Dizziness- Unsteady

[blondebeauty]

I have been diagnosed with APS only a year ago, but I have had dizziness for many, many years. Been to many doctors, MRI's, etc., but no reason could be found by these tests. Some days are worse than others. Taking Eliquis. Could this be from APS, and if so why? Thank you.

[lupus-support1 Administrator]

Sorry to read this as dizziness can be very distressing. I presume you were referred to a neurologist?

With good wishes,

Ros

[blondebeauty in reply to lupus-support1]

Thank you for your kind wishes.

I have been everywhere and no one helps me.

[lupus-support1 Administrator in reply to blondebeauty]

I’m sorry to read this.

[GinaD]

I had multiple unexplained headaches with intermittent dizziness before my eventual dx with APS. It was an MRI that put the final nail in the coffin that I was making up my symptoms to garner attention. The MRI showed I had dozens of mini strokes. As one sympathetic doctor said, "you can't make up the damage this MRI shows!" I started warfarin and did a few PT sessions designed to improve my balance. The exercises mostly had me standing beside kitchen counters on one foot, then the other while tossing a tennis back and forth or playing with a yo-yo. ( By standing by the counters I had a quick and easy grab should I get dizzy.) My balance returned and a follow up MRI the next year showed that most of the MRI damage had cleared.

Good luck!

[Lure2]

Who diagnosed you? Did you have antibodies positive twice then and did they find a clot or something?

Dizziness is one of the neurological symptoms we have. Read about it and also find a Specialist in that case, because most of us need Warfarin or something not to clot.

I must have Warfarin at the high level 3.5-4.0 to feel ok. I am triple positive with high titres and live in Sweden. Good luck! It is a fight to have this very rare illness that so very few Doctors know about because of that.

[47ginger]

Good morning. Like Gina D I also had vestibular physical therapy. It was so simple that I wouldn't have believed it could work, but the results were amazing. One of the things I like best about PT is that it's a simple, non-invasive way to start the process. I was very fortunate that it worked so well. Best wishes!

[Jmkeefe]

Yes, it is common to APS - I do a "Balance for Seniors" with Cindy video series online (free, I mean, c'mon, I'm poor) but it hasn't helped yet -please know tho it has only been a month since I got my dx. I'm on Eliquis too, today I cross fingers I can no longer cross that I see someone that can discuss this as the FDA stated Eliquis is not very good for those of us with APS.

I hope some of that helps soon and I hope it helps to know there are a bunch of us out here dizzy as hell and trying to walk that straight line to the errand we need to do.

[BeachHaven123]

I am so sorry you are going through this. I find it can come and go. I just wish it had gone and went. Seriously, I was prescribed Dramine by HSS in NY after a surgery. Over the counter and easy to use. They are aware it is one of our truly annoying symptoms. I only use it when necessary- but it seems to do the trick for me.

Feel better soon😢❤️! U

[MaryF Administrator]

Do make sure you get your B12 looked at, (the ranges in the UK are sometimes set far too low, dizziness can be caused by low B12 as well as micro clotting and Hughes Syndrome/APS. MaryF

[Molly100]

I also used to have dizziness and would fall down semi passing out it went on for years. But over the years it has seemed to settle down, never found out why. My INR is 3.5 to 4 range and if I stay within that my symptoms almost disappear. I think at one stage they said migraines caused it. I also had tests and I have no balance function so if I close my eyes I fall over not sure if it's related!!

[myarabella]

Eliquis is contraindicated for patients with APS. In the US there is a bold black box warning stating that those with APS should never take Eliquis. See your doctor ASAP. This is a highly negligent situation that you were prescribed it. The same thing happened to me and I got a clot, so please address your issue right away. There are many other medicine options that are much safer.

[blondebeauty in reply to myarabella]

I thought it is not indicated for TRIPLE APS?

[myarabella in reply to blondebeauty]

It is contraindicated for anyone with APS (double or triple positive)

[BJ24]

I was taking eliquis and had dizziness...I do not have APS.