Pulmonary Embolism Support Group

Good question... if you figure out the answer please let me know!! I'm 3 weeks off warfarin tomorrow and it seems my over-reaction turned panic is only getting worse. I really thought it would be worse the first week or so off warfarin, but not for me. :( I've been so freaked out that when I wake up during the night I get up and walk around just to be safe... my Doctor told me to stop that, but every little twinge, chest pain, etc. is sending me right over the edge right now. Are you still on warfarin?!?

I just saw your profile and am guessing that you are still on warfarin. I finally stopped freaking out about clotting at about 4 months into warfarin, about 5 months in I finally stopped freaking out about bleeding. Now at almost 7 months out, I'm off warfarin and no longer worried about bleeding, but completely freaking out about clotting. Ugh. I'm hoping (knock on wood) that my bloodwork will come back normal and I will feel some relief then. Unfortunately I know there are several people on here who have clotted multiple times with no clotting disorders, so I'm pretty sure that's what my brain will latch onto for a while. If only I could re-wire my brain!

I am still on warfarin. My hematologist says it's a forever thing. Or at least until he decides to maybe switch me to one of the newer drugs after they've had more testing. I had an unprovoked PE at the age of 30 and no one yet has come up with any idea why. He said that yes it is possible to still get clots while on warfarin so at least he doesn't sugar coat things, but he also said that it was unlikely and he wasn't worried about me as long as I stayed on an anticoagulant. I just literally have spent the last 4-5 days almost exclusively at my computer trying to finish papers (I'm still amazed I made it through the quarter, I was worried I went back too soon).

Did they do the testing to see if it was something like factor v? Were you on birth control or anything? Not trying to be nosy but the doctors kept saying they didn't know what caused mine, then I find out the testing showed factor v and protein c deficiency.
I would press for info.

No Factor V and no APA. I got the results in the mail a few days ago with a note from the doctor. He said there were other tests that were vitamin K dependent and those couldn't be tested while on warfarin and it's not worth going off the med for the tests. He said that if I went off warfarin I probably wouldn't have another PE in the first couple of weeks but he was confident I would have another one within the first year. No BC, I've probably only taken BC for about 18 months of my nearly 20 years having cycles and the last time was for a couple of months in 2010. My PE was in April of the year.

Hi I'm new to the P.E crew. Flavor Flav and Chuck D have nothing on this forum!!

Ive been on the warfarin now just over two weeks after the ER CT scan found small clots in five sections of my lungs ( he said there are only six sections. The anxiety is a bitch. Every time my leg hurts or I get pain on my left side I'm thinking in the back of my mind the meds aren't working and I'm a goner. I told my physician at Kaiser that I was having anxiety and some trouble sleeping and she prescribed me ambien. The problem is I have sleep apnea so there is no way I'm taking that stuff!!
Anyways I don't have any advice but I just wanted to write and let you know you aren't alone. My docs aren't sure what caused mine and it makes it even more frightening when the "experts" can't explain what's wrong.

I get a lot of chest pains. I looked it up on google, I asked other members here, and I went to several doctors. All of them tell me that because I feel pain when they push on me that it is muscular/skeletal/cartilage inflammation. It seems by what I have heard here and what I have read online too that it is quite common with PE's to have this type of chest pain.

I am certainly not telling you this is what you have, but you could ask your dr. Believe me, even with the docs and other people tell me I still get really scared. The fear surrounding all this is really hard to deal with for sure. Stress, movement, over exertion, all these things plus a chronic cough I have make my pain worse. YAY! :)

Jennerm, I was the same, first few days off warfarin I was great, then panic set in, I went back to hospital after 16 days. I still freak out when I sit for too long, get any unusual twinges etc. it gets less worrying as time goes on though and somehow I am managing to shrug off the worries (well most of the time). I've been off warfarin for four and a half months now. When I feel panicky I either go to bed early with the thought that if I feel the same in the morning I will go see the dr (there's been way too many nights like that) or I try to distract myself. It always passes, sometimes quicker than others. In our situation though it can only be a good thing that we are being more aware of our bodies.

It is probably just pain because of my hiatal hernia. It's small but sometimes when I forget to eat or I sit or lay down too soon after eating it hurts and causes pressure. That's why I went for at least a week with the PE before going to the hospital. The pain wasn't enough to make it go but when I walked 10 feet and nearly passed of the shortness of breath and dizziness I called my doctor. I guess I'm just always afraid I'm going to do that again. And it's finals week and my kids have been fighting like animals the past few days, so I am a little extra on edge and not eating right.

Gallstones? Have u considered this as a possibility for the pain? Just a thought. J