I don't have OI -- Wrong!

[perchance dreamer]

I did great with Alacer, but it made my teeth too sensitive, so I had to stop it.

 

[L'engle]

Going on methyl b12 changed my electrolyte needs a lot. I used to need tons of salt with my fluids and with every meal. Disgusting. Unpleasant amounts of salt. When I started methyl b12 my need for potassium instead became much greater and anything more than a small salt intake makes the potassium loss worse. So my electrolyte plan looks different now and consists of two types of drinks. In the morning and early afternoon, I make strong cocoa that contains 1 tbsp of cocoa powder mixed into a mug of half rice milk and half hot water. It's tasty and has tons of minerals. Later in the day I can't handle caffeine so I switch to a half tsp of spirulina powder with a half tsp of powdered stevia in a cup of water. It doesn't taste so great but has tons of nutrients. Drinking both of these I keep fluid in much better than by drinking water. I start the fluid intake really early as I tend to have a wake up around 4-5am where I need to eat and drink.

The methylb12 treats the oi about similar to how the salt did, but is much easier because the sheer amount of salt needed to get the benefit was just utterly non sustainable. If I had tried to sweeten those cups of salt water to taste I would have melted teeth and rampant blood sugar. Potassium sources tend to taste better to me. The potassium drain is a lesser evil to me.

 

[RustyJ]

I generally dont get big bp changes but im thinking the chronic headaches and brain fog may have alot to do with it and my cognitive stuff is getting worse but I do feel better foe several hours after stimulants like sudafed etc that vasoconstrict. Also have periods where I get flushed as well as go white as a sheet . Wasnt able to take my bp at these times although once I did and it was low. Also find lying down quickly corrects some periods of fatigue. So im going to persue it further with electrolytes etc.

Isn't another possible cause of OI vascular constriction, which I believe I have, as evidenced by lowered perfusion in spect scans? I passed the tilt test (frustrating),yet suffer classic symptoms. During a recent hospital visit I discovered to my dismay that it was almost impossible to get a needle into my arms, because of small collapsing veins. So perhaps the constriction is not just in the head but body wide? This would explain getting cold feet and hands.

The tilt test doesn't pick up vascular constriction, does it?

 

[maddietod]

SOC, "I did the Simple Test for Orthostatic Intolerance and took the data to my ME/CFS specialist who referred me to a cardiologist. I took my data and the ME/CFS Primer with the relevant areas highlighted to the cardiologist."

I found some information in the primer about OI on page 17. What was useful to your cardiologist?

Do you have any hints about setting this up to do on myself? I can rig standing up with my right arm at heart level. But I can't figure out how to watch a timer (my ipod goes dark) without moving (to reset), or how to activate the cuff without moving.

heapsreal, when I drink salted water my sinuses drain. Makes me think of you.

 

[Sushi]

I did great with Alacer, but it made my teeth too sensitive, so I had to stop it.

How about using a straw? I tend to put a packet in a glass of water, drink it all down fairly quickly, then rinse my mouth.

Sushi

 

[Sushi]

Isn't another possible cause of OI vascular constriction, which I believe I have, as evidenced by lowered perfusion in spect scans? I passed the tilt test (frustrating),yet suffer classic symptoms. During a recent hospital visit I discovered to my dismay that it was almost impossible to get a needle into my arms, because of small collapsing veins. So perhaps the constriction is not just in the head but body wide? This would explain getting cold feet and hands.

The tilt test doesn't pick up vascular constriction, does it?

One of the theories (and there is good evidence for this) is that we have peripheral vasoconstriction and central vasodialation. Hence abdominal binders help some of us. A good interpretation of a TTT should be able to discern whether there is splanchic (abdominal) blood pooling. Mine did anyway.

I have the same problems of small collapsing veins and blood draws. I take some extra nattokinase before a draw, hydrate like mad, wear a jacket even in the summer, turn on the heat in the car, insist on lying down, ask for a heat pack on the vein and sometimes even bring in free weights and pump a bit of iron before a draw. All this makes a big difference for me.

Sushi

 

[perchance dreamer]

You know, I did try using a straw, but it didn't help. It still gets on the teeth. I always rinsed with plain water after drinking the Alacer, but that didn't help, either.

 

[SOC]

SOC, "I did the Simple Test for Orthostatic Intolerance and took the data to my ME/CFS specialist who referred me to a cardiologist. I took my data and the ME/CFS Primer with the relevant areas highlighted to the cardiologist."

I found some information in the primer about OI on page 17. What was useful to your cardiologist?

Do you have any hints about setting this up to do on myself? I can rig standing up with my right arm at heart level. But I can't figure out how to watch a timer (my ipod goes dark) without moving (to reset), or how to activate the cuff without moving.

I stickied and highlighted for my cardiologist Sections 3:5 and 5:8 of the ME/CFS Primer. That's only a few paragraphs and outlines the commonly seen OI problems and describes suggested treatments.

I do NOT advise doing the 30 minute standing test on your own. There is a possibility you will collapse and hurt yourself, even if you don't ordinarily have that problem. Get someone to help you. Your job is to stand ABSOLUTELY still -- no toe wiggling or weight shifting or ANYTHING. Let the other person watch the clock and the BP monitor. Also have them write down your symptoms at different times -- how you feel, any muscle tightening or tingling, dizziness, whatever. I was astonished how difficult it was to stand absolutely still for 30 minutes.

 

[SOC]

I think everyone needs to be aware that increasing salt and electrolyte fluids is not going to be enough for everyone. Certainly it's the first thing to try, but some of us (possibly most of us) still need Florinef and/or other medications before we see substantial improvements.

Somebody (sorry, I can't remember who ) pointed out this very useful article to me recently: Preventing and Treating Orthostatic Hypotension: As Easy as A,B,C It lists many non-pharmacological interventions as well as the useful meds. The is about Orthostatic Hypotension, not Orthostatic Intolerance, so it doesn't cover the whole gamut of OI conditions, but it's still extremely helpful.

A part of this paper that many of us may find particularly helpful is the mention of medications that can cause or aggravate orthostatic hypotension as some of these drugs are used in ME/CFS patients.

 

[heapsreal]

madietodd, after reading more about OI yes i think maybe it has got something to do with sinuses, maybe when my nose drips alot it can get blocked and then an infection occurrs which is why i respond to antibiotics.

Took my bp before i get out of bed and then waiting a couple of mins and did a standing bp, bp didnt change much although its about 10 points lower then later in the day and maybe why i wake up so buggered but my pulse jumped 20 beats when standing.

So this morning i took my electrolyte drink and a sudafed which has phenylephrine in it, see what happens. Researching last night i found that many meds that seem to help me could be helping with OI, tramadol was one of them, maybe works through its noradrenaline effects. Then the sudafed, real sudafed with psuedoephedrine i only use if sinuses play up as its abit too stimulating for me.

I found this link good http://emedicine.medscape.com/article/902155-overview when looking at symptom, boy it looks familiar, like i have mentioned vital signs dont always change when i have checked them but have picked up odd things occassionally but maybe at work etc when i cant check them maybe bp is dropping etc but alot of the symptoms are me for sure.

So will chat abit more about this next time i see my doc.

 

[SOC]

I found this link good http://emedicine.medscape.com/article/902155-overview when looking at symptom, boy it looks familiar, like i have mentioned vital signs dont always change when i have checked them but have picked up odd things occassionally but maybe at work etc when i cant check them maybe bp is dropping etc but alot of the symptoms are me for sure.

Thanks, heaps! That's another good article.

 

[ahimsa]

I found this link good http://emedicine.medscape.com/article/902155-overview when looking at symptom, boy it looks familiar ...

Thanks, heapsreal, for posting the link to that article. That's the one by Dr. Julian Stewart (and others). For those who have not seen it before be sure to click on the tabs on the side to see all the information. For example, this link - http://emedicine.medscape.com/article/902155-overview#aw2aab6b3 - lists the symptoms of what he calls "Chronic Orthostatic Intolerance" at the bottom of the page.

He works at New York Medical College - see http://www.nymc.edu/fhp/centers/syncope/index.htm for lots of information including ongoing research studies. (just something I've found on the web while surfing, no personal experience with the place)

 

[Sasha]

I found this link good http://emedicine.medscape.com/article/902155-overview when looking at symptom, boy it looks familiar, like i have mentioned vital signs dont always change when i have checked them but have picked up odd things occassionally but maybe at work etc when i cant check them maybe bp is dropping etc but alot of the symptoms are me for sure.

I see that in the Treatment section that article recommends raising the foot of the bed, not the head. That's surprising! Every other recommendation I've seen is a head-up tilt.

 

[heapsreal]

I see that in the Treatment section that article recommends raising the foot of the bed, not the head. That's surprising! Every other recommendation I've seen is a head-up tilt.

There seems to be alot of things that seem to contradict different aspects. To me elevating the feet makes sense as it would help with cerebral circulation? ? Another thing that doesnt make sense to me is the use of sedatives in hypotensive circumstances as u would think it would lower blood pressure further. Its just very complicated I think with different sub sets in pots/oi. One thing I read about orthostatic intolerance was that it is a cerebral perfusion issue so this could be either high or low bp and or heart rate or something else causing perfusion issues. Doesn't seem straight forward that's for sure.

Cheers

 

[Sasha]

There seems to be alot of things that seem to contradict different aspects. To me elevating the feet makes sense as it would help with cerebral circulation? ? Another thing that doesnt make sense to me is the use of sedatives in hypotensive circumstances as u would think it would lower blood pressure further. Its just very complicated I think with different sub sets in pots/oi. One thing I read about orthostatic intolerance was that it is a cerebral perfusion issue so this could be either high or low bp and or heart rate or something else causing perfusion issues. Doesn't seem straight forward that's for sure.

Cheers

Heads-up seems counterintuitive but I think it's something to do with tricking the body into retaining water overnight. I think Peter Rowe explained it somewhere.

 

[Sasha]

Heads-up seems counterintuitive but I think it's something to do with tricking the body into retaining water overnight. I think Peter Rowe explained it somewhere.

Here's one paper recommending heads-up bed tilt:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888469/​

Nonpharmacologic interventions should then be considered. They can be tried in any order or combination based on the patient’s convenience or safety. They work by expanding blood volume (taking in extra fluid and salt), decreasing nocturia (raising the head of the bed), decreasing venous pooling (wearing an abdominal binder, performing countermaneuvers, engaging in physical activity), or inducing a pressor response (drinking a bolus of cold water).​

This paper seems to be a study inducing OI in normals through heads-down bed tilt:

http://www.ncbi.nlm.nih.gov/pubmed/11537576

 

[SOC]

Wow, this morning was a real eye-opener!

I took a shower and washed my hair this morning before work. I don't usually shower in the morning because it used to knock me down for hours. But last night I was too tired, so this morning I took a shower. No problems. Did my usual morning stuff and set off for work. Somehow, I was 6 minutes late for work. I'm never late for work!

I got to my tutorees' house and realized at the last second that the driveway was full, so I had to back up to park in front of the house. Somehow, I drove up on the lawn and almost hit a tree! I pulled forward and struggled to park on the street in front of the house.

I went in (late) and discovered I'd left my phone and ipod, both of which I use in class, at home. My students had to correct me a number of times during lessons. "Geez", I'm thinking, "What is wrong with me this morning? I'm flaky as hell, forgetful, not thinking straight and I'm drinking like a fish...... oh."

That's when I remembered that yesterday night I realized that I had only had 2L out of the 3L of electrolyte fluid I usually get each day. Probably why I was tired in the evening. And why my PP was low this morning (although I was too flaky to notice when I did my routine BP/HR measurement). And why I was flaky this morning. I'm a quart low! Not enough blood, so not enough blood to the brain, I suppose.

So, keeping my blood volume up does indeed make a difference for me, not only physically, but cognitively as well.

 

[Sasha]

Wow, this morning was a real eye-opener!

I'm glad you missed the tree!

That's a pretty amazing experience. It hadn't occurred to me to expect next-day effects from electrolytes. I've always dismissed them because I didn't get immediate effects. I will start doing some experimentation!

 

[SOC]

I'm glad you missed the tree!

Me, too! Naturally, the homeowner was sitting out on her front porch at the time. She's never been out on the porch when I arrived.... until today. **sigh**

That's a pretty amazing experience. It hadn't occurred to me to expect next-day effects from electrolytes. I've always dismissed them because I didn't get immediate effects. I will start doing some experimentation!

In my experience -- I don't know if this is common -- it's not easy or fast to get my blood volume up. It's not a matter of drinking a lot of fluid and I feel better in 20 mins. It's as if my body only keeps a tiny percentage of what I drink in my blood, so if I get behind it's really hard to get back to a normal blood volume. Maybe I need more Florinef...?

 

[Little Bluestem]

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.)