Orthostatic Intolerance And The Size Of Meals.

[Machair]

One thing which has hit me time and time again is the complete exhaustion which hits me if I eat any foods in large quantities. Now by this I actually mean the sort of portion which an average person would think was normal for them!

I know that large meals are not recommended at all if you have POTS, the advice being to eat 5 times each day, high protein meals in small quantities, and in the main this is what I do. However the times when I forget, like last Saturday, when without thinking I ate a large jacket potato, I was bed bound within the hour feeling shattered. I am sure this is due to the lack of blood volume and POTS.

So what I'm wondering is what you all do to help this, and indeed I am wondering if this affects you all too.

The other thing I am really aware of is the need to eat my last meal quite early in the evening otherwise I go to bed feeling as if my food has gone nowhere.

Are there any foods which you avoid such as heavy carbohydrates? I know Carrigon has advised again several OI trigger foods such as garlic, lettuce and water melon, but do you have a problem with potatoes or stodge in general, or is it simply a question of eating little and often?

Thank you all for your help,
xx

 

[Victoria]

Machair,

I suspect everyone who eats large meals feels a bit lethargic & unwell. If they're used to large meals, they're used to feeling the "after effects".

I was brought up on large servings of good, home grown, home cooked meals. But they weren't necessarily high carb meals.

Now, carbs really make me feel very, very lethargic. My body has changed over the years. My metabolism is very slow & exercise is very limited.

I think 5 small meals a day gives your body a chance to digest the food more readily. And I've never liked late evening meals. Eating late does not give your digestive system time to break down & assimilate all those complex nutrients.

If you eat close to bedtime, you body is wanting to close down it's systems, rest & recharge for the next waking period, it does not need to be bogged down with heavy foods which require long digestive action.

But that's just my opinion. Every body has different needs & nutrition requirements.

 

[Machair]

Thank you Victoria for your reply to this. I agree with you-carbohydrates make me feel really very bad indeed. Strange really because when I first became ill in 1996 I called The ME Association helpline in The UK and the advice was to eat carbohydrate regularly throughout the day to keep energy levels up. This was and still is a disaster as it promotes lethargy and increases symptoms, especially the next day.

 

[FernRhizome]

Hi folks:
I've been intending to start a thread on gastroparesis which is also known as "delayed stomach emptying" and which is often a part of POTS and dysautonomia. There is a simple test for diagnosing it. You eat radioactive scrambled eggs and then have a series of x-rays. My stomach only worked at 7% of normal when I first became acutely ill. I think I will start a thread on this so the title has gastroparesis in it & will post more info there. ~Fern

 

[Carrigon]

Well, what happens with POTS when you eat is that, first of all, you already aren't getting enough blood flow and oxygen to your brain. So when you eat, the blood pools down to the digestive system and the upper legs. The body is compensating for the lack of blood flow to those areas, which kind of gets into how we have so much less blood volume than normal people do. But when it compensates for that to allow you to eat, it takes it away from your brain again and your heart and your upper body. So you trigger a POTS attack. If you eat smaller meals, sometimes you can stave off an attack, however, not all the time. And God help you if you ate something that lowers blood pressure because it just makes it a hundred times worse.

It's a horrible cycle. You eat, you have to eat, you can't just starve, you start to feel lightheaded and sick, you lay down because you feel too sick to stand up, you pack on the calories and pounds since you can't do anything. And then the next time you eat, it happens all over again.

Having salt, like I had recommended can help reduce the severity and duration. Watching what you eat can help, eating slightly smaller meals can help.

The really interesting thing about all this is no one has ever been able to tell us what happened to all that blood we are missing.

 

[Lily]

Yes machair - a large jacket potato would do exactly the same to me. In fact, by most standards a moderate meal would. I have to be very careful and only eat small meals. Usually i eat 4-5 times a day. I choose my carbohydrates carefully and stick with only complex carbs and in small amounts.

We are already short on blood volume, so when the blood heads to the gut to digest the meal, we are further depleted for a time.

My food seems to take forever to digest so eating early in the evening important. Seems like everything I do has to be carefull choreographed throughout the day. Ha, funny how that sentence makes it sound like I actualy DO things other than the necessary activities of daily living.

 

[kerrilyn]

If I eat a large meal I'll get very cold, cannot get warm, a bit light-headed and fatigued. Usually I'll have to lay down and rest for awhile. I also have the same problem when I have a bowel movement. Not every time but sometimes. I can have energy that day and be ready to go somewhere, like to the store, and then on my way out the door, I use the bathroom and all plans are off. I get those same symptoms and have to lay down for anywhere from a 1/2 hr to a few hours. It's frustrating because I never know when it's going to happen.

Is that a sign of POTS too?

There are times when I just can't get warmed up no matter what I do, after events mentioned above and it happens more in the winter. I feel frozen down to my bones; sitting in front of a heater doesn't work, being under a heating blanket doesn't work so I will go into a very hot bathtub. Sometimes I will fall asleep or get light-headed but it's the only thing that takes the really cold feeling away. But that confuses me because IF I have POTS, I should do worse with hot showers/baths. I'm not sure that happens. Or could it be because when I get that cold the hot water helps being me up to a normal temp and therefore it's helpful?

Normal every day stuff, I don't shower till later in the day because the mornings I always feel too zombie-like to do it then. And I know I can't tolerate humid summers. I don't step foot outside till maybe 11 pm and the sun has long gone down, because the heat tires me out so much.

 

[Samuel]

Anybody the opposite?

I sometimes feel less bad (reduced pain, malaise, and other symptoms) after a large meal with a mixture of mostly protein, some fat, and some carbohydrates. But maybe that's because I never eat enough and I am often basically starving. Still, it seems significant and I'm a little bit surprised that others are the opposite.

 

[Carrigon]

Kerrilyn, I think the cold is either thyroid or one of the herpes viruses, like HHV6. I suffered for years and years with the freezing cold. I would sit by a heater. I would wear sweaters in the 90 degree summer, freezing, not feeling the warm weather at all. I still can't take the cold. And when I'm under stress, my temperature drops and I literally shake from the cold. It's awful.

 

[kerrilyn]

Carrigon, I have most symptoms of hypothryroid and hoped *something* would show up as abnormal, but blood tests (including free T3 and T4) are normal. So, I figured HPA axis dysfunction is the culprit. I know some of the particularly freezing episodes that feel absolutely horrible and I have to plunge into a hot bath to feel remotely normal again occur following a big meal, BM, PEM or when I've raised my heart rate, and other times where I don't clue into the cause.

As a side note, I've not been tested for any viruses although I had the big 3 as a child (mumps, measles and chickenpox) and mono. We have a parrot (who hates me) and he tested positive for HHV6 prior to us getting him. When he first got here he bit into my hand several times and drew blood. Not sure if HHV6 jumps species but I've wondered who could have been the bigger thread to the other - him or me. It's amazing that our birds can get tested for this stuff but it seems like I can't, I'm always telling my vet that I wish he was my doctor!

 

[Carrigon]

Did they run a thyroid antibody test on you? Without it, Hashimoto's will never show up.

Viruses do jump species, unfortunately. I don't know why they won't test you for HHV6, they should.

 

[kerrilyn]

I got a thyroid antibody test (anti-thyroid peroxidase), it was negative. Luckily I found a GYN who would do more thorough hormone testing, but he is not someone I want to see again - long story. My GP would only test TSH levels. I've been diagnosed with FM, and in the eyes of my GP every bizarre symptom I have is FM. I stopped trying to convince her otherwise and haven't been to see her for over a year. Unfortunately we can't doctor shop here.

 

[Carrigon]

I hate it when they just attribute everything to FM. My doc has done that. I went in and I was really getting the bad heart pain, and she actually said, oh, it's probably just the FM. Yeah, right.

 

[Sunday]

OK, this one may be going out on a limb, but...I have a family member who broke her neck in a car accident, then got lupus. She was horribly sensitive to the slightest draft, always worse scarves, suffered relapses when she got too cold. Until she started taking...vitamin D, the new fad vitamin! It's been over a year and all that is still much better for her. I forget what the mechanism is, so I don't know if it would apply to you, but it's certainly a cheap thing to try and in general a good supplement for us to be taking. D3 is the better form I understand.

 

[klutzo]

Hi all,
I have the freezing cold thing too, esp. after eating. It can go on for hours, or even all night long, keeping me awake.

It can make the hairs on my arms stand on end, with goosebumps all over and teeth that shake until I think they will break.

I was told this is due to my Lyme Disease. One of the first things Lyme does is disturb the communication between the skin and the brain which tells your body how it should moderate your temperature.

I recently went into oral hypothermia in the ER, because it was so cold in there and they would only give me one blanket. They had to do a core temperature test to make sure I was not truly hypothermic (embarrassing rectal thermometer). I have had my temp at home go as low as 93.1, which is considered hypothermic.

I also take Vitamin D3 at 10,000 units daily, and have for almost two years, so for me at least, it does not help my problem with chills.

I can and do get chills in our 90 degree weather too, but they are much worse and nearly constant in winter when it's below 75 degrees. I am only comfortable between 76 and 79 degrees. Above 85 degrees, my pulse gets so low, I have to crawl on the floor to get from room to room.

I am hypothyroid but am on both T3 and T4 and numbers are acceptable, not great like they were on Armour Thyroid. How I wish they had not taken it off the market.

Anyway, if it were me, and I had no absolute proof that my blood volume was too low, I would make sure to get my thyroid checked and get an accurate Lyme test (IgeneX Labs only) or do a trial of doxycycline as a Lyme test, just in case.

klutzo

 

[flybro]

I have the same problem, i can't eat large meals, i would get halfway thru and feel full and shattered.

I love roast dinner but it is one of the worst meals for wearing me out.

I also have the same when i have a bowel movemnet again not al the time, but quite often I am unable to do anything other than laydown.

Oddly enough I have had this when i've just been for a pee as well.

 

[Lesley]

The problems after bowel movements is because of OI. It's called a vasovagal episode. http://en.wikipedia.org/wiki/Vasovagal_episode

 

[kerrilyn]

I get the problem after a bowel movement too sometimes. It doesn't really feel like I will pass out as much as I get really cold (teeth chattering) and exhausted. I'm aware of everything going on. I just have to go 'sleep it off' and then I feel better again.

So vasovagal episode, also called neurocardiogenic syncope, is not the same thing as neural medial hypotension? But another form of syncope?

 

[Lesley]

I think they are different terms for the same thing, but syncope is fainting, so anything short of that would be an "episode".