futurehope

Sorry to bring this subject up again but I thought I'd chime in. I suspect that the offensive odor problem you are having will go away if you are put on a course of antibiotics. I'm not advocating this. I'm saying this because I'm suspecting that the BV (bacterial vaginosis) Dx is the correct one or if it is not that, it is something similar. There is no need to continue having this symptom without being helped. I would definitely bring this up with a gynecologist.

Jacquie, I'm so sorry to hear about your headache problems. While you are waiting for an appointment, have you tried to figure out what might be causing them? Is the diet you are on relatively free of additives? Are there any medications or supplements in your routine? Are your sleeping habits all right? How's the stress? I just thought I'd send healing thoughts your way and I hope you can get to the bottom of this.

Just a thought. You might be feeling different "when you sleep through" because of the AMOUNT of sleep. The difference may have nothing whatever to do with the florinef. Conversely, you might be feeling better at 5 AM because you are getting LESS sleep, not because of the florinef. Just something to think about. I don't know in your case. What I do know is my body is extremely sensitive to the amount of sleep I get. If I get too much, I feel more POTsy.

If a pill is going to work, you'll notice a difference after the first pill.

I am one of those people that needs medicine daily for GERD. I've noticed that prilosec 40 mg 1X/day (a very large dose, which is a prescription), makes my already "spastic" colon MORE spastic, i.e. more irritable bowel symptoms. The nexium 40 mg 2X/day makes me REALLY tired, like I don't want to do anything at all. So, if I can, I TRY to take only one a day unless the heartburn is really bothering me, then I'll take the second pill --- but I really need the two/day. If I am taking the 2 nexiums a day, I can count on the fact that I'll be laying around and not doing much at all after 3 - 4 PM. But, like I said, I really need it or else the HB is so bad I don't sleep. Maybe you'll be one of those people that has no side effects. I hope so.

With me, a 99.3 could be normal or I could be sick. Very often I can tell the difference. If it's an illness, there are other signs like, worsening fatigue, headache, I feel sick, etc. So with me, it's a combo of the temperature and if I'm feeling poorly (more than usual that is).

I have no idea what it feels like to be "normal" regarding digestion. If I ever have been normal, those times are few are far between. I've had problems since the age of 2. I'm 55 years old. I often tell my husband and mother that they do not know how lucky they are that they do not have to THINK about their GI tract all the time. I don't have a choice. My GI tract reminds me frequently to pay attention. Oh well..SIGH

I agree with Dizzy that the test was probably for antibodies to ganglionic receptors. The good news for you is that in order to do this test at Mayo (I had it done and came out negative), there is an entire PANEL of blood work that is tested for autoimmune stuff (paraneoplastic autoantibody panel). So, maybe they'll see something else in the process. For me, they found that my Achr antibodies were elevated. That denotes myasthia gravis, but as yet, I do not display symptoms so I am not being treated. Anything you can find out can end up being useful.

I'm getting one and thanks for reminding me. I'll have to look up where they are being given. The grocery store here gives them before my doctors do. I've gotten a flu shot each year for the last 34 years (I think).

It made me feel very poorly. (In my mind, it was like being poisoned.) My doctor seemed to think that I would be greatly helped with my GERD. Wrong! Everyone is different, though.

I usually say that I have a medical condition that makes it difficult to stand or sit for any length of time. I can tell by looking at them if that is sufficient. If they want to know more, I might say that my blood tends to pool in my legs instead of going up (I point to my head) due to problems with my autonomic nervous system, and it makes me feel bad. Anyone who is still curious gets to read one of my POTS brochures ( which I always have with me) from this site. In my experience (4 years worth), most people really don't want to hear too much.

Just to add my two cents worth..... Before I was disagnosed with POTS, I was undergoing and EDG (a scope that is used for looking down into the esophagus through the stomach). I've had too many to count. During this one, the doctor said that I had an arterio-venous malformation that had been causing some bleeding. He cauterized it. So, on top of my POTS becoming worse, I was bleeding and didn't know it. I was also trying to work. Talk about dizzy. I'm explaining this because, the GI tracts is one of the first places doctors look when there is unexpected blood loss. Of course, there is always the usual female stuff. That can cause much blood loss as well.

Inability To Sweat, how do I know if i have it? Answer: Sweat test The test involves covering you with a powder that turns purple where there is sweat. You are then subjected to a higher than normal temperature (I forgot for how long) to see where the powder turns purple. My neurologist performed this on me. In my case, he found some neuropathy in my toes (of all places) and who knows if this will travel up my legs?

I can't make your decision for you but I will tell you about what happened to my 80 YO mother. Her gallbladder had stones, one of which blocked off the common bile duct. It caused sludge to build up in the duct. She HAD to have an ERCP to get things straightened out or she would have had constant problems with no end in sight. In other words, the ERCP was a necessity. She might have had mild pancreatitis after. I don't remember, but it couldn't have been too bad as she came home from the hospital soon enough. Though I remember they wouldn't let her eat or drink for a day or two (or three?). On the other hand, if she hadn't had the ERCP and removal of the gallbladder (done on two different days, the ERCP was first), she would have had constant pacreatitis/gallbladder problems. Good luck. It's a difficult decision. Sometimes an emergency leaves you no choice. Maybe you can find out what COULD happen to you if you did nothing, and the odds of it occuring. That might help you make a decision. Will you land in the hospital with the shincter of oddi problems? Will you get pancreatitis from that? Will you lose weight and forfeit your health? What emergency, if any, could occur if you did nothing? etc.

Sounds really bad........So sorry... I'd stay away from the Listerine.

Have you done a little bit of experimenting to see if the heavy fatigue has anything to do with what you ate? Specifically, if you were hungry and suddenly ate a very high carb food, the change in blood sugar could affect you this way. Or maybe, there are certain foods you can't eat (without feeling poorly). Also, do you tend to eat "junk" foods laden with sugar? That can certainly give you fatigue. Have you tried eating six small meals a day instead of 3 big meals? Just some suggestions.

Bec, No its not the same as Crohn's disease or intolerance to gluten. Your Mom's doctor probably thought you had sensitivities (or allergies maybe) to the foods you mentioned. Maybe you do have nasal allergies to molds? I know that one "alternative" doctor I went to suggested the same to me a while ago because, as she put it, I was allergic to mold, so my gut was probably also sensitive to fungus (on breads, fruits) and mushrooms. I really don't know if that is true, (about foods potential to affect my health) but I know I don't do well with yeast (in breads) though I still eat bread. I know not to eat too much bread and I really don't eat mushrooms that often, and I tend to avoid fruits. Mainly, with the bread, I try to eat it fresh and not too often. Not very healthy sounding. Oh, well.

In my historyof being on this forum, I believe that you are not the first person who has come up with this idea. I remember someone else a while back saying the same thing, namely that, if they got out of bed earlier, they felt better. You heed to find your ideal amount of overnight bed time. The irony is that we think we need more rest because we feel so poorly. But, I suspect it isn't really sleep that we need. We need breaks from activites. And less time in bed. Keep it up and let us know how it goes.

Firstly, never, ever clean a stove first thing in the morning. That's a big no-no. Unfortunately, you've learned the hard way. Secondly, after years of pushing myself to clean the house, I've finally decided that I'm going to pay someone else to do it and free up the precious little energy I have for something else. Thirdly, yes we do have to stay focused on what we can do. If we focus on what we can't do, we'll get depressed and feel worse and it won't change anything. But as someone above said, sometimes we can push ourselves and be pleasantly surprised at what we are able to do. Lastly, I've become a "commitment-phobe". I'm totally unreliable and do not want anyone depending on me for anything unless it's necessary - like kids, grandkids, pets, husband, etc. I really dislike this aspect of POTS, but, unfortunately, that's the reality of the situation.

I believe I have autoimmune issues. I know I have elevated Achr antibodies - antibodies to acetylcholine receptors, which denotes myasthenia gravis. But, I have no symptoms other than the bloodwork? I also have interstitial systitis, a bladder inflammation of unknown origin which I think may be autoimmune. I also have chronic gastritis - another inflammation, this time in my stomach and I suspect something autoimmune. All in all, I'm a puzzle. My mother told me she just read an article in the medical section of her newspaper saying that autoimmune stuff manifests itself very differently in each person and that doctors don't know what to do about it. Now, I'm paraphrasing what she said and I'll have to read the article myself to see what it says. In any event, I think that in me there is a link between the autimmune stuff and my POTS, though I came back negative to antibodies to ganglionic Achr antibodies (a marker in some serious POTS cases).

1/2 teaspoon of sodium bicarbonate (baking soda) in 1/2 glass of water does wonders. And it helps the heartburn too. I can tolerate some salty foods as well but I steer clear of the monosodium glutamate.

I can barely contain my enthusiasm. I hope they find something to help sooner rather than later. (I'm 55 YO) I'll be the first to celebrate. It would be great if they could figure out what caused this as well to spare other people from this. Thanks for sharing. P.S. I'm convinced that a 4 month course of Remeron put me "over the top" in terms of POTS symptoms. Before the Remeron, I was a functioning person. After, a disabled person. Remeron is an anti-depressant given to me to help me sleep. What a mistake.

I would guess that it would be very hard on your stomach to take the pill before bed. It may even be causing your problems. Vitamins are very strong. Now, the fact that you can't keep them down, you will have to come up with another method. I would suggest stopping the vitamins before bed to see if that will help ease up the ulcers. Heck, if I did what you are doing, I would have ulcers also and my stomach would be raw. I once went to a "health food" Dr who gave me vitamins in an injection. I don't know if regular MD's can do this?

Jacquie, You probably don't have cancer. Not all tumors (or lumps) are cancer. It would really be helpful to you if they do find out what's going on - so hang in there.

My understanding is that the three tests you mentioned have nothing to do with blood volume. That is a separate test (which I've had). I wouldn't worry about your results unless you feel the numbers are way out of range.