issie

But, according to this study ---what causes the prolactin and CCK to be so high in the first place? Since one section showed it didn't matter what the level of cortisol is and in one part cortisol was low and there was a panic attack. It doesn't seem that the person analyzing it is proving his point. If that were true, you could just take DHEA and you would always have your DHEA at a high level. But then, you would sleep all the time, if DHEA induces the phases of sleep. So, if you don't have low DHEA and you supplement -- seems like you would create a chronic fatigue issue in yourself. I know, years ago, I was having what seemed to be panic attacks -- before my POTS diagnosis. I was shown to have low cortisol. So, I don't believe that high cortisol causes the surges. But, possibly high adrenaline instead. But, quite honestly - I think it was the undiagnosised POTS and the dysfunction of the autonomic system.

I was told from Mayo that the hypermobile type of EDS could not be tested with genetics. This is the only type they diagnosis on symptoms and visual.

So much of this is difficult for me to understand, but patients regularly "shock" (have no measurable BP) from anaphylaxis for instance and are NOT covered in bruises. The medical literature describes this as blood vessels leaking out. Where does the blood go, indeed??? While we are on the subject, how does water turn into blood??? We are encouraged to drink extra water to boost our blood volume- huh? How does that work? I don't think you are alone in having EDS and hypovolemia and so far it's not been life threatening . My son is Dxed with both a connective tissue disorder & hypovolemia. Lie you, he is is incessantly thirsty and uses the bathroom constantly. I have posted a question re. this to see if there are others DXed with both conditions. I think there are very few absolutes with dysautonomia. Sue is right in that it is secondary to something else for most patients. Sometimes that causal factor is compound. For instance, in my family, we have a connective tissue disorder AND a problem with mast cells. BOTH seem to cause the dysautonomia. Julie I don't think water turns into blood. If fact, I'm quite certain of this. What the water does is increase the fluid volumes. When you get an IV it is a volume expanser. It doesn't increase the amount of blood but adds volume or fluid to the blood. I think the other comment made explains that well, about the fluids leaking out, not the blood leaking out.

Look at the thread on What causes Brain Fog. May be part of the issue.

Don't know what causes it. But, I, at first - before my POTS diagnosis - was diagnosed with Parkinson's. I was also treated for the same. The treatment made me worse and of course didn't help. Then, I was told that the doctor thought I had multiple system atrophy. That's when I went to Mayo and got my POTS diagnosis. I still have tremors and shakes. If I'm tired or get nervous or upset - it is definitely worse. I've also found that certain lights will cause me to shake. I was tested for seizures and that was not an issue. The only thing I can figure is it must be the autonomic nervous system misfiring. At times, I have no tremors or shakes and other times it's pretty bad. I never know when it will hit. There is no rhyme or reason to it. Also, I haven't been tested for it, but, I feel that I have the hyper adrenal type POTS. That could explain the adrenal type surges you feel. Since so many have norepinephrine issues, this is an adrenal hormone - it makes sense that if there is an imbalance there - you could get the surges of hyperness. Also, some brain chemicals have that surge type component. If brain chemicals get out of balance, possibly that could affect all the other hormones including the adrenal hormones. So, do you treat the brain or the adrenals? THAT IS THE QUESTION. We're all connected - so one imbalance will intensify the other one. Like, for example, treating the Parkinson's with dopamine was not the right thing for me and intensified the tremors even more so. From the trauma of it all, it created an imbalance in the adrenals - the stress gland. It's the trickle down problem - it all domino's. WE ALL FALL DOWN.

Makes sense to me. I also wonder if blood sugar issues are part of the problem. If there isn't enough glucose in the brain, this could cause the brain fog too. Since there are some of us with weird blood sugar problems it makes sense that the combination of the two - would - create BRAIN FOG.

I think as far as dental work goes, some people do use an antibiotic before cleanings, because the doctors are afraid that plaque can cause heart issues if you swallow it. (If you have Ehlers Danlos, your teeth move around easily and IF you go into orthodontics, it takes years to get finished and then you have to wear the retainer, at night, for life.) Flying does definitely bother me. I wear full body compression garments and drink allot of water. If it's a long trip, or over 2 hours - I get up and walk and stretch. While you're sitting be sure to move your feet and legs around allot. Ativan does work great for calming. Anesthesia has also been an issue for me. I recently had a surgery and instead of putting me completely out, they used nerve blocks and locals with some type of med that made me feel like I was out. I did fine that way. As for PAF, your TTT would have determined that. You don't have it, because your pulse went up. In PAF, your pulse doesn't go up to accommodate your BP. Normally, when your BP goes down, your pulse goes up to bring up your BP. In PAF this doesn't happen. The easy bruising, can be from EDS or your could just need more Vitamin C. EDS can be a cause of POTS. This is usually diagnosed by a rumatologist and then you are sent to a gentics doctor. You will want to find out if you have the adrenal type of POTS. There are symptoms that go along with this type. You may look up some threads on Hyperadrengic POTS. Some people have a test for their sweating abilities/or lack thereof. It goes along with the autonomic issues. Some people have an issue with allergies called Mast Cell Activation Disorder. I'm guessing an allergist test for this. And last, but surely not least -- there could be an autoimmune issue causing the problem. Also, some people have small fiber neuropathy - this is checked by a neurologist. Right now, that's all I can come up with. But, it's plenty for a start.

I don't know about the test. But, it may explain some of your POTS issues. There is an illness that affects the lungs and can cause POTS symptoms. Let us know what you find out. It is probably a good idea to do the test. I had a recent surgery and that is how they treated me, because of the POTS. I did just fine. They were afraid to put me completely out, because of the POTS and issues I've had with past surgeries.

Good response, I knew the blood couldn't be leakey if it were, there would be terrible bruises on those who have this. I have EDS and do feel that I have issues with hydration. I've not had the test for this, but I know my body doesn't seem to take up water into the cells properly. I don't know if this is what the issue is with the hypovolemia or if this is an issue with electrolytes. I know that the kidneys play a major role in how fluids are processed and minerals like potassium, magnesium and salt are also key players. Depending on whether you have hypo or hyper pressures is a good determiner as to whether potassium or magnesium would be beneficial. One rasies the BP the other lowers it. Our bodies are so complex and with supplements, you have to be careful. You could be creating a problem, if you don't know what you're doing. Just because their natural, doesn't mean they are right for everyone. As for disability, yes pretty much true. It's so frustrating, as you all know.

I found this article very interesting. Thanks for including it.

Thanks for the idea. There's no way I'd be able to make it to the campus clinic when one of these starts, or even call. I'm home for summer right now. I've done some home blood sugar tests before the POTS diagnosis but it's definitely worth checking out any possibilities again. It seems its only been related to food insofar as if the meal was heavy or not.... Which I'm guessing is POTSy fatigue due to digestion combined with the other activity of the day (such as company) which can bring one on. Things keep changing though as you as know with dysautonomia, it's worth a shot! Did they do seizure test on you? There was a House epiosode, where a nurse did things and was in a type of a trance but didn't remember what she did. It was some sort of eplisey. Also, have you paid attention to what you've eaten, to see if there are some allergies going on. It could be a real bad reaction to something too.

I didn't take it that way. I'm just trying to learn too. I'm trying to figure out why even though the stretchy vessels there is the possibility of the volume problem. Haven't had the test, yet. Just know what my symptoms are and how my body is acting. Allot of what I read here is way over my head, but as I continue to learn ---maybe some day I can keep up with you brain wizzies. Hope to get your knowledge and figure out the puzzle along with you.

Well, I do have EDS. But, I also feel like I don't hydrate properly. I'm fairly new to these issues and haven't had all the diagnosisng that I need. I don't know why EDS was excluded from your question. So, that's my question. What does being dehydrated and not properly hydrating have to do with EDS? Just as a side note: I took one of the members advice about the Elixir electrolyte tabs. It is seeming to help with the hydration issues. My hands don't feel like sand paper any more. Before, it didn't matter how much I drank, I didn't seen to hyrate and have to run to the bathroom all the time. My hands actually feel soft and not all dried out. I've only had one tab today.

Glad it wasn't something that was life threatening. I think your readings are pretty typical for POTS. Mine increases any where from 40 to 80 points on standing. At least your BP isn't running too high. That's a good thing. I think once you get to the specialist you will get more answers. Keep searching you will figure it out.

I figured out the hard way that magnesium made my BP drop too. I had been taking it at night and would wake up in a panic and have to get up and walk to get the BP up. Of course, the heart rate would be really high trying to elevate the BP. I found that if I do reverse presses it helps. Like stand in a doorway and push my arms real hard against the door frame. Or pull up on the kitchen counter top. It will raise your BP up. See if it helps for anyone else. So sorry you're having such issues. It's so good that at least one person knows what you're dealing with. I've been in two different hospitals in the last two months and no one knew what they were dealing with or knew what to do. It's frustrating for them and you. I think the IV's helped more than anything. Try the Lexapro, but remember we need less dosing than most. Sometimes even the smallest amount will be too much. Tell them you will try a 1/4 or 1/2 to start with. It can be cut with a pill cutter. Hang In there! Maybe you will get the help you need now.

I don't know much about insulin resistance, but I know too much about reactive hypo . That occurs after you've eaten the wrong type of food, anything sweet or composed of simple carbs: white bread, rice, potatoes, pasta, corn. Our bodies burn through the food too quickly, leaving us with dangerously low blood glucose way too soon after eating. If we were to do a fasting blood glucose test, after 8 hours, we would have very low readings, like 60 or less. Most folks start feeling sweaty, shaky, dizzy, tachy when blood glucose gets below that. Folks with insulin resistance, are just that- resistant to insulin- so their blood glucose stays too high. The insulin isn't able to do it's work. They would have readings like 100-125 after an 8 hour fast. They are typically symptom free, with the exception of dark rings around the neck, knees and elbows. I think the overlap comes from the idea that reactive hypoglycemic folks do get the initial high blood glucose after eating the above mentioned food, but it's very short-lived and swings dangerously low shortly after eating. Folks with insulin resistance can maintain that high blood glucose simply because of the insulin resistance. The best help I got was from understanding the difference between simple and complex carbs. Simple carbs burn like paper. Complex carbs burn like coal. A doughnut will make me sick an hour later, but whole wheat toast can sustain me for several hours. Poppet (and others with dysautonomia) seem to experience hyporeactive glycemia because we have erratic GI tracts, that work in fits and starts. Chronic or constant D will most certainly cause hypoglycemia as the food is used way too quickly. I'm sure better explanations will be forthcoming Well, I don't have the dark rings at all. Never have had that. In fact, I have vitiligo --losing skin pigment color. My Blood Sugar doesn't stay High after I eat. One thing I was told to use was GTF Chromium and that brought any highness down to normal. So, I think I'm doing good right now. But, I have had the horrible drops and it can be just because. I don't associate it with anything I've eaten. You can feel it coming and you can't make a decision as to what to eat. You get real brain foggy and irritable. When my husband sees me going into it, he sits me down and gets me something to eat and after awhile, I'm better. Diabetes and Hypoglycemia run in my family, so I have to really watch what I eat. And not go to long between food.

I read the whole thing, but most of it was Greek to me. And I'm not Greek. But, from what I get from it. It seems that this produces more collagen, which would be more indicative of Scleroderma. In this illness, there is too much collagen and the tissues get really stiff and hard. Sometimes the skin will split and they have to massage it with creams to keep it supple. With Ehlers Danlos, there is a collagen problem but it doesn't cause tightness, but laxness. It's sort of the opposite. This particular study may still be relative, but my feelings is it would apply more to scleroderma. Ehlers Danlos has been in fact proven to cause POTS issues in people. I'm one of those.

For one thing, salad is absolutly THE HARDEST thing to digest other than corn. You should be eating rice, bananas etc. easy to digest foods. Not too much sugar though because as suggested you probably do have a very bad bacterial overgrowth. (Bacteria feed on sugar.) This overgrowth can lead to colitis. If you are truely going every 15 minutes, it sounds like you've already got it. This is how my ulcerative colitis was. They have to get the bacterial overgrowth corrected very fast. Can you go get some liquid probiotics or kefir? I know with it that bad, you are probably crawling to the bathroom. (I did.) I don't know if you should wait until tomorrow to go to the doc. You can dehydrate very fast and that's not good for your POTS. If it's that bad it can be deadly. I'm not kidding. They said as bad as mine was most people die within 2 days. I was at 5 days. I had to do chemo twice to get it stopped. You have to pay attention to your body, but this is what happened to me. The doctor I saw was a GI doc. Don't eat hard to digest things, like salad or red meat etc. Keep us posted. Hang IN There.

I'm trying to figure out the difference between reactive hypoglycemia and insulin resistance. If I'm understanding it properly, reactive hypo. happens when you've eaten a large number of carbs, then you get the drop in sugar due to the carbs. With insulin resistance, you can get this due to a malfunction in your body that can happen regardless of the type of foods you eat. Am I understanding this correct? I have the issues without eating, therefore the insulin resistance. Foods don't cause the issue Can someone, give me some more insight?

I got my comment on the insulin resistance a little mixed up. The best thing to do is go on Wikipedia and type in insulin resistance. It will explain it better than I can. With diabetes, you can have high and low blood sugars. When I was younger my sugar dropped into the low 40's during a glucose test. I nearly passed out. But hypoglycemia can, and a good portion of the time does turn into diabetes. The thought is there is an insulin resistance problem and the insulin overproduces. So even if it is hypoglycemia at this point, the reason could be the insulin resistance issue. It could very well turn into diabetes later in life. Soooo, if you do a good diet NOW, maybe you won't have isses later.

It depends on why you're taking it. If I feel like I'm getting sick, I'll take 2 to 4 four times a day. Also, another little tid bit --my other line of defense is apple cider vinegar. Vinegar will kill strep in 24 hours. If I feel a sore throat coming on -- vinegar in water with a little honey (another natural antibiotic) warmed and drunk. It actually taste pretty good.

You could be developing ulcerative colitis. I had this and it was induced by too many antibiotics. I nearly died from it. But, it wasn't just after I ate, it turned into the dry heaves, only from the other end. The greasiness could indicate the gall bladder. But, it also could be that you aren't digesting fats properly. You need to get good bacteria into yourself REALLY FAST!!!!! Before the bad totally takes over. Drink Kefir, it taste like a milk shake. It is like liquid yogurt. Also take a good probiotic and massive amounts of it. For a possible infection, Olive Leaf is very good. It's a natural antibiotic. The other thing that may be beneficial if you are malabsorbed is a good full spectrum enzyme. I had to learn allot about natural things, to save my own life. Because what the doctors did to me nearly killed me more than once. As for the blood sugar. It could be insulin resistance or Syndrome X. It's where you're not diabetic, but your body is trying to go into it. You don't process glucose properly and the insulin isn't being properly taken up by your body. I have this too. So, what is the answer -- a diabetic diet. It will make you feel better if this is what is wrong with your body. Only one way to find out. Besides it's really a better way of eating -- much healthier, but is hard to do.

I was told by a doctor that they don't like people to use senna because if they do a scope it could make it look like you're bleeding because it turns the stool really dark. For some reason (that I don't remember) they felt the long time use of it was not good for you. I have found that Benifiber is very beneficial. It doesn't bloat me like psyllium. You can't taste it, you can even mix it into your morning coffee. It has no awful texture. It will clean the intestines and helps with elimination. The only thing is you have to be sure and drink enough liquids throughout the day. (Not hard for us POTS people.) I was also told fiber is one of the best things to help keep the blood sugar under control and it will help you to lose weight, if you need to lose weight. Fiber will help clear out harmful bacteria and get rid of parasites. Sounds like a good thing to me. Best one I've found. You may also try a good probiotic. It helps put the good bacteria back into your intestines and helps with absorption issues.

If you want to PM me, I'll tell you more.

I think our bodies have a time clock and when it is time for you to go into menopause, you will. Just my theory. As for synthetic hormones, most of them are just one kind of estrogen. There are three kinds. If you only take estradiol (which is the kind most pills are) you can have all kinds of adverse reactions. Estron is another one that is considered not so good. (It is an estrogen that is stored in the fat.) But Estriol is considered to be a good estrogen and has been proven to prevent breast cancer. In Europe most women use this estrogen alone for menopause symptoms. When I finally, just went to the one estrogen, I felt so much better. I don't get the issues that I had when on the synthetic estrogen's. You can only get this from a compounding pharmacy. It is used transdermally and is bioidentical. If you have your uterus still, you also need progestrone. Not progestin (this is a synthetic form and has horrible side effects.) The best book I've read on how to use these hormones is by Dr. Johnathan Wright. He has recently written a new book too. (I haven't seen that one.) Also another good book is "What your doctor may not have told you about Perimenopause". That one is really explains to you about the hormones and how they work.