r/ClotSurvivors

I am 24 F and normal weight, athletic build, and otherwise healthy individual. I was just discharged from the hospital for a severe migraine. Symptoms were loss of vision on one side, numbness of the right hand, pounding headache, light/ sound sensitivity, vomiting, nausea. I had a dyed CAT scan and MRI which revealed a jugular thrombus on the proximal right vein. I have no possible explanations for why it might form in that location. I was placed on a high dose of eliquis for the next week, and continuing for at least 3 months.

I was lucky the clot was in my venus and not my arteries as that could have caused a blockage to the brain. The neurologist came to the conclusion that the migraine was a separate incident irrespective of the clot and wasn't caused by a blockage of the brain.

Based on that conclusion, it seems that the clot would not have been discovered if it wasnt for the migraine. Why wouldn't I have any symptoms related to the clot? Would I know if I had another clot, since I experienced no symptoms with this one?

The doctor who first worked with me in the ER was doubtful and had to double check with the MRI staff because he didn’t believe the results at first. He said he has never seen a clot in that location before and was very surprised of the findings. Has anyone else had a clot in the same location? If so, what were your symptoms and what is your current treatment plan? Do you have proclivities to getting more clots due to genetic conditions?

Anything helps, even if you haven't had a clot in your jugular vain, if you have any piece of advice that would be reassuring I would really appreciate it.

I am two months out from my bilateral pulmonary embolism diagnosis. While it’s gotten a lot better, I still am having shortness of breath at times I wouldn’t have before this happened. It hasn’t been crazy bad, but enough to notice. I’m also just so tired all the time still. Everything I’m reading online says I should be basically fully recovered at this point — I have seen my doctor and he’s sent me for bloodwork, but is there anyone else that had a longer recovery period? Should I be worried there’s permanent damage at this point? To my knowledge, it wasn’t super bad, I was put on blood thinners and discharged from the hospital same day.

I (24F) got diagnosed with a PE on June 9th, 2026 the day after my daughter was born via vaginal delivery at a birth center with a midwife. I had a back-to-back pregnancy resulting in Irish twins and my daughter’s birthday being 17 days before my son’s. This labor was in general a lot longer and more intense/complicated. Unlike my son’s, I had to have my water broken and I hemorrhaged quite a bit post-delivery. My midwife had to do a membrane sweep of my uterus to remove the placenta that stayed behind (yeah…ouch!!). She gave me Pitocin after to protect against an infection. My birth center only keeps you for a couple hours after birth then sends you home if everything seems fine. One red flag I had now looking back was a high heart rate. We had to wait an extra hour or so for my heart rate to drop below 120 whilst I was laying down watching Gilmore girls with my husband.

Anyway, fast forward to my 24 hour check up for both my daughter and I. I found myself particularly winded trying to get the house in decent shape for the midwife but I chalked it up to having a rough and long labor. While the midwife is checking my daughters heart with the little heart reader thing (I don’t know what it’s called) I got super mega dizzy while sitting in my bed. All I could think to say was help. It felt serious and scary but after checking my pulse and blood pressure she deduced it must have been from me not eating enough that day (admittedly I hadn’t eaten all that much). So I started shoving food down my throat and I felt okay a couple minutes later. Until it happened again. To me I could feel how serious it was. But both my husband and midwife were reassuring e it is nothing to panic about. As someone who has never passed out and hasn’t had any medical scare in my life, I trusted their judgement.

At the same time, my daughter did not pass her heart exam and though the midwife wasn’t sure if her machine was working or not, she instructed us to go to the ER just to be safe. A blessing in disguise for both of us. We rushed to the ER and I was eating something the whole way there. I attributed me eating to not feeling that horrible passing out/dying feeling again. Well it happened two more times while waiting in the ER. While my daughter got seen and was immediately rushed to the resuscitation room- I was asked if I would like to be admitted as I looked like a zoned out corpse in a wheelchair (I requested one due to how weak I was feeling). Upon being admitted the only symptoms I had were a rapid heart rate and shortness of breath. My doctor eventually said she would do a CT scan to check for a PE “just to be sure”. Low and behold, I had 3/4 small to medium sized blood clots in one lung. I was placed on a heparin drip for 4 days then sent off with Eliquis to the children’s hospital an hour away to finally be with my husband and daughter.

The first month was filled with anxiety, severe insomnia, panic attacks and depression. Hell the first three months. As well as a few ER visits that ended up just being panic attacks. Due to shortness of breath and a rapid heart rate ( two things panic attacks cause) it was so hard to not constantly be spiraling. I was scared and confused and constantly reading over my discharge paper that said “if you feel short of breath/have a rapid heart rate call 911”. Constantly worried I wouldn’t wake up. I kept thinking about how there is so much I haven’t done or experienced. Though I am so grateful to my In laws for stepping in and spending the nights with me and caring for my son 24/7 for the two weeks we were in the thick of it…I was so sad I had no family of my own. My mom overdosed when I was 15 and my dad died of pancreatic cancer when I was 19. I have three brother but only one that I feel I have a bond with and he was all the way in FL (I’m in WA). I just realized how lonely I really am when it comes down to it. No close friends. Little to no family. Just my husbands family. Who truthfully when I think about it, have made up for all the broken and empty my family have left me. Kind, generous people who canceled a cruise they had planned a couple weeks after we got a home because they wanted to be with us just in case we needed anything.

ANYWHO. I’ve never posted on Reddit and I am generally a very shy person. But I say all this for two reasons. 1. I want to encourage someone else to not feel so scared and alone. I might not have all the answers but I am 4 months out and feeling ions better than I did then. I still can’t have caffeine or workout without panic attacks but it is something I am slowly teaching my body to feel safe with. I have had multiple periods on Eliquis (something I was terrified of as I read about blood transfusions and insane amounts of bleeding). And 2 of them were the lightest period I ever had and my most recent one was a normal flow. If not a little bit lighter than normal(I would like to note I am not anemic but my ferratin was at a 7 back in JULY so my period was something we were watching closely. I also normally would have very regular periods. Nothing too insane, long or painful.) For panic attacks I have hydroxyzine on standby when I very rarely need it. And I only have insomnia like a couple of times a month.

My second reason for this post, is admittedly I am still very scared when I think about my situation. I have no clotting disorders from the first blood test we did. We are going to repeat the test when I come off thinners in December. As well as a heart EKG and a leg scan to check for DVTS. (Oh and they found no DVTS when they scanned in the hospital.) But I am still scared. Scared of another blood clot. Scared to come off Eliquis and have a stroke or something. Scared to fly. I am a fairly healthy person (Trying to be insanely fit this coming year though. Almost dying really lit a fire in me to become the best version of myself and not settle) but trusting my body again feels near impossible. And truthfully I just want some positive stories and optimism. So if you have a decent experience you’d like to share with me I would really appreciate it!

I’m really grateful to this group and God for getting me through some of the hardest and darkest times of my life. We are resilient as hell!

hello everyone!

this is my first time posting. i joined this club about a month ago on Labor Day when i fell and fractured my right foot. being put in a walking boot plus a long 8 hour road trip home several days later, i was diagnosed with a DVT shortly thereafter. i have since been on eliquis. last week, i started to have shortness of breath on exertion, mainly with bending down which got worse and ended up at the ER again. after a ct scan with contrast, they ruled out a PE. however, i continue to have the SOB with exertion. i have a cardio follow up in 2 weeks which is that the ER recommended, but what do i do before then. i do have asthma too and have been using my inhalers, but i know my asthma and this is different.

Hi! I am presently 6 weeks into treatment for DVT. I am on treatment dose of apixiban for 3 months and a smaller dose for the rest of my life due to my aneurysmal PFO.

I am in my late 40s and an Early Childhood Educator. Presently I am between jobs. My last contract at amicroschool for neurodiverse and behavioral children eneded right before my DVT was discovered. I decided not to renew my contract for now as I am taking some time recover, attend appointments (I am going through lots of testing because my DVT caused zero symproms, was large and cause is unkiown) to figure out how to move forward.

I am nervous of going back to working in a classroom due to potential injuries from dysregulated children lashing out and the physical demands of the job (lifting children and furniture, tripping hazards due to busy classrooms, and childsized furniture). When I asked my doctor she give vague answer saying I should be fine and to teach the children to be gentle (she is a very young doctor and clearly has little experience with children).

Has anyone here had to rethink their careers and pivot?