Do You Feel All "Vasodilaty" Often?

[sue1234]

I'll have a few days where I seem my normal POTS self, and then I'll have a few days where I can just feel the vasodilation continuosly. Even just sitting, my hands and feet will feel "full" for a lack of a better description. I can't make heads or tails as to what changes happen.

I talked a few weeks ago about how POTSdad's daughter was being checked for pelvic congestion syndrome(PCS), and I found that Nutcracker Syndrome can cause it. I have been reading all I could since then on both conditions.

I found this article on PCS: (if the article shows up small, you just click on the bottom line and it will become full-size)

http://books.google.com/books?id=VqrcAp0ELwgC&pg=PA142&lpg=PA142&dq=pelvic+congestion+syndrome%2Bblood+volume&source=bl&ots=uMujkP7A5n&sig=CL1ygu6u2lJm2hksDoIcLMbLnkc&hl=en&ei=fMXBTNPZPMOblgf28smCCg&sa=X&oi=book_result&ct=result&resnum=4&ved=0CCEQ6AEwAw#v=onepage&q=pelvic%20congestion%20syndrome%20blood%20volume&f=false

Sorry it's so long, but it's in a book! Anyway, on the first page, on the right top paragraph, it talks about how, as the pelvic veins get congested, they release SUBSTANCE P and NEUROPEPTIDES. It said these in turn cause vasodilation!!! I was reading up on the neuropeptides, specifically tachykinin, and it talked about how powerful a vasodilator it was!! So, has anyone had these substance levels checked? I don't even know if these are able to be tested via serum. Anyone know?

I have an appt. with a cardiovascular doctor next week to specifically talk about pelvic varicosities and/or nutcracker syndrome possibilities, and how they could contribute to POTS. I started this thread wondering why I feel so "vasodilaty" all the time, and it is not due to just heat. It is unreal to me how doctors have not looked at ALL the possibilities that could make a body have venous pooling. Fifteen years ago I DID NOT have issues with venous pooling, so I don't know why doctors have never sat down and thought, mmmmmmmm, what has changed in your body??

Why aren't these darn dysautonomia centers looking for CAUSES and not just band-aids? Sorry, I had to add a rant!!

[issie]

Okay, I finally got a chance to look up that article. That explains allot on my behalf. I had horrible, horrible ab. pains and also endometrosis. When I had my complete hysterectomy that pain went away. I do feel like this Pelvic Congestion thing was a part of it. Since the ovarian veins were severed, then the blood couldn't back up into them - No more pain. I wish I had had the surgery sooner, but I was young and it was my 8th ab surgery. The complete hysterectomy performed at age 36.

I found a doc today who is going to try to figure out some things. It's the doctor that arizona girl has gone to. He looks at auto immune issues specifically, but also does all the autonomic testings. So, we are going to do a bunch more test and see if it turns up anything. I have some other things I want to rule out too. But, we'll take a look at this first. He seems real knowledgeable and is taking the lets find out why approach and I really like that. He is in Phoenix, AZ and his name is Dr. Levine - a neurologist. If anyone wants more info PM me or arizona girl.

[issie]

sue1234,

I know you haven't gotten very many replies from this post, but wanted you to know that I have gotten some PM's in regard to it. So, keep these ideas and post coming. We all need to put on our thinking caps and try to come up with possible solutions.

Issie

[nunntrio]

Please let us know what the cardio. thinks about nutcracker syndrome. I have mentioned before that I have been treated for PCS but I still think I have issues that way. I have a cardio appointment next week and am going to mention the idea to him. I just reread the surgery report from when I had my Left ovarian vein embolized and they mentioned that there was evidence of reflux in the left renal vein. I believe they did a venagram while I was under sedation for the embolization. I did not understand a lot of the report the that caught my eye. Thank you for your research into this.

By the away, I agree with your rant.....I wish I could find a DR. willing to look into the cause and not just throw beta blockers at me.