BP and Orthostatic Hypotension

Posted by kaptainkat @kaptainkat, Oct 27 12:05am

I have been having issues lately with orthostatic hypotension. Paramedics were here for my BP being low. By the time they arrived, I was feeling better and my BP was at acceptable numbers. The paramedics were packing up, and the one tech said, 'Let me get one more reading with you standing up.' He didn't say anything but 'Sit down. You need to go SOON! Either we take you of your wife takes you, but you need to GO. NOW!'
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I still don't know what the drop was, but some saline and I was back home.
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The consensus is that I am dehydrated.
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I am enteral fed - tube feed drips directly into my stomach. I have either achalasia or just plain 'Absent Constrictivity. My esophagus doesn't work.
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I HATE the taste on water! In order to get H2O into me between runs of formula through my rig I run a full liter of water. 200ml during the day and 800 overnight.
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Back to my hypotension. Nearly every night as a 'shut down', I listen to Pink Floyd's Dark Side of the Moon suite. I close my eyes and establish a deep breathing pattern that closely coincides with the music.
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Being aware now of my BP, I checked it prior to and after listening, and I have been able to repeat dropping it by 12 to 19cm diastolic. They took me to the ER at 92/60, and with breathing I've brought it down to 90/65!
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Am I doing myself DAMAGE by having it go so low? I have been in 'hydration' mode for a week or so. Am I still puckered? Will it still drop that low when I am hydrated?
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Stress test, Echo 45 with AMG, and ultrasound next week.
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Any word on the orthostatic hypotension or 'self-induced' (breathing) hypotension are appreciated.
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Thank you in advance.
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Kaptain Kat
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(=^..^=)

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My bp is almost always in the 90's systolic. Doctors have never indicated a problem. Did yours go lower? I thought it was common for bp to drop when standing up, but maybe I'm wrong. My kid had POTS and had a drop in bp with increase in heart rate when standing up.

I know what you mean about the breathing. Can you find out if hydration keeps bp higher even if you do the breathing? I thought it was common for meditation, Qui gong, Reiki and so on to lower bp.

The only downside to my lower bp apart from some lightheadedness getting up , is possible effect on kidney filtration rate (eGFR). I am really curious what was going on for you to make the paramedics take you to the hospital.

Your situation with hydration is not common and with your "rig" are you often dehydrated?

REPLY

@kaptainkat Can you swallow flavored water? I use True Lemon found on Amazon. They also do orange and lime flavors. These are crystals that come in foil packets you can add to water or juice. This might help you get the volume of hydration you need, and to be able to spread it out over the course of a day.
Ginger

REPLY
@windyshores

My bp is almost always in the 90's systolic. Doctors have never indicated a problem. Did yours go lower? I thought it was common for bp to drop when standing up, but maybe I'm wrong. My kid had POTS and had a drop in bp with increase in heart rate when standing up.

I know what you mean about the breathing. Can you find out if hydration keeps bp higher even if you do the breathing? I thought it was common for meditation, Qui gong, Reiki and so on to lower bp.

The only downside to my lower bp apart from some lightheadedness getting up , is possible effect on kidney filtration rate (eGFR). I am really curious what was going on for you to make the paramedics take you to the hospital.

Your situation with hydration is not common and with your "rig" are you often dehydrated?

Jump to this post

Since becoming an issue, I have been trading up some on BP. 90's are said to be OK, but on the low end of the 90-120 'normal' range. It IS common to drop when standing. I guess is issue is how much it drops. In my home test I drop 15mm, from 114 to 90. I must have dropped to 'hypotension' range.
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The tech read me sitting down and I was within acceptable parameters. They were packing up and he said, 'Let me check you one more time standing.' Followed only by 'Sit down. You need to go SOON! Either we take you or your wife takes you. SOON! Like NOW!' And off we went.
What I read is that low BP robs the body and significant organs - heart and brain - of O2.
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I have had sciatica and arthritis in both feet for a couple years now. I am too rapt in getting those body parts stable when I stand up to notice if I am getting dizzy or lightheaded. I have been getting my bearings when I stand up ere moving for a while now.
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Last night's breathing got me a new low - 89/62.
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I guess I have ALWAYS been dehydrated. My new dietician says I need 840ml of H2O. So my new plan has me running 200 between feed during the day and 800 overnight. I am on day 4. I don't know how long it will take to rehydrate all my cells.
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I just don't drink much. I can swallow liquids. And my 'drink' is 50/50 electrolyte enhanced (Ultimate® raspberry flavor added) water and ginger ale.
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Thankmew for your response.
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REPLY
@gingerw

@kaptainkat Can you swallow flavored water? I use True Lemon found on Amazon. They also do orange and lime flavors. These are crystals that come in foil packets you can add to water or juice. This might help you get the volume of hydration you need, and to be able to spread it out over the course of a day.
Ginger

Jump to this post

My 'drink' is 50/50 electrolyte enhanced (Ultimate® raspberry flavor) water and ginger ale.
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Liquids are ok, to a point. Without a lower esophageal valve they tend to splash in and trigger my GERD. Ergo I am getting H2O via my tube.
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It has been suggested that I flip-flop my feeds, and get my 800ml of H2O during the day while I am 'active', and nutrition at night. I am waiting to hear from my dietician on that.
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It has also been suggested adding some salt to my tube H2O, but I have not heard back on how much salt per liter.
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Thankmew for your response.
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(=^..^=)

REPLY

After failing a Tilt Test at John Hopkins, they said I have NMH (neurally mediated hypotension), this falls in the family of POTS or orthostatic hypotension..as I recall being told. I failed it with 56/23, but did not die, as soon as I was tilted down, I was fine. I was prescribed a common drug to treat it..first, sodium chloride aka salt, but if that did not work, fludrocortizone, .1mg daily.

However, because my regular pulse and BP has always been historically low since my 20s, and I am almost 59, I decided to not take either drug. My incidents only happened in a sauna (stayed too long until I was pouring sweat outa my glands which I love to feel), hot tub while sipping alcohol, running in New Orleans or extreme heat 95 plus with excessively high humidity, or working out too hard to the point of exhaustion. I have been an avid runner, sports, etc all my life, so I just was surprised when all of a sudden this summer I had 2 episodes when I woke up in middle of night to pee, and had unexplained syncope (fainting) and really injured myself with my falls. This is what lead to the Tilt test. Until my recent NMH diagnosis, I was always eating a low salt diet because hypertension runs in my family..now I ADD salt to my diet, as I was advised to do so.

The main differences between you and I are: I LOVE DRINKING WATER which is crucial to treat our condition..I drink in excess of a liter often about 80 ounces daily...this helps your body absorb salt which helps increase BP.

I am avoiding the fludrocortizone because it is a steriod and I don't want the likely side effects (insomnia, weight gain, more sweating - I already suffer horrible hot flashes), but I have read NIH studies, and it apparently works to help reverse hypotension..don't know longterm results.. I tried taking the prescribed salt, but it gives bad after taste, yeck and is not proven to work longterm anyway.

To avoid syncope, I sit up in bed before rising, and move a bit to circulate my blood, BEFORE rising to walk to pee in middle of night. I avoid saunas and avoid hot tubs and avoid strenuous exercise in excessive heat.

It sounds like fludrocortizone will work for you. Maybe the reason you do not like water is because you are used to the sweet taste of sweet drinks? and sweet foods?

To control my A1C I stopped added sugar and sweets cold turkey in my 40s, and I never add any sugar in my drinks, not even artificial, and drink sparkling water with a hint of fruit flavor, BUT mostly water...your taste buds will adjust once you stop sweets, added sugar...and then maybe you will adjust and like the taste of water, which is really what you need to avoid dehydration.

I am praying for you from afar, take care dear

you have more complications, but

REPLY
@tinamaria1

After failing a Tilt Test at John Hopkins, they said I have NMH (neurally mediated hypotension), this falls in the family of POTS or orthostatic hypotension..as I recall being told. I failed it with 56/23, but did not die, as soon as I was tilted down, I was fine. I was prescribed a common drug to treat it..first, sodium chloride aka salt, but if that did not work, fludrocortizone, .1mg daily.

However, because my regular pulse and BP has always been historically low since my 20s, and I am almost 59, I decided to not take either drug. My incidents only happened in a sauna (stayed too long until I was pouring sweat outa my glands which I love to feel), hot tub while sipping alcohol, running in New Orleans or extreme heat 95 plus with excessively high humidity, or working out too hard to the point of exhaustion. I have been an avid runner, sports, etc all my life, so I just was surprised when all of a sudden this summer I had 2 episodes when I woke up in middle of night to pee, and had unexplained syncope (fainting) and really injured myself with my falls. This is what lead to the Tilt test. Until my recent NMH diagnosis, I was always eating a low salt diet because hypertension runs in my family..now I ADD salt to my diet, as I was advised to do so.

The main differences between you and I are: I LOVE DRINKING WATER which is crucial to treat our condition..I drink in excess of a liter often about 80 ounces daily...this helps your body absorb salt which helps increase BP.

I am avoiding the fludrocortizone because it is a steriod and I don't want the likely side effects (insomnia, weight gain, more sweating - I already suffer horrible hot flashes), but I have read NIH studies, and it apparently works to help reverse hypotension..don't know longterm results.. I tried taking the prescribed salt, but it gives bad after taste, yeck and is not proven to work longterm anyway.

To avoid syncope, I sit up in bed before rising, and move a bit to circulate my blood, BEFORE rising to walk to pee in middle of night. I avoid saunas and avoid hot tubs and avoid strenuous exercise in excessive heat.

It sounds like fludrocortizone will work for you. Maybe the reason you do not like water is because you are used to the sweet taste of sweet drinks? and sweet foods?

To control my A1C I stopped added sugar and sweets cold turkey in my 40s, and I never add any sugar in my drinks, not even artificial, and drink sparkling water with a hint of fruit flavor, BUT mostly water...your taste buds will adjust once you stop sweets, added sugar...and then maybe you will adjust and like the taste of water, which is really what you need to avoid dehydration.

I am praying for you from afar, take care dear

you have more complications, but

Jump to this post

Thankmew for you response.
.
The only 'processed' sugar I get os from my ginger ale, which I mix 50/50 with electrolyte enhanced (via Ultimate® powder) water.
.
And whatever is in my formula. My GP said to add salt to my H2O but failed to give me an amount. I have queries out to my dietician and a nurse dietician from my home health care supply company.
.
I am hoping that the liter a day via my feed tube will be sufficient, along with whatever little I take orally.
.
How much NaCl do you add? I haven't much is measuring devices - teaspoons and such - but my scale goes to 100ths of a gram, so grams per liter is the best for me.
.
(=^..^=)
.

REPLY
@kaptainkat

Thankmew for you response.
.
The only 'processed' sugar I get os from my ginger ale, which I mix 50/50 with electrolyte enhanced (via Ultimate® powder) water.
.
And whatever is in my formula. My GP said to add salt to my H2O but failed to give me an amount. I have queries out to my dietician and a nurse dietician from my home health care supply company.
.
I am hoping that the liter a day via my feed tube will be sufficient, along with whatever little I take orally.
.
How much NaCl do you add? I haven't much is measuring devices - teaspoons and such - but my scale goes to 100ths of a gram, so grams per liter is the best for me.
.
(=^..^=)
.

Jump to this post

Sounds good that you are getting at least a liter a day on H20, per doctor advice.

My doc prescribed sodium chloride tablets aka salt pills, ONCE a day 1 Gram, OR, .1 mg fludrocortizone (which I am not taking).

BTW I ordered the same salt pills on amazon, 1 gram a tablet.

REPLY
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