Support group for people who have Factor V Leiden Mutation, created by eHealthMe (http://www.eHealthMe.com). To join the group, do any of these: create a post to introduce yourself, ask a question, or simply follow the group.
I was diagnosed with Factor V Leiden in 2009 after I had a brain stem stroke. In 2011 I experienced sudden coronary artery blockage FVL strikes again. In 2015, Menieres Syndrome - idiopathic diagnosis. In 2016, bi-lateral DVTs and bilateral PEs - root cause diagnosis was FVL.
The missing piece of the puzzle for me was the root cause of the Menieres Disease. I am so happy tonight as I found this support group tonight! I believed all along that the Menieres was caused by my FVL condition.
Are their actually other people out there who have experienced a similar pattern of illness? And who have FVL? Thank you for the opportunity to join this support group. It will be nice to be able to educate my dis-believing DR's on the link between FVL and Menieres. Please point me in the right direction to study the research.
Post created 3 months 2 weeks ago
What is the recommended Xarelto daily dose?
Question created 3 months 4 weeks ago
I guess I'm one of the weird ones. I was diagnosed with Factor V Lieden four years ago, and have a Greenfield Filter. In reading about thus site, they mentioned "no one has ever had loss of libido along with Factor V -Lieden (not quite sure what the problem is). Usually, I can't get an erection, but the few times I do, it never last. Anyone have any ideas?
Post created 4 months 5 days ago
Post created 5 months 2 weeks ago
I have Factor V Leiden and have had severe back pain. Im wondering if apllying voltaren gel is safe?
Question created 7 months 3 weeks ago
Heterozogous Leiden V diagnosis at age 53, about 2 months ago meant immediatly stopping estrogen replacement therapy and all vitamin supplements.
I'm suffering extreme fatigue snd having great difficulty getting through daily activities, like grocery shopping or sn exercise class I've done three times a week for 2 years. I get very sweaty, dizzy, short of breath, pale, weak & really tired & thirsty. Its overwhelming.
My body temperature & mood swings are intense an irradic.
I am trying to educate myself about dietary recommendations anc am aware of the need to limit vitamin k foods & increase salicylates. But I am still trying to remember which foods belong to which of yhese groups (I am slso increasingly absentminded & having trouble recalling names of things)
I am trying to find out which vitamin supplements ard safe to get back on. I know E & niacin ard good. I think B12 would help me, but is it problematic for Leiden V patients?
Also, Omega 3 - my eye doctor wants me taking this for chronic dry eye - id that a problem?
So many questions & anxiety about what to eat and not having energy of motivation to do anthing.
Can't find a nutritionist or doctor that knows much about safe/healthy living with LFV. They are dismissive if you are not having VTE symptoms. I want to prevent not just hope, then treat.
I know estrogen replaccment is dangerous fof me, but quality of life off of thd estrogen has greatly decreased. I need the energy to function. I need to combat fatigue, weight gain, heat flashes, depression.
Post created 8 months 4 weeks ago
I had a small PE April 7, 2016. It was at that time when I discovered that I was positive for FVL. My mother and sister were the only family members that tested and they were both positive. My aunts are all old and don't bother and my other two siblings aren't too interested either. As far as we know, I am the first to present an incident in clotting/PE...damn! I was 47 at the time of PE. I was over weight, depressed, light smoker, vitamin D deficient, high B/P and cholesterol, sedentary....all the perfect storm to trigger a blood clot. I was put on Xarelto 10 months ago. I've decided to switch to Elequis as it may have less side effects and I like the fact that it has a shorter half life (taken twice a day). I plan to stay on blood thinners for one year. I plan to take aspirin and Tumeric. I realize I have a higher risk than the average person but my doctors don't feel I need to be a lifer at my age with Heterozygous FVL. I've changed my whole lifestyle since this happened. I've lost 40 lbs., normal B/P and cholesterol, I am very active and eat very healthy. The depression has lifted since this experience. It's been a long and hard road but I've become closer to my family and am healthy for the first time in years. I don't take my life for granted anymore. I feel good usually but I still have some crappy days, Xarelto's side effects of burning eyes and weird, hung over feeling on some days. I've become accustomed to the drug's side effects. I'm very apprehensive trying Elequis but I may feel better! I certainly hope so. I'm very nervous discontinuing in April!! I don't know what to think about staying on blood thinners for life ...yuck! Or taking a chance off of them and continuing my course by removing clotting triggers, of course I cannot remove the FVL or the fact that I already had a PE. Does anyone know something I don't about our condition? Any advice or information would be appreciated!
Post created 11 months 6 days ago
Several people in my family recently had head lice, but I did not get them. I am on a high dose of Coumadin for life for Factor V Leiden, DVT's, etc. and I was wondering if that could be a reason why I did not get them... or if the two are unrelated... Thank you!
Question created 11 months 1 week ago
I am 76 years old. I have factor V Leiden mutation and was just put on Xarelto. I was on Coumadin first then warfrin for over 50 years. I have been on xarelto for one month. I'm nervous since there is no way to check how thin your blood is. I've already had one stroke while on warfin by that was quite a while. I do enjoy eating more veggies but not enough to have another stroke or hear attack. I do have other health but I go to a hematologist for my factor V Leiden mutation. He put me on Carleton and said I should come back in a year. Please any advice would be appreciated.
Post created 11 months 2 weeks ago
Have taken warfarin for 30 years. Switched to Xarelto several months ago and had a heart attached and later 2 pulmonary embolisms. Doctors have switched me back to warfarin saying Xarelto does NOT appear to work for my Factor V Leiden.
Post created 1 year 6 days ago