Good foods for emergency snacks

[MeSci]

The Jarrow one says "natural French vanilla flavour". Hopefully that means actual vanilla extract, but you're right, it's a bit vague. Are Jarrow respectable enough to be trusted on this? And are there actual problems with people with ME being harmed by vanilla flavouring?

There is a synthetic vanilla flavour called ethyl vanillin which can have adverse effects, but unless a company was very dishonest or lax with the truth, 'natural vanilla flavour' should mean what it says. I think that ethyl vanillin may sometimes be sometimes just called vanillin, which can also refer to the natural chemical.
Jarrow seems pretty well trusted.

I don't know if natural vanilla is a problem for anyone with ME.

 

[PatJ]

apparently it's normal for it to lower your blood pressure temporarily. There's nothing I can really do during the treatment

Any kind of intense mental activity can increase blood pressure. Maybe you can try some daydreaming or mental mathematical equations while undergoing treatment.

As for getting exhausted if I'm out socialising, if I'm with my partner he knows to keep an eye on me, especially for my lips turning blue.

Lips turning blue sounds like low blood oxygen content. If you ever have the chance it might be useful to check your BP, and blood oxygen (using a pulseoximeter), when your lips are turning blue.

Any tips on what to keep an eye on?

Here is a Wikipedia list of hypoglycemia symptoms. I can usually tell my blood sugar is gradually descending about 20 minutes before it goes into a sudden drop. I start to feel less energetic, and my thinking clarity diminishes. Once the drop hits I can feel nauseous, dizzy, shaky (an internal kind of tremor), confused, and warm. Eating a few minutes before the drop keeps me from feeling miserable. I used to become very irritable when needing to eat but that has disappeared since I've learned to head off the blood sugar drop before it hits.

Sometimes the cat bosses me back to bed when I really need to lie down, but not reliably!

Sometimes I'll feel a bit light-headed and have a snack, say some almonds, and notice that I get a head rush as soon as I bite into them. That means I've got more exhausted than I realised. Does anyone else get that odd head rush?

Do you have OI or low blood pressure? A head rush from biting something hard like an almond might come from a blood pressure change. Your cat herding you into bed, and your mention of being exhausted and experiencing a head rush when biting an almond when feeling so tired makes me wonder about your blood pressure level at those times.

It tends to be different when I'm out, I'm usually more exhausted and don't have the option of immediately crawling into bed with the heated blanket.

Numbness/coldness in the extremities can be a sign of low blood sugar. Although it's also a sign of poor blood flow. I get this from having low blood pressure.

Many of the points you've mentioned make this sound like your blood pressure is dropping when you become hypoglycemic.

 

[Calathea]

This is one of the reasons why I got the doctor to check me for diabetes. At least we know I don't have that, but I do wonder about hypoglycaemia. Should I get a home testing kit or something? I have a support worker with diabetes, she could probably help me with that.

I've got dysautonomia and am on ivabradine plus 3 litres fluids and a lot of salt a day for it. I know I'm really tired when I keep salting a meal as I eat it. I put 1/2 tsp salt (it's a mix of sea salt and low-sodium salt, so there's a bit of potassium in there too) in my 800ml/27oz water bottle, and some days I can't even taste the salt in there.

Yes, I know that it is not normal for lips to turn blue! I couldn't get the GP to take it seriously, though. She kept telling me it was because I was underweight. This is a myth dreamt up by a previous GP who met me when I was overweight and was so stunned to see me at my usual healthy weight, at home in a dimly lit corridor, that she decided I was underweight based purely on that. Eventually the GP doing this consultation popped me on the scales and measured me, figured out my BMI and that I was borderline overweight, and shut up about my weight, but she did not suggest anything about the blue lips. Eventually I got them to put me on iron for the Restless Leg Syndrome, I must have been anaemic for years due to being on mast cell meds which disrupt my stomach acid, and that's helped a certain amount. To be honest, it's useful having lips that turn blue when I'm exhausted, it's a nice clear sign that I need to get home and into bed. I do wish doctors wouldn't do the thing of writing off symptoms in folks who have ME.

Yes, my extremities always tend to be cold, and I generally run cold, though with exciting temperature fluctuations. By this time of year (in Scotland) I'm wearing fleece fingerless gloves and two pairs of thick socks.

Yep, my blood pressure runs low as well. I'm used to hearing the following when doctors take my BP, and I think my blood pressure is higher when they're there due to stress so I dread to think what they'd have made of my home readings (72/40 was the lowest I caught, not that I've bothered monitoring this for a while now):

"Goodness, that can't be right."
"Well, aren't you lucky not to have high blood pressure!"
"You know, there's no such thing as having blood pressure that's too low."

The cardiologist I saw for the dysautonomia was crap, I'm lucky I got put on the ivabradine. But that affects heart rate more than blood pressure. Getting enough salt helps the blood pressure, right? I've just started on licorice capsules, I want to see if those help.

 

[PatJ]

...but I do wonder about hypoglycaemia. Should I get a home testing kit or something?

A blood glucose monitor might give you some idea of your blood sugar at a particular moment, but they aren't very accurate. I got a glucose monitor and it confirmed what my symptoms were telling me, so it was useful to rule out other causes. Sometimes the reading can vary a lot, which I found out when trying 3 different tests on the blood from a single jab. So if your symptoms are saying low blood sugar, but the meter doesn't agree, then trust your symptoms.

There's something called a glucose tolerance test done in a hospital but it can be very hard on a body, and can easily miss low blood sugar due to the way the testing is done.

You may want to rely on symptoms, really getting a feel for them and confirming that they go away after eating. It took me a month to fully appreciate the various sensations I was having that were directly related to hypoglycemia. Some I only figured out after I had been preventing low blood sugar by pre-empting the crashes. I realized that I didn't have x,y,z feelings any more and realized their link to the previous low blood sugar episodes. Irritability was one that disappeared for the most part, although it can also be caused by low blood pressure, even if the blood sugar is ok.

"Well, aren't you lucky not to have high blood pressure!"
"You know, there's no such thing as having blood pressure that's too low."

Did these doctor's actually have degrees on the wall? Yikes.

Getting enough salt helps the blood pressure, right?

Salt should help, but for me, electrolytes + salt + extra potassium help even more. I tried a DIY electrolyte mix for a few weeks but it didn't help nearly as much as Ultima electrolyte powder.

 

[Calathea]

Oh yes, I'm getting potassium in my salty water, as I mentioned, and I have a few Nuun drinks a day, plus I take mineral supplements in capsule form. That looks like a nice one, although surprisingly low in sodium.

 

[brenda]

Do you have any proof for the rice thing? Everything I'm finding online says the scare was unfounded.

The Jarrow one says "natural French vanilla flavour". Hopefully that means actual vanilla extract, but you're right, it's a bit vague. Are Jarrow respectable enough to be trusted on this? And are there actual problems with people with ME being harmed by vanilla flavouring?

If I do this long term, what might be a safer alternative would be to source the rice, pea and hemp protein powders separately and then mix them, which would give me better quality control. It's too much cost and storage upfront, though, but I'd consider it after a couple of months, if I were seeing a benefit, and if I found genuine cause for concern with the premixed ones.

I checked and found conflicting views regarding rice so l will continue to eat less and soak, rinse and use plenty of water. I guess it depends on how clean you are wanting your diet regarding things like flavourings. I read that they are a problem with glutamate sensitive folk.

 

[MeSci]

Lips turning blue sounds like low blood oxygen content. If you ever have the chance it might be useful to check your BP, and blood oxygen (using a pulseoximeter), when your lips are turning blue.

I don't get blue lips, but a pulse oximeter sounds like a good addition to my testing kit (I have a bp/heart rate monitor and blood glucose monitor). I do find the low blood oxygen supply theory interesting and quite compelling, including the nitric oxide connection.

My bp monitor is too cumbersome to carry around or use when out, and my wrist heart rate monitor is erratic and hard to get readings from, so I wonder whether to invest in a combined oximeter/hr monitor, like these on Amazon. What do you think?

Here is a Wikipedia list of hypoglycemia symptoms. I can usually tell my blood sugar is gradually descending about 20 minutes before it goes into a sudden drop. I start to feel less energetic, and my thinking clarity diminishes.

Those are symptoms I've had the last couple of mornings before breakfast, but I checked my blood glucose today and it was normal. Yesterday I checked my bp, and it wasn't low at all. Systolic pressure was high (despite medication), diastolic normal and hr highish - it's usually quite low with my beta blocker.

 

[MeSci]

This is one of the reasons why I got the doctor to check me for diabetes. At least we know I don't have that, but I do wonder about hypoglycaemia. Should I get a home testing kit or something? I have a support worker with diabetes, she could probably help me with that.

I've got dysautonomia and am on ivabradine plus 3 litres fluids and a lot of salt a day for it. I know I'm really tired when I keep salting a meal as I eat it. I put 1/2 tsp salt (it's a mix of sea salt and low-sodium salt, so there's a bit of potassium in there too) in my 800ml/27oz water bottle, and some days I can't even taste the salt in there.

I got my bp monitor on Freecycle, but they're cheap enough to buy online.

I take sodium bicarbonate solution every day for acidaemia (which I am fairly sure I have, but I will press my doc to test for it next time I have blood tests) and a tendency to hyponatraemia (which I know I have), and sometimes it tastes very salty and sometimes very weak. I don't know which of those indicates that I am high in salt and which indicates that I am low in salt, but would guess that it's the contrast that counts, so if it tastes strong it means I'm low in salt? Only guessing though.

 

[Calathea]

Oh, I have a pulse oximeter! It's stopped working now, but my oxygen levels were always fine. I tried talking it on walks, but it was too awkward to keep checking, including for HR.

As for HR, I have the Fitbit Charge and find it really useful for that. I check it frequently, for instance to or out when I'm up to having a shower or doing something else tiring.

I think the doctor ran the HbA1c test on me and it came out absolutely fine.

 

[Calathea]

I got my bp monitor on Freecycle, but they're cheap enough to buy online.

I take sodium bicarbonate solution every day for acidaemia (which I am fairly sure I have, but I will press my doc to test for it next time I have blood tests) and a tendency to hyponatraemia (which I know I have), and sometimes it tastes very salty and sometimes very weak. I don't know which of those indicates that I am high in salt and which indicates that I am low in salt, but would guess that it's the contrast that counts, so if it tastes strong it means I'm low in salt? Only guessing though.

With me, when I can't taste the salt I've put in something, that generally means I need more salt. I don't keep salting my water, I use the same scoop every time for the water bottle, but I salt my food until it tastes OK, and that varies a lot.

 

[Calathea]

Watch out with bicarb of soda, by the way, it can cause nasty diarrhoea. I can't stand the taste myself, so it's not one I use in my own blend. I think there's a bit in the Nuun tablets.

How do you know you have acidaemia? My friend's ex had very severe ME and died of hyponatraemia. No one had told him about POTS or salt, in fact the poor chap was avoiding salt because everyone says it's bad for you.

 

[MeSci]

Watch out with bicarb of soda, by the way, it can cause nasty diarrhoea. I can't stand the taste myself, so it's not one I use in my own blend. I think there's a bit in the Nuun tablets.

How do you know you have acidaemia? My friend's ex had very severe ME and died of hyponatraemia. No one had told him about POTS or salt, in fact the poor chap was avoiding salt because everyone says it's bad for you.

I'm one of those who has felt better since taking bicarb (as described by me and others in some threads on it), and when I reduce it or stop it I feel much worse. I found the taste horrible at first but soon got used to it. As a vegan, I theorise that I need less stomach acid than someone on an omnivorous diet.

OMG re your friend's ex. That is a terrible way to die. I have had borderline-life-threatening hyponatraemia twice, and it is absolutely awful. I have always had a strong taste for salt - since childhood - so I think I have always needed a lot, probably due to losing too much in urine. Thanks to doctors' idiotic theories about the cause of my hyponatraemia I suffered from it for years - it was almost-certainly the ACE inhibitor causing it.

I eventually asked my new doc to test both blood AND urine, as I suspected that I was losing the sodium in urine. My blood level was quite low, whereas my urine level was astronomical. Whilst I know that for a definitive answer you need to test other parameters too, that was at least supportive. I suspect that I have had lifelong renal salt wasting (it used to be called cerebral salt wasting), which perhaps became worse with ME, when I also developed polyuria, and then it was further exacerbated by the ACE inhibitor.

 

[Calathea]

Oof, I'm glad you have that under some control at last. With my friend's ex, he hadn't eaten properly in a couple of days, and decided to get his fluids up at least. I don't get the impression he had that huge an amount to drink, though. I don't think it was painful, he was in a coma fairly quickly and died a day or so later. The doctors just recorded it as "water poisoning" without asking why the hell a man of 28 would suddenly develop water poisoning. He hadn't been getting any medical care, as is far too common with people with ME and especially the bedbound ones.

You reckon vegans need less stomach acid? That's something at least, as I've been on meds for years which will probably have wiped mine out entirely, and not a single doctor ever mentioned that. (Nor did the people talking about mast cell disorders either here or on DINET, come to that.) It was a nurse on the Neurotalk forums who brought it up when I posted about getting epic farting on iron tablets. I take digestive enzymes now, and I'm really glad I got this sorted out when I was still on supplement level iron, rather than the prescription level I'm now on. At least I know that taking all these mineral supplements is a good idea, since I will be having malabsorption problems from the hypochlorydia.

Going back to blood sugar, should I be getting a blood glucose monitor kit and playing around a bit? They sell them pretty cheaply on Amazon, and they have good reviews.

Also I'm wondering whether I should stop this licorice experiment. I'm not sure if it lowers blood sugar to hypoglycaemia levels, but I've just seen that it's a phytoestrogen, and that might be why this pelvic pain flare isn't going away.

 

[Valentijn]

The Jarrow one says "natural French vanilla flavour". Hopefully that means actual vanilla extract, but you're right, it's a bit vague.

It isn't vanilla extract. It's vanilla flavoring created from a different natural food item. Apparently it typically involves bacterial fermentation of a grain, or similar. "Vanilla" or "vanilla extract" is real vanilla. Anything described as a flavor of something isn't going to be the real ingredient.

 

[MeSci]

Oof, I'm glad you have that under some control at last. With my friend's ex, he hadn't eaten properly in a couple of days, and decided to get his fluids up at least. I don't get the impression he had that huge an amount to drink, though. I don't think it was painful, he was in a coma fairly quickly and died a day or so later. The doctors just recorded it as "water poisoning" without asking why the hell a man of 28 would suddenly develop water poisoning. He hadn't been getting any medical care, as is far too common with people with ME and especially the bedbound ones.

You reckon vegans need less stomach acid? That's something at least, as I've been on meds for years which will probably have wiped mine out entirely, and not a single doctor ever mentioned that. (Nor did the people talking about mast cell disorders either here or on DINET, come to that.) It was a nurse on the Neurotalk forums who brought it up when I posted about getting epic farting on iron tablets. I take digestive enzymes now, and I'm really glad I got this sorted out when I was still on supplement level iron, rather than the prescription level I'm now on. At least I know that taking all these mineral supplements is a good idea, since I will be having malabsorption problems from the hypochlorydia.

Going back to blood sugar, should I be getting a blood glucose monitor kit and playing around a bit? They sell them pretty cheaply on Amazon, and they have good reviews.

It's a theory of mine that vegans will need less acid, because one of the main roles of stomach acid is to break down protein, and vegan diets are usually lower in protein. I'm not sure - as some stomach acid is secreted after food is eaten, so maybe it is secreted according to what food is present.

Hyponatraemia wasn't particularly painful as such for me - it 'just' featured nausea, dizziness, numbness, severe tremor, including a Parkinson's like chorea, and all muscles being in spasm and out of control, including respiratory muscles, urinary and anal sphincters. I could barely stand or lift the phone. The second time the leg spasms did become painful. It is terrifying for one's whole body to be out of control. It felt as though I was going to die. I won't hijack the thread with full details, and I have given more in other threads.

The only method I have come across to check pH at home is the 'burp' test using sod bic, which is described in other threads. By that method I am acidic, but I don't know if it's reliable.

Having read @PatJ's posting above I am wondering how accurate my blood glucose readings are, so don't want to advise on getting one as I don't know.

 

[Calathea]

I meant unpleasant rather than literally painful. I think he passed out fairly quickly and that was the last he knew, so at least it was a merciful death. What you experienced sounds really horrible, although at least you got enough warning signs to know that something was wrong. I'm so glad you figured it out before it got really dangerous.

Gah, I wish companies wouldn't use misleading labelling like "natural flavouring". I have no idea whether that is likely to cause me problems. I suppose I should just use it for a bit and see how I get on with it. They managed to make it palatable, which is a big deal, as I've never been able to cope with a protein powder before. If I were to buy the MyProtein one, which is the plain pea/rice/hemp blend (but is it in the same proportions, and how far does that matter? If the ingredients are equally cheap, hopefully they'll have done the optimal proportions) without any additives, then I would probably buy vanilla powder from eBay, that looks straightforward (I tried cocoa powder yesterday, total failure), and then I need to work out how to sweeten it. I have stevia around, which I find works in hot chocolate made with rice milk and tastes weird elsewhere, and xylitol, which I haven't played with much yet but which seems to be a bit of a gut irritant if I have too much. Oh well, I'll probably get through a fair bit more of this tub of protein powder and then re-evaluate. Buying from the UK is a definite advantage to buying from MyProtein, and I think it works out a bit cheaper, although the vanilla will be a higher cost upfront. They also sell tubs of almond butter which are apparently fantastic and much better blended than the Meridian one, which always separates into a rock-solid layer and a layer of oil which is impossible to mix in. On the other hand, I've a feeling Jarrow might have a better reputation than MyProtein. It's hard to tell. Jarrow seems to be primarily aiming at the supplement market, MyProtein at the sports market. Is the sports market as picky about quality?

 

[MeSci]

I meant unpleasant rather than literally painful. I think he passed out fairly quickly and that was the last he knew, so at least it was a merciful death. What you experienced sounds really horrible, although at least you got enough warning signs to know that something was wrong. I'm so glad you figured it out before it got really dangerous.

I didn't, and nor did the doctors. It was 7 years before I knew what was causing the hyponatraemia, and several days before I even found out that I had hyponatraemia, as the doctor diagnosed a panic attack over the phone and the ambulance crew phoned him and believed this ridiculous telephone diagnosis. I was too ill to go to the doctor's for days. It was just lucky that I was eating cream crackers to stave off the nausea, and they had salt in them. Or I might have died. As it is, I suffered a fracture and widespread dental damage over ensuing years. My bones and teeth had been fine before I started that damned ACE inhibitor.

I hope your friend's ex did pass out quickly, but it's still a terrible tragedy and a scandal.

 

[PatJ]

Having read @PatJ's posting above I am wondering how accurate my blood glucose readings are, so don't want to advise on getting one as I don't know.

I think a blood glucose meter can still be useful, but I wouldn't trust a few isolated readings. If you check blood sugar over the course of many days, especially when you're feeling hypoglycemic, then the wrong readings will be obvious once you've got a feel for your blood sugar. Before getting a blood glucose meter make sure to check reviews as some are more accurate than others. Also, the meter itself is usually inexpensive, but the test strips are pricey.

 

[PatJ]

My bp monitor is too cumbersome to carry around or use when out, and my wrist heart rate monitor is erratic and hard to get readings from, so I wonder whether to invest in a combined oximeter/hr monitor, like these on Amazon. What do you think?

These are apparently easy to use. I've ordered one and am waiting for it to arrive. Simple ones are very inexpensive on eBay (if you don't mind ordering from China.) The more expensive ones can log data so you can see what your blood oxygen is doing over a period of time, such as overnight. Amperor Direct has some useful information about pulseoximeters including features to look for. They have several pulseoximeter articles including one about the limitations of these devices.

This comment from the first linked article is interesting:
"The plethysmograph can tell something about the condition of the patient's heart, such as missing or irregular heartbeats, low blood flow..."

Low blood flow monitoring could be useful during OI vs. lying down. I don't know how accurate it would be.

 

[Calathea]

MyProtein sent me the amino acid breakdown on their vegan blend prprotein powder. Here it is compared to the Jarrow. What do you think? The higher amount of tyrosine in the MyProtein stood out to me in particular. I'm more interested in this than in the additives.