sue1234

When I read MSG from Firewatcher, I thought probably so. But, here I am 3 days later, and the symptoms are worse! I am now having to keep my a/c on constantly and a fan blowing on me as I feel like I am vasodilating with my hands and feet swelling, and this all makes me feel faint. You would think I was standing around in 90 degree weather!!!! I put in a call to my cardio to see if he has any idea what is going on. Do others have vasodilation for no good reason? How do you control it?

It's also interesting that copper is VERY involved in collagen building. I wonder if most of the EDS people have had their ceruloplasmin(?) levels checked?? I also know that copper is involved in the pigment melanin. I actually started getting grey hair when I was just 29 years old. Anyone else have any testing on copper or ceruloplasmin levels checked?

Last night I ate egg drop soup and two egg rolls. I used probably two teaspoons of soy sauce to dip the egg rolls in. I only drank maybe a cup of water after eating because I had to attend a school event for my daughter who is a senior(it was air conditioned, thank goodness!). Then when I got home I drank a little more. Before bed I felt my hands swelling and I felt hot, just like what happens when I step outside in our southern summer heat. It was only 78 degrees in my home. I quickly turned our a/c down for the cool sleeping conditions and got ready for bed. This morning I wake up and immediately feel "off"--a little tachy and lightheaded more than usual. I still feel that way, plus some hand and feet swelling, and feel warmer than usual, but not fever. I thought sodium was supposed to be our friend?!? Was this most likely from the soy sauce? I have no thyroid, so it is not a thyroid issue. I have eaten soy sauce many times and not had an issue with it. I really feel like my POTS symptoms are from not enough volume, so why would extra sodium "hurt" me? It's like I have vasodilation and it won't quit with the fan blowing on me. Any ideas?

Before my POTS 4 yrs. ago, a naturopath had me request my MD check for serum and urinary copper levels. Both were at the very low end of normal. And I have looked before for the rings in my eyes, but none. It is interesting, though, and maybe worth me having my copper levels checked again.

I haven't found one doctor yet who knows what to do. The cardio did all the testing then prescribes a bb that I don't tolerate, and supposed to go back in a year. Well, I can't keep letting one year go by after another! I have an endo that has tested the possible endocrine reasons, but when all is somewhat normal, they just drop the issue. An internal medicine doctor just looks at all my routine labs and says fine. The only doctor that has actually cared was my new female gyn recently. She just kept saying, "that just isn't right--you should not have to live with that!" I could have kissed her feet for acknowledging(?) that I have a serious problem! She then made me an appt. with a neuro(local), so her intentions are VERY good, I just am not so sure some local neuro is going to help. Oh yea, he's going to want to do the usual testing so he can say he did something, but i would be shocked if he wanted to actually think outside the box. But, who knows.

Erik, I second that! A supplement to take with food. Researchers better start working on it, as all of the books I've been reading lately on celiac(5 books), all say that in reality, about 1 in 130 people has some sort of gluten intolerance. That kind of made me think of the amount of autism showing up these days, too--one book mentions gluten may have a connection. The latest one I'm reading by a physician says that alot of autoimmune diseases can be tied to gluten issues. Simple things like lactose intolerance can be directly linked to gluten, in some people. Put it this way, all celiacs should probably have lactose intolerance, as the place in the intestines that produce the lactase enzyme(the tips of the villi that line the small intestine) are destroyed. Once gluten is eliminated and these villi heal, people find themselves tolerating dairy again. I, out of the blue, 10 years ago became lactose intolerant. Makes me wonder how deep gluten intolerance is not being recognized. I can not stand up long enough to fix meals, so it is sooooo hard to get on a gluten free diet. I live in a small town, so no places that might even offer the cooked meals.

Get tested for celiac disease. Even if negative, gluten sensitivity can cause PN, along with many surprising other bodily symptoms, such as muscle issues.

The "brand" I am using is just a generic brand that was labelled from my local health food store. You know, when you go in a store and they have their "house" version--that's what this is, so I can't say it is a certain brand. I take one with lunch and one with supper. But, I will list the ingredients: amylase glucoamylase lipase protease I pH 3.0 protease II pH 4.5 protease III pH 6.0 cellulase alpha-galactosidase lactase invertase malt diastase peptidase bromelain papain Futurehope--I have also been prescribed Creon(prescription enzymes) a few years ago and they didn't do anything. I also think someone should have been able to test my pancreas' ability to produce or not produce adequate enzymes. I am really beginning to believe gi docs are only in it now for the easy endoscopy and colonoscopy routines. If they have to actually think, they don't want to. I know I am lactose intolerant, so drink Lactaid milk and don't take in any other dairy, so know it's not just due to the lactase. I don't know why this combination seems to be working, but it does! I usually respond badly to anything I take, so I was very hesitant to even try this. I'm glad I did. I can't wait to bring this in to show my gi doc at my next appt. in June. At the very least, I will make him aware of the possibility of "maldigestion" of future patients that complain of bloating.

I can't imagine what a pulse in the 40s would be like! That is so low. Those doctors need to think before they proclaim that is normal or okay.

Bellamia, I'm so sorry for your loss. I am sure your life is in turmoil right now. I am sending healing energy your way. You have always been so comforting to others here, and I hope you can feel the 'group' hug from everyone here.

I'm sorry you had an "episode" today. It can be very life-limiting to not know when/where it is going to act up, if you are somewhat functioning to begin with. Can you give us a little background? Were you diagnosed with POTS and have been functioning well with meds? Is this your first episode?

With norepinephrine that high, have they double checked you for a pheo? I know there is a certain limit that when on a tilt test, if it is way over an average high, they go on to test for a pheo. If you haven't already been tested, request it. Especially since you had "the highest level they've ever had in a patient"!

I have had stomach bloating for almost 10 years. I have gone to numerous gi docs over those years, had a zillion tests(scopes, etc.). The only actual test I have not had is the test that checks how fast things move through. I KNOW by symptoms my food doesn't move very fast--I can burp my food up 5 hours after my last meal. I have had a battery of meds--reglan(no more), tried erythrocin(did not help), and domperidone. In the last year my bloating has been unbearable at times. I was constantly pushing in my upper abdomen, like somehow that was going to move things. I would get chest pain when it was really bad. I emailed a PhD acquaintence that works in the nutrition field, and told him about my digestive issues, along with my POTS history. He mentioned that enzymes in the body are KEY in getting everything done. He mentioned that this has been known for many years by researchers, but hasn't fully made it into the mainstream medical care. I do know that certain people with obvious diseases, such as cystic fibrosis or people who have no pancreas, have to take digestive enzymes. Soooo, I bought some digestive enzymes, and NO MORE BLOATING! I am not sure if I am having a freakish week with no bloating(which never happened before), but I really believe the enzymes have helped. NOW I can look back and see that the food probably got to my stomach/intestines and not much happened. Then the intestines had to deal with all this undigested food, and I am sure that's what gave me so much gas that I would burp like a sailor. If I have not been digesting my food adequately for 10 years, then I can just imagine what the fall out has been as the years went by. I know the body needs all the nutrients to run smoothly and help prevent disease. Who knows--maybe my POTS happened as a result of lack of nutrition related to inadequate digestion, not from lack of healthy diet. Time will tell if I have any improvement. I am thrilled to not eat and feel like I just dumped a load of yeasted cement into my stomach! I told my husband I can now eat and not "feel" my food in there for hours afterwards. I will update this post to let people know if I continue to have success.

Yes, like Cardiactec said, it is most likely testing for a pheo. I've done a 24-hour test for that, the catecholamines, and cortisol at the same time. It wouldn't hurt to ask him to test the cortisol too. Just remember to keep the jug in the refrigerator. I forgot to add, if it is a pheo, that would be something that is FIXABLE! We with POTS are so used to having something that is chronic and don't know if it will get better or not. A pheo is something that can be surgically removed and POOF!, that problem with it's accompanying symptoms is gone.

I have been following this thread, but don't have alot to add. I have a low aldosterone(3) and a low ADH, and was prescribed DDAVP, but kind of scared to take it. Put it this way, I took a half a pill one day and waited all day to see how I felt, but no difference. I tend to get high b/p when standing, and normal when at rest, so I am afraid it will increase my b/p, so didn't continue. Plus, Firewatcher had told me they needed to check urine osmolar(l)ity at the same time, and my doctor had not done that. Just don't know which way to turn! I just posted a thread on calcium(hypocalcemia) and one place I read says that low calcium can lower aldosterone. I would like some others to give me their take on it. I have had documented low calcium a couple of times over the last few years since developed POTS.

Yep, RN that worked all of one year. I feel like my college was wasted, but do enjoy the knowledge that I gained and am STILL gaining.

I would like to add that I just read something very important: www3.interscience.wiley.com/journal/119132166/abstract It mentions in the topic on hypocalcemia that "another rare manisfestation is life-threatening hypotension resulting from diminished aldosterone secretion and vasodilation". Obviously, I don't think we would be in a "life-threatening" level of hypoCa, but do see that it lowers the aldosterone levels, which has happened to quite a few of us, me included. I would love for some people to think on this, as my brain takes in just so much, then I can't figure it out anymore.

I have been having an AWFUL time with bloating for the last two weeks. I have been trying everything in my arsenal, OTC and prescription meds. I have been mostly taking Milk of Magnesia(1.5 doses) to at least help move the bloating gas through and out every morning. This morning I woke with tight chest muscles and arms, and couldn't seem to get a full breath. It was like my muscles were somewhat "locking up". So, I did some research on having taken 1800 mg. of magnesium via the MOM every day, and noticed hypermagnesia can cause hypOcalcemia. So, I started reading about hypocalcemia. I read a study in a veterinary journal(oh well, still medical info!) that discusses hypocalcemia can decrease intestinal motility---something alot of us have a problem with! http://www.actavetscand.com/content/44/S1/P76 Also, in another place, I read that hypocalcemia impedes acetylcholine release at neuromuscular junctions. This is another thing that alot of people have benefit from--meds that are used for myasthenia gravis, having to do with acetylcholine. I know my pulmonary doctor tested me for it as he thought my symptoms sounded like they were related to a ACh problem. My levels were ok, but what if transient hypocalcemia causes it not to be used? I have actually tested low in calcium on two random, routine labs in the last couple of years. Calcium and I have a hate/hate relationship!! I have tried to take supplement over the years, but they make my stomach bloating worse. I did read that if you are low in calcium to begin with(causing low intestinal movement), then take calcium and get poor uptake, that it can sit in the intestines and exacerbate the constipation! I have not found how it might effect vascular tone, but since calcium affects smooth muscle, I am sure it very much affects vascular tone! Anyone else have calcium issues? I know I am low in vit. D, but it makes me feel bad when I take it. It's a no-win situation for me trying to get my calcium needs met!

I definitely tense up when upright, and sometimes I think it is hindering my blood flow to my brain! I have almost come to that conclusion lately. It seems like if i would just be able to relax that maybe my b/p wouldn't go up.

I just went through the testing for this in the last few months. I first was found to have a positive(4x high) antibody, but the biopsy was negative. I've had bloating for 10 years, but it has been AWFUL these past few months. There are other members here that have recently been found to have celiac. I wonder if my case might fall under the gluten intolerance category. For bloating, I saw a g.i. today and he's treating me for small bowel overgrowth. He said right away that it sounds like I have trapped "air/gas" in the small intestine. Then he wanted me to also take probiotics, and I told him I really bloat when I try probiotics(pills, yogurt, etc.). He said it might be a good idea to "clean" my intestines out with OTC stuff first, then take the probiotics so maybe they'll reach the large intestine, and not stop in the small intestine because of all the "backing up". So, that's what I'm doing this week I really do wonder about the celiac and gluten intolerance and possible relation to POTS.

I have wondered about pelvic congestion too. I also had varicose veins when pregnant, but not in the legs--in a more embarassing area, that went away when not pregnant. But, with my POTS, I've always wondered about a mechanical obstruction making the blood pool in the pelvis or lower extremeties. I don't know, but wish someone could think it through. All I know, is, like you, if it is warm or hot, my vessels dilate and I feel like fainting.

I have to admit, I began vitamin C by 500 mg, then the next day 1000 mg. It made me so tired the next few days, and I remembered that it has done this to me in the past years when I tried to supplement with vit. C. Anyone know why it would do that?

Wow to anything that helps someone! I don't know much about it except for use in some other conditions, such as carcinoid and/or some other endocrine things. What made them start that on you and specifically to help what?

I would like to know also. My gi doctor just did a 24-hour urine for me(I had to request!) to test for carcinoid(5-IAAA?) and he added in a histamine. My urine histamine came back low, but I wonder if that means anything regarding testing for MCAD. I also flush.

I was wondering the same thing--what is the drug supposed to do for dys.? I have been reading about people being on it, but not sure what in the body it does. I have hyper-POTS also, so don't know if it is for that or not. Can someone fill me in on what it does? All I know is it is used for people with myasthenia gravis(if I remember correctly!).