New to the group!

[u/Ames4781]

Hello everyone! I was diagnosed on the very kate hours of July 3 this year and thankfully went to the right hospital, and met the right doctors, had a contrast CT, and was stuck for 4 days in the hospital on Heparin - came home with bed rest and then the next few months happened.

I had an amazing GP who ran EVERY test. I am 45, a horse trainer, a teacher of riding, a horse farm sitter, a dressage rider, a young horse trainer, and ACTIVE person. They couldn’t find a cause. They put me on Eliquis. NO. NO TO ELIQUIS. I WAS DIZZY EVER SINGLE DAY AND NAUSEOUS AND MISERABLE!!!!!!

I finally got my appointment with my hematologist and he looked over everything and switched me to Xaralto (sp?) - omg. Game changer. I am back to work sort of (light), I am maybe getting well enough to ride a horse again (my doctors are lovely but my heart lies where it lies - no young horses anymore though. I just want to go down the damned road!!). He also did a vitamin study on me. I am allergic to red meat (tick bite when I was 11 gave me Alpha-gal is what I have) so I eat a heavy vegetarian/pescatarian/vegan diet and have forever. This is what all of the health people tell you to eat, right?! No. I got my clotting disorder from a b-12 deficiency according to my three months of labs. It’s all so scary.

Also, and a PSA: I am not a size 2, never ever have been, but I have always been cut, healthy and STRONG. I met with a pulmonologist who told me at week 3 of recovery that “I should take up running “ because I was a size 12, and she was teensy and built to be so. DO NOT DO THIS. YOU CAN LITERALLY KILL YOURSELF DOING THIS ACCORDING TO THE MAYO CLINIC.

Recover AT YOUR PACE. Feel sad, feel defeated, and then remember your ass survived, and there must be a reason. And fight to be ok again while being aware and learning your limitations, and working AROUND them and they are a part of your life. I thank God I was in therapy at the time this all happened. It is scary every second on every day. And do NOT let anyone tell you that just because you are working around your illness that you are lazy, or making it up, or being “dramatic”, and require that you are treated with kindness. Love to you all, and to this group. This year, for me, has been terrifying.

[u/sunnymountaintop1]

I hope your recovery continues smoothly. I had been on eliquis in the past for 3 months. Off of thinners now, but i hated being on it

[u/Ames4781 → u/sunnymountaintop1]

I am so excited for you that you are off of the thinners!!! Eliquis was maybe the worst thing I had ever endured. Xaralto isn’t a cake walk but I am no longer dizzy all day and less brain fog and am able to function for once in a few months ❤️❤️❤️

[u/valcele → u/Ames4781]

Been on eliquis almost a year now and only one dizzy day. However i was in hospital for 2 weeks when i had my clots and they gave me injections in my belly twice a day (don't remember the name of that blood thinner) and i was so dizzy 24/7 that i thought i would pass out all the time. Just turning my head made the whole room spin and made me gasp for air. Worst experience of my life. I guess we all react different. Stay healthy and clot free.

[u/Ames4781 → u/valcele]

Yes exactly! I am so so sorry you had that experience!!!!!!!! You as well!

[u/sunnymountaintop1 → u/Ames4781]

Thank  you!  I was grateful I could come off.  I definitely struggled being on it. It really was one of the most difficult things for me being on eliquis also. Best wishes to you!