Blood Pressure Readings

[melly4]

I have always had really low blood pressure, but it seems to have gotten worse over time. I was just wondering what blood pressure readings you all have gotten before treatment? I seem to run in the 70's/50's to 90's/50's. The days I'm in the 70's I can't make it off the couch!! I drink water, juice, and gatorade all the time, but it doesn't get any better.

[JenniferInOhio]

100/60 pre POTS diagnosis. With a beta blocker I'm anywhere from 90/60 to 80/50.

[Sunfish]

honestly there's not a lot of regularity to mine. it varies A LOT. i feel best when i'm in the triple digits (on top, not bottom!) and generally am when on the right med combo (while seated or lying down). but i too am definitely stuck flat if i'm under 90..but that's not the only factor as i've had times when my BP isn't as low but i'm so horribly tachy that i can't stay up at all.

as a somewhat related side-note, i shocked the doc & myself by having a "perfect" 120/80 at the doc....of course my HR wasn't so spiffy, but we still laughed as i'm never "normal" in any regard medically-speaking.

are you on any meds to raise or lower your BP?? (either directly, i.e. midodrine, or as a side-effect, i.e. a beta blocker)

melissa

Edited September 12, 2005 by Sunfish

[Guest Finrussak]

i seem to be the oddball...my BP often runs a bit high and jumps higher with episodes. I am at severe stroke risk which is why I posted to the message about this not being life threatening that for some it CAN be!!

BUT if I am upright for any length of time ( varies) then itll drop. Problem is all meds to lower it make the whole dysauto thing worse...I tend to be "adrenergic" which is why they tell me Im always revving..I also guess thats why Dr Grubb has called my condition "mixed dysautonomia with features of OI and POTS"

Problem is any meds we try to lower BP also plays games with heart rate and thats the big no-no with me. I bounce from brady to tachy and PAUSES of several seconds...where my heart stops dead!!! Not a good thing. I was told that when this happens if there is too little blood in the heart ( from low or even "normal" bp) it may not restart!@!!

also, Im puzzled at so many of you having probs with low bp...Im trying to get into the Marshall protocol ( a new theory where Vit D is blocked so that those of us with infections like Lyme and CFS and even MS which may be partly from unnamed infections, can heal by starving the bacteria) and all of them are on BENICAR which is an ARB and lowers their pressure to unbeleivable amts...some report 70-80/35-45 and function well once the "supposed" infections are lessened by starving their little cells of Vit D...the benicar is used "off label" NOT for the BP lowering...this is just a side effect...chemically ( and I dont really have all the details) it somehow blocks metabolites of Vit D. and even the ones with "dysautonomia" in their dx history are doing ok with very low BP...but now you guys have me rethinking the sanity of this...any thoughts???

thanks

[Poohbear]

Seems like this is an area where people are so different. Typically my bp is around 125/80. It often will be 136-140 / 80-88 and I'm okay.

When it spikes to 160/106 I feel horrible but I've been told this isn't a huge increase.

I also feel horrible if I'm upright and my bp drops around 95-100/74 or less. This doesn't bother me if I'm sleeping...only if I'm up trying to function. Again, I've been told this is not technically low bp.

It seems my body is very finicky about bp and likes to stay in a very limited range.

[OCsunshine]

Well when I first became ill and was trying to find a treatment program that worked for me, my regular blood pressure reading was about 60/40. I couldn't even sit propped up in bed without blacking out.

With the meds and other treatments (and after a long period of time), I come in at about 90/60 now.

On a really super duper good day, I'm up there around 110/70.

:-)

[melly4]

I took nadolol for the tachy and heart palps for a while, but I couldn't handle the blacking out, my BP was so low. My 13-yr-old has the problem with his BP spiking really high and then dropping low like mine. He blacks out a lot. Both of us have the tachy and heart palps. We're searching for a doctor in this area (Georgia). I've wondered how they would treat my son, having both high and low pressure fluctuations in the same day?!

[yogini]

Hi Melly,

Have you tried salt tablets or compression hose?

[JaneEyre9]

I'm similar to you melly. At cardiac rehab, i'm pretty dizzy around 85-90/50-55 before exercise. when i do some exercise it will go up a bit (and i feel better), then after i'm done it comes back down lower than where i started. not fun. i think i may be similar to your son because when i feel like i'm going to black out, my bp will spike high. anyway, once you learn what helps you please tell me!

Kristen

[melly4]

Rita, seems like I tried salt tablets in my late teens and early 20's. I'm new here, don't have a doctor familiar with all of this here yet, and I'm clueless to the compression hose thing. Please enlighten me!!

Kristen, we sound similar. I feel better during a good martial arts workout, except for the heart palps and occasional racing heart, but it's nice to have the BP go up to a comfortable range. Unfortunately, afterwards, I'm so shaky. It's miserable, and I take klonopin for it. But I'm afraid all that does is "put a bandaid on the problem", not fix it.

[India]

During the tilt table test I was 55/47 and the doc was amazed that I didn't black out. I've never managed to take an accurate measure of my BP when I feel really bad as moving around to get my bp monitor always pushes the rate up a bit! But I am sure I probably get down into the tilt table range. I tend to run in the 100-110/60-70 range. I take 25mg of Atenolol per day as I get very bad adrenergic excess attacks and this probably keeps it down.

I do find, however, that when I feel slightly off my systolic may be o.k--100-107--but my diastolic is low. This morning, for example, I was 107/45 and felt very s.o.b. Does anyone else have this problem or is this not a POTS related issue?

India

[melly4]

India, I have the shortness of breath, too. It drives me crazy, and then I think I hyperventilate to compensate. I've never smoked, have been an avid athlete except when my symptoms get too scary and I can't move off the couch, and I have no heart disease. So I can think of no other reason for me to have s.o.b. Have you tried deep breathing exercises, like belly breathing, etc. ? It helps me when I have a particularly bad episode. The exercises keep me from hyperventilating, which makes things worse.

[India]

Melly,

I think I have exactly the same issues as you. When I am conscious of being s.o.b I think I overcompensate and end up overbreathing. Then I get all panicky and everything gets worse. I've tried the belly breathing and I've tried short in breaths and long outbreaths. It works sometimes but at others I find it just makes me more conscious about my respiration

I too have no heart disease and have had stress tests and the super enjoyable electrophysiological study of my heart to look for arrhythmmias (I can never spell that word right ) but they all came back negative. So I guess it must be the POTS. I was sitting here typing earlier and I went s.o.b all of a sudden and now I'm o.k. It just frustrates me that neither I nor the docs can pinpoint the triggers.

On that point, the only doc I knew in Hawaii that knew something about POTS has left (aagh) Are there any other Hawaii POTS sufferers out there who know someone who knows something? My current cardiologist is clueless.

India

[yogini]

Compression hose is a kind of pantyhose which keeps up your BP. They have been great for many of us. Here is the info on compression hose from the dinet website:

Compression devices, such as abdominal binders and compression stockings, help to reduce the amount of pooling blood. Compression stockings should be at least 30-40 mm Hg and will work best if they are waist high (Grubb & Karas, 1999). Compression stockings should be fitted to achieve the greatest benefit. BrightLife Direct* carries affordable compression hosiery.

As for the salt tabs, I thought I'd mention them, but I can't keep them down either! I have to drink soup broth instead.

[Guest Finrussak]

Hi guys

Does anyone actually feel Ok or better with low BP.?? If I feel crummy with ok bp and bad when my bp soars then drops ( although not ever as low as my ttt when I slowly but awfully dropped to 70 over NOTHING as in barely even felt it..).I am still cautious about that Marshall protocol thing. Right now with my high/low thing I am on NOTHING...any and all meds/doses thats meant to stop the highs put the lows too low and any/all things meant to raise the lows puts the highs too hi...its like my body is fighting and overcompensates for both situations. Plus the chemicals Im pulsing ( adrenaline, seratonin , dopamine etc) are so short lived that by the time anything taken would get into my bloodstream to block them, the symptoms are already swinging back the other way and would make it too dangerous!!I am so tempted given the positive responses to the protocol, seems like those people feel the low bp is a small price to pay and none really report any sort of "misery"...but I really have to rethink the whole really low bp on Benicar thing...any thoughts???

[pamela]

Hi guys

Does anyone actually feel Ok or better with low BP.?? If I feel crummy with ok bp and bad when my bp soars then drops ( although not ever as low as my ttt when I  slowly but awfully dropped to 70 over NOTHING as in barely even felt it..).I am still cautious about that Marshall protocol thing. Right now with my high/low thing I am on NOTHING...any and all meds/doses thats meant to stop the highs put the lows too low and any/all things meant to raise the lows puts the highs too hi...its like my body is fighting and overcompensates for both situations. Plus the chemicals Im pulsing ( adrenaline, seratonin , dopamine etc) are so short lived that by the time anything taken would get into my bloodstream to block them, the symptoms are already swinging back the other way and would make it too dangerous!!I am so tempted given the positive responses to the protocol, seems like those people feel the low bp is a small price to pay and none really report any sort of "misery"...but I really have to rethink the whole really low bp on Benicar thing...any thoughts???

<{POST_SNAPBACK}>

My Bp is low normally all my life and a littly tachy all my life for my age. Resting Hr for me is 75-105,and sleeping BP is 60/40 ish, and my O2 readings around 90% whne I am resting in the wonderful Hospital. I of course get a nurse shaking me awake telling me to sit up, roll over, or take a few deep breaths. During my tt in May my bp went from 97/50 hr 70after 10 min up i wa down to 68/18 and 125bpm. At 13 min they layed me back down, and I came around 5 min later.

My question is .. What magic pill will slightly elevate your BP, lower your standing pulse and give me back a little enegy without being on Rittalin (nadol made me pass out, florinef caused fluid gain of 10 lbs in 2 days and heart problems(fluid around) witj even lower pottasium levels.

Help! Don't evenask about my energy levels. They only exsist with the Rittalin then I get severe fatigue . My 18month old exhaust me! Sorry to be so whiney.

[persephone]

I can be anything between 54/30 and 228/163, as earlier posts on here will testify!

One question while I'm here though- do any of you guys have thresholds for your bp--I mean, do you say if your bp is above or below a certain number, you will call a doc/go to the er, etc?

I would feel a lot more comfortable if I had this option--of knowing what was safe and what wasn't. no one has given me any guidance on this.

[pamela]

I can be anything between 54/30 and 228/163, as earlier posts on here will testify!

One question while I'm here though- do any of you guys have thresholds for your bp--I mean, do you say if your bp is above or below a certain number, you will call a doc/go to the er, etc?

I would feel a lot more comfortable if I had this option--of knowing what was safe and what wasn't. no one has given me any guidance on this.

<{POST_SNAPBACK}>

I do not have a threshhold or certain # where I will call the Dr. I do't have a home BP monitor yet but I need one. However, if I have a sudden drastic change in the way I am feeling I get concerned. I would make sure to know the signs and symptoms of MI,stroke and or heartattack. I know I have mild symptoms that mock those of the above, but a sudden change I.E. like headache,palps,confusion,loss of vision or one sided paralysis etc..or nausea,chest pain,irregular ht rate all together more severe than a bad pots day and its best to go to the ER. Thats how I was dignosed. My POTS symptoms sent me to the hospital, and I had aMIcaused by elecotrlyte disturbances, low Blood volume and when things calmed down I had a tilt test that caused the same symptoms and they diagnosed me with POTS. So I was glad for a diagnosis after the year long syncope,weakness and palpitations but I wish that my DR's would have taken me seriousl. Now I have had a MI at 32 and some damage to the heart that could have been prevented.

[Gena]

Melly,

I noticed you said you lived in Atlanta area. Have you tried getting over to Birmingham, AL to the Dysautonomia and MVP Clinic there? They have some decent docs that are very familiar with dysautonomia and could probably help.

Hope you feel better soon.

(By the way, my BP is always low too. At night it will run as low as 70s/40s, during the day around 90/60 on good days.) My body is learning to adapt somehow though.

Gena

[melly4]

Thank you, Gena, for the advice about the dysautonomia clinic in Birmingham. I will definitely check into that if we can't find anyone experienced around here. We just moved here, so I really appreciate doctor referrals.

As far as ER's go, I try to stay away from them unless things are really out of control. When we were still in SC, I took my son to the Peds ER with a BP of 170/110, and he was totally ignored!! Our instructions from his pediatrician was to go if his blood pressure was 140/80 or above. The pediatric care there was really poor. They didn't even have the setup to do 24-hr ambulatory BP readings. Isn't that pathetic?! Things seem to be much better here thus far.

[Guest Finrussak]

My cardiologist uses the following to help me from running to the ER: heart rate over 120 for more than 45 min ( or over 130 for 30 min), BP over 150/110 for more than 1 hr ( or over 170/120 ANY time). But then I am 48, and have had probs 15 yrs due to Lyme etc...considered mediacally "fragile" high stroke and MI risk...especially since now I tend to low potassium...heart pauses and skips etc...or if I have ANY unusual chest pain or short breath...i.e. anything feeling "different"

But you should really ask your own drs ...it really depends on your own physical state

[Lukkychrm42]

Hi there

My average healthy baseline BP is about 115/75. I start feeling dizzy (apart from the HR) when it drops below 100 (top number), and when I am lying down on no meds it's anywhere from high 70s/40s to 90s/60s.. When I stand up it usually jumps up to normal or sometimes high. (Haha this is why I got my first echo- my doctor took my BP ONE time and it was high, and with my dizzy spells she brought out the big guns.) During my tilt, (which isn't the most controlled test in the world), my bp went from 112/78 to 74/palp. My doctor had no explanation as to why I was still standing, but there I was. (And much of the test they couldn't even find my BP manually.)

I dunno- it seems like we're pretty wacko!