Migraine Headaches Support Group

Migraine is a neurological disease, of which the most common symptom is an intense and disabling episodic headache. Migraine headaches are usually characterized by severe pain on one or both sides of the head and are often accompanied by photophobia (hypersensitivity to light), phonophobia (hypersensitivity to sound) and nausea.

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annabelle 02/14/2015

I've had headaches and migraines for close to 55 years. I'm now 62. Within the past two years, I was diagnosed with a PFO (Patent Foramen Ovale), which is a small hole in my heart. It's a possibility that the PFO could be causing my migraines. The cardiologist that I've seen has told me and my husband that closure surgery for the PFO is not yet approved for adults. It is approved for children. He's working with us to see what else he can do for me.

I had Chiari surgery in 2009. Unfortunately, I was one of the 20% that the surgery did not help. Since then, my migraines have gotten increasingly worse. The only medication that helps me is Dilaudid. I currently take
20 mgs. a day. If necessary, I can take Axert, Sumavel injections and Tylenol for additional pain relief. I also take 2 migraine preventatives daily. I've been on Disability since 2010.

I'm wondering if anyone else has migraines and has been diagnosed with a PFO, and what you have done.

I wish everyone a pain free and Happy Valentine's Day to all!

YvetteK 02/14/2015

The PFO will only be a factor if it's large enough. Did the doctor tell you where your PFO is on the scale of minor to major?

My sister and I both participated in the pfo study at my headache center. We both have one, but they are too small to be causing the migraines we have. My sister was a 1, and I was only a 2.

I'm sorry your migraines are so bad, but as you said the operation is only approved for children. I hope your doctor figures something else for you.

megsmom8816 02/19/2015

Annabelle....what an interesting read about your PFO. I had one, diagnosed finally when I was 43, 8 years ago. They DID close it up for me because I was having a lot of symptoms. I had it done at the University of Michigan hospital, and they went in with a catheter through my leg and closed it with an Amplatzer device. At that time it was very new, and only two cardiac surgeons in Michigan were doing it. I was back to work within a week. If it had been any larger at all they would have had to do open heart surgery to close it, but he says had they not done anything I would have likely had a heart attack or stroke. I am doing fine now.

The second point of interest in your writing: I also have a Chiari Malformation, found the following year. I suffered from migraines, vertigo, weakness, etc. I had surgery for it, again at the University of Michigan, because I was very symptomatic. An MRI with contrast found that I had a significant blockage to the flow of my CSF, causing a syrinx. I had surgery in 2008 for it, and have had mutltiple follow up MRIs and am doing very well, I still have migraines, but the syrinx is gone.

I do have a degenerative disk disease now, and some back/hip pain that may or may not have been caused by some nerve damage from the CSF blockage.

I do hope that you pursue this. They CAN close holes in the heart with adults. I am proof of this!!

YvetteK 02/20/2015

If the PFO is a cardiac issue, they absolutely would close it for an adult. But the closure of PFOs for migraines is only approved for children, but not adults. I don't remember why. I copied a link further back on this forum about PFOs and adults, I will try to find it and post it again.

YvetteK 02/20/2015

http://circinterventions.ahajournals.org/content/2/5/475.full

This discusses why they don't do surgery on adults. It's an interesting read.

megsmom8816 02/20/2015

Ok that makes sense. At first I thought you meant they wouldn't close it for cardiac issues, which shocked me.

YvetteK 02/21/2015

I do remember reading about adults who were so frustrated about not having their PFOs closed here in the states for their migraines, they actually flew to Europe (I want to say Germany, but don't quote me on that) where they had the surgery done. Some had success, some didn't, but they were willing to take the chance....just anything to try to get relief for the migraines.

Again, i'm so sorry you are having these migraines. We all look for what could be the main trigger. I have so many, I can't just pick on.

Maybe if your cardiologist says that the PFO is large enough, it can be closed AND have a benefit to your migraines.

Let us know what their next step is.

good luck

annabelle 02/21/2015

I plan on calling the cardiologist on Monday to get another appointment to discuss the surgery and PFO with him. The headaches just keep getting worse and worse. Today was particularly bad - major weather changes today and they always cause me major issues.

I can't remember the size of the PFO without going to check my records. Anyone that has migraines definitely has my sympathies!

smileyjones 02/26/2015

I have suffered with migraines for 24 years now. I had an abnormal EKG and had further testing. They found I too have a PFO. At first I was hopeful that it would be the help I'd been looking for, but I was told that at this point in time they do not close PFOs unless/until you have a stroke. Interesting some many people with migraines have them.

With that out of the questions, I'm considering Botox injections. Anyone have any thoughts/experience with that?

thanks.

annabelle 02/28/2015

I had two rounds of Botox injections prior to my Chiari surgery and it locked the migraine in place for 3 months. I had a migraine the day I had the second round of Botox injections, ld have had anything to do with locking the migraine in place or not. I'll never have Botox again though since I had such a bad reaction to them. I don't think the first round did anything for me anyway.

I hope this info helps you!

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