Has this type of b/p change occur with anyone else? Part of me wants to run to the ER but I know they won't do anything and I even put a call into one of the cardios on call last night and told him what was going on and it didn't seem to bother him. He said you had a negative stress test, calcium score was zero so the fluctuating b/p shouldn't hurt me. But it is! I can't function llke this. How long can I lay in bed??????

I know that most of you are on the betas, but I just can't handle them. And if they want to do adrenal studies I think you have to be off of them anyway.

Thanks once again for listening. It's not easy living alone.

Rene

STOP taking your blood pressure from minute to minute. Everybody's BP changes all day long.

Your heart will be fine from the changes. You are driving yourself crazy with anxiety. STOP! What do you mean "I can't function like this?" What, exactly, are you saying? Perhaps you are new to POTS and are not aware that you can feel different minute to minute, hour to hour, or day to day. Are you starting to freak out because you cannot understand why you feel weird all the time and you're alone? Are you scaring yourself?

Are you looking for a simple explanation to all your symptoms? Are you looking for answers?

Before you answer the above 2 questions, just realize that all of us POTsy's are on a perpetual quest to better our quality of life. There are usually no easy answers, though, some people have found underlying causes. Many have not.

It's not fun, but if you have a doctor who is willing to work with you, you may gain back some semblance of normalcy.

I honestly hope you use some of your anxious energy on researching your condition and finding good doctors. But, please, take care of yourself and stop expecting your "normal" or "pre-POTS" life to resurface. You have some adjusting to do to your "new normal". It is unfamiliar. Stay in touch on this forum. Ask questions. Learn. But calm down. Peace.

[Poohbear]

I'm sorry you are feeling poorly!

The figures you posted actually look 'reasonable'. As others have said, it is important not to take your bp too much because sometimes it will just keep us focused and unneccesarily anxious about the numbers. ALL people have fluctuations in bp with changes in activity, before or after meals, exercise, time of day....anything and everything effects blood pressure and that is normal.

I think everyone on this board has these same types of fluctuations. And some of us who have been dealing with this for a long time will also tell you that sometimes you can FEEL absolutely horrible and your blood pressure and pulse will be "perfect". How you feel doesn't always correlate to what is happening in your body.

Some Dr's will say don't take your blood pressure on a daily basis at all; others will say take it once a day..maybe around noon to get a "fair" balance of the day and then only take it if you have a unusual episode (that is unusual from your norm).

It can take time to adjust to these sensations and feeling bad and learning ways to try to distract yourself from all the symptoms--be gentle with yourself. Talk with your Dr and see if he/she feels you need to be checking your bp often.

If you are not able to tolerate BB's then maybe you could consider other treatment options.

Best of luck to you!

[morgan617]

Rene, I think we all kind of go through stages where we do this, get overly concerned about this stuff, and besides, it makes us feel gross.

I can't even remember the last time I checked my BP, because I can tell by how I feel where it's at. You need to remember that POTS is the dysregulation of these things, so they are going to be weird.

If this disease continues to plague you (hopefully you will get much better, I don't know your history) you will become accustomed to these things and they won't wig you out so much, you just learn to adapt. Not a real encouraging statement, but true. morgan

[MightyMouse]

All here said what I was thinking as I read your post--it's normal for bp and hr to fluctuate all day long for "normal" people. Folks dx's with autonomic issues can have somewhat more extreme fluctuations, but it's not usually something to be terrified about. My bp's gotten way higher and way lower than anything you listed...and it's normal for me to also have a heart rate running in the 120's or higher when I'm not active but my bp is low. I can also have a heart rate in the 60's when I'm resting and lying still for a while.

Try to focus more on you big picture rather than the moment to moment changes--if you do, in fact, have POTS or NCS or similar issues, all the numbers you posted are pretty average. As we all say here, "our normal."

Deep, slow yoga breath in, and one nice big sigh out. Random pains, aching, etc. and generally feeling like you have the flu--that's "our normal" -- Unless you're having symptoms of a serious heart issue, like difficulty breathing, paired with intense pain, nausea, sweating, vomiting, etc. that do not subside quickly, --in which case, that's an ER trip.

Nina

[Rene S.]

Hi Ernie,

Thank you! It's just so frustrating!

Rene

[Rene S.]

Thank you, I'm trying to get in with a really good Endo who hopefully has his Ego in check, unlike the EP cardios!

Rene

[Rene S.]

Hi Futurehope,

Yes, I know, I'm getting myself all in a tizzy. Maybe it's due to living alone. I would be more comfortable if someone were around. And I was dealing with fibro/cfs for almost 9 years and it seemed easy compared to POTS which yes, I am relatively new to. Only got my official diagnosis in Feb. The weird things is I can feel when my pressure is up. I guess because both of my parents had high b/p and died realatively young from heart disease that it scares the living daylights out of me.

And I am doing tons of research and calling varioud drs. I was on the phone the entire day yesterday just trying to find some answers. It's most frustrating to say the least. And yes it's so very hard doing this alone.

I do some meditation and relaxation cds and even have an anxiety workbook. I'm not a calm person to begin with and not having answers really freaks me out. Type A personality, what can I say?

I will try to remain calm. And I've only taken my b/p once today and have put the cuff away!

I thank you for trying to bring me back to reality.

Rene

[Rene S.]

Thank you PoorBear for your words of encouragement. I hate the anxiety it's just awful. And I know that if I need to go out, then I can really feel my pulse racing and know in my head that my b/p is up. Just scary. It's all so new!

Rene

[Rene S.]

Thanks, Morgan,

I guess I'm just hoping one day to wake up and being normal again! I know, no such luck.

Rene

[Rene S.]

Thanks Nina, for your wisdom! I just get scared when I get the chest pains and the burning down my arms, neck, back and head. I've had the full cardio workup but still, there's always that lingering voice in my head.

I will try to stay calmer and stop focusing so much on the numbers and stop using the cuff so much.

Rene

[iheartcats]

Easy, calm down, at least a little. An Autonomic dysfunction means you will get those screwy numbers! You will find MANY posts about crazy blood pressure readings with narrow pulse pressure, extreeeeeeeeeeemly LOW BP and huge BP spikes. All of us here are screwed up in that way. Keep a log if you want to, it might shed some light on when and why your BP does what it does. Just to reassure you that this happens with most of us, I'll share some of my gems:

99/88 HR 136--cleaned two sinks

115/101 HR 109--cooking dinner

173/149 HR 89 --reaching above my head for a bowl

84/48 HR 48--lying in bed

96/83 HR 96--stirring my morning coffee

Definitely go to an Endo, just be prepared for EGO!

Take it easy, the calmer you stay, the more stable your BP...at least until you stand up!

Mine are screwy like this too. My HR gets even higher. Dragging around laundry? 170s! But it's a short time and I'm still alive. I won't advise anyone on this...but I guess at this point I know my limits and what I can push on. :/

[flop]

Hi Rene,

you've had some good advice from other members. The things to remember are everyone's BP swings from high to low during the day, it is supposed to change to help us adapt to the different tasks we do, people with autonomic problems like POTS usually have larger swings in BP but it doesn't do us any harm. Low BP often makes us feel dizzy/lightheaded/breathless - the best thing to do is sit or lie down and rest until the feeling passes. You can't normally feel high BP (that is why so many stressed out buisness men don't know that they have high BP) but you can often feel a rapid heartbeat.

I can understand that with your parents having high BP and heart disease that you are naturally worried about the same thing happening to you. The good news is that with the cardiac workup that you have had all coming back "normal" that you don't have clogged up coronary arteries, your cardio can advise you when you should next be checked over. The sort of high BP that is associated with heart disease is a BP that is high almost all the time, even when resting - because yours is going up and down you can be reassured that you don't have persistent high BP.

Learning to live with POTS is difficult, I think that everyone goes through a stressed out phase of checking BP and HR too much and worrying what it means. I do have a BP cuff at home but I hardly ever use it - the exception is that a few days before and after changing my medications I keep an eye on the numbers just so I can see what the new med has done / not done.

If you are feeling symptomatic then drinking a large glass of very cold water can help a lot!

Take care,

Flop