Jump to content

Recommended Posts

The only thing directly reated to POTS that could makes clotting and increased risk is being sedentary. The leg pooling itself will not cause clots, but sitting or laying for copius amounts of time increases risk. I am the blood clotting queen, I had multiple DVTs, a huge clot in my heart, and over a dozen pulmonary emobli - all from a PICC line. But I had ALL the major risk factors: pregnant (huge increase in risk), on bed rest, PICC line (known for causing in clots on 50-70% of patients), and I have the Factor 5 Leden gene - thankfuly heterozygous.

Do you have symptoms of a clot? If you are laying down or have your legs elevated (or wear compression stockings), that should reduce any pooling/swelling. Clotting pain is very specific - it is a deep pain in a small area, and the area gets swollen usually and is hot to the touch. My jugular was completely clotted off before the negelgent rehab facility I was in finally dscharged me so I could get help - I couldnt move my neck. And lots usually hurt more when upright. I felt like I was being strangled and suffocating with my chest clots (emboli).

Claire

Link to post
Share on other sites

I've also had a blood clot in my heart, but it was attached to a pacemaker wire. After 6 months on Coumadin, it went away. I think you're more likely to get a clot if you have the risk factors, or are pregnant and laying down a lot, like Claire writes. On a plane ride I always make sure to get up and move around as much as possible. The same is true for laying or sitting too long.

Link to post
Share on other sites

I have EDS/POTS/(now more OH) with dysautonomia. Cardiac specialist (and rheume lit. i.e. Prof. Rodney Grahame, rheume, University of London suggests same), knew exactly why I was hemorrhager while Von Willebrands was twice neg. (still put under that umberalla diagnosis). I had Delta Granule Storage Pool Deficiency and test being positive was sent to hemeoncologist. Dr. Grahame suggests rheumes who find EDSers/dysautonomia should check for both VW and DGSPD since they can co-exist. But DS, DM, g-parents on both sides have history of clots. And I know people with DGSPD who have had blood clots even tho they hemorrhage (something I was surprised to know). I can't seem to wear even mild compression socks as every single time--bursts vessel on top of my foot which takes a long time to ease up enough to let me try again. I have to elevate my legs because the blood/fluid pools with the OH and the EDS but I get up and walk room to room--fairly long hallways from front to back--repeated trips thru day and use the recumbent bike 20-25 min/day. When legs are up, I make effort to rotate feet/ankles periodically. I ride in car with seat back/feet on dash board. We stop and stretch legs if long rides.

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...