OI symptoms and treatment

[Sparrowhawk]

What a great group of folks here--so appreciate the comparing of notes. OI is completely weird for me today, can't tell if I took too much salt or what. My knees are cold -- like the circulation isn't getting there.

More water...

 

[maddietod]

Hahahahahaha. That's 7 cups of fluid extra??? No way. I drink that amount in a day, when I'm being good. And if I drink after about 6pm I'm up peeing all night. So, hmmm.

I think this is another individual variation. I think you need more fluids than I do. I'm going to try drinking 600mls in the morning, and I'll add electrolytes to that when they arrive......I've got electrolyte pills I can take in the meantime. I'm successfully drinking 2L of various fluids a day, and my current 'test' is (a) will I stop peeing so much as I add electrolytes and/or salt, and (b) will these changes increase energy and cognitive function.

If I can persuade myself to take my blood pressure, I'll also be watching for changes there, and if that relates to cognitive changes.

That's the plan. I'll see what actually happens .

 

[taniaaust1]

Has anybody tried abdominal compression?

my skin is STILL trying to recover from a week or two ago of wearing an abdominal compression garment (Ive worn it one day a week for about 8hrs for past few weeks) ... I just took a photo to show how my skin is looking right now due to the garment last worn on Saturday (and then once the week before that). That horizontal scar looking line is from a half a finger length sized blister 2 weeks ago from the garment. My skin is more sensitive then most, Ive got blisters at times from my compression stockings too esp in summer when I sweat. As Im not even wearing the recommended compression for POTS and having this going on, its looking like I'll need to have my medical compression stockings specially made (I do currently have them properly fitted but have the issue with those).

I STILL got severe POTS while wearing the compression garment and lasted only two hours at a party where i was mostly just sitting before I had to leave the party area and go and lay down due to the POTS (and flare up of ME viral reactivation cough).

anyway.. here's what my skin is currently looking like due to that compression garment (note there isnt even a seam running in the area which blistered from it).

 

[SOC]

Hahahahahaha. That's 7 cups of fluid extra??? No way. I drink that amount in a day, when I'm being good. And if I drink after about 6pm I'm up peeing all night. So, hmmm.

I think this is another individual variation. I think you need more fluids than I do. I'm going to try drinking 600mls in the morning, and I'll add electrolytes to that when they arrive......I've got electrolyte pills I can take in the meantime. I'm successfully drinking 2L of various fluids a day, and my current 'test' is (a) will I stop peeing so much as I add electrolytes and/or salt, and (b) will these changes increase energy and cognitive function.

If I can persuade myself to take my blood pressure, I'll also be watching for changes there, and if that relates to cognitive changes.

That's the plan. I'll see what actually happens .

The "normal" fluid intake for an adult is 2L, so you should be getting at least that much. If you are peeing more than you are taking in, your body is in trouble.

Undoubtedly it is one of those individual things. There's no way I'd get through the night, or out of bed in the morning, if I quit drinking at 6pm.

 

[heapsreal]

i think i have been self medicating pepsi max for my OI, not only fluid replacement but probably the vasoconstriction effects of caffeine. The urge to drink it has reduced since i have been drinking electrolytes.
i probably drink a few litres of fluid a day in total but then most of it goes stright through me.
i think its the peeing thats the issue, maybe some type of diabetes insipidus. im going to ask my doc about it and get ADH tested.

 

[bel canto]

People don't talk much about this, but I find that eating is a big problem for me. Even with a low-dose beta-blocker, I have significant POTS symptoms for hours after a meal. Eating smaller amounts helps, but then of course it's more frequent.
With an empty stomach, I am much more able to walk, wash dishes, stand, take a shower, etc. I've always thought that blood being diverted to the GI system was the explanation for the difference in symptoms, but would love to know what the basic underlying cause of my POTS is. Sounds like there are multiple possibilities for underlying reasons.

 

[rosie26]

Sure is lots of peeing going on in this thread, you are all reminding me I should be drinking a heck of a lot more than I am. And peeing a lot more.

 

[SOC]

Sure is lots of peeing going on in this thread, you are all reminding me I should be drinking a heck of a lot more than I am. And peeing a lot more.

Stay hydrated, my friend!

 

[Little Bluestem]

Several years ago I decided that I was going to drink 8 glasses of water/day. The more I drank, the worse I felt. I got to where drinking water almost made me gag. I was peeing constantly. Almost as soon as I finished drinking, I as heading for the bathroom.

I learned that when you pee, at least if you have adrenal problems, you pee out sodium. When your sodium is reduced, your body reduces your blood volume to maintain the correct %Na in your blood.

Be careful to get enough electrolytes with your fluids.

 

[Little Bluestem]

Will someone give me the 'For Dummies' version of what are Orthostatic Intolerance, Orthostic Hypotension, and Postural Orthostatic Tachycardia Syndrome and how do they differ?

 

[maddietod]

The "normal" fluid intake for an adult is 2L, so you should be getting at least that much. If you are peeing more than you are taking in, your body is in trouble.
Undoubtedly it is one of those individual things. There's no way I'd get through the night, or out of bed in the morning, if I quit drinking at 6pm.

I ran some searches about this 'drink 8 cups of water a day' mandate, and it seems to be an urban myth. Meaning, not based on research but so widely disseminated that everybody thinks it's real.

I pee out about 6 cups a day. I've never measured input and output on the same day, but this amount feels pretty normal. It's just the frequency that's bothersome. The frequency increases dramatically when I drink cocoa, coffee, or tea (white, green, black), decaf or regular. I don't drink soda.

I can tell how hydrated I am from the density of saliva under my tongue.

 

[SOC]

I ran some searches about this 'drink 8 cups of water a day' mandate, and it seems to be an urban myth. Meaning, not based on research but so widely disseminated that everybody thinks it's real.

I pee out about 6 cups a day. I've never measured input and output on the same day, but this amount feels pretty normal. It's just the frequency that's bothersome. The frequency increases dramatically when I drink cocoa, coffee, or tea (white, green, black), decaf or regular. I don't drink soda.

I can tell how hydrated I am from the density of saliva under my tongue.

Indeed, "normal" probably has a wide range rather than a specific value. 2L can't be the best for everyone. Frequent urination aggravated by caffeine is often a bladder issue (irritable bladder?) that might be treatable if it's annoying.

That density of saliva under the tongue thing is useful. I can't even sense the saliva under my tongue, much less gauge the density. Wish I could -- it would be an easy way to evaluated hydration.

 

[Sparrowhawk]

Hey SOC I was looking at the electrolyte mix you use, http://www.iherb.com/Alacer-ElectroMix-Lemon-Lime-30-Packets-4-2-oz-120-g/17246
was wondering if you think it might be an issue for someone with severe reactive hypoglycemia. It seems to say there's no sugar content, but I've bought things before that say that and they consider 2g sugar per serving immaterial. Unfortunately that's enough to completely mess me up. Stevia has apparently done the same for some folks with my issue -- like the body is fooled by the sweet taste into thinking sugar is coming, so it makes too much insulin anyway.

Along the same lines, how do you know (or is it just going by how you feel) that you're not for instance getting too much of any particular electrolyte? I know I was low on magnesium, and once I started using that topically, things worked better. I've tested too high for potassium and to low for sodium (hair test) so I don't want to jack up potassium levels too far out of whack with sodium. Thanks for any thoughts on this as I would really love to

I felt the best I have in 20 months the day of my 'scoping procedure, where I'd been drinking their electrolyte laden diuretic for hours the entire night before. One aspect of that is being cleaned out, the other is that I probably had better electrolyte balance in my bloodstream than I'd had in a while.

 

[maddietod]

That density of saliva under the tongue thing is useful. I can't even sense the saliva under my tongue, much less gauge the density. Wish I could -- it would be an easy way to evaluated hydration.

I can suck it to the front and then up onto my tongue. If it's watery, I'm fine. If it's gluey, I need to drink more.

 

[SOC]

Hey SOC I was looking at the electrolyte mix you use, http://www.iherb.com/Alacer-ElectroMix-Lemon-Lime-30-Packets-4-2-oz-120-g/17246
was wondering if you think it might be an issue for someone with severe reactive hypoglycemia. It seems to say there's no sugar content, but I've bought things before that say that and they consider 2g sugar per serving immaterial. Unfortunately that's enough to completely mess me up. Stevia has apparently done the same for some folks with my issue -- like the body is fooled by the sweet taste into thinking sugar is coming, so it makes too much insulin anyway.

Along the same lines, how do you know (or is it just going by how you feel) that you're not for instance getting too much of any particular electrolyte? I know I was low on magnesium, and once I started using that topically, things worked better. I've tested too high for potassium and to low for sodium (hair test) so I don't want to jack up potassium levels too far out of whack with sodium. Thanks for any thoughts on this as I would really love to

I felt the best I have in 20 months the day of my 'scoping procedure, where I'd been drinking their electrolyte laden diuretic for hours the entire night before. One aspect of that is being cleaned out, the other is that I probably had better electrolyte balance in my bloodstream than I'd had in a while.

I know nothing about reactive hypoglycemia, so I don't think I can help much. I can tell you that ElectroMix is not at all sweet. I would have said it's not sweetened at all, but obviously it has some stevia. I'd be surprised if it would generate a sweet response, but who knows?

As for balance of electrolytes, I've been watching my blood sodium, potassium, etc since I've been drinking the ElectroMix. All have stayed nicely in range. My sodium was at the low end of normal and is increasing, but that's probably from the Florinef. My calcium is dropping, but I'm that age and ElectroMix doesn't have enough calcium for me. Like most women my age, I have to supplement calcium.

As I understand it, ElectroMix is supposed to have the right balance of sodium and potassium, so if you're already low in sodium, you might want to supplement that in addition to ElectroMix to get a better balance. I don't think it would make the the imbalance worse. You probably want to keep an eye on it, though. The Basic Metabolic Panel your GP would ordinarily do for your annual physical should work fine for that.

 

[SOC]

I can suck it to the front and then up onto my tongue. If it's watery, I'm fine. If it's gluey, I need to drink more.

Does that test correspond to the nail blanch (capillary refill) test? In other words, if you have gluey saliva, do you also fail the nail blanch test? Or does one show up sooner than the other? It would be nice to have a test that shows low fluids before we get to the point of dehydration.

 

[maddietod]

Does that test correspond to the nail blanch (capillary refill) test? In other words, if you have gluey saliva, do you also fail the nail blanch test? Or does one show up sooner than the other? It would be nice to have a test that shows low fluids before we get to the point of dehydration.

I don't think so. I just tested my nails after getting up but not drinking yet, saliva somewhat thick, and I turned pink immediately.

 

[maddietod]

I did the water-in-bed for an hour 1st am yesterday, and blood pressure after sitting up for 5 minutes with my feet on the floor was 116/80 (73). I tracked BP through the day: 115/97, (75); 101/82, (90); 114/98, (86). So the water-loading kept systolic pressure up except for after a 1 hour lying down meditation. But diastolic jumped up 17 points after 45 minutes.

This morning I got right up, wandered around for a few minutes, sat for a few minutes: 119/104. Then I drank 3 cups of cold cat's claw tea + water, and waited an hour while doing standing activities. Sitting BP was then 94/69 (75). Checked in 3 minutes because that was just too strange, 101/82 (82).

What I see is that my diastolic pressure is always high (>80) and is usually in the high blood pressure range. Even if it was 80, my pulse pressure is very narrow. Water loading am+ bed (without electrolytes - they haven't arrived) or salt helps enormously, but doesn't hold.

I see my doctor on Tuesday and will ask him to recommend a cardiologist. Are there any other self tests I should do before that cardio appointment?

 

[Sparrowhawk]

I know nothing about reactive hypoglycemia, so I don't think I can help much. I can tell you that ElectroMix is not at all sweet. I would have said it's not sweetened at all, but obviously it has some stevia. I'd be surprised if it would generate a sweet response, but who knows?

As for balance of electrolytes, I've been watching my blood sodium, potassium, etc since I've been drinking the ElectroMix. All have stayed nicely in range. My sodium was at the low end of normal and is increasing, but that's probably from the Florinef. My calcium is dropping, but I'm that age and ElectroMix doesn't have enough calcium for me. Like most women my age, I have to supplement calcium.

As I understand it, ElectroMix is supposed to have the right balance of sodium and potassium, so if you're already low in sodium, you might want to supplement that in addition to ElectroMix to get a better balance. I don't think it would make the the imbalance worse. You probably want to keep an eye on it, though. The Basic Metabolic Panel your GP would ordinarily do for your annual physical should work fine for that.

OK given all that it sounds like it is worth me ordering some of this and give it a shot. Thanks!

 

[maddietod]

3 of my kids came home for the weekend, and I just tested the BP meter on them. They all test ridiculously low. So..........I can't trust this meter. I don't know what I'll do next, or what to tell my doctor on Tuesday. Grrr.

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