sue1234

ANCY, I have not used IVIG. I'm hoping with the latest research going on regarding finding elevated autoantibodies in POTS patients, maybe we as patients can have this option of having IVIG infusions to see if treating the autoantibodies helps. After almost 10 years of waiting for some kind of breakthrough, this is what I'm waiting for. I'm so glad you had so much improvement after your 5 infusions!

Ancy, you may have already explained in another post, but what tests or condition had your neuro say that IVIG is needed? I only ask because we all know how hard it is to possibly try a treatment, but can't because insurance won't cover it stating it isn't used for this or that condition. So, any insight would be helpful!

H&S, I'm pretty sure my renin has been tested, just don't remember off the top of my head. Most likely it was normal, or it would have been something I remember like my other abnormal labs. Thanks for the fructose tip. I'll have to see if I see a correlation in my diet vs. symptoms!

Yes, heartandsoul, please let us know what you find out. I have low adh and low aldosterone, also.

Katie, that's what I was just thinking regarding the clitoris, that it seems to be retracted due to possible swelling in the area. Kellygirl, I hadn't thought about it until you mentioned it, but yes, the clitoris seems to be lost! It has somehow burrowed in more, but I'm thinking like Katie about the rest of the area swelling.

I have had horrible bloating for about 15 years. I've been to numerous gastro. doctors, but none have been any help. I did find that taking in any kind of probiotics makes me just blow up like crazy! I have been to the ER a couple of days after thinking I could handle a little yogurt. What happens to me is, my abdominal muscles seem to be crampy-stiff, and it seems to shut down the intestinal movement. That's what I think anyway. Then, when nothing moves, it just grows and grows. In reality, they say people pass like a couple of pints of gas daily. When I'm at my worst, I can go days or a week without passing any gas. Imagine those pints building up, and there is just a limited amount of room for it to be. When my bloating is really bad, it seems all my gi contents seem to push upwards into my diaphragm, and I end up really short of breath. That is what makes me not be able to handle it, and go to the ER. I know with elevated norepinephrine levels due to hyperPOTS, it slows the gi tract in general. So, I guess that is why everything is slow and just sits and builds up.

katybug, I can say the outer labia is not swollen and hard like when I was pregnant. But, to be honest, and we are on a delicate subject, I feel like that whole area is swollen and larger in a general way. I'm talking like when I stand in front of a mirror after bathing. It doesn't hurt like varicose veins, just seems fluid-swollen, so maybe that's an area where dependent swelling happens on a daily basis? I have no clue. And, of course, how do you find out if you are "normal"? I used to not have this swelling. And, as mentioned in my first post, the inner labia has shrunk, which is expected for menopause.

One of the first neuros I went to for POTS randomly asked me if it was more difficult to have an orgasm. I wasn't expecting the question, and I'm sure I blushed, as my husband was in the room, along with two med students. For a split second, it dawned on me that, yes, it is much harder to have an orgasm. I don't know if she was thinking from a hormonal basis or a structural basis, I didn't ask. I have been in menopause for about 5ish years. My "parts" have shrunk, as expected. When I was pregnant with each of my children a couple decades ago, my "parts" would really swell, and it was related to varicose veins. I don't have any varicose veins anywhere else, so it was surprising to me.

I have found the most caring and wanting to try to find out the problem is from any NP I've seen. Unfortunately, I don't think they have enough "medical" background to really get to the core of this. I say that because most doctors don't either! I've been to many specialists for this in the last 9 years. I have to say that endocrinologists have done the most testing, by FAR! I have been tested with many complicated and in-depth tests regarding endocrine issues. I feel like they were important to do, too, because they ruled out(or still wondering about one!) any endocrine causes for POTS, which definitely could be other people's issues. The next would be a neurologist. I feel like they try and listen more to my symptoms, and try to understand them in the POTS context. Cardiologists are, for me, a one-trick show. They all look at the electrical activity, the heart structure, and then perform the TTT. After all that, they all recommend a beta blocker. That's it. Same thing, everytime. (I don't really handle beta blockers that well). I don't have any even look like they are thinking outside the box. I must say, the specialists(cardiologists) specifically doing work in POTS do more testing, such as the nuclear scan and such.

Chaos, what is SCiG?

That describes me. I always had itching worse/first/mostly in the upper back. I could not understand why that specific area, but at least I see it is the most common area. This has mostly disappeared for me, after having it for about 5 years. I need to do a post on my improvements.

I just want to update that the cardiologist who researches in VIP was a bust. He did not have hardly anything to say about VIP, and offered me an antidepressant to "reset my nervous system". It was disappointing. And, I'm excited to know someone else here has high VIP levels! I'm not alone! And, maybe a clue!

I have had high a.m. cortisol(per bloodwork) for a couple of years. My latest was around 25. Technically, they'll probably want to test her for Cushing's disease by starting out with a 24-hour urine cortisol. That is what my doctors have done over the last few years. If that is elevated, they'll move on into more detailed testing. My urine cortisol is low-normal, so it rules Cushings out for me. For me, I think it is just the stress of getting up in the morning and not having eaten before labwork. My worst part of the day is ALWAYS morning, and then I feel better as the day goes on. So I feel, either due to POTS or maybe not, I just have a hard time in the morning and my body is trying to help by spitting out cortisol. OR, do I feel so bad in the mornings because my cortisol is higher?? I have no exact clue, but that is my opinion!

Hashimotos is an autoimmune reaction against the thyroid. My thyroid had swelled and shrunk so much over the years, the surgeon that removed it said it was like shrink-wrap over my trachea. I had that removed in '08, and since then I've read it can flare up due to a gluten sensitivity. Well, I later found out I had antibodies to gluten, so I wish I had known that back then to get off gluten and see if my thyroid would have settled down. I had the positive Lyme in the tests that are NOT CDC, and in the CDC, I did not have the required 5(?) that were positive. I also show chronic reactivated EBV. Now that one I could believe could be an issue! But once again, main stream medicine doesn't believe in it.

I drink because I'm so thirsty! I'm not sure if it is a real thing, or because a few years ago I purposely increased my fluids and now I'm just used to that amount. Before POTS hit me in January 2006, I had no limiting symptoms. I had had issues with Hashimotos that affected my energy levels, but nothing that affected my ability to get out there and go/do what I wanted. I spent my whole life from ages 20-40 with a normal blood pressure of 90/60, but I never felt lightheaded or anything due to it. I've been diagnosed with chronic Lyme by an alternative MD, but not sure if it's "real"(I've become skeptical of some of these diagnoses, but do keep up with the latest on all that). What I mean by that is, my husband and son last year had fever and a ground-zero area on their skin that the doctors determined was from Lyme. They had this for 2 weeks and had to take a couple rounds of antibiotics. They are both fine now(thank goodness!). I had NO such episode, other than I pulled a tick off of me at various times in my childhood/early adulthood. As everyone I know, we all played outside, all the time as kids. We all got ticks, and almost everyone I know functions as a normal, working person. So, I'm not sure if Lyme is MY issue, but I do know it is for others(such as you, and how my husband had it).

I have to urinate ALL the time, but I also drink ALL the time! So, I don't know how much it all affects me. I cannot function, as in I don't drive and get work at a job.

The Cortrosyn Stimulation Test is what they do. They take a baseline of your cortisol levels(have those been tested in the morning?), then inject ACTH to stimulate your adrenals. The cortisol needs to go up(I can't exactly remember!) and at least double in value, or be over like 18(not exact info). If it doesn't go up, it means your adrenals cannot respond to stimulation. My cortisol usually started around 10-13, and then usually tripled or quadrupled, so I was told I was fine. My morning fasting cortisol the last few years has been in the mid-20s, so yea, my adrenals work fine. BUT, don't understand why my ADH and aldosterone are on the low side. Let us know what you find out.

That is great info to find! Now on to see how your adrenal's respond to a stimulation test! I tend to have low ADH(0.8) and on the low side for aldosterone(3). I've had my adrenal function tested a few different times, but mine function fine. Thinking about how your fluid goes to the stomach, extremities, etc., have you been tested to make sure your protein levels are up to par? If protein deficient, your fluid will seep out of the vessels into tissues and make them edematous.

Regarding gluten, I am not celiac, but do eat gluten-free. I had the scope and biopsy, and I do not show any signs of having celiac disease. HOWEVER, I do have antibodies to gliadin(the protein in wheat, barley and rye), and they were 4x the upper limit!! From that fact alone, I gave up gluten. I cannot believe that a high level of antibodies going around in my body was not having adverse effects on my system. I have to say my stomach bloating lessened by about 75%. I definitely will take that!

I seem to have worse times of the day with hypoglycemia. My bad time is all morning. So, during morning I eat every 2 hours, and I stick to it. In the afternoon, I can go 3 hours or a little more, and still be ok. And because I eat so often, I eat just a little. For instance, for my first lunch(10:00), I eat half of one slice of bread with my toppings, then at 12:00, I eat the other half. I am used to eating small amounts, and it does all keep me more steady. You will have to see what works for you. I can say, if you react to carbs, you don't have to eat so many. I'm saying this because the dietician will most likely give you a diet that has higher carbs than what a carb-sensitive person can handle. Take all that into consideration.

Glad you are doing somewhat better, LouLou! The only other thing that gave me flushes was yogurt/kefir. I have no clue why, except for the probiotic part of it.

I have had many issues with low blood sugar. The key is prevention! Always eat protein with your carbs, and fats if you tolerate them. And, I do also wake up with pounding heart and heat from adrenaline rush due to low blood sugar, and have for years. It's like, if I don't eat, I am more steady, but the minute I start eating I'm on a roller coaster. So, I tend to not eat after about 5:30 p.m., so I can let all the insulin craziness settle. I have noticed other hypoglycemics eat protein with a tiny bit of complex carb at bedtime to steady things out. You just need to see what works for you.

Just buy you some gluten free bread! That's what I do for lunch, is some kind of sandwich because I don't have enough energy to do anymore than that. I can pull a meal together for supper, though. Heat is my absolute worst for brain fog! I have 16 hours of college math under my belt, and recently at a hot(inside, bad a/c) farmer's market, I could not make change. It was soooooo embarrassing. I just cannot think! I will stare while I am thinking, and I'm sure I look like I don't have it together...which I don't.

To be honest, I have actually had my copper tested a couple of times in the past 5 years, wondering if I had Wilson's disease. It's a long, weird story why! Anyway, I had my serum copper and ceruloplasmin tested, and both were normal, so no Wilson's disease. BUT, my free copper has been high a couple of times. I bought these tests on my own, so don't know the significance of it, as I don't have a doctor that I would feel comfortable asking about free copper(in other words, a knowledgeable holistic physician). I've often wondered about copper in general, because a lot of POTS people have EDS, which is a problem with the cross-linking of collagen. Guess what is strongly involved in collagen formation? Copper.

I just know a few years ago, I was reading somewhere where women were discussing how they felt when having to take magnesium sulfate(IV, in the hospital) to stop early contractions. They repeatedly mentioned how hot and flushed they were. This made me think of how I had been taking magnesium for a couple of years for bowel issues. I would try various kinds. I then started noticing the connection to nuts, and quit them. But, then a craving would come on, and I'd once again eat something with nuts/seeds, and sure enough, for a couple of days I'd be hot and having episodes of flushing. So, I'm not positive that is the correlation, but just suspecting it.