Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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TossNTurn 04/16/2010

Apparantly now I'm a medical mystery.

We don't know what caused my PEs in the first place and now (eleven weeks out from diagnosis) I've developed "orthostatic hypotension," which means my blood pressure is plummeting when I stand up and move around. The low blood pressure results in dizziness, lightheadedness, blurry vision, and an increased risk of fainting. The fainting, of course, is additionally dangerous since I'm on warfarin.

Everyone seems to think the hypotension is related to the PEs, but no one is sure how.

My doctor told me today "I'm not smart enough to figure this out, but I am smart enough to refer you to a specialist." So, now I'm going to see a pulmonologist and, possibly, a neurologist. The cardiologist I saw found no heart damage and really didn't have any insight.

Anyone have any blood pressure problems (either going up or down) related to the PEs or to warfarin? I'm trying to get this figured out and anyone with a story might give me a clue.

Thanks in advance!

deleted_user 04/16/2010

Sometimes I wonder why our bodies have to be so complicated. Hope you get the answers you need.

lakotajo2 04/16/2010

So strange, since you and I are pretty close in terms of the dates of our PE's. My dx date is Feb 11 and the hospital release on Feb 17th.
Now my normally very low blood pressure is sky high and with the same explanation. Probably connected, but they don't know how and I am getting referred to a pulmonologist also. Weird!

deleted_user 04/16/2010

My blood pressure spiked when I was in the hospital, then stayed steady around the normally range, and was low at my last visit to my PCP. My pulmonologist says he wants to keep and eye on it and it all seems to be related to my PEs. I hope you are feeling better soon. Good luck!

ShilosMommy 04/16/2010

I did have unusually low blood pressure after my PE and also went through a lot of times with dizziness and fainting, even many months after diagnosis. Unfortunately none of my doctors ever seemed to care much about it, it was just considered an anomaly and no one ever looked for any answers. I could generally tell when I was getting to the point of fainting, so they just told me that when I felt that way to sit down as quickly as possible to avoid injury. This did eventually improve for me, but I do have some trepidation as we get into the summer season, because for whatever reason, that problem was worst for me over last summer, and started getting better after the weather cooled.

Please let us know if your new specialists find any good answers for you, I'm very curious to know.

Feel better soon!

deleted_user 04/17/2010

I have always had normal blood pressure but experienced both high and low blood pressure (mostly low) after my PE. It must surely be related. It is normal again now. I hope that the specialists can help you. Meantime, I hope you find Shilosmommy's post a source of comfort.

deleted_user 04/17/2010

Since my PE my blood pressure has only been low on lying down around 73/36 was my lowest but usually around 80/40. Then sitting I was about 115/85. Pre - PE I used to be about 110/60. Then they checked me constantly for falling blood pressure on standing because I was fainting/nauseous every morning getting better by afternoon. My blood pressure was the same as sitting.

My blood pressure has changed since my PE. I'm sure of it. The fainting became better but I still have the lightheadedness but mine is apparently not BP related. My doctor said the fainting and lightheadedness were not related. He believed them to be caused by two different things.

In the end he put the fainting down to the warfarin and the lightheadedness down to another medication I was on. I have never had any problems with the other medication so who knows. I still have the lightheadedness and feel dizzy at times.

my BP went up in emergency last week but I guess that is normal. I nearly passed out there too but I did have SOB so I don't think it was BP related. My BP stayed around 140/90

Hope you get answers soon

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