sue1234

I've never been able to stop it. I can't find anything else that keeps the bowel gas moving, because if it stops, my abdomen blows up and I have trouble breathing. I can go as long as 3-4 days without it and then the familiar pressure happens, and I get back on it.

Limitless blue jay, actually I do take Milk of Magnesia about 4 x a week. I forget about it as I've been doing this for about 4 years. BUT, when I say I'm not taking any additional Mg, I mean I'm not taking any Mg pills on top of that. I used to also take Mg oxide pills about 3 x a week to help the bloating move on through my intestines.

I have it!! I have had it about twice a year for a few days at a time for a few years. About a month ago it started back up and is still going strong. I asked my doctor about it 2 weeks ago, he had no clue why I had it. He offered an antidepressant that has dry mouth as a side effect to help with it, but I'm hoping it will just go away without starting any meds. I have NO clue why I get it. I already have a bloated stomach, and having to swallow so often really makes me so much worse. The only thing I've been able to relate it to in the past is sometimes I might have taken too much magnesium. At those times I would back off of magnesium and the problem would clear up. However, this time I am not taking magnesium but still have the problem. I have been taking my prescription vitamin D, so maybe it is all related to something with the calcium/magnesium ratio.

You sound like you had a classic hypoglycemia attack! You said the ER said your blood sugar was low, and more than likely it had begun to rise from the time it first hit you to the time you got checked at the ER. So, it was probably lower at your car. I have had many, many lows over the years. It sounds like you were getting so low that you were getting neuroglycopenic symptoms. It means your brain wasn't getting enough glucose. Your brain has a hard time functioning, probably why you couldn't talk correctly. The panic is REAL. Your brain is starving for glucose and setting your adrenal glands on fire(adrenaline, cortisol) to help raise blood sugar. Get a glucose meter and check your glucose at different times of the day. Keep the meter with you and definitely check when you are having symptoms!

Those are the only two things I'm familiar with that those tests rule in or out. Let us know what you find out.

Thanks everyone for their input and interpretation.

Can I ask if you had your anti-diuretic hormone level tested and that's why you're getting on vasopressin?

I also have a long history of hypoglycemia. If I eat something normally sugared(dessert, etc.), my body acts like it is insulin resistant. But I am not near being a diabetic, and never have after almost 25 years of this. It has been worse since POTS hit 8 years ago. I just don't eat sugary things except for a special occasion. I think since developing POTS, I am of course having more adrenaline surges when my body is stressed from being upright. Adrenaline by itself will cause higher blood sugar, and with me putting out extra adrenaline due to standing up doing things, then glucose rises some. Later, without the adrenaline, things drop again. It is a constant roller coaster. And if your cortisol is at all elevated, then that is also a reason for elevated glucose and insulin resistance.

I recognized the authors and did know they are from Vanderbilt, and am aware that they are part of the autoantibody study. I guess my point is, the way I read it, they would diagnose less POTS if they made sure to add in the placebo aspect, because then they could "weed out" patients by what is seen as a "perceived" benefit. ***I have edited this, as I have reread and reread again the abstract. I am not sure how to interpret this paper, and I will admit that.

I just added! Sorry, forgot.

Am I reading this correctly? Is this article implying that a group of POTS patients respond to placebos, so they need to include that more often in testing so they can "rule out" POTS better?? I'm sorry, but some of this research in POTS is just demeaning to us patients that have a serious illness and don't know why. (I am ecstatic about the autoantibody paper that came out recently!). http://www.ncbi.nlm.nih.gov/pubmed/24606242

I can say when I went to Mayo-Jax, I saw 3 doctors. My main reason to go, I saw an endocrinologist. His initial visit lasted around 30 minutes, follow up around 20 minutes.. He had me see a neurologist and that visit lasted about 20 minutes. Finally I saw a cardiologist, and that lasted about 15-20 minutes. I was not impressed with the motivation of the doctors I saw.

aks, regarding the fecal incontinence, have you been worked up for Chiari, tethered cord, and syringomyelia? Loss of bowel and/or bladder function is a sign of these. You would need a full spine MRI.

How irritating! Now you know that she had such a noncaring attitude because she was leaving! That is wrong that you have had to have that appointment with someone who obviously isn't giving it her 100% because she's leaving. Can you maybe get a quick appt. with an internist there that may be able to get you to the people that you need to see?

I am so sorry you had this happen at an institution that is well known for POTS research. I had a similar experience when I went to a well-known institution's satellite place in a state nearer to me than their main institution. I went for hypoglycemia, saw an endocrinologist, and he was awful. He did one test that needed to be done, but as far as helping me get to the bottom of the problem, he just said that one test showed normal. It didn't matter that I STILL HAD THE PROBLEM, and had had it for 20 years. I always thought this place was THE PLACE to go to get a diagnosis. He did refer me to neurology for my POTS, even though I didn't ask. They had me do a TTT, qsart, and breathing tests. According to them, I did not show POTS, even though my TTT the year before showed positive for "adrenergic POTS". I'm surprised they didn't test my supine/standing norepinephrine levels, as this was the place that was known for doing that. Anyway, after the testing, I had to see the neurologist who really didn't have hardly anything to say. She did say, "Let's Google POTS so I can give you a printout on what it is"!! I said that's ok, I'm familiar with it. I had 2 doctors that acted like they couldn't wait for me to leave their office. What is up with that? Where are the physicians that actually have an interest in health issues? I cried too after my week long appt. that was a 12-hour trip over there. I expected this was THE place to figure this out, and it was no where near my expectations(doctor-wise that is, as the hospital/clinic was awesome and very organized).

I am the same way...mornings are my worst time of day. I actually have had my cortisol levels tested a couple of times in the mornings for endo testing. The last couple of years have shown my cortisol to be at the very top of the normal range, along with a high-normal ACTH. You would think that would mean I feel energetic, etc., but I feel lousy, no energy, etc. I do feel ALOT better by mid-late afternoon and evenings.

Yep, he does a thorough workup! I must say since I saw him around 2009, he has added alot of more testing! I have had a few of those through other doctors since, like the sleep study and gastroparesis study, but he has added a few others to his repertoire(?). It sounds like you wouldn't get a more thorough evaluation anywhere else! Please do keep us updated on all your testing results.

I have been having a low TSH for the last 2 years. It hovers around 0.02 (0.3-3.0). My FT4 is at the top of the normal range or a few tenths over. I feel my "perkiest" at this level. When they made me lower my dosage from 100 mcg. to 88 mcg., I spent all last fall in a constipated, bloated daze. I felt halfway to a coma. I then went back up on my thyroid meds, and it took me a good 3 months to get back to my "normal", where I can think and have some energy. I had my thyroid removed a few years ago, and started at 125 mcg. I felt alright, but was heat intolerant, so I voluntarily lowered the dosage to 112 and then 100. Anyway, at rest, my heart rate is in the 70s, so I don't think I am really hyperthyroid, even though the labs say I am. Being on a lower dose did not make my POTS be any different, just mostly my mental ability and energy was gone.

Maybe you could get through this time today by going to an Urgent Clinic. They can at least give her fluids and meds that lessen the nausea/vomiting. That will help you see if it might be a virus(and go away) or something that comes back when the meds are done.

From what I remember, low albumin means in essence low protein. This usually stems from malabsorption. Do you eat gluten free? If not, you might want to be checked for celiac or if not that, try a gluten free diet for gluten intolerance. Albumin is important for binding hormones and other things. Without enough, all of that doesn't work properly. It would be important to get your albumin levels up to normal. Lastly, albumin in the bloodstream influences oncotic pressure, which pulls water/fluids out of other spaces into the blood vessel. This could mean a lot if one has POTS, because not getting the fluids into the vascular system could mean hypovolemia. So, find another doctor that will take this seriously!

One thing that helped with my last one, too, was that that place had a fan behind the head end of the machine, so a breeze was going through. I liked that extra air coming through, and made it feel like it was more open than it was.

I am very claustrophobic. I take a little Xanax, then I close my eyes before they slide me into the machine, and don't open them again until they pull me out. That actually helps, just by not seeing how closed in I am.

I've had a number of MRIs, but not having a cough. Possibly you can suck on a lifesaver? When they take MRIs, from what I understand and someone please correct me if I am wrong, is they do it in "sections". Like the first scan might take 8 minutes, then they move on to the next. Total, my MRIs always last around 30-35 minutes, longer if doing two areas of the body. But, between these sections they always ask if I'm doing ok. Maybe you can take time to do a good cough at those times and maybe get a new lifesaver.

Out of the store-brand GF breads I've tried, Udis beats all of them. It is the only one that "holds" together. The others fall apart. I also bake my own bread, which has a wonderful, homemade yeasty bread flavor, but I can't get it to rise high enough. I guess looks don't mean anything. I have not felt at all like I am missing out by being GF. I take any recipe I want and convert it to GF. I make homemade pizza with my own homemade GF crusts, and my last one actually was better than any GF pizza I've tried, frozen(yuck!) or even at a GF cafe! Mine was at least 2x better than the busy GF cafe! I also make a lasagna with our rice grits in place of noodles, and it is just wonderful. And like the poster above, the quinoa noodles are really good if cooked and then incorporated in a dish. They soak up the dishes sauce and you almost can't tell the difference in taste or texture, as long as you let them sit in the dish for a little while. When making bread, I have found over the last year: 1. I don't like the taste of amaranth flour as it seems bitter. 2. I don't like the taste or texture that bean flours give, and I also lessen the addition of the starches(tapioca flour, etc) I am from Louisiana, so making a roux for a gumbo was the ultimate challenge. I have finally made one that is not too bad, but of course not as good as a regular wheat flour roux. It is, however, pretty good. Once again, mine was better than the local GF cafe. My point is, with lots of practice, any dish can be made GF and taste yummy.

Due to POTS, my brain is slowly losing its ability to comprehend the nitty-gritty aspects of these studies. What I would like to know is, does this mean that our alpha 1 adrenergic receptors are blocked? Or, are they overstimulated? Second question, so if we take something that is an a1ar antagonist, does that hurt or help? Reason I'm asking is I've been having a lot of adrenaline lately unrelated to my known causes, such as hypoglycemia, etc. My IM doctor prescribed Trazodone, but 1 day of taking it makes me feel awful. I didn't take another dose, but here I am 2 days later and having near-panic attacks for no reason, plus weird symptoms such as excessive saliva and heavy arms with palm sweating(I normally don't palm sweat). From what I understand(which is questionable lately ) this med is supposed to be somewhat of an antagonist of a1ar. Do we do better on antagonists or agonists under these circumstances?