The Same Episode

[carinara]

Hello everybody,

i havent felt good in the the past few months thats why i havent been writing a lot.

Iam planning to write and let you all know what i am up to, in a little while when i feel a little better.

I just wonder if anybody can help me with this one:

Like i mentioned, iam in a so called POTS hole, and my body just does its own thing at the moment. It seems like every other week a new bad symptom shows up again...

I still try to go to work everyday but dont ask me how that goes... its a big challenge and i try to

wait the episodes out in some quiet room or the restroom , and when i get home i cant do much....the thing that has been constantly there for the past 3 months is that every single day around lunch time ( between 12 and 1) my body goes mad and i dont really know why.

Since about 3 months i cant tolerate food very well again. It doesnt really matter what i eat, i get an reaction.So we tried an H1 Blocker. Since i startet the H1 Blocker about 9 weeks ago, i do feel a bit better.

My bloodsugar is very unstable as well at the moment. It seems, as if i dont benefit from my eating routine (i stuck to for more then 5 years) anymore. Its a constant change between having the urge of eating something sweet to the urge of eating something salty. Whilest at work i keep eating tiny bites to keep my bloodsugar stable and i cant go more then 30 minutes without a bite of food. I keep loosing weight because i can only tolerate tiny amounts of food.

But then a weired thing happens every single day at work. As soon as it comes to lunch time my body goes mad. I work from 8 to 1 and around 12 o?clock when everybody else is on their lunch break, i start feeling sick, i feel an adrenalin rush,

i get shaky, jittery an so on. Then it feels as if my stomach is closing up and i cant eat anything anymore even though it feels as if my body screams for food. I get very lightheaded, my BP must be rocket high, i get shaky and cant think anymore, I try to stay calm and wait for it to pass hoping that my body gets somehow in balance again. As soon as i get home i eat a chicken soup and a tiny peace of chocholate and thats when i start to feel better again. Today for example, i had to work a full day. I didnt feel good this morning but improved up until 11.30. Then all of a sudden on 11.45 i started to feel sick, shacky, nervous, lightsensitiv .... again. I ate my chicken soup and a tiny peace of chocolate and i started to feel better within 30 minutes. It took me another 1 hour before i felt stable again.

What is this??? I tried to eat the chicken soup earlier before in order to stop this episodes to come up, but it didnt work, i still got it. It feels as if a build in inner alarm clock goes on every day around the same time, and it feels totally different then the normal POTS episodes because i feel it must have something to do with food? It only happenes around that time never in the morning or afternoon. Like i mentioned before, all day long iam trying to keep my blood sugar stable but something strange happens with me every day around lunch time????, i dont get it, it feels as if my body produces some kind of hormones or something else ALWAYS around that time???? Any ideas and sorry for this weired post, i hope you can understand what i mean.

carinara

[sue1234]

I was just talking to Alicia about hypoglycemia. You need to see if you could use a glucose meter around 11:00 and see what your blood glucose level is. Then check it again at 11:30. See if it dropped below 60ish(below 60 is considered low blood sugar). You might see a trend in your blood sugar. When it drops, your body produces all kinds of hormones to raise blood sugar, because your brain is screaming that it needs glucose! The shot of adrenaline will make you shaky, etc. My first low blood sugar symptoms are shakiness and being hot. I know I need to eat now.

[prettyinpink]

I have this problem. I am a type 1 diabetic and my episode at the same time almost everyday is not dependent on my bloodsugar. But i usually end up with a low bloodsugar after the pots episodes starts. The only time i don't have an episode at 1-2pm is the days when i lay down with my feet up for most of the morning.

[juliegee]

Hi Carinara-

Sue has the best idea. Actually check your blood sugar. Meters are pretty cheap. You have to take the time to read the manual, but once you get the hang of it, checking your blood sugar is really easy. I started doing it and it was eye opening. When I felt very shaky, it WAS low and several times- it was immeasurable, the meter just said "Lo."

Taking tiny bites of food is NOT doing the trick. Chicken soup and chocolate are BAD food for hypoglycemia- too many simple carbs/not substantial enough. I understand the problem, your GI tract is feeling badly, probably slow GI digestion due to dysautonomia. Everything you should eat to control the hypoglycemia you are unable to tolerate. Alicia is having the same problem.

The best thing is to have as much protein and complex carbs as you can handle in a really mushy" digestable" form. Scrambled, hard or soft boiled eggs are great- protein and relatively easy on the tum. How about very soft 100% wheat bread? Slices of turkey, chicken, fish, a bowl of brown rice in a thermos at your desk. Very soft mushy cooked vegs are good. When I feel really bad, I blend fruit, ice, soy or rice milk- a protein smoothie (protein from the milk.) Dairy is hard on the tum.

What are you having for breakfast? Are you having any caffeine? Caffeine, sugar, alcohol, and anything white (bread, pasts, rice, etc.) will ultimately make your hypoglycemia worse. It will fix things in the short run & then your fuel will run out. The foods listed above will give you better staying power.

I hope you feel better soon!

Hugs-

Julie

[ramakentesh]

It appears POTS patients are more prone to reactive hypoglycemia and also seem to be more sensitive to the normal adrenaline regulation of blood sugar (a reaction even when actual blood sugar is normal).

[erik]

Good to watch blood sugar for sure. It appears one can have hypoglycemia symptoms without hypoglycemia too, via relative drops in blood glucose as well as so called "Adrenergic Postprandial Syndrome", which may or may not be a useful perspective on it. It may be difficult to know which came first, though, since ANS response and glucose/insulin/glucagon/et. al. kind of push back & forth on eachother (parasympathetic ANS is also quite key to insulin).

Anything that follows a regular rhythm gets pretty fascinating. Aside from unnoticed external or behavioral causes (good to screen for), the body's clocks have some interesting quirks. I've not found the original study I recall reading, but essentially even an adrenal gland cut off from normal external synchronization (like that stimulated indirectly by light received in the eyes) can end up keeping a very regular clock cycle! This overview article on the Adrenal Clock has some similar (and contradictory) citations. It is probably accurate to say that the adrenals have their own clock that is "fine tuned" based on the signals from higher-up regulation.

This makes me wonder what that adrenal clock will end up doing if the higher-up signal is dysregulated and confusing... like a 'garbage in-garbage out' circumstance to a little analog 'computer/clock' of sorts. It seems like lots of circadian dysregulations could result... and since the adrenals are central to so much, this could mess with a lot of endocrine regulation elsewhere and set the body up to respond poorly to otherwise normal circumstances.

It is also said that properly regulated sleep cycles tend to have two sleepiness peaks, the nighttime hours and also a second mini-peak a bit after noon time. So perhaps even giving in to a noonish nap/relaxation thing might come in handy (even if you don't particularly feel like it), on the wild theory that your body is over-countering this tendency with sympathetic flood, like we tend to do urgently against orthostatic stress.

Just throwing out some speculative thoughts for you to adapt to your more informed personal circumstances & insights.

[ramakentesh]

Interesting.

[erik]

One anecdotal thing is that when I exercise regularly at the same time of day, usually the evenings to avoid heat, I tend to feel my body rev up at that time of day on it's own. It's like it is anticipating the exercise. In that case, it is harmless or helpful. I might have noticed this with my sleep disturbance phases too. Like having a "real" disturbance one night... then "echoes" on subsequent nights. Not sure how much of that is in my head, but maybe the body does that. I don't know.

I can say that my body gets into "same time of day" episodes of several sorts somehow, so you're not alone in that!

[carinara]

Thank you all very much for you suggestions.

About 5 years ago i meassured my blood sugar regularly and developed a good feeling for it.

Because of my low blood sugar at times, i totally changed my eating habbits back then. Up until 3 months ago i felt pretty much in control over this problem but now it changed somehow...

My problem is that as soon as i eat carbs like rice, potatoes, pasta, i get tachy about 20 minutes after eating it. My doctor told me that carbs dilates the blood vessels and i can definately feel it everytime i eat them. I stopped eating them about 4 months ago because i really got tachy and lightheaded afterwards. In fact, everything that dilates blood vessels make me feel this way, so i try to avoid it.

The other thing i have to watch are foods with histamine in it. Back then (about 3 months ago) i ate too much shrimps one sunday afternoon and got really really sick, i couldnt get up for the rest of the day and ever since then i started to feel worse. We figured that i might suffer from histamin intolerance. Thats why i take an H1 blocker since then.

I don?t really know what i should eat at the moment. I have to watch the carbs because they make me feel sick and i have to watch the histamin as well. What else is there i can eat???

For breakfast around 7 o?clock i eat a sugar free granola with milk and a tiny bit of banana in it. Then when i sit on my desk at work (around 8.30) i start feeling the urge to eat something sweet and something salty every 20-30 minutes. And then it all starts all over again.....

Thanks a lot for your help

carinara

[juliegee]

I don?t really know what i should eat at the moment. I have to watch the carbs because they make me feel sick and i have to watch the histamin as well. What else is there i can eat???

Protein.

[EarthMother]

This is where the glucose meter helped me in 2008 when my blood sugar was all over the map. It was easy to see what I could or could not eat because I was testing all the time.

For instance I saw that even a half of a banana was a no-no for me. Same with 'no sugar' granonola -- still waaay to much natural sugar/carb.

I know how hard it is to eat when this blood sugar instability is raging. Small meals are fine but you probably need to change what you are eating and make sure you are getting all three <a protein, a little complex carb and a fat> in each mini-meal.

My system when wacked out back then, couldn't handle even fruit and absolutely NO CANDY not even a single lifesavor that I was using to boost my wicked hypoglycimic lows. Sure, I felt better because it pumped me up a bit but it was making the problem worse down the line.

Think a protein, a little complex carb and a fat, for every bite. Also what stabalizes me when I am already surging is four ounces of whole fat milk. I used to drink soymilk only, but reading my glucose levels I realized this did very little to help my rollercoaster ride. Whole milk gets my blood sugar up and the high fat content keeps it stable no spikes or dips.

Other foods that helped:

1 slice of whole milk non-aged cheese with a Half or even quarter slice whole grain bread. <I have histime reactions too so chedder or swiss etc is OUT but whole milk mozzerella is fine>

1 TBL almond butter <no sugar added> with a tiny bit of bread. Or even a handful of walnuts or brazil nuts. <not pecans they have too much carb and way too little protein>

I also used real butter on my small morsels of bread because again the fat helps spread out the sugar load over time. Carbs <noodle soup, chocolate> convert to sugar quickly, proteins <meat, tofu, cheese> take a little longer and FATS convert to sugar at the longest decay.

It took me many months adhering to a strict reactive hypoglycimic diet before I felt better -- there's no quick fix. But you must stop eating things that are keeping the cycle going for your unique body chemistry. For me I had to cut out all simple carbs, no white pasta, breads, rice etc. NO fruits, no sugar, no potatoes. I had to limit even my complex carbs. I could have a TINY bit of brown rice IF I was eating twice that of protein. I also needed to eat more animal fat -- as a vegetarian that meant real butter,whole fat milk and whole fat simple cheese like mozzerella.

Hang in there Hun. I'm holding a good thought for you.

~EM

[prettyinpink]

So if this 1-5pm episode is not caused by bloodsugar drops but just by my body's chemistry what can I do?? I always end up with low bloodsugar but its usually around 2-3pm because of my heart rate racing for the previous couple of hours.

[carinara]

Hello again,

Thanks for all your very helpfull suggestions. Potsgirl, I will try to eat more protein now. In fact, i will fix my food for work like Earthmother and Macks Mom described. My cholesterol levels were a little high the last time i got tested (i have no idea why), so therefore i shouldnt eat too much fat. I will try to find a good balance though.

I also found Eriks post very interesting, because now that i thought about it i realize that this happens to me from time to time in other areas as well.

I can also relate to what ramakentesh said, that POTS patients seem to be more sensitive to the normal adrenaline regulation of blood sugar.

I thank you all so much for your time and effort. Starting tomorrow i will adjust my foods so please wish me luck.

carinara

[EarthMother]

Carina -- do you know WHICH of your cholesterol levels went high on your last screening? When I was in the blood sugar spikes it was my tri-glycerides that went high. These are a direct result of the sugars and carbs that were throwing me out of whack.

[carinara]

Hi EarthMother,

the number i got was from my overall cholesterol. Iam planning to get a more detailed test done between christmas and new year.

I have another question. What is there that i can eat when i have the urge to eat something sweet, because of low blood sugar whilest at work? I need something that works quick but doesnt do me any harm. I need quick help when these surges come. I try to drink some fruit juice but the effect doesnt hold on long enough. My boyfriend tried to buy some almond butter yesterday but didnt find any. Is there anything else thats sweet and doesnt harm me, you can recommend?

Thanks a lot

carinara

[EarthMother]

Juice use to spike on me (i actually still can't handle it) ... for me the easiest thing is four ounces of whole milk. In part because the fat helps keep my blood sugar stable longer ... also because there seems to be something in reduced fat milks that trips my glutamate action (hidden msg). I learned a lot from the msgmyth.com website and found for me when I eliminated those foods too I did much better.

If even four ounces a day seems too much for your cholserol, you can try whole nuts instead of nut butters which can be hard to find. I actually grind my own nutbutters in my food processor -- walnuts, almonds, hazelnut or brazil being my favorites. Unsweetened soynut butter works for me too --- but that can be hard to find.

I've had my cholesterol checked twice since adding the butter and whole fat milk but cutting out all the sugars and my triglycerides came way down and my other values are better too. Even my 'bad cho

steral' was only like 140. I think its a genetic thing. My Dad has really high cholesteral and eats this really low fat diet. But he still eats plenty of refined carbs (white pasta) and simple sugars. I think there's a link there.

Where I live we can buy a little disposable blood glucose meter ... like 25 or 50 strips with the meter built right in to the cap on the vile. If you can pick one up, you can do some experiments yourself one weekend. I was testing and charting particular foods every 15 minutes or so to watch the spike and gradual or most cases RAPID drop off in my blood sugar as a result. I kept detailed notes and would repeat the ones that seemed strange (like bananas or even a quarter of a potato which became no-nos for me back then) and I could come up with a set of dependable foods that worked for me at the time.

It might be that a small piece of chicken (or tofu) works well for you at work when you feel a crash coming on.

Good luck sweetie, I know how hard these symptoms are and i'm sending you good thoughts that your body finds it way back to an easier time soon!

[carinara]

Thank you so much for your helpful suggestions EarthMother. I will definately try to get some nuts today so i can try them out in the office tomorrow. Is there anything about the amount of nuts to eat, that i should watch for? For example: a hand full every other hour or a handfull spread over the entire morning? I know that nuts are very high in calories and i remember that once you start eating them its difficult to stop (especially the brazil ones for me). Thanks again sending you a big thank you hug, carinara

[EarthMother]

I don't notice nuts to be "addicting" for me UNLESS they are salted! ;-) And even then, I figure it just means that I need the salt!!

When I was crashing back then it was hard to eat and I was loosing weight. So I ate anything I could and as often and as much a I could tolerate. All that extra adrenaline was burning up the calories quickly.

I'd say eat now ... count calories later when your body feels better. If you can handle a quarter cup of nuts every couple of hours with a half slice of whole grain bread then go for it!

[carinara]

ok, my new plan is to try the nuts with the whole grain bread now. Thank you again and take care, carinara

[erik]

I think some endocrine disorders can emerge as glucose & lipid issues simultaneously, so just be sure to keep a doc appraised if you do find extra glucose signs (I assume they would already know about lipids since they'd do the measure They'd just see if the whole picture seems to fit a "profile" and pursue if they thought it was possible. Not likely, just something to keep in mind.

Prettyinpink, it seems like you could be an example of the other end of the loop with activity or sympathetic over-activity ending up in glucose crash (or making a bad back-n-forth cycle). I think an adrenal sort of surge would initially free up glucose, but then potentiate a crash afterward (in a classic picture of the interaction which may or may not apply). Then the crash triggers adrenal surge. In the context of diabedes, especially type-1, I don't know the safe course of action. Gotta ask a medical expert though, cause it's a tricky thing. Only generic safe thing I can think of is also kind of useless... try to steer a middle-of-the-road by avoiding whatever triggers racing heart if that comes first. Lot of help that is! Kind of obvious. Sorry. It's gotta be a tough balance.