Wednesday, February 11, 2009

Factor V Leiden

Oh my gosh. I have so much news, I'm going to have to break it up into two posts. Plus it's getting late and I just got a headache (me?!). :)

So I'll start with very cool news. Well, most people wouldn't think it's cool, but I do. My mom has become a Facebook fanatic and she recently found a "long lost" relative on my dad's side via Facebook. This relative told her that a condition called Factor V Leiden runs in my dad's side of the family (it's common in Italians, which they are, and I am too, partly). Basically, the condition is a genetic disorder where the blood has a tendency to clot. People who have it have a risk of stroke, which is why most people wouldn't think the news is cool. But migraines have been linked to vein blood clots and therefore this news gives me a little hope of a cure for my headaches.

Thanks to Mayo Clinic, you can read all about Factor V Leiden. It mentions a test you can get to see if you have it. I had a neurology appointment yesterday and ended up getting the blood test done that day as well, so I should have results in about a week. If I do have the condition, treatments would be Herapin and Warafin, blood thinners, but I'm not sure if I'd be able to take them unless I actually have blood clots. I'm going to wait and see what my test results say first.

Two more updates:

1) I'm finally stopping Bystolic. My neuro checked my heart rate and was shocked that it was so low, and I had a thermometer in my mouth at that time (he said it had something to do with a thyroid test and I ended up getting a blood test for that too) so I couldn't talk much, but I did manage to say "Bystolic" and he said OOOH! Since my last visit, in Dec. I think, he had forgotten I was on it. I asked if I could stop and he said yes. I was taking it for migraine prevention and I've had migraines lately, so there's no point. My heart rate was down to about 60 beats per minute, and today it's about 80 (he didn't specify to wean off it, but I'm going to just to be safe).

2) My appointment with the new neuro has been scheduled. It's NEXT WEEK! I'm nervous because my neuro just put me on progesterone (more about that in my next post), and I'm afraid the new neuro is going to change things up now that I'm finally potentially starting something that might maybe perhaps but probably not work.

Next post: natural progesterone, and my first compounding pharmacy experience!


Penelope said...

It's been a long time since you made this post, but I thought I would let you know that if you are thinking of pregnancy (or taking BCP) it is VERY important to know if you have FVL.

It runs in our family (actually, I posted to a large family email that I had it, was wondering if I was your link...but we're Irish!)

Heather said...


Thanks for the heads up. I did end up getting the blood test for FVL, and it came up negative, as most of my tests do. But I'm sure your warning will be helpful for others who stumble on this blog post like you did, so thank you for sharing! :)

Jennifer Forbes said...

Hi I'm new here, my names Jen, I've had headaches for years. Found you thru a keyword search for bystolic. I love all the info you have on it and really appreciate it. I'm due to see my neuro in a few weeks and my key question for him was going to be was bystolic helping me?

My regular doctor put me on bystolic about 10 months ago due to a really fast heartbeat- the cause they determined later not to be a problem with my heart but to be an wound they were treating that tested positive with MRSA.

Since I had a touch of high blood he put me on it and kept me on it after the wound treatment was concluded.

After the fall I was down for months and I did have to make some major changes in my eating habits to compensate for my lack of activity. What I noticed was my headaches started to feel different. I went for longer periods of time without migraines...once for a whole three months. I had never ever gone more than three or four weeks in my entire life.

My gyno added progesterone about two years ago ( for shedding of the uterus) , so my daily meds are, 5mg of progesterone for two weeks per month and I was getting as little as 1 headache per month where the neuro alone had me down to about 4-6. That was with 200 mgs of toparimate,and 10 maxalt as need. With the bystolic 2.5 I'm having multiple months without headaches.

I'm a lot older than you so I know that could make a big difference in outcomes. Hope the progesterone works for ya! Nobody should have to live with tons of pain.

I am not using the natural progesterone so I know there's a big difference there too! I find the stuff amazing both for my gyno health and didn't want to have any female surgeries and the bonus was it cut my migraines down easily by 75%.

Good luck with your appointment next week, hope all goes well :)