sue1234

I have a 1 cm adenoma on my right adrenal, and I DO still take a possibility of a pheo seriously! I have been on a pheo forum for about 4 years, and I have learned that alot of pheo people take years to get diagnosed. It is literally not something that pops up overnight. So, I theorize on that forum that if they are positive when the tumor is around 3-4 cm., then when they were 1 or 2 cm. they were NOT positive yet, but having symptoms that impacted their lives. That's what makes me think if I'm negative now, just keep tested every so often to make sure I'm not turning positive. It would be a great answer to all my POTS stuff if I knew it was something that could be surgically removed and cure it all!

My brain is not working this week, but I hope more thinkers work on this. I know since I quit sweating, I have continually run into acetylcholine(and it's nicotinic and muscarinic receptors) in looking up causes. I would like to know how it might relate to POTS. My pulmonologist is testing me for myathenia gravis, which is related to acetylcholine. Although I don't believe I have MG, I think some relative of it could be a possibility.

Futurehope, Thanks for the info. I think I had one of those about 10 years ago. I don't remember what the results were--that was back before I requested copies of everything I have done. I bet that's what I have, probably along with fungus, as the Nystatin really seemed to help my bloating. When I asked my Nurse Practitioner(gi) about possibly doing the breath test, she just said that that test is not accurate anymore! I didn't know if I actually believed her or not. But, since you said that you had it, then I am going to check into it more. You know, it was a doctor at this NP(gi) that originally saw me 10 years ago for bloating. Maybe she is just saying that because they originally did the test and maybe it was positive and they didn't treat me! I am going to ask for copies of those old results to see.

Congratulations that you are sooo close now! I'm sure they have, but have they been checking your iron levels? I know at the end of my last pregnancy I was a little lightheaded, they did labwork, then told me to take double my iron intake. You never know.

I would like to know how they diagnosed you with bacterial overgrowth. I believe I have that and the doctor just glazes over my discussion of it. I bloat sooo bad, and it is definitely in the upper gi tract.

I dream horrendous dreams almost every night! And I remember them vividly. One of the most recurring themes is I am somewhere and find I have to walk a great distance to get back home. Or, I have to drive to get back home(I don't drive anymore). Almost all my dreams are nightmares, running the gamut of everything you might see on tv in any given day. It's awful, and the first few months, I let them bother me. Now, it's just another dream, I think about it, then go on with my usual day. I take xanax at bedtime, but I've taken it for years. I just started the bad dreams within the last two years, so don't really know what might be causing it. I know my female hormones are screwed up.

I get the red palms, but mostly when I get hot. My fingers also swell at the same time. I think it might have to do with pooling, but I don't know that for a fact. I am up to 8 minutes myself on walking. Then I get that dizzy, lightheaded feeling and have to stop.

I live 3 hours away, but haven't found a POTS doctor yet. I will PM you about someone in Houston that does autonomic testing, but I don't know anything about him. Let me know if you find one that really understands it!

If you've had mixed cortisol results, it might be a good idea to ask your doctor to do a cortrosyn stimulation test to make sure your adrenals can stimulate. If not, then you would need some kind of treatment. From what I understand of the adrenals, Addison's happens when something like 80 or 90% of the glands quit working correctly. So, I guess I could see where you could have a low, then a normal, and so on. It could be that your glands are almost there, or if it is a pituitary issue, then maybe hypopituitary. That would mean the glands are not getting the message to put out more cortisol. Gaining weight is usually not an Addison thing, as MOST people lose weight. But, you never know.

In mid December, I thought I was going to rupture an internal organ from the horrendous bloating! It was seriously that bad. I had trouble breathing and could not zip my pants up(that today ARE zipped AND buttoned!). That shows how expanded my belly gets. I would like to point out that I had a BM everyday, so not from constipation. But, I did also have horrendous burping, like gas production, but from the upper end(sorry, TMI). I had an old prescription for Nystatin for intestinal yeast that had been prescribed for me by a "natural" MD. Within 24 hours of taking it, the bloating was diminishing. I then vowed off of outright sugar(still occasional white flour or potatoes), and actually started drinking diet drinks, even though I look at sugar substitutes as being "evil" for the body. Within a few days of starting Nystatin, my bloating was pretty much all gone, and I HAD SOME ENERGY! So I started a walking program--out my front door and up and down my walkway for a total of 8 minutes! After a few days I could do the 8 minutes without running out of breath. And no lightheadedness! Then, I started my almost non-existant period. That makes me have a VERY hard time waking in the mornings, and I feel sleepy until late morning, but then I get normal. I have been doing slight cleaning in my house, and even working on some business stuff that I let slide. I have even been standing up and cooking, and not getting lightheaded! All I have done differently is taking the Nystatin and giving up outright sugar. I know I have issues with sugar, as I get hypoglycemia off/on all the time(and for many years). Did an overgrowth of intestinal yeast make me lightheaded? I know there is that whole natural medicine that talks about intestinal yeast and all the symptoms it can cause. Did I just prove that it can make me lightheaded everyday? And quitting the majority of sugar would then keep it at a low growth state. I have always said I feel drunk. Does yeast give off some kind of alcohol byproduct that might make this happen? I hope someone has had some kind of experience with this and might start a discussion on this. I just know that I will not eat or drink any sugary thing if I can feel this good! I even avoided it all throught the holidays!

Sorry you are in a bad episode! I know how very FRUSTRATING it is to feel that way and not know why! I really believe female hormones can make things alot worse, or better if they are optimized, I guess. I just don't seem to ever get optimized! I have about 2 periods a year, and they can make me feel my worst AND my best within a week. If hormones are the case, just know it will swing into a better place soon!

Congratulations on your baby girl and, apparently, not too bad of a recovery(POTS-wise). I missed good sleep with all my babies, so here is to wishing you an occasional great sleep! With two biiiggg babies, are they monitoring you for diabetes? I know there is a correlation between big babies and type-2 diabetes.

I was reading up on progesterone, and ran across an article about pregnancy, as it(progesterone) is the "hormone of pregnancy". I know I react badly to combo replacement, but can't try estrogen alone because I have a uterus. If I knew estrogen was the key to feeling well, I would have a hysterectomy in a flash! I was reading up on breathlessness, as I have that symptom, and others here were just talking about that yesterday! I have had a constant ovarian cyst that goes between 2 - 4.5 cm. No pain. But, I always wondered if it was putting out progesterone, like a cyst would do right after you got pregnant. I ran across this article, which is NOT a medical journal, but answers from a doctor, and he said this about progesterone: The pregnancy hormone progesterone also makes your body adapt the way it absorbs oxygen in your bloodstream via your lungs (Murray and Hassall 2009:204). As a result, your body becomes much more sensitive to the levels of carbon dioxide (the gas you breathe out) in your system. These changes mean that your body does a better job of processing oxygen and carbon dioxide. You're breathing at the same rate as you did before you conceived. But now, with each breath, you breathe much more deeply (Bothamley and Boyle 2009:141). This is thought to be one of the main reasons that you feel breathless (Jensen et al 2009, Bothamley and Boyle 2009:141, Murray and Hassall 2009:204). So then I started reading about estrogen and how it effects the cardiovascular system. I came across an article that talked about nitric oxide(?), NO, that Rama always talks about(and I'm still striving to learn about!). This did come from a medical journal, and really made me think. http://circ.ahajournals.org/cgi/content/full/102/15/1828 If you read the first three paragraphs under the Introduction, you will see that it explains generally how estrogen/progesterone affect the renin-angiotensin system and the vascular tone. I might ask my gyn if I can try 1-2 months of estrogen only and see what happens to my symptoms. I remember about 10 years ago, a "natural" MD prescribed me some progesterone pills(took them for 2 months only), and I noticed I started getting facial hair AND I was hotter after taking the pills. That is a big issue with me--soooo hot!!

I had my first gray hair at 28, along with an episode of severe anxiety, so always felt some "illness" was starting up but didn't know what. I looked like Lillian off of the Munsters, with the white strand, but I had short hair. I colored my hair once in my 30s, but didn't like the odd color on the white, so I don't bother. I'm used to alot of gray hair now(50)--it's just me. I had read also that it could be related to autoimmune, but I read it might be associated with pernicious anemia, or B-12 deficiency. I do take B-12 shots, not because of any diagnosis, but a "natural" MD let me start them 9 years ago to see if it helped my fatigue, and it did seem to help.

Sorry you had such a rough month. Thank goodness you don't have any after-effects from the wrecks. I was wondering how you were doing with the celiac and if you started eating gluten-free yet. And, of course, wondering if that even made a dent in how your POTS is doing. I can't believe I have to wait until Jan. 8 to get the results of my intestinal biopsy for celiac. It will have been about a month!

Sara, I'm so sorry your Dad is not here. I am sure you miss him very much. The only thing I can say is to do only what you CAN do. If you try to do more, your body will let you know. I know how you feel. I have gotten where I keep Christmas day with my husband and kids only. It is way too much hassle to try and please everyone. I HAVE to look out for myself, as others don't understand how POTS affects the body under psychological(holidays) and physical stress. Have a great holiday doing whatever works for you!

That's great that something so important to/for you was able to be done and you went through it well. That ought to give you a good confidence boost to know you should be able to handle similar experiences in the future.

Maggie, glad you are now well and recuperating. Take it easy while your body heals.

Maggie, glad you are now well and recuperating. Take it easy while your body heals.

I am almost the opposite. My FSH and LH go up into the 50s and I am told I am finally in menopause. At the same time, I am having my yearly period. So, thinking this is the last, ten months later now I have ANOTHER period. I've been doing this for the last 4 years. I have one largish cyst on my remaining ovary and wonder if it is putting out too much progesterone. Progesterone is the hormone that keeps one from having a period, so I wonder. Maybe it is too much progesterone versus estrogen for me? I do have a growing facial hair problem. I don't know. I was fine in my life until my periods became extremely wacky, and I went my whole adult life without being on birth control or any hormonal influence. Maybe estrogen/progesterone and their ratios play a part. I hope more people discuss this.

O.k. If there are other people with the "symptoms" that can occur regardless of being upright or not, then what is the factor that makes us vulnerable to increased norepinephrine, no matter what? This phenomenon makes POTS just sound like it is another "symptom" of the real issue underlying this. So, what is the underlying issue for people like us? I am still being investigated for having a pheochromocytoma, as my right adrenal has an adenoma that grew from 7mm last year to 1 cm this year.

How did they do the blood volume test? I have a cardiologist that monitors with the various testing, HOWEVER, I keep going to an endocrinologist as I honestly feel that is the basis for my POTS. I do have odd endocrinological things going on.

It just dawned on me yesterday, that yes, I have orthostatic issues and that is why I am on this forum. When I stand, the whole cascade of autonomic things begin to happen--faster heart rate, higher b/p, sweating, shortness of breath. However, if I am sitting, things are pretty much normal. BUT, along with developing POTS, I have developed no tolerance for ANY stress. So, even if I'm sitting, if I am in even a barely stressful situation, I get all of the symptoms that I get while standing! This can happen for what most people think are not much of a reason. I did NOT have this before POTS hit four years ago, but now I can be sitting and get stressed, then feel like I'm going to pass out. Twenty or so years ago, I had some panic attacks and that felt different. I never felt like I was going to pass out, so this is not a panic attack. It just feels like overactive adrenal glands to me, in an adrenaline way, not in a cortisol way. Anyone else?

Funny you should mention this this morning as I was just researching the "net" about progesterone. I have about 1-2 periods a year, and the week before my period, I get BAD upper stomach bloating. I've had a scope for celiac and h.pylori, waiting on biopies. These would both explain bloating in general, but NOT the worse bloating I get before my period. I had an ovary removed 10 years ago because of a bad looking cyst that, on pathology, turned out to be a corpus luteum. I also have had an ovarian cyst for a few years on my remaining ovary, which I assume is also a corpus luteum. In nursing school, we learned that the corpus luteum puts out progesterone to sustain a pregnancy until the placenta can produce its own. So, even though the doctors tell me my simple cyst is nothing to worry about(I don't worry about it!), I wonder how much hormone it might be putting out! I know progesterone is the "relaxing" hormone, so that would probably explain my lazy gi system. But, I was wondering what other effects it has on the body besides female issues. I was reading it plugs into the same receptors as aldosterone, so maybe there is a connection there. I tried bio-identical hormones twice before, and just lose any bit of energy I might have had. They also seem to make me more bloated, but not sure which hormone is doing that. I hope more people chime in on their hormone experiences.

The 72-hour fast only lasts as long as your body lasts. In other words, if at 6 hours you are having symptoms, they will take all the blood for testing, and as soon as they see a low glucose, they quit. They test your levels before you start the fast, and then when symptoms start. They are also looking to see if you are producing too much insulin that would keep causing your glucose to be lowered. If you have low glucose in the face of an abnormally normal insulin OR high insulin, then they look for the insulinoma on the pancreas, an insulin-secreting benign tumor. You remove it surgically and you are then all well. If you would like to read on a forum of just insulinoma people, here is the link. It seems you have alot of common symptoms with alot of them. http://www.unboundedmedicine.com/2006/01/1...-triad-surgery/ Fainting is a serious sign when accompanying low glucose and needs to be addressed.