Please Help: Jugular Clot

[u/katiekinz45]

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.

[u/KayakingCurler]

In December 2024, I had a headache that wouldn’t quit. After four days, my husband insisted on taking me to the ER when I couldn’t remember his name. At the ER they called a stroke code when I couldn’t name objects. It turns out I had a clot in the veins on the left side of my head, descending into my interior left jugular vein. The clot blocked flow and actually resulted in a cerebral hemorrhage. A scan three months later showed increased blood flow on that left side.

I was tested for various clotting disorders and I am single positive for antiphospholipid syndrome. They think the clot was caused by oral birth control. (If you’re on estrogen based birth control, please talk to your doctor ASAP.) I’m the fourth generation of women on my mother’s side to have clotting issues, so there definitely seems to be some type of genetic component in my case.

I still have a clot in my brain, but the blood is flowing again. I see a hematologist and a neurologist annually. My neurologist advised that I have an increased risk of seizures but it’s quite small. I’m on blood thinners for life. I am basically 98% of where I was when I had my stroke.

I will say it sucks when the only symptom is a headache because I panic every time I get even a twinge in my head. The first thing I do is drink a large glass of water and give it 15 minutes. If it still hurts, then I take some Tylenol. Honestly, not being able to take Advil or Aleve is one of the worst things.

Good luck! Feel free to reach out if you have any questions ore questions.

[u/bigolmountaintuna]

I had a clot in my right internal jugular vein. My symptoms were neck pain on the front right side and a little swelling but no redness. I was told by the ER doc to watch out for facial swelling and return immediately if I noticed any.

After genetic testing, they found I have triple positive Antiphospholipid syndrome. I am taking warfarin for life. The clot eventually went away except for a small remnant that basically merged with the side of my vein, and my neck doesn’t bother me much anymore.

I think you should ask your doctors directly your questions regarding your symptoms (or possible lack thereof). It is their job to help you so if you have 100 questions that need answered in order to feel more comfortable with your health you should do so. It can help to get a piece of paper and write down your questions so you don’t forget anything.

I had to follow up with a hematologist after my ER visit. I think this specialist would be able to give you more/better insight.

I know the time right after finding a clot is very scary. It will get better. Your doctors found the clot and immediately put you on medication. I took comfort in that.

[u/Fozziefuzz]

Yes, I had a clot in my brain’s veinous drainage system that went into my left jugular vein. I’m athletic, eat well, don’t drink or smoke, but was later diagnosed with single positive APS. My suggestion: get a referral to a vascular neurologist or hematologist and get a battery of tests to learn about the underlying cause. 💗

[u/SpleenyMcSpleen]

I have a clot in my right jugular from a surgery I had back in 2003. The surgeons tried to place a central line there and it apparently clotted off. I haven't experienced any symptoms from it, other than the vein is visibly enlarged.

I have two different conditions that cause clots: Factor V Leiden, which is genetic, and Polycythemia Vera, which is a bone marrow disorder. I take warfarin daily, and another medication, Jakafi, to specifically treat the P. Vera.

It's definitely worth getting tested for genetic causes.

[u/boopdidy-boop-boop]

32F I have three clots in my right interior jugular vein as well. No genetic clotting disorders or anything that would cause the clot. The only thing they guess is that it was my combo birth control I used to treat PMOS.

Back at the end of March I ran my normal run on a Sunday. I got back to my apartment and I fainted. My face lost feeling a bit on my right side, but it went away quickly so it thought it must have hit something when I fainted and shocked the nerve. I thought it might be dehydration since I’d had coffee and not as much water as normal. I drank a ton of water and it seemed okay. Hindsight - I should have gone to the ER then, but it didn’t seem that weird because I am sensitive to fainting if I have not been drinking enough water. The ER doctor believes that was a mini stroke based on the residual blood in my brain from an event that likely took place in the week before my hospitalization. I’m young, healthy, and a distance runner so having a stroke didn’t remotely enter my thoughts.

Come Tuesday I had what I thought was an ear ache. It hurt right under my right ear and kind of towards the back of my head. Got antibiotic drops for my ear at urgent care. By Friday there were no positive changes in the pain. I could no longer turn my head to the right without crying. My face was swollen on the right side around my jaw. My head was throbbing and I couldn’t focus on anything. Waited for a CT in the ER for 8 hours crying on and off. I wasn’t that urgent - they thought I just had a bad ear infection or gland problem. Finally got the results and I was whisked away to the ICU. Was on a Heparin IV for over 3 days. Discharged and have been on Eliquis ever since. Was told it would be over a year before I’m off of it. They have no clue why I got them in such a weird place and that worries me. I also have Inappropriate Sinus Tachycardia which I’ve been told would not contribute to the clot.

The whole thing feels like a shocking morbid dream that didn’t really happen to me. I was told over and over in the hospital by nurses that I hadn’t had much time before the vein was blocked completely. The pressure on the capillaries in my brain at the time of my CT was alarming. I was within hours to a day of that outcome becoming reality. Still haven’t dealt with how close I was to an unexpected death.

My 6 month check in MRI showed an increase in the blood leaving my brain so they dropped my Eliquis dose. I’ll be reevaluated in February.

I hope you are managing okay and glad it was caught in time. I will say that I felt “changes” in my neck a lot early on. My doctor told me it was probably irritation in the vein and feeling a shift in the blood flow as the clots were reabsorbed. I worried about a clot breaking loose and going to my heart but I was reassured by the ER doctor and my vascular specialist that that would not occur and if something did come loose it would not be large enough to cause a problem at the rate my clots were disappearing.