Rivaroxiban causing dizzy spells?

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I'm just short of 3 months post-PE on 20mg of rivaroxiban. A follow-up CT scan after 1 month showed both clots were gone, no scar tissue, etc. No heart damage. I'm back to exercising, was feeling great & just have occasional flank pain on the side the clots landed.

Recently, I'm experiencing what I can only describe as unusual "spells' of weakness requiring me to lie down, including a dizzy spell. I'm thinking this is related to the blood thinner, Xarelto. I'm also noticing that any kind of stress really affects me physically. Has anyone else had something like this all of a sudden? TIA

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15 Replies

  • Posted

    Not sure about dizzy spells, but rivaroxiban did give me really bad headaches. They went in under a day, once I stopped taking it.
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    • Posted

      Thanks, Peter. I knew you were on Xarelto, at first...my doc may step me down to 10mg to offset side effects. Just hope that's enough to prevent more clots. 

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  • Posted

    Hi! My 14 year old daughter was on Xarelto for 6 months and felt exhausted with it! Definitely dizzy spells and extreme fatigue! One advice, please do be careful with any bruises or falls, any accidents, banging your head, etc, as you can bleed internally because of Xarelto! Watch out for any bruising or bleeding as there is no antidote for Xarelto yet (soon coming out) like they have for warfarin! If you start bleeding and it does not stop, it is very dangerous! Stay away from any accidents ok? Good luck and try to rest as much as you can! 
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    • Posted

      Thanks, monicap. Yes, you're so right about the bleeding dangers of a bump and that's my biggest concern, too. My dizzy spell occurred in the shower! I was lucky not to black out, but it scared me. I don't think I've ever had an out-of-the-blue dizzy spell, until now. 

      So many of us will be relieved when the antidote is approved by the FDA. Last I read, it may be May 2018. Is that what you heard?

      Thanks for your good wishes and I hope your daughter starts to feel better. She is so young to be dealing with this condition. Do they know the cause for her?

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    • Posted

      Hi GraceCO,

      No underlying problem for my daughter’s PE apart from long haul flight! GOSH did all the tests possible, the whole list, and repeated a few, still nothing found, which is a relief but also scary as we don’t know if she could have another one! It has affected her psychologically so not easy at times! We all have to be strong and make the most of life! Stay healthy and keep a positive attitude, as much as you can! 

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    • Posted

      Monicap, that's good she doesn't have any clotting disorders, etc. & can come off the blood thinner. At least your daughter now knows she'll have to be mindful of moving, hydrating in situations that pose a risk. I've also heard of people who previously had clots (due to a transient issue) taking a low dose anticoagulant just before flights of 8 hours or more. Might give her (and you!) peace of mind. I can imagine how worrisome this is for you both, but you are so right--all we can do is stay healthy and stay positive. Thanks for all your good thoughts.

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  • Posted

    Just to allay some of your fears - the reason an antidote is needed for warfarin is because it has such a long half life (around 2 days) so it stays in your system for a long time. Rivaroxiban has a very short half life (around 4 - 8 hours I think), so if you did have a bleed, it could self resolve.

    p.s. the warfarin “antidote” is actually a naturally occurring vitamin (K) that the warfarin depletes. So, if you have too much warfarin or bleeding, you can just add more vitamin.  

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    • Posted

      Thanks, Peter. I was told the half-life for Xarelto is longer--up to 12 hours. My doc suggested I not take my pill the day before a ski trip, so I'd be at less risk in the event of a fall/bleed. I decided not to take that chance and sat it out. My thinking was that an antidote would solve that issue & I could ski again. It's a risky sport at anytime--mostly due to ski boarders running into you--but on a blood thinner it's out of the question. Bummed about that, but no options there.

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    • Posted

      Hi Grace,

      I looked it up and the 12 hour half life is for over 65s......sounds like you have grounds to give your haematologist a stern glarefrown

      I suspect the odds of a recurrence are just based on statistics. I am in the same boat as you and mine said “very likely”. 

      P

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    • Posted

      Hi Peter...I'm actually in that over 65s group...just barely at 66. But, my hematologist deserves a stern glare for other reasonswink

      On recurrence...I'm seeing a 50% chance over 10 years, if not anticoagulated. Does that sound right to you?

      My other issue...I have a small basal cell that needs removal (all the many years of fun-in-the-sun beach time) & hope that's not going to be an issue. I see my dermatologist later today & I'll see what she says. Have you had any small surgeries & had to stop taking Warfarin? Assume it would be the same with Xarelto... 

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    • Posted

      You can’t be 66, you don’t type a day over 40...

      Not had any procedures yet, but have one next week. They initially said it wouldn’t be a problem to stop for a few days....until I got them to check with my pulmonologist (I saw my CT scans and it looked like it was snowing in there). Now they have me switching to fragmin (heparin?) for the procedure.  Should be a fun few days.

       

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    • Posted

      LOL...thanks, Peter!

      Good luck with your procedure next week. That sounds like a good plan to switch you to another blood thinner--had no idea that was even possible. I'd sign up for that versus having no protection. I'm sure all will go smoothly for you. You deserve an easy time of it...

      Thanks for all your support. You really do give the best advice and calm nerves around here.

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  • Posted

    You still 9n thinners? What caused yours?
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    • Posted

      Yes, I'm on a blood thinner "indefinitely" because my PE is unprovoked. I had the flu/immobilization just before the PE, but the docs don't think that's the cause. I cleared all the tests. But, I'm 66, and my chances of getting another PE are 20%, according to my hematologist. I don't know how he arrives at that percentage... 

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    • Posted

      There not sure if me kicking a door 20 30 times was the cause of my bilateral pes in November 2016. I was off thinners 6 months after. They never found anything in my legs. My hematologist said I only had a 10% of getting another one. My mom gets them she's on thinners for life but she's never had a blood work up because she's lazy. But I have no clotting disorders or anything. I'm 36. I never saw a pulmonologist until just recently due to a reaction to a beta blocker so I asked him to look at my ct scan from 2016 and he could not confirm or deny if I had a pe due to the scan being not so good. It was a crappy hospital that diagnosed me. So really unsure if I even had one. I'm gonna send my scan to my husband's uncle who's an md in another state and hes going to have his radiology friend look at it.

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