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This Can't Be Related To Pots?


julieph85
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My most distressing symptom by far is an intolerance to carbohydrates. This came on at the same time as the orthostatic intolerance about 2 1/2 years ago but has just gotten progressively worse over time to the point where now, I can't ingest carbs at all before 3:00 pm. For the longest time I thought the reaction i get was happening after "eating" before 3:00. Then I did an experiment by eliminating some foods and I realized it is just carbs. What happens is that about 20 to 30 minutes after eating anything containing any kind of carbohydrate my face, upper back, and chest become extremely hot to the touch- strangely though they don't appear to flush that bad- my cheeks turn a little red but not bad, they just feel extremely hot to me, and to touch them. My heart rate will also go up about 25 bpm and my hands and feet turn ice cold. I also feel extreme anxiety and jitteriness. This will last about an hour and then subside and finally go away. Afterwards I feel very tired and thirsty. I've tested my sugars and my bp before, during, and after an episode and it is always normal. Actually, the BP is usually high during an episode which proves it is a catecholamine reaction. I've done a little research and it appears to be a norephinephrine release because of the peripheral vasoconstriction (cold hands and feet, and hot core). How i know that it is not related to blood flow, like what happens with pots and eating big meals, is that it happens even after eating something small, like a cookie. So, it can't be related to the blood flow, it is definitely a reaction to the carbohydrates. The only thing i've come across is that in every person the body secrets epinephrine and norepinephrine after eating carbohydrates and in fact, this happens more in the moring and afternoon, and much less in the evening and night (which may be why i'm okay during these times). So i'm assuming, my body is just way hypersensitive to catecholamines, which is why i'm reacting to eating the carbs. The thing is, is this POTS, or is this some other disorder? I've always felt like my problem is hypersensitivity to catecholamines ONLY. There is no evidence to suggest I'm hypovolemic, or I'm pooling. In fact my heart rate doesn't even stay up when i'm standing, it just happens initially and then goes back down, which is normal. It's just that my reaction to it, is too dramatic. Same with everything else, my startle reflex is extremely sensitive- i get a huge increase in heart rate from a startle, my resting pulse is high. Basically, any physiological event that causes a release of catecholamines makes me feel terrible, but otherwise i'm fine. That doesn't make sense for POTS? Even when doctors test my autonomic system they say it's intact. I barely fail the TTT, and everything else is perfect. I can't let go of this idea that i've got an endocrine based hypersensitivity to catecholamines, not true pots. Then I read some post on MedHelp yesterday from someone who expereinces all my symptoms to a T, but does not have any orthostatic symptoms. They have the same exact symptoms after eating carbs, same startle reflex problems, same exercise intolerance, same fast resting pulse, same thing where they get woken up out of sleep an hour in with severe tachycardia but.... they don't have OI. This makes me feel like the catecholamine sensitivity is not POTS? It is some other disorder? A few other people responded to this person and said they had the same symptoms exactly and none of them had OI. They also all had very low fasting insulin levels, which I have as well! I just cannot accept that there isn't some funky endocrine thing going on in me. SO SORRY for the long rant, yesterday i was almost completely incapacitated for an hour just because I ate a small bag of fruit snacks at 1:00. So i'm feeling pretty sory for myself today. Does anyone have any advice on this? Thanks guys...

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hugs!!!!! what kind of carbs julie? tryin to get my thinking cap on this morn :)

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i do better if i eat fruits and veggies till about 3 or 4pm pastas, cereals and breads are better tollerated at dinner but it still bogs me down pretty badly.. i feel for you! have you had our pituitary checked? a friend of mine in az has about the same thing going on.. ncs, pituitart tumor and severe hypoglycemia. she has all the pots stmptoms but barely failed the ttt.. i barely failed that also because it has become an involentary reaction to pump my leg muscles when they start feeling fill and my hr goes up.. and they never told me to be off of my betablockers....but i pass out while sitting and in a semi reclined position some days

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Thanks ladies, any kind of carbs! I've noticed it is anything with sugar in it period. Literally the only things I can tolerate without this reaction is eggs and meat. I've also noticed the longer I go without eating, the worse the response is if I eat carbs. Lily, I had my prolactin tested which I was told is a marker for pituitary function and it was normal. I feel like this has to somehow be related to the low insulin, I just don't know how.

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What about mcad and gluten intolerance (if its carbs that contain bread, wheat, etc?). If i eat carbs (not veggie carbs) but bread, wheat, anything with gluten.... then exactly what you describe is pretty much what happens to me. The gluten can trigger the mcad into a flare, causing alot of what you describe.

Just a thought?

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I've thought about that, but it happens even if it is something without gluten- like the fruit snacks yesterday. Also, it's not really an mcad type reaction, it's a catecholamine release. In fact the symptoms are identical to what happens if I get real nervous about something and I start releasing adrenaline. I just don't understand why I am so sensitive to the norepinephrine? It has to be some sort of new disease. The only known thing that causes a similar phenomenon is hyperthyroidism but my levels are mostly normal.

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For my mcad attacks.... honestly, it takes no trigger, or any trigger. My symptoms are pretty much the same...... im actually in an attack but im so confused as to if it's mcad acting up, or dys acting up or what??? Ugh!!!! it's all so confusing and so many symptoms overlapping. I have been 100% bedridden since i came back sunday from that concert i went to..... i got sick the last 2 songs but made it through..... have been very sick since and i just can't figure it out. Although, for some reason, the month of feb has always been my worse month for symptoms for some reason..... i can think back 15 years and each year in feb, it is always something in the health and/or stress going totally haywire.......

:( lets hope we get past this flare up soon

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Have you looked at reactive hypoglycemia? I've read that hypoglycemia can trigger an adrenergic response, which sounds like what you describe. There's also something called Adrenergic Postprandial Syndrome, but info on this is scarce.

http://www.uptodate.com/contents/postprandial-reactive-hypoglycemia/abstract/1-3

Abstract

Postprandial reactive hypoglycemia (PRH) can be diagnosed if sympathetic and neuroglucopenic symptoms develop concurrently with low blood sugar (<3.3 mmol). Neither the oral glucose tolerance test (OGTT) nor mixed meals are suitable for this diagnosis, due to respectively false positive and false negative results. They should be replaced by ambulatory glycemic control or, as recently proposed, an hyperglucidic breakfast test. PRH patients often suffer from an associated adrenergic hormone postprandial syndrome, with potential pathologic consequences such as cardiac arrhythmia. PRH could result from (a) an exaggerated insulin response, either related to insulin resistance or to increased glucagon-like-peptide 1; (B) renal glycosuria; © defects in glucagon response; (d) high insulin sensitivity, probably the most frequent cause (50-70%), which is not adequately compensated by hypoinsulinemia and thus cannot be measured by indices of insulin sensitivity such as the homeostatic model assessment. Such situations are frequent in very lean people, or after massive weight reduction, or in women with moderate lower body overweight. PRH is influenced by patient's alimentary habits (high carbohydrate-low fat diet, alcohol intake). Thus, diet remains the main treatment, although alpha-glucosidase inhibitors and some other drugs may be helpful.

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I know doesn't it sound just like reactive hypoglycemia! The problem is ive checked my blood sugar during an attack and it is well within the normal range. I also typically eat an extremely high carb, low fat diet- with moderate alcohol intake, so you would think it would be that, but I've never been able to show low blood sugar. I've thought about the post prandial hyperandrenergic syndrome, and I'm sure that's what I've got, but there is NO info at all out there about it so I have no idea where to go with that.

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Interesting - I also had low insulin levels on testing, but endo said it was fine. Frustrating there's no info about postprandial hyperadrenergic syndrome because it fits. Maybe you're right - an undiscovered disease? In regard to reactive hypoglycemia, I haven't been able to capture low sugars on home testing either, although minor hypoglycemia will frequently show up on labs. However, according to the article above, even the GTT test may not pick it up. See below about testing:

Neither the oral glucose tolerance test (OGTT) nor mixed meals are suitable for this diagnosis, due to respectively false positive and false negative results. They should be replaced by ambulatory glycemic control or, as recently proposed, an hyperglucidic breakfast test.

Maybe see an endo and have a conversation about all this?

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I saw two. Both gave me the blank 3 minute stare and then said "that's really interesting" "i would just change your diet" DUHHHH!!!!! But that does not explain all my other hyperandrenergic symptoms or give me a reason, which is what I want

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Julie,

This is a typical reaction of a food sensitivity. If they did allergy testing on you - it probably would be negative. But, we can have sensitivities and our bodies go on attack mode. My guess is you are reacting to probably grains and fruits and sugars. It's not that un-common. Try just eliminating those and see if you do better. I can hardly eat fruit and grains and sugars do me the same way. (Your body turns grains into sugars.) Try just having meats and vegtables for awhile and then you will know if that's the problem. It may be that your body will re-set itself if you eliminate them for a period - say 4 weeks and then add one back at a time.

In alternative medicine - one way to check for food sensitivites is to check for increase pulse rate about 10 minutes or so after injesting it. Typical reaction - sounds like to me.

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I have repeatedly read throughout the years that there is an intricate relationship between adrenaline and insulin, which, natch, is activated by carbs.

My sister read an article in Prevention on this and suggested I go low carb. WOW! I discovered a noticeable improvement

Also, I DO have significant cardiac flairups/events from food sensitivities. ALCAT testing led to reduction of my prinzmetal angina (coronary artery spasms = dysautonomia, leading to one (or two) heart attacks).

Good luck, Julie.

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Have you been tested for celiac? some people feel better gluten free even if they don't have celiac. Maybe eating smaller, high protein meals more frequently would help. In general, a high carb diet is not good for POTS. I agree more research needs to be done in this area - not sure docs know much now. :(

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I cant eat carbs before lunchtime without getting a POTSie or feeling super tired reaction.

Carbs can reduce periperhal vasoconstriction which might trigger an over-response in POTS and symptoms. Perhaps carbs also worsen postprandial hyperemia and move more blood to the stomach circulation. In any case I get this definately and my etiology is likely autoimmune or at least related to autoimmunity.

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