sue1234

Thanks, Dops. I'm just overly curious!! Can anyone guess what antibody tests Dops may have had? I'm not sure what is being tested these days.

Ugh, I have NO patience waiting for results from this study!! Dops, I'm curious what your doctor found in you that he says you might get the immunoglobulin in 6 months? Was it based on labs or just your clinical presentation? I so hope I can get a doctor to understand this information and work with me on it.

Wow, Curacao sounds amazing! Warm, but not hot, and cooling breeze. I have a question. Were you able to control the temp of your room on the cruise? I'd love to go on a short cruise, but scared I will be uncomfortable if I can't adjust the temp to my comfort-zone.

Good for you! Glad it went well.

I was always leary of having to do the prep and the procedure, but to be honest, I personally did just fine. The IV they give right when admitted puts everything right right away.

So sorry you are getting nowhere! Question. With fecal and urinary incontinence, along with hyperreflexia, have they done an MRI to look at your spinal column? Those symptoms sound like they need an urgent, thorough investigation.

Corina, I had an octreotide scan. I haven't ever taken octreotide as a medicine for POTS. I'm hoping if the cardiologist can pinpoint this vasodilation issue, he may offer it to me to try...that is, if he can't find out why I have the high level. I'll just have to see. Chaos, yes, please link what you've seen before regarding VIP. I'd love to know what's out there.

I would like to add, I don't know if having elevated VIP levels is causing my POTS, or, if POTS somehow may be causing elevated VIP. It is a puzzle, for sure!

Thanks, Katy. It is a regular blood test, VIP. As far as the doctor, I know! I was determined to see if there was a doctor in the South that is studying VIP, and sure enough, he's an electrophysiologist cardiologist. I figured he'd know in-depth how all the VIP can affect the heart action, and all the sequela(?) of vasodilation when standing. My fingers are crossed he can connect the dots! The only reason I know about VIP is I am almost always seeing endocrinologists for the last 15 years. My endocrine system is wonky. One good endo, knowing my POTS co-morbidity, ran a few new, unusual tests and that's how we found it.

I posted a couple of years ago that my VIP levels were accidentally found to be elevated on routine investigational blood work. I can't remember offhand what the exact level was, but it was around 85, because I mentioned it was 2x the upper limit, and normal range is 20-42 pg/ml. Last September I had my 3rd(and final) 72-hour fast to investigate my low blood sugar. It showed I definitively do not have an insulinoma. When I was admitted, the physician ran a lot of endocrine hormone levels, plus the usual stuff. My VIP levels had risen to 116 now, almost 3x the upper limit. I ended up with an immediate octreotide scan due to that, but no tumor showed up, so can pretty much say it is not from a tumor. It was a 2-day scan, and I hate lying on my back to begin with. So, between total food fasting for days and having to keep being brought to the scanner for scans, my body was not liking it! The most interesting thing about VIP in relation to POTS is, it is a "potent vasodilator". I have been telling doctors for a few years that I have a vasodilation problem, which makes it harder to stand up and it causes me to be really hot when in normal, warm temps. So, now I'm wondering if elevated VIP is a random thing for just me? Or, because it is so rare, is it that it has never been checked in many POTS people? (I say rare, because of all the neuroendocrine tumors, VIPoma is about 1 in 10,000,000, even more rare that an insulinoma person). I'll say again, I do not have the VIPoma tumor, as I was scanned thoroughly. So, what is causing me to have elevated levels????? I found a cardiologist who does research on VIP levels and their effect on the heart. I just made an appt. with him for April, and hope he can shed light on this. I mean, if I have elevated levels of something that is known to cause vasodilation, then it sounds like maybe, just maybe, this could be a contributor to my POTS. If so, then I am on a mission to find out WHY my levels are elevated and what can be done to lower them! BTW, I had to verbally "strong arm" the lady who makes appointments. She was like, you may have to see a regular cardio to get referred here. I said, NO, he is the one doing research on the hormone that I have an issue with. She said, oh, you must have dialed the wrong number because he's a cardiologist and doesn't work with hormones. **I was at this point rolling my eyes, but determined**. I said, his website said he does specific research on this hormone's affect on the heart. I rattled off the medical lingo of VIP and my high heart rate issues, and how he is the only one that can connect all this. I got an appointment. Any one else EVER have their levels checked? Like I said, maybe it's just me having some weird thing going on.

I drink a big, lightly sweetened 32 oz. iced tea every morning, then start adding in the water as the day goes on. I cannot survive without my tea to wake me up AND help get my bowels going. Coffee makes me feel really weird, so can't do that. As far as electrolyte drinks, I can't do them. I just make sure I eat my salt and potassium every day. All in all, I drink close to a gallon over my 15-hour awake period. If I drink any less, my urine gets yellow. I also CRAVE drinking something all the time.

I can't help on BCP. I'm 55, and I tried BCP in my late 20s and they made me feel awful. i ended up getting a uterine ablation and tubes tied after my last child. I tried the BCP again a couple of times around 40 years old for premenopausal symptoms, but every time, I felt awful. I would feel like I was taking a sleeping pill from the very first pill and then like a slug. I don't know why. So, basically I've spent my whole life without them.

If you get cranky after sweets, it makes me think your blood sugar is dropping into hypoglycemia. I am the queen of being cranky when I am hypo! That is one of my signs that my blood sugar is under 55 (normal is above 70). Do you have access to a blood glucose meter? If so, check your glucose levels at different times to see if that is an issue. I eat gluten free, so completely understand wanting to try it. It has helped many people(both us and nonPOTSies).

My face has gotten very dry and flaky skin in the t-zone(I'm in menopause). If I eat something I react to, that area gets very itchy, raised and red. I think it is seeds that do that to me, and I don't understand the connection. It is very sensitive overall. Otherwise, my lower arm/back of hand skin looks like a vinyl record, like I've lost all the collagen underneath. I'm 55 and my hands look way older than my 79 year old mother's!!

I agree with your 3 things listed, especially #1. For me, I learned to let go of the guilt. The guilt for not showing up at things that normal family members would not miss, like a wedding,graduation or holiday event. I have learned to go when I think I'm able and to not go when I don't think I'm able. It is as simple as that. It was very hard to do. As long as I support the people in spirit is all that matters.

I don't take midodrine, but other meds that I've taken over the last couple of years have had issues with supply. Especially at my small local pharmacy that I've used for 30 years. Most of the time I end up at Walgreen's, and I hate going there. It takes days to get it filled, and 30 minutes to wait in line to pick it up. I don't know, it's like there is a shortage in others meds as well, and not really sure what's going on in the pharma. industry.

E Soskis, you had AAG antibodies?

That's interesting. AND good that your doctor thought of that.

I've had 2 colonoscopies with endoscopies since I've had POTS, and I did fine with the prep and the anesthesia.

Can I be excited for you?!! I totally understand why you feel the way you feel, as we have all been through so much over the years. I love how your doctor really put some thought into it, and has some ideas. I really hope something shows up to explain your symptoms. Can I ask about the parasite thing? What made him think about it...is it a potential cause of the potential clots? Or, just that parasites have effects of their own that might contribute to POTS? I ask because I am on an anti-Malarial medication right now. I've been on it for almost a month, so far so good. It was given for positive Lyme. I had a Lone Star tick on me 20 years ago, and went to my local doctor and he blew me off. I've had health problems all these last 20 years with no clear-cut explanation. So, I'm not sure how I view the Lyme diagnosis, but I'm going for the treatment anyway. The treatment takes care of a number of protozoa(I think, early morning brain here). So I hope it is covering a lot of possible bases.

Stefanie, I'm pretty sure I have it. I just look at it like it is not a disease in itself, but due to whatever is causing my POTS. I'm patiently waiting for that autoantibody clinical trial Vandy is doing, so hopefully when they can treat the antibodies, things like the Raynaud's phenomenom will go away! I am trying hard to be patient!

Oh yes. When I've been standing too long for me, but especially when I get hot! My hands swell and turn red. At this point, like Stefanie mentioned, I know my brain and heart aren't getting enough blood volume due to the pooling. At this point, my heart begins racing and I feel lightheaded. But, I also have the opposite. My hands turn deathly white and nails purple when I am cold. This can happen in other peoples' normal temperatures, too. For me, I can be in a room at 69F and be absolutely freezing and have the white hands. There is very limited perfect conditions for me.

I did a mostly paleo diet, with no-to-very-low sugars, no white carbs, etc. I lost 45 pounds in less than a year(which I needed to lose!). And everyone here knows that exercise did NOT factor in to my weight loss! I continued to eat no-low sugar for the next 1.5 years. I found I was mentally sluggish and low energy that whole time. I slowly added in some sugar and carbs, a delicate balance. I regained my mental and physical energy(not robust by any means). I personally cannot do without some carbs. I admit I do have sugar balance issues, being mostly low sugar. I just feel more "balanced" when I include gluten free grains here and there. I eat mostly from-scratch cooking, except for those darn Fritos I am addicted to at the moment!

I eat fairly healthy, except for the Chili Cheese Fritos! I have been eating them like there is no tomorrow. They are my salt fix.

I have a problem of not being able to sweat anymore, which is a huge problem because now I can't cool off at all. I only get "moist" under my breasts and very slightly around the base of my neck, and that's it! I really feel that they need to figure out the auto-antibody thing out in their research, as I feel this is why I am not able to sweat anymore.