OI symptoms and treatment

[SOC]

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.

So it sounds like the saliva test shows up first, which is good. I'll have to see if I can train myself to recognize saliva density.

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?

Narrow pulse pressure is a sign of low blood volume. PP less than 25 is considered dangerously low, I believe. If water loading helps, but doesn't hold, you should look into whether you have low aldosterone. That is what Florinef replaces. Without the right amount of aldosterone, you can drink a lot, but you pee it all out. It doesn't stay in your blood.

BP varies depending on time of day and your activities, so I'm not sure how much is gained by taking it at different times. Ideally, you should not take in caffeine or exercise 30 minutes before taking the measurement if you want baseline values to compare.

If you haven't already done it, consider doing the Simple Test for Orthostatic Intolerance. Do NOT try this on your own. Have someone with you to take the readings and catch you in case you collapse. Remember to stand absolutely still during the test -- no wiggling anything. Make sure your assistant writes down symptoms, too. You can take the data from that test to your cardiologist to show BP and HR abnormalities with prolonged standing.

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..

Drat. Looks like you need a new meter. Yours is either erratic, or reading too low in which case you may have hypertension that needs to be dealt with. You might have orthostatic diastolic hypertension (see the link above) which is a form of OI.

It's all kind of complicated and confusing (to me, anyway), but worth figuring out because treatment can often help us function better.

 

[maddietod]

Well, this is my third BP monitor. Now I remember why I tried this a year ago and gave up then. I just did hours of research, and so far every monitor gets a lot of false-reading reviews.

I'll have my doctor take my BP on Tuesday and I'll see what that looks like. I think my diastolic pressure always runs high; if so, that's something to talk about.

 

[ahimsa]

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.

Yes, this is a big problem for me, too. This seemed like a very strange symptom before I had my OI/NMH diagnosis (my initial diagnosis was Neurally Mediated Hypotension but after 20+ years I may have POTS as well). Before my diagnosis I had all these symptoms that seemed completely unrelated. After the diagnosis many of them could be explained as some kind of problem related to autonomic dysfunction.

Like you, I have lots more energy on an empty stomach. And it would be a disaster to take a shower right after eating. I usually rest in the recliner with my feet raised.

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.

I think the reason people with OI have problems after eating is usually due to splanchnic pooling, blood pooling in the abdomen. This page lists a bunch of different mechanisms that contribute to POTS -- http://www.dinet.org/what_are_the_mechanisms_of_POTS.htm (scroll down to see splanchnic pooling)

 

[ahimsa]

SOC has started a great conversation here about how common and how hidden OI is. I'd like a place for us to share our symptoms and what we do about them. I'm hoping for lots of trial and -error and -success stories.

Like many on this forum, I've been sick for many years (my illness started in 1990) so I don't remember a lot of the treatments that I've tried over the years. But I can share what I'm doing now. I hope that's the kind of information you were looking for!

I take three prescriptions - midodrine (vasoconstrictor), fludrocortisone (mineralocorticoid), and Klor-con (time released potassium). I also take 5-6 salt tablets (Bio-salt brand, taken with meals) and drink at least 3 liters water daily (spread through the day), or 2 liters water and 1 liter electrolyte mixture. For information on drugs and other options see -- http://www.dinet.org/what_helps.htm

There are loads of different options for electrolyte drinks, everything from Pedialyte (I recommend the unflavored, uncolored version - and there's a generic sold by Walgreens that's cheaper) to Nuun tablets to simply adding salt to plain water. Lately I've been using this mixture (found this recipe online and then removed sucrose and added a small amount of glucose):

3/8 tsp salt (sodium chloride)
1/4 tsp salt substitute (potassium chloride)
1/2 tsp baking soda (sodium bicarbonate)
2 tbsp dextrose (aka, glucose)
add water to make one liter
optional - juice of 1/2 lemon or lime

contains 70 mEq of sodium and 20 mEq of potassium per liter

I avoid the heat (anything over 74-75 degrees F is "too hot"). Even cooler temps are needed if I'm going to be walking around whether it's doing errands outside or doing household tasks at home. I always do much better in winter. I think summer would be fine if I set my air conditioner thermostat to 60 (OMG!) but I could never bear to be such an energy hog. In the winter, though, I'm quite the model of energy saving, turning the thermostat really low at night.

What helps a lot is being careful to pace myself. Scheduling rest days is essential (resting a bit *before* I crash rather than trying to catch up after a crash). I use my sleep quality to figure out when I am slowly starting to do too much. When my sleep quality starts getting really bad (waking up 10-12 times a night) then I cut back activities, schedule more rest days, etc.

I briefly tried a heart rate monitor but the alarm was too annoying even to wear inside the house. If it would go off *once* to alert me that I had gone over my target heart rate, and then stop for a while, that would be okay. But the continuous alarm for as long as the heart rate is above the target was too irritating for me. I can see how this mode makes sense for someone normal doing exercise. They just slacken their pace at jogging/biking/etc and their heart rate quickly drops back into the target zone. It took a very long for my heart rate to drop so I did not need or want a continual alarm. I wanted an intermittent alarm.

My other problem with the heart rate monitor is that I really did not know where I should set the limit for the alarm. I have no data from any exercise test so it was a complete guess. It was interesting to find out certain things (standing at the sink to wash my hands made my heart rate go much higher than I ever imagined!) but I would need more help to use that tool effectively.

I have tried compression stockings (knee high, never tried thigh high) off and on. They are worse than helpful in the summer since they are too hot for me. In the winter they help sometimes but not enough for me to have noticed a huge difference. I've never tried an abdominal binder.

That's all I can think of for right now. If I think of more I'll come back and post again.

 

[maddietod]

ahimsa, do I lose anything synergistically important if I leave the glucose out of the electrolyte formula? I use stevia in drinks (to be honest, because I save sugar for when I eat chocolate).

 

[ahimsa]

ahimsa, do I lose anything synergistically important if I leave the glucose out of the electrolyte formula? I use stevia in drinks (to be honest, because I save sugar for when I eat chocolate).

I don't think it's needed but I'm not 100% sure. I posted a question about this a while ago (see http://forums.phoenixrising.me/index.php?threads/the-role-of-sugar-in-electrolyte-solutions.22300/ ) and the folks on that thread seemed to think that it was not needed for our patient group.

The oral rehydration formulas that are recommended by the WHO are meant for patients experiencing dehydration due to diarrhea and vomiting. There is research that shows some form of sugar in the mix is needed so that those patients can absorb enough sodium and potassium in the intestines. But that does not necessarily mean patients with low blood volume problems will need any form of sugar to help them absorb sodium and potassium.

Since sugars don't bother me I left in some glucose (I put in less than what's in Pedialyte-type drinks but not zero). FYI, dextrose/glucose is much less sweet than sucrose. One tablespoon has 15 calories. So my recipe above has about 30 calories per liter as opposed to 100 calories in Pedialyte.

 

[Seven7]

Questions I pee like 10 times before going to bed and wake up to go to the restroom 3 times to pee. I have no clue why my pee is normal at daytime but gets so bad at night, Any advice ideas??? WHat do u drink at night like can you do your sleep pills with electrolytes instead of water??? or would that keep you awake??

 

[Sushi]

You lose fluids and electrolytes at night. You could try sipping if you wake up at night or tanking up before bed though that increases the likelihood of getting up to pee. Or, drinking more concentrated electrolytes (less water) before bed.

Sush

 

[ahimsa]

Questions I pee like 10 times before going to bed and wake up to go to the restroom 3 times to pee. I have no clue why my pee is normal at daytime but gets so bad at night, Any advice ideas??? WHat do u drink at night like can you do your sleep pills with electrolytes instead of water??? or would that keep you awake??

I did not have quite this bad of a problem as you (I used to go 2-3 times during the night) but I did have it somewhat. Then after I started taking fludrocortisone (Florinef) this symptom went away. Even thought I now drink much more liquid during the day I never have go to the bathroom during the night any more. So I think the Florinef must be doing something for me.

I think the other thing that might help this symptom is elevating the head of the bed. I tried that briefly, many years ago. We even had twin beds for a while so my husband would not have to sleep that way. But I never got used to sleeping in that position. I joked that I felt like a Minbari. (Babylon 5 reference, old sci-fi TV show, see - http://www.babylon5scripts.com/Baby...k/Babylon-5-B5-20_White-Star-Minbari-Beds.jpg )

Also, I can't see why drinking an electrolyte mixture of some kind would hurt your sleep. It might be a problem if you drank a huge amount of liquid right before sleeping but I stretch out my 3 liters of liquid through the whole day. I'm generally done drinking liquids at least an hour before I go to bed.

 

[Little Bluestem]

Lately I've been using this mixture (found this recipe online and then removed sucrose and added a small amount of glucose

What do you use as a source of glucose?

 

[ahimsa]

What do you use as a source of glucose?

I bought a bag of NOW brand dextrose (essentiallly another name for glucose) from a local store. But you can also get it online. If you search for dextrose on amazon.com it should be the first thing that comes up ( http://www.amazon.com/Now-Foods-Dextrose-Natural-Sweetener/dp/B008GQ2JPO )

I think this dextrose is made from corn. But I don't know whether there's any actual corn particles/proteins left in that would bother people with corn allergies since it's such a completely processed food. (e.g., do people with beet allergies have problem with sucrose made from sugar beets?) I'm not an expert on this so I have no idea!

I can tell you that the package says "Contains no fructose or lactose." So anyone with fructose absorption problems (even table sugar has some fructose in it) should be okay with this.

 

[heapsreal]

One could probably use salt tablets and a potassium supplement and increase water intake and get the same effects one would with electrolyte drinks???

 

[maddietod]

Electro Mix doesn't have any sodium in it! Mine arrived yesterday, and I'll try that today +just normal food-salting.

 

[Sparrowhawk]

Electro Mix doesn't have any sodium in it! Mine arrived yesterday, and I'll try that today +just normal food-salting.

Let us know how it goes! I just ordered some as well but it won't be here till Tues.
Someone mentioned Beta Blockers above. I took them for a while and initially it did seem to help my tachycardia, but later on I felt like it depressed my entire system. I got to the point where I felt weak as a kitten, almost poisoned, and about to pass out, all the time. Don't know if it was a dose issue or what but I quit them and haven't looked back. In retrospect stopping the behavior that was cuasing the tachycardia was key: I had been doing way too much time in the gym for my age and health (this was before my big collapse). Just something to look at (dosage, beta blocker side effects) if you're on beta blockers but still seem to be having issues.

 

[heapsreal]

i think that it is probably going to be a combination with something like electrolyte drinks the first step then its experimental which drugs can help i guess.

Im playing around with cholinergic supps and racetams similar to piracetam which help brain perfusion and i guess probably stimulant effects that cause vasoconstriction? I have used them before with some success but i think now with the electrolyte drinking helping increase blood volume im getting more out of them??

 

[maddietod]

I bought another BP meter, and the cuff is different. My readings so far are absolutely normal. I'm salting my food pretty heavily, and I'm drinking 2 liters of fluid a day, and I'm just going to leave it at that.

 

[SOC]

I bought another BP meter, and the cuff is different. My readings so far are absolutely normal. I'm salting my food pretty heavily, and I'm drinking 2 liters of fluid a day, and I'm just going to leave it at that.

That's good news! I glad to hear your OI is easily managed without extraordinary measures.

 

[PNR2008]

Last week went to ER twice because of severe OI symptoms, weakness, dizziness, pre-syncope and paleness, heavy feeling in chest, heavy sinking feeling in bed. As soon as I was given saline, I pinked up and was able to talk easier, oxygen helped too but the improvements didn't last so about 5 days later was admitted for 2 days of observation. This was the Cleveland Clinic and I must say they are very thorough when it's conditions of the heart. I was put on florinef but can't seem to tolerate it, increase in pain and muscle weakness, can't get out of bed. I am scheduled for stress test and getting in to their syncope clinic. So hope for the best but I have no idea what caused this downward spiral. I have been feeling especially weak for months but these two episodes of IO were devastating. Heart attack ruled out. Many tests and the consenses is still OI but what a wild ride and it doesn't seem over yet.

 

[Sparrowhawk]

Hang in there PNR2008, that sounds scary and the experiences themselves exhausting -- and that's before you get into the whole spiral of uncertainty around the future. Keep breathing. Sending strength and do let us know what may be learned as you continue to explore the causes.

I'll be doing a 24 hr holter monitor soon because my insurance won't cover the longer term one. My luck with these has been that, just like taking the car to the mechanic, my heart tends to behave itself when I try to capture the weirdness.I don't want to hope for dysfunction that they can capture, but I do wish we could learn more about what's going on with these weird beats, AFIB or whatever.

 

[Sushi]

Last week went to ER twice because of severe OI symptoms, weakness, dizziness, pre-syncope and paleness, heavy feeling in chest, heavy sinking feeling in bed. As soon as I was given saline, I pinked up and was able to talk easier, oxygen helped too but the improvements didn't last so about 5 days later was admitted for 2 days of observation. This was the Cleveland Clinic and I must say they are very thorough when it's conditions of the heart. I was put on florinef but can't seem to tolerate it, increase in pain and muscle weakness, can't get out of bed. I am scheduled for stress test and getting in to their syncope clinic. So hope for the best but I have no idea what caused this downward spiral. I have been feeling especially weak for months but these two episodes of IO were devastating. Heart attack ruled out. Many tests and the consenses is still OI but what a wild ride and it doesn't seem over yet.

Some people get regular twice weekly or more infusions of 2 liters of saline to help with these symptoms. They are not a cure, but do help life quality until you find something better.

I did find meds that pretty much took away my OI (though also not a cure). Florinef didn't work for me either. It is often a tedious process of trying different likely drugs until you find a combination that works. My autonomic specialist found that very low doses of several meds worked better than a "normal" dose of just one.

Best wishes with this,
Sushi