janiedelite

Yes, Julie, we are SO similar!!! I'm glad to know that I'm not the only POTS patient that makes their docs tilt their heads, scratch their chins, and say "Huh?"

Christy, wow that is so GREAT! I think all of those techniques you mentioned are important for teens and adults with POTS. I'm SO glad that your son gets to have some normalcy now.

Green, I have to agree with you because when I'm really feeling badly (hungry or not), I almost always get instant relief from getting a cup of egg drop soup from my local Chinese restaurant.

I was seeing a dermatologist for the itchy, discolored, painful purple toes. I also had little lumps that would come and go on my toes. He biopsied one of those lumps and it came back as pernio (chilblains). The specific wording of the biopsy said "perivascular lymphohistiocytic infiltrates". Mayo later used that same biopsy a year later to check for small fiber neuropathy. I wish they would have taken a new biopsy for the SFN testing as my burning feet had worsened quite a bit in that year. The biopsy was negative for SFN, but my sensory testing was so abnormal that the Mayo neurologist deemed I have SFN regardless.

What has helped the most in controlling the pernio and purple toes is managing my pooling and blood volume with compression, salt and fluids. Also, stress makes the pernio flare up, even during the summer months. My docs have surmised that I have this peripheral circulatory issues because of the high levels of norepinephrine I produce while upright. Also, I wear wool socks during cold months which helps somewhat.

I've had this done to check my peripheral vascular resistance. They put a tiny blood pressure cuff on each of my toes and compared those measurements to arm cuff BP readings. This was done because my toes were purple for most of the winter of 2008-9. Believe it or not, my peripheral vascular resistance was normal. However, I was lying down. It was after I had a skin biopsy that we saw that it was the capillaries and arterioles that were malfunctioning, causing purple toes.

You may live near a support group:

http://www.dinet.org/supportgroups.htm

There was a thread about this a couple weeks ago. One of our male members posted about some athletic leggings that didn't look quite like compression hose. My favorite is Jobst Relief. I wear thigh-high 30-40mmHg but started with 20-30mm. The Jobst Relief are less expensive and more durable but not quite as soft as the more pricey types. Some on this forum have liked the Juzo brand.

You don't have to have changes in BP in order to have pooling. One of the diagnostic criteria for POTS is that the BP is relatively unchanged (or in some cases, goes up on standing) but only the HR rises on standing. It's still a signal that the brain isn't well-perfused and is trying to increase our heart's cardiac output by increasing the HR.

Hose won't make stomach pooling worse. There are waist-high hose or even abdominal binders that can provide abdominal compression if you need it.

Try typing in compression hose in the search bar and you'll get lots of results!

He also could have had strictures from reflux that needed to be dilated, but I'm not sure why his esophagus kept collapsing.

Me as well, however I feel worse if I eat too much!

I'm looking forward to listening to you! Thanks for stepping up and putting the word out!

I recently met someone who has episodic POTS/OH. For me however, I experience some degree of symptoms 24/7. I've also tried nearly every medication available and had little improvement. Hopefully this person will realize that there are degrees of severity in EVERY illness. I've attended a lot of carcinoid syndrome support meetings with my mom and have met quite a few others who share her diagnosis. But some people work, some have chronic pain, some pass out, etc...

My only advice would be that if she doesn't display some compassion for your symptoms even after you've explained yourself, try to just avoid her. Unfortunately, getting frustrated will only sap the precious energy you have left.

I'm so sorry to hear that your work was unable to accommodate your symptoms further. That IS frustrating!

Yes, if I dangle my arms they'll turn reddish or purple like my legs.

If the hematologist is willing to order any test that could diagnose a cause for your symptoms, see if he'll order an autoimmune panel (ana, sjogrens, rheumatoid factor, etc), diabetes (Hgb A1c), comprehensive metabolic panel, CBC, cryoglobulins, supine and upright catecholamines, chromogranin A (for neuroendocrine tumors) and I'm sure there are more that others will suggest.

The only medication that has really relieved my shortness of breath has been nitroglycerin. I was also on Imdur (a 12-hour nitro) for awhile, and also got the same relief from the air hunger and it cleared up my brain fog! However, it made standing up more difficult.

I'm glad you're getting checked for carcinoid. My mom has had carcinoid syndrome for most of her life. FYI, the gold standard for testing is a blood test called chromogranin-A. The 24-hr urine 5-HIAA will only show an abnormality if the carcinoid tumors have been especially active during those 24 hours. The chromogranin A will show tumor activity for the past week or so. Most labs can run it (Arup, Quest, ISI, etc)

And, welcome to the forum although I'm sorry to hear that your illness is so severe lately! My husband and I are in the process of adopting from Taiwan, so bravo for taking in your two precious Chinese daughters!

I started a blog about our adoption journey at http://janieandshawn.blogspot.com/

We need someone to take over Staci's role as DINET Newsletter Designer. We currently publish our online newsletter quarterly. The Newsletter Designer would be responsible for coordinating with the newsletter columnists, editing, layout and maintaining the professional look of our DINET newsletter. We are looking for a person who has design layout experience, specifically with Adobe CS5 or at least with InDesign CS3, as well as Adobe Acrobat Pro. If you are interested in volunteering as our Newsletter Designer, please email 2 or 3 samples of relevant work to j_farrens@hotmail.com

And thank you to all of our WONDERFUL volunteers!!! Happy Thanksgiving!

Ugh, they need to wait for at least 60 seconds once you change positions.

I agree. I tend to say that I have autonomic nervous system problems/disorder which affects my BP, HR, digestion, and more.

As far as the long-acting octreotide goes, it's usually best to try the short-acting subcutaeous version in case you have a negative reaction. Then you'll only have to suffer through for a few hours instead of a month.

I took it for 2 months and didn't have any improvement. No bad side effects, either.

It may help you to rinse off your legs in cool water at the end of your shower. Sometimes if the hot water causes more lower body blood pooling, the cool water on your legs can help vasoconstrict.

You do have to get a prescription for domperidone. I don't know how easy it is to get now, but 2 years ago I had to get mine at a compounding pharmacy.

You must be relieved to finally have an idea of what's going on! Congrats! Are you going to try octreotide, if just for the splanchnic pooling?

BTW, my mom was mostly constipated prior to her first surgery for her primary carcinoid tumor, but still had the OI symptoms, flushing, and feeling like doom.