UPDATE 6-30-15: Thank you so much for your help. We’ve been asked to turn off this request as they have been swamped and have what they need.
Have you, or a loved one, had a stroke or a stroke-like event (afib, chest pain, dizziness, palpitations, or fainting)? If so, you’re needed for some research.
Find a Cure Panel (FACP) specializes in patient research for rare and serious diseases and conditions such as strokes. FACP is conducting some research for people who have suffered a stroke or stroke-like event, or their caregivers.
It’s very easy to participate. It’s one confidential and anonymous call with one moderator talking about your experiences. FACP gives you an 800-number to call in and schedule the call at your convenience.
To qualify:
- You must live in the US
- You or your loved one must have suffered a stroke or stroke-like event
- A stroke-like event is defined as afib, chest pain, dizziness, palpitations, or fainting
- You or your loved one who suffered the stroke must be over the age of 50
- You must NOT have any of the following implanted cardiac monitors: the Confirm, Reveal XT, and Reveal LINQ
- Qualifying caregivers must be very knowledgeable about their loved one’s condition and treatment
- Must NOT be using Veteran’s insurance
If you qualify and do the call, FACP will make a donation of $100 to StopAfib.org.
If you are interested in participating, please email us at [email protected] and reference stroke/stop afib
Yes,suffered Afib related stroke 8 years ago
I’ve had afib 10+ yrs. Had major stroke July 30, 2013. Quick response saved me. Clot removed from brain. Made miraculous recovery. However, I still have “irregular” heart rate all the time. Take drugs & Coumadin.
still trying to understand why the address for this organization is a post office box in Malibu.
Marian,
You have us confused with another organization that is located in Malibu (a-fib.com). That is not us.
We do have a PO Box, but that is because we are rural and do not have rural mail delivery here; thus, a PO box is the only way that we can get our mail. But, we are in rural Texas (http://www.stopafib.org/contact.cfm), not in Malibu.
Mellanie from StopAfib.org
i’m sorry to have missed the opportunity to participate in this very important research. I have learned so much from being part of the StopA-Fib org – and it’s wonderful that more research is being done in this area of A-Fib.I found out that I seem to have what is known as Vagal A=fib – and I’m trying my darndest to find out how to manage this without the use of blood thinners. Very simply – I prefer to learn about prevention – as I’m sure most people do – rather than take meds. The situation I’ve encountered is that of the several cardiologists I’ve dealt with – only one dealt with “preventative” measures. The others are very evasive when mentioning Vagal and prescribe blood-thinners. So looking at all options is, for me, the way to go.
Lenore, Thanks for your kind words. I’m glad you’ve found us to be of help. Vagal afib is not well understood, so it’s difficult for doctors to help you figure it out. Women who are 65 or more and have afib should be on anticoagulants because women with afib can have a 5 times higher risk of stroke than men. If you’re younger, if you have one of other risk factor besides afib, then blood thinners are recommended (not aspirin).
Mellanie
Hi Mellanie,
Like Lenore, I have vagal paroxysmal atrial fibrillation and have had for over 17 years.
Except for 2 exceptions, these episodes commence when I am sleeping, they waken me and are totally exhausting. When I do some strenuous physical exercise ie., run on the spot, bicycle, run up several flights of stairsbetc. the episodes are less exhausting as I have many stronger beats and I believe get better oxygen supply to my brain. All episodes are accompanied by gastric distress. These episodes can last anywhere from a few hours to several days.
Of interest, my father and one sister had/have the condition. My mother had chronic atrial fib.
I have no idea as to cause – maybe, rich food late at night along with fatigue because of too much activity. I find treatment opinions vary from Doctor to Doctor.
btw – not that it matters – I am turning 73 in July – am physically active.
Pat Dobec
Pat,
When afib episodes start doing sleep, it is quite often due to sleep apnea. About half of those with afib have sleep apnea and about half of those with sleep apnea have afib. You may want to ask your doctor for a sleep study (I don’t know why so many doctors don’t think to test those with afib) as treating sleep apnea can decrease the amount of afib you have and can sometimes make it easier to treat. At our National AF Patient Conference in March we had a wonderful presentation on sleep apnea from one of the world’s top sleep apnea and afib experts. That video should be available fairly soon for you to review.
Mellanie
All, Thank you for being willing to help with the research. The number of folks replying was overwhelming.
Dr Andrea Natale in Austin Texas is participating in at least six different studies if I remember correctly one of them is specifically about vagal afib
the main phone number for their office is 512 8073 150 and ask for the afib research department.
I was fortunate enough to participate at the end of one trial during my ablation about 4 weeks ago I’ve had excellent results
Stacey,
Thanks for the heads up that Dr. Natale’s team is researching vagal afib.
Mellanie