Diagnosed w/ portal vein clot after CT for stomach pain (ulcer) in September. Hematologist did tons of blood tests to find out why I got the clot. Factor V Leiden was found. Started 5mg Eliquis 2x’s a day. I’m so scared of head injury or getting cut accidentally. Lately headaches at top of head but I picked up a virus last week so not sure what’s causing the headache. Anybody else on Eliquis w/headache?
Thanks in advance & hugs to all of you!
Diagnosed w/ portal vein clot after CT for stomach pain (ulcer) in September. Hematologist did tons of blood tests to find out why I got the clot. Factor V Leiden was found. Started 5mg Eliquis 2x’s a day. I’m so scared of head injury or getting cut accidentally. Lately headaches at top of head but I picked up a virus last week so not sure what’s causing the headache. Anybody else on Eliquis w/headache?
Thanks in advance & hugs to all of you!
Hi @ducklynn, it can be scary to learn that you have factor V Leiden. As you live with knowing you have this, hopefully you will become less fearful of injury. You might appreciate this related discussion:
- Factor V Leiden: What exercise helps with blood clots? What to avoid? https://connect.mayoclinic.org/discussion/factor-v-leiden/
I'm also tagging fellow members like @dhutch@maribel8@emarcatkin@sps488 who have experience with factor V Leiden and Eliquis, although I don't know if they experience headaches.
Did your headaches only start with the medication or since you had the virus last week? Have they subsided?
Hi @ducklynn, it can be scary to learn that you have factor V Leiden. As you live with knowing you have this, hopefully you will become less fearful of injury. You might appreciate this related discussion:
- Factor V Leiden: What exercise helps with blood clots? What to avoid? https://connect.mayoclinic.org/discussion/factor-v-leiden/
I'm also tagging fellow members like @dhutch@maribel8@emarcatkin@sps488 who have experience with factor V Leiden and Eliquis, although I don't know if they experience headaches.
Did your headaches only start with the medication or since you had the virus last week? Have they subsided?
Yes, in 2017...Memorial Day I went to the hospital ER feeling sick but not sick enough to go to the hospital, I thought. But my late husband thought otherwise. I had been experiencing shortness of breath. But attributed this to an upcoming birthday! After several tests at the hospital, I was told I would be hospitalized. I had dvt and PE's. I looked at the dr. and said..."Am I going to die?" He said "No...but if you had not gotten here in a timely manner, you could have experience a heart attack, stroke....or even death. For 3 days, I had both arms inserted with IV's and one of the medications was Heparin which dissolves clots. Because I had not been in an accident, gone on a long flight where I could not move around, had surgery (but I had cataract surgery but they said during cataract surgery one is not sedated very long), a hematologist was called in. She diagnosed me with Factor V Leiden. Sent me home with Xarelto which broke me out in a rash and then changed to Eliqus. I have been fine since but don't like being on a blood thinner....which she said I will be on indefinitely.
Hi, I have Factor V Leiden as well and am on Eliquis for life. Blood clot portal vein of liver (no liver damage thankfully.)…
I too dislike (to put it mildly) the lifelong need for Eliquis and am frightened because of the chance of severe or deadly bleeding if injured. Next CT in April to see if clot has cleared. I picture it being absorbed safely by my body when I think of it. We are in this together and we will make it! I have faith that it’s just a matter of time before the next amazing blood thinner that won’t pose a severe risk of bleeding is on the market! Science rocks!
We’ve got this!
I’m shooting for 15,000 steps a day and minimum of 10,000.
Sunshine26, did you only recently find out that you have Factor V Leiden, a blood clotting disorder? What lifestyle strategies do you use to help prevent clots?
I was diagnosed with Factor V Leiden 3 years ago (I'm currently 39) and I have to take Warfarin for the rest of my life. Long story short - I found out I had it after developing bilateral PE (multiple clots in both lungs).
In my opinion, Warfarin is a high maintenance drug. What I mean by that is you may to have to get your INR checked (via blood draw) on a regular basis and based on what your INR is you may have to adjust your dosage. The therapeutic range for my INR is 2.0 - 3.0; if I am lower than 2, I will need to increase my dosage and if I am higher than 3, I will need to reduce my dosage. Your doctor may set you up with an anti-coagulation clinic; if he/she does, then the clinic will be the one to manage your dosage, blood draws, etc.
The main thing regarding your diet is you will have to be mindful of your Vitamin K intake (green leafy veggies like spinach, kale, etc.) because Vitamin K can affect your INR. Its super annoying to me, but if you are able to manage that than you should be. Its similar to how someone with diabetes have to watch their sugar/carb intake.
Hope this helps; let me know if you have any other questions!
Hi, I am new to this group. My 27 yr old daughter was diagnosed with essential thrombocythemia. (gene disorder factor V). I am even in the nursing field and am totally freaked out about the situation. She has been diagnosed for appr 3 yrs. we had our first problem with a nosebleed that would not stop. she is on anagrelide. I am curious about the warfarin. It has the same effect on the blood as far as lower the platelets, but is it safer?
I'm rambling on but super scared to death......
Hi, I am new to this group. My 27 yr old daughter was diagnosed with essential thrombocythemia. (gene disorder factor V). I am even in the nursing field and am totally freaked out about the situation. She has been diagnosed for appr 3 yrs. we had our first problem with a nosebleed that would not stop. she is on anagrelide. I am curious about the warfarin. It has the same effect on the blood as far as lower the platelets, but is it safer?
I'm rambling on but super scared to death......
Welcome, @dturner20. I can imagine that you're totally freaked out as a mom. Is warfarin being suggested for your daughter? Does she live close to you or are you supporting her from afar?
Hi, I am new to this group. My 27 yr old daughter was diagnosed with essential thrombocythemia. (gene disorder factor V). I am even in the nursing field and am totally freaked out about the situation. She has been diagnosed for appr 3 yrs. we had our first problem with a nosebleed that would not stop. she is on anagrelide. I am curious about the warfarin. It has the same effect on the blood as far as lower the platelets, but is it safer?
I'm rambling on but super scared to death......
@dturner20
Welcome to the Mayo Clinic Connect group. I find that this is an excellent place to “ramble,” as we are all fluent in that form of communication. We’ve all been there.
Have you spoken to your daughter about signing a Release of Information so that her physicians can speak to you about her treatment? As a patient, I find it so helpful to have advocacy when I am in the thick of things. I often forget to ask my questions or when asked, forget what I’ve been told. With your nursing background, I’m sure you would be an excellent person to fulfill this role for her. If not in person, phone follow up can be arranged.
Do you think your daughter would be amenable to sign an ROI?
I was diagnosed with Factor V Leiden 3 years ago (I'm currently 39) and I have to take Warfarin for the rest of my life. Long story short - I found out I had it after developing bilateral PE (multiple clots in both lungs).
In my opinion, Warfarin is a high maintenance drug. What I mean by that is you may to have to get your INR checked (via blood draw) on a regular basis and based on what your INR is you may have to adjust your dosage. The therapeutic range for my INR is 2.0 - 3.0; if I am lower than 2, I will need to increase my dosage and if I am higher than 3, I will need to reduce my dosage. Your doctor may set you up with an anti-coagulation clinic; if he/she does, then the clinic will be the one to manage your dosage, blood draws, etc.
The main thing regarding your diet is you will have to be mindful of your Vitamin K intake (green leafy veggies like spinach, kale, etc.) because Vitamin K can affect your INR. Its super annoying to me, but if you are able to manage that than you should be. Its similar to how someone with diabetes have to watch their sugar/carb intake.
Hope this helps; let me know if you have any other questions!
So, when my Dad and then my Mom were on warfarin, both for heart conditions, my Mom planted some kale plants; you are suggesting that one should not eat too many leafy, green vegetables? I wonder why my Mother went for kale, is it stronger in vitamin K than spinach; knowing Mother, she would want to get all of her vitamins? The major avenue to stay away from is grapefruit, which would probably be good for me, as well as the leafy, green vegetables.
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Diagnosed w/ portal vein clot after CT for stomach pain (ulcer) in September. Hematologist did tons of blood tests to find out why I got the clot. Factor V Leiden was found. Started 5mg Eliquis 2x’s a day. I’m so scared of head injury or getting cut accidentally. Lately headaches at top of head but I picked up a virus last week so not sure what’s causing the headache. Anybody else on Eliquis w/headache?
Thanks in advance & hugs to all of you!
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Like -
Helpful -
Hug
2 ReactionsHi @ducklynn, it can be scary to learn that you have factor V Leiden. As you live with knowing you have this, hopefully you will become less fearful of injury. You might appreciate this related discussion:
- Factor V Leiden: What exercise helps with blood clots? What to avoid?
https://connect.mayoclinic.org/discussion/factor-v-leiden/
I'm also tagging fellow members like @dhutch @maribel8 @emarcatkin @sps488 who have experience with factor V Leiden and Eliquis, although I don't know if they experience headaches.
Did your headaches only start with the medication or since you had the virus last week? Have they subsided?
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Hug
3 ReactionsThe headaches are gone, must have been the virus. Thank you so much for your reply and the additional link! Have a wonderful weekend!
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2 ReactionsHi, I have Factor V Leiden as well and am on Eliquis for life. Blood clot portal vein of liver (no liver damage thankfully.)…
I too dislike (to put it mildly) the lifelong need for Eliquis and am frightened because of the chance of severe or deadly bleeding if injured. Next CT in April to see if clot has cleared. I picture it being absorbed safely by my body when I think of it. We are in this together and we will make it! I have faith that it’s just a matter of time before the next amazing blood thinner that won’t pose a severe risk of bleeding is on the market! Science rocks!
We’ve got this!
I’m shooting for 15,000 steps a day and minimum of 10,000.
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Helpful -
Hug
3 ReactionsAnyone here that’s FactorV Leiden Homozygous
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2 ReactionsWelcome, @sunshine26. I moved your post looking for others with Factor V Leiden to this existing discussion:
- Anybody else have Factor V Leiden? https://connect.mayoclinic.org/discussion/anybody-else-have-factor-2-and-factor-v-leiden/
I did this so you can read previous posts and connect easily with members like @ducklynn @reginarenaye @piglit @sherohio @susangourdlady @hollyteachet @patientk and more.
Sunshine26, did you only recently find out that you have Factor V Leiden, a blood clotting disorder? What lifestyle strategies do you use to help prevent clots?
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Like -
Helpful -
Hug
1 ReactionHi, I am new to this group. My 27 yr old daughter was diagnosed with essential thrombocythemia. (gene disorder factor V). I am even in the nursing field and am totally freaked out about the situation. She has been diagnosed for appr 3 yrs. we had our first problem with a nosebleed that would not stop. she is on anagrelide. I am curious about the warfarin. It has the same effect on the blood as far as lower the platelets, but is it safer?
I'm rambling on but super scared to death......
-
Like -
Helpful -
Hug
6 ReactionsWelcome, @dturner20. I can imagine that you're totally freaked out as a mom. Is warfarin being suggested for your daughter? Does she live close to you or are you supporting her from afar?
-
Like -
Helpful -
Hug
2 Reactions@dturner20
Welcome to the Mayo Clinic Connect group. I find that this is an excellent place to “ramble,” as we are all fluent in that form of communication. We’ve all been there.
Have you spoken to your daughter about signing a Release of Information so that her physicians can speak to you about her treatment? As a patient, I find it so helpful to have advocacy when I am in the thick of things. I often forget to ask my questions or when asked, forget what I’ve been told. With your nursing background, I’m sure you would be an excellent person to fulfill this role for her. If not in person, phone follow up can be arranged.
Do you think your daughter would be amenable to sign an ROI?
-
Like -
Helpful -
Hug
2 ReactionsSo, when my Dad and then my Mom were on warfarin, both for heart conditions, my Mom planted some kale plants; you are suggesting that one should not eat too many leafy, green vegetables? I wonder why my Mother went for kale, is it stronger in vitamin K than spinach; knowing Mother, she would want to get all of her vitamins? The major avenue to stay away from is grapefruit, which would probably be good for me, as well as the leafy, green vegetables.