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I don't have OI -- Wrong!

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
This thread has me reconsidering how well I have my blood volume/blood pressure issues controlled.

In reading this, I realized that I roam around the apartment when I first get up to get myself awake and ‘get my blood going’. I find standing and filling my daily pill box to be tiring. It also gives me the fog-on-the-top-of-the-brain feeling.

This morning I decided to check my blood pressure and pulse after filling the pill boxes. They were 101/67 & 97. Later in the day when I was feeling better, they were 112/64 & 80. This evening I watched T.V. with my mother. When I go home I had the foggy head, so I checked again - 107/68 & 94. Does sitting fairly still in a chair cause the same problems as standing fairly still? My heart was not ‘pounding’ at all. I had no idea it was that high.

This spring when I was staring T3 I was monitoring my waking pulse with my PB meter, so got both. I got 33 data points over about a month and a half. My pulse was generally in the mid to upper 60s. My systolic BP was 115 - 125. My diastolic BP was generally 65 - 75. I am on the same dose of T3.

My diastolic pressure appears to be remaining the same, but the systolic pressure is down and the pulse is up. Is the heart beating faster because the systolic pressure is down?

I am going to do some checks during the day when I am not feeling bad. I am also going to be more diligent about my drinking. I quit drinking potassium chloride in water because I thought it was irritating my digestive tract. I am giving it a cautious second try and am considering adding some sodium chloride as well. (I was initially taking the KCl for low potassium, which has corrected.)

I have always thought maybe i just had a low grade OI thing but of late maybe not, i dont have wildly fluctuating bp or pulse etc but do have them on occassions. I looked up symptoms the other day and have a heap of them? here's my weird symptom list that i think are due to autonomic dysfunction.
head sweats out of nowhere
head flushing
pale episodes
peeing like a race horse
drinking all the time
craving for iced cold drinks
urge to lie down and quickly feel better within 5 mins
salt cravings
headaches
brain fog
brain fog clarity from mild stimulants that cause vasoconstriction like sudafed
malaise
body weight can fluctuate 3-4 kg in a day especially if i have a mung on carbs

of late have had some symptoms improve like headaches and brain fog with electrolyte drinks etc

sometimes i think we may not see vital sign changes as our body is adjusting somewhat to this but eventually as it gets worse then we see bp and pulse rate changes.
 

maddietod

Senior Member
Messages
2,859
I just tested my BP meter on 3 of my kids, who have normal BP. All 3 tested low; one got a systolic reading of 97. It looks like I've got another defective monitor.

Is there a reliable monitor out there?

I just found this link about reliable meters, on the Mayo Clinic site.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I just tested my BP meter on 3 of my kids, who have normal BP. All 3 tested low; one got a systolic reading of 97. It looks like I've got another defective monitor.

Is there a reliable monitor out there?

I just found this link about reliable meters, on the Mayo Clinic site.


I am very happy with my CVS hand pump, digital display model (with memory).

Sushi
 
Messages
15,786
My diastolic pressure appears to be remaining the same, but the systolic pressure is down and the pulse is up. Is the heart beating faster because the systolic pressure is down?
Probably. When systolic drops but diastolic stays the same, your pulse pressure gets a bit narrow (not too bad in the examples you posted), and less blood gets circulated with each heart beat. Heart rate increases to compensate. This won't feel like "pounding" because your heart beats/pulse are actually a bit weaker than usual. Hence it's very easy to miss it happening unless you're monitoring it.

For me, the elevated heart rate also corresponds with a drop in oxygen levels, which is probably resulting from the decreased pulse pressure. With a pulse oximeter I can see my oxygen levels temporarily dropping, followed by heart rate increasing. Then once my oxygen is back to 99% (my body won't accept anything lower), my heart rate starts to slow down, which then causes oxygen to drop again - resulting in heart rate increasing again.

I can avoid this happening somewhat with careful pacing. I use the pulse oximeter to see what my heart rate is at, and if it's higher than normal, it means I need to rest and especially avoid vigorous activities such as a bath or walking up or down a flight of stairs.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Rebounder May Help Low Pulse Pressure

I have a rebounder. It is supposed to help the autonomic nervous system so I decided to see if it would bring my pulse down when it was high. It did not. I am doing 400 gentle bounces in which my feet do not leave the surface of the rebounder.

A few days later I decided to go back through my blood pressure meter readings and calculate pulse pressure. By a stroke of good luck, my pulse pressure happened to be low, 27 (98/71), on the morning I decided to see if the rebounder would help my pulse. After using the rebounder, my pulse pressure was 44(110/66).

Fortunately, my pulse pressure is good most of the time. It was low one morning when I got up, so I tried the rebounder again. It went from 28 (103/76) to 46 (116/70). In both cases it increased the pulse pressure by raising the systolic pressure and lowering the diastolic pressure. In neither case did it raise my pulse much. In the first instance it went from 86 to 87 and in the second from 64 to 67.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I was dx with oh at least as far back as 1992, but didn't know that I had pots until
a couple of years ago. This has completely changed how i live my life. Now I no
longer get upset when I start feeling like crap after I've been upright for
awhile. I know it's just my oi/oh/pots and that laying down will make
me feel better. Sure being supine sucks but not as much as having
my heart race, sob and a petite mal. I know too that I always get sob,
heart racing and a petite mal if I'm standing for more than 10 minutes.

I learned by using my bp and hr cuff that it takes my heart an hour of being
supine to get back to my normal resting rate. This makes a big difference
because if I get up sooner my hr goes back up to my pots hr immediately.

If I wait an hour I have 10 minutes before my hr gets to my pots rate again.

This isn't always possible but at least I know.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I was dx with oh at least as far back as 1992, but didn't know that I had pots until
a couple of years ago. This has completely changed how i live my life. Now I no
longer get upset when I start feeling like crap after I've been upright for
awhile. I know it's just my oi/oh/pots and that laying down will make
me feel better. Sure being supine sucks but not as much as having
my heart race, sob and a petite mal. I know too that I always get sob,
heart racing and a petite mal if I'm standing for more than 10 minutes.
I think the pots / oi stuff maybe progressive before it becomes obviously noticeable. I wonder if the longer one has cfs the more noticeable or more severe pots/oi becomes???



I learned by using my bp and hr cuff that it takes my heart an hour of being
supine to get back to my normal resting rate. This makes a big difference
because if I get up sooner my hr goes back up to my pots hr immediately.

If I wait an hour I have 10 minutes before my hr gets to my pots rate again.

This isn't always possible but at least I know.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
For the record I just tested this again. My hr was 120 after I made and ate breakfast.
I had my normal sob, petite mal and heart racing. I refer to these as pots
episodes now.

I got up to use the bathroom after about 20 minutes and my pots symptoms
came right back. I was too weak to re-test and laid back down.

After being supine for 10 minutes I'm finally feeling clear headed enough to re-test. Bp = 115/72, hr = 77.

If my normal holds true, after being supine for an hour, my hr will go down to the 60's and I will feel healthy.

eta. My hr went into the mid 60's range like usual and I felt healthy. I've been like
this since about 2008. Three years post gf, cf, etc diet. My bp is up which explains the tense
feelings I've had for the last week. Don't know why tho.
 

SOC

Senior Member
Messages
7,849
Rebounder May Help Low Pulse Pressure

I have a rebounder. It is supposed to help the autonomic nervous system so I decided to see if it would bring my pulse down when it was high. It did not. I am doing 400 gentle bounces in which my feet do not leave the surface of the rebounder.

A few days later I decided to go back through my blood pressure meter readings and calculate pulse pressure. By a stroke of good luck, my pulse pressure happened to be low, 27 (98/71), on the morning I decided to see if the rebounder would help my pulse. After using the rebounder, my pulse pressure was 44(110/66).

Fortunately, my pulse pressure is good most of the time. It was low one morning when I got up, so I tried the rebounder again. It went from 28 (103/76) to 46 (116/70). In both cases it increased the pulse pressure by raising the systolic pressure and lowering the diastolic pressure. In neither case did it raise my pulse much. In the first instance it went from 86 to 87 and in the second from 64 to 67.


Isn't this just the normal bodily response to exercise? Activity, by itself, should raise your pulse pressure for the duration of the exercise and for some time afterwards. That's normal. Most of the time when we talk about pulse pressure (and blood pressure, in general) we mean resting pressure, or even more specifically, first morning pressure which is an even better indicator of low blood volume. The resting measure is the baseline that's usually used for comparison because activity can change BP, HR, and PP in the moment.

Or did you actually change your first morning (baseline) pulse pressure this way? If so, how many days (or weeks) did you do rebounding before you saw a consistent change in your first morning pulse pressure?
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I do not know if this is the normal bodily response to exercise because my pulse pressure is usually good.

In the first instance, I was up and exercising, i.e. standing filling my pill box, which sends my pulse up. It had been going to 89 - 91, but on the morning I had decided to see if the rebounder would bring down my pulse, it was only 86. I did not notice the effect on my pulse pressure until I was calculating pulse pressures a few days later. I continued to calculate pulse pressure as I recorded each reading after that.

In the second instance, the low morning pulse pressure was an anomaly. If it ever happens again, I will try just getting up and walking around.
I do rebounding almost every morning, so this was an immediate, not long term, response to the rebounding.

One morning when my pulse pressure was unusually high at 51 after filling the pill box, the rebounding lowered it to 44. My blood pressure went from 121/70 to 125/81. This did not strike me as a good thing so I am no longer rebounding after I fill my pill box. ETA: I guess what I really should be doing is not rebounding when my pulse pressure is high or getting more than one reading before making a decision.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I was dx with oh at least as far back as 1992, but didn't know that I had pots until
a couple of years ago. This has completely changed how i live my life. Now I no
longer get upset when I start feeling like crap after I've been upright for
awhile. I know it's just my oi/oh/pots and that laying down will make
me feel better. Sure being supine sucks but not as much as having
my heart race, sob and a petite mal. I know too that I always get sob,
heart racing and a petite mal if I'm standing for more than 10 minutes.

Just want to post this due to your mention of petit mal in another thread, where I didn't want the issue to become a distraction from the thread subject.

If anyone thinks they may have petit mal, I would advise checking, as it may not be.

This page seems good.

This page linked from it has what may be some pertinent info:

Sometimes, children are placed on a special diet to help prevent seizures. The most popular one is the ketogenic diet. A diet low in carbohydrates, such as the Atkins diet, may also be helpful in some adults.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
MeSci

thanks. i found this a few years ago. I even tried the Modified Atkins Diet, mad, which
is being recommended by some instead of the ketogenic diet.

I had to abandon it after several weeks because I was constantly pale and
in a petite mal state. My bg level was hanging at 67 despite eating mad foods.

In my case, I wouldn't try it again unless I was under
medical supervision.

I had petite mals as a child too just not as frequently. My mother just thought
I would get spacey or refuse to listen. Yeah, mom. Good call. lol.

tc ... x
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
btw, Dr peckerman did an interview on how cfs could actually be from hypoperfusion
caused by oi. The article is on this site.

He didn't mention hyperperfusion tho and since our blood isn't leaving our
bodies we have that too.

Now to find a solution for oi. ; ) ... tc ... x
 

NrsNoMore;(

Stop and smell the roses...
Messages
5
Location
Haslet, Texas
Sasha, what is the 30 minute test for OI? I am a nurse and had my doctor's office do a standard tilt test like we do in the ER to diagnose dehydration/ low blood pressure/ Orthostatic hypotension. My BP dropped 20 points from sitting to standing. That was a positive tilt test in ER standards. How is the 30 minute test done?

NursNoMore
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Sasha, what is the 30 minute test for OI? I am a nurse and had my doctor's office do a standard tilt test like we do in the ER to diagnose dehydration/ low blood pressure/ Orthostatic hypotension. My BP dropped 20 points from sitting to standing. That was a positive tilt test in ER standards. How is the 30 minute test done?

NursNoMore


It's a long time since I did it - here's a link to a thread on it:

http://forums.phoenixrising.me/inde...t-table-test-pmttt-for-oi-pots-and-nmh.12291/
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Sasha, what is the 30 minute test for OI? I am a nurse and had my doctor's office do a standard tilt test like we do in the ER to diagnose dehydration/ low blood pressure/ Orthostatic hypotension. My BP dropped 20 points from sitting to standing. That was a positive tilt test in ER standards. How is the 30 minute test done?

They do a Tilt Table Test (aka, Head Up Tilt) in the ER? I had no idea.

The first time I heard about the Tilt Table Test was back in 1995 when Johns Hopkins released a study linking Orthostatic Intolerance to ME/CFS ( http://www.ncbi.nlm.nih.gov/m/pubmed/7674527/ ). There have been a lot of studies since then.

At the time, the Hopkins researchers were recommending 45 minutes for phase 1 of the test. The word "phase" can be confusing so I'll try to define what I mean by that.

The first part of the test, which I'll call phase 0, is with the table lying flat, not tilted. Various monitoring devices are hooked up (EKG, blood pressure cuff, IV line in case it is used later, etc,). The patient's baseline heart rate and blood pressure are measured during this time.

Then phase 1 is when the table is tilted to an angle (usually 70-80 degrees). The patient's vital signs are measured until either the time elapses or enough data is gathered that shows an abnormal result. (or if the patient asks the test to stop, I guess).

Some doctors stop phase 1 after only 10-15 minutes. Many doctors say that's too short because it will miss patients who have a delayed drop in blood pressure. (That's me! my severely abnormal BP drop didn't come until 20 to 30 minutes into the test) Other doctors say that 30 minutes is plenty. Still others say that it needs to be 45 minutes long. If the patient does not have an abnormal reaction during phase 1 then they go on to phase 2.

In phase 2, the table is put flat again and the patient is given a drug (isoproteronol, for example). Then the table is tilted upright again. I have a friend who did fine during phase 1 but had an abnormal test result in phase 2.

Here's a link with some more details in case it helps - http://www.hopkinsmedicine.org/heal...ardiovascular/tilt_table_procedure_92,P07985/

All of this is made more complicated by different doctors having different opinions on what constitutes a "positive" (abnormal) test and deciding when the test should be stopped. I think by now most doctors agree that it's not that simple that a patient must faint in order for the test to be abnormal. But I don't think they all agree on what is a real positive vs. a false positive, especially when it comes to the IV part of the test.

I hope this helps. I know some people may get some useful data from an at home test ("poor man's tilt table test") but I'm pretty sure it would not have worked for me. I think home testing for POTS (which shows itself mostly through the increased heart rate, easier to measure) is easier than home testing for NMH (Neurally Mediated Hypotension). With NMH there's often a long delay before the drop in BP (doesn't drop immediately on standing) and any moving around, even just fidgeting or talking, can be enough to keep it from dropping enough to show an abnormal result.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
When I was getting Meyer's cocktails the
only improvement i saw was that it stopped
being painful at the injection site. Has anyone
else tried these ? The nurse administering thuse
said i was the only patient who complained about
pain. My veins were hard to catch tho because they
would role.

I'm now having seizure like episodes during blood draws
or ivs. Actually it's more of a movement disorder. I know
my arms move but not sure what else. Klonopin stops
it. It's some kind of vasovagal reaction. As if doctors
didn't already think i was nuts. lol.

fwiw I'm not sure we can relate fluid intake to blood
volume. We may just be peeing this out.