I don't have OI -- Wrong!

[SOC]

Sasha, here's a new thread to discuss OI in those of us that don't have the obvious, classic OI symptoms.

I was one of those people who thought I didn't have OI because I don't get dizzy when I stand up, or pass out. I don't have low blood pressure. Surely I don't have OI! Wrong.

I have OI, thought to be primarily the result of low blood volume. What's causing the low blood volume? That's still a mystery. Nevertheless, treating low blood volume has substantially improved my ability to function. Things that used to be difficult -- showering, hanging laundry, unloading the dishwasher, climbing stairs -- are no longer a problem. I didn't realize before that those problems could be the result of OI.

These two sources of information have helped me:
This article, Treating Orthostatic Intolerance in Chronic Fatigue Syndrome (ME/CFS) and The ME/CFS Primer for Clinical Practitioners.

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. He had seen my daughter first, and not believing a healthy looking 21 year old who is not repeatedly passing out could have dysautonomia, he ordered a TTT for her. Her results were sufficiently disturbing that he now takes ME/CFS seriously. He did not have any prior knowledge (ie, negative bias) about ME/CFS, so that was easier than it might have been. He didn't make me do a TTT. He accepted the data I took at home and the information in the ME/CFS Primer.

Dr Rey manages my OI treatment with the cardiologist as backup.

My daughter's treatment plan is fairly typical, I think. She takes 0.1mg of Florinef and tries take in extra salt and water. She is still somewhat tachycardic, but the docs are reluctant to use meds to slow her heart rate given her age. She could manage her OI better, but it's not causing her any big problems, so she doesn't want to bother.

My treatment is on the more extreme end. I take 0.25mg of Florinef, 120mg of verapamil (for tachycardia), 3L (or more) of electrolyte fluid daily. I need to fluid load to compensate for overnight blood volume depletion. I drink 600ml of iced electrolyte water immediately before bed, and another 600ml before I get out of bed in the morning. I stay in bed about 45 mins for my BP and HR to stabilize, but after that I actually feel energetic. I drink another 600ml bolus 6-7 hours after the morning one. The rest of the 3L of fluid I drink over the course of the day. I'm not going to run any marathons, but I'm not tired and can do a lot of small things I couldn't do before OI treatment. It's not a cure for ME/CFS, but treatment could improve quality of life -- something we could all use.

I wonder how many other PWME there are, like me, who are significantly impaired by OI but don't realize it.

 

[alex3619]

I had masked OI for a long time, as I have high blood pressure and this hides it. Eventually though I started passing out on stairs or standing, which is a big clue, and had a TTT.

I do wonder how much of this is due to low blood volume. Its possible to test that directly. I drink all the time, but its not electrolyte water.

 

[heapsreal]

drink like a fish and pee like a race horse is a saying used for many cfs/me which i think is relevant to the pots/oi. I drink alot of fluid so im alot like the fish and the race horse. So im probably compensating for it by drinking alot. I should measure how much i drink??

 

[SOC]

drink like a fish and pee like a race horse is a saying used for many cfs/me which i think is relevant to the pots/oi. I drink alot of fluid so im alot like the fish and the race horse. So im probably compensating for it by drinking alot. I should measure how much i drink??

I was told that a rule of thumb is if you are drinking 2 L or more of fluid daily, you are likely to have an OI or DI (diabetes insipidus) problem.

 

[SOC]

I
I do wonder how much of this is due to low blood volume. Its possible to test that directly. I drink all the time, but its not electrolyte water.

My cardiologist said if you're drinking a lot to compensate for low blood volume (consciously or unconsciously), you need to drink electrolyte water because you're flushing out electrolytes. In fact, he said drinking only water to compensate is as bad as not drinking more at all. I think he may have been using a bit of hyperbole there, though.

 

[heapsreal]

is there any no sugar electrolyte drink anyone can recommend??

 

[heapsreal]

are electrolyte tablets an option??

 

[Sushi]

is there any no sugar electrolyte drink anyone can recommend??

Alacer Electro Mix. The one I have doesn't have sugar.

Sushi

 

[alex3619]

My cardiologist said if you're drinking a lot to compensate for low blood volume (consciously or unconsciously), you need to drink electrolyte water because you're flushing out electrolytes. In fact, he said drinking only water to compensate is as bad as not drinking more at all. I think he may have been using a bit of hyperbole there, though.

I often wonder if this is why so many of us wind up taking potassium when on methylation protocols, though I also think we might be using it more like a drug than otherwise. Many of us appear to be low in potassium, about half. This is about the same percentage who have obvious OI. I wonder if the two are related?

I do consume a fair amount of salt despite my high blood pressure. This is not a balanced way to do it though. Getting my minerals in balance is a goal for next year however: this year is already full up with stuff I need to do.

 

[SOC]

Alacer Electro Mix. The one I have doesn't have sugar.

Sushi

That's the one I use. It was suggested to me by Dr Sol when I said I can't stand the sugary bottled electrolyte drinks.

 

[*GG*]

Alacer Electro Mix. The one I have doesn't have sugar.

Sushi

Lemon-Lime flavor, 1 packet for 1 Liter of water, 30 packets/box which you can get for under $7 online.

GG

 

[heapsreal]

I just found one in Australia called hydralyte which is a soluble tablet. Minute amount of glucose im going to give a try. Something I can pop in a bottle of water.

 

[SOC]

I
I do consume a fair amount of salt despite my high blood pressure. This is not a balanced way to do it though. Getting my minerals in balance is a goal for next year however: this year is already full up with stuff I need to do.

I consumed a lot of salt despite highish (pre-hypertension) BP, too. My BP has actually dropped with OI treatment, which my cardiologist, at least, wasn't expecting. He thought Florinef and extra fluids would raise my BP, and wanted me to keep a close eye on it. Now my BP is much more stable and in the low normal range.

 

[ahimsa]

is there any no sugar electrolyte drink anyone can recommend??

The cheapest solution is to mix up something at home if you don't mind the extra work. It's just a matter of getting some potassium chloride (powdered salt substitute seems to work for this) and then figuring out what ratio works for you.

Recently I've tried mixing up my own solution a few times. There are several recipes online that try to match the World Health Organizations ORS (Oral Rehydration Solution) -- see http://apps.who.int/medicinedocs/en/d/Js4950e/2.4.html#Js4950e.2.4 for the recommended amounts of sodium/potassium per liter of water. That's what I would start with.

I should mention that most online recipes contain sucrose, glucose (aka, dextrose), or fructose. Adding some type of sugar changes the way it works in the intestines and helps the body absorb the sodium and potassium. But these recipes are meant for people who are dehydrated due to vomiting or serious diarrhea.

I posted a question about this a while back and most folks on the forum thought that folks with OI due to low blood volume probably don't need any glucose or sucrose. I've left it in when I mixed my own but you could simply leave it out entirely. I also added some lemon or lime juice for taste.

 

[Sasha]

Thanks, SOC - that's great info (as always!).

I did that simple 30 minute OI test at home, which confirmed my early suspicions that I had OI. I took the results to my GP and we did the test again in his office, and confirmed the results. He sent me to a cardiologist, who hadn't heard of testing for 30 minutes and refused to do a 30 minute test and said that I didn't have OI. I asked my GP recently to retest me and to send my results to a specialist OI clinic - they also said I didn't have OI. I don't know what critieria they're using but according to the published criteria I do have it and my GP agrees.

I've tried electrolytes and boluses of water with no effect. The next step would be drugs but so far I've been reluctant to try them for fear of masking improvement from all sorts of other things I've been trying for my ME (and hence indirectly, my OI). I'm about to try another thing so again I'll stay off the OI drugs but sooner or later I think I'm going to have to go that route...

 

[Little Bluestem]

kurt developed a rehydration formula specifically for chronic blood volume issues. It is a little more time consuming to make up than standard ones, so I have not tried it. I think it would be worth trying before going on drugs. Maybe he will see this and post.

 

[Thinktank]

This makes me think if i have some form of IO. I will do the hometest as mentioned by Sasha.

When i eat a big load of salty food like a bag of chips or salted popcorn i usually feel a lot better the next day.
That also remembers me that when i was really into fitness years ago i used an electrolyte drink called scivation xtend and i made the best gains ever, i drank it like 4 times a day. It also has other stuff in it like BCAA's but that wasn't what was making me grow and feel better because i was using BCAA's for years as much higher dosages.
People were commenting all the time that i was looking so much "healthier".

This is my latest lab result for electrolytes:

Sodium 142 / lab range = 135 - 150
Potassium 4.1 / lab range = 3.5 - 5.5
Chloride 99 lab range = 95 - 110
Total CO2 (bicarb) = 26 lab range = 22 - 30

Pretty normal i guess..... Can you have IO with normal electrolytes in blood?

I've had normal blood pressure (seated) the last 30 times i visited the hospital.

Are there any other blood or urine tests that might show IO / POTS? I've done lots of chemistry tests so just to check if something is off...

I'm total new to IO / POTS and related disorders so please bear with me.

Symptoms i have that might relate:
- Very dizzy / light headed when standing up too quickly after seating for a while, this takes a few seconds
- Bad posture
- Waking up in the middle of the night being air hungry like i'm not getting enough oxygen to my brain (can be sleep apnea as well).
- Disorientation when walking
- Always cross my legs, like really curled up when seated or putting one feet above the other, this happens automatic.
- I drink a lot of water, way more than 2L daily.

 

[Mij]

I'm still trying to figure out whether I have OI or Neurally Mediated Hypotension. I do tend to feel better with a higher salt intake. I like to add himalayan salt to warm water with a squeeze of lemon in the morning.

 

[heapsreal]

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.

 

[heapsreal]

i just finished work and dont feel too bad, normally i would have a cracker of a headache. I had a headache before i went to work too. I bought the soluble hydrolyte tablets and 2 is recommended in 200ml of water. I just started off with 1 tablet and i didnt notice anything, actually i think my cognitive stuff plus headaches was getting worse so i put 2 tablets iin about 700ml bottle of water and drank it over about 2 hours. I dont know if its placebo or not but my headaches definately eased and cognition improved.

I struggle to understand the concept of orthostatic intolerence, i understand the hypotenisve and tachycardic issues but the OI with out alot of obvious vital sign changes im struggle to understand, maybe its just easy to say its a brain perfusion thing??

Im going to trial the electrolyte drinks, 1 in the morning when i wake up and another later in the day or if at work make another big drink bottle up and sip on it through my shift. If it gets rid of the headaches it will be a good thing, even just best hydration helps headaches too.

Thanks for starting this thread SOC
cheers!!