Migraines and PFOs

Discussion in 'Fibromyalgia Main Forum' started by krsmom, Jun 12, 2008.

  1. krsmom

    krsmom New Member

    I see a number of us have migraines and it is considered to be part of fibro. For me, I had migraines since my teens and I've only had fibro since 2003. My daughter has migraines. My father had severe migraines. I was recently watching an episode of Mystery Diagnosis on Discovery Health Channel and it was about a woman who had migraines that were severe and very little relief. By some quirk of nature she had problems that caused her to go see a cardiologist and was diagnosed with a PFO. A PFO is a small hole in the heart. Many people have them. If you've ever been told you have a heart murmur this is what they are usually referring to and it is very hard to diagnose. What happened was people who had these holes patched reported no more migraines. The lady on mystery diagnosis was completely cured from her migraines after having her pfo patched.

    I researched this as we also have a history of holes in the heart on both sides of my family. I've had heart murmurs detected and so has my daughter who shares migraines with me. There is a study going on right now that is enrolling people to do a double blind study on Migraines and pfo's. I was called today and told I am a candidate. I should be traveling to houston soon to have the beginning tests to check. It is a non invasive test where they ultrasound your veins in your temples as they inject a solution that can be detected if it is passing through this hole and travels up to the left side. If you pass this test you undergo a procedure where they go through a vein into your heart and patch it. Some have reported a complete cure to their migraines. I am so excited to participate in this study as migraines plague my family and I suspect a genetic cause. The beauty of this is if it is FDA approved in 3-5 years it could drastically change life for many of us. This would mean no more anti seizure meds and no more triptans which I rely on every month. It would cure these migraines in one procedure.

    I wanted to share this info because it is promising new ground and applicants are needed. You can google it up and see if a study is being done and if you qualify. You haave to have at least 10 migraines a month and no more than 14. You also need to have failed at least two medications such as inderal, neurontin, topomax and others used. I hope this information helps and I'll report back if i get any benefits although if I don't it may be that I didn't recieve the patch as we don't know for a year until the study is unblinded. If you are a sham and it becomes FDA approved then the device is paid for anyway by the study.
  2. hi all,

    many thanks for your post.

    my brother was born with a hole in his heart,and a operation was perfomed on him,in the 1960,s.to repair the hole.

    he now is 55.and he had to have the operation,as a child because his lips were blue,as were his finger nails.and he couldnt breath very well.

    it would make sense that something like this could happen to other siblings too.

    my other brother, was told that he has a heart murmour.

    my doctor just looks at me funny,and confused when he listens to my heart.

    then says nothing.and i dont ask...what do they care anyway?

    take care,love fran
  3. cookie1960

    cookie1960 New Member


    I have suffered from chronic migraines since my teens, and diagnosed with FM in 2003. My parents were told upon my birth that I had a small "murmur" that would heal on its own. A few dr's have noticed it still there - but haven't made much comment.

    I have my annual physical scheduled for next week... and this is something I will bring up with my dr. Thank you so much for the post, maybe there is some hope for us migraine sufferers after all. The only thing that "works" for the migraine pain is 100mg of Imitrex - which pretty much wipes me out for the day.

    Good luck on your trials...please keep up posted.

  4. deliarose

    deliarose New Member

    Rush University Medical Center in Chicago is doing a similar trial.

    Maybe it's a multi-center trial.

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