Getting frustrated...do I just close the PFO?

I’m a 26 year old female. I started having migraines and MAV at 10 years old, and have done various forms of treatment since I was a teenager. I was put on multiple anti-depressants and various forms of asthma treatments as attempts to get at the dizziness, chest pain, numbness, nausea, and vomiting I was experiencing.

Finally, at 24 I was sent to a cardiologist who ran a stress test. The only abnormality was that my heart rate raised from resting to active ‘too quickly’, but they stated my heart was healthy. They ran a bubble test and revealed a PFO. They stated that the PFO is measured on a scale of 0-5, with most of the 20% of the population having a 0-1 resting and a 1-2 while straining. My PFO was considered large at 3-4 resting and 5 straining. However, the cardiologist stated not to worry about it.

My symptoms continued and the asthma treatment I was prescribed did absolutely nothing. I saw a second cardiologist who stated that the research on PFOs is controversial and all comes out about 50/50, but that he does close them and would look into closing mine considering it’s size and my symptoms. However, he wanted me to see a neurologist first.

At the neurologist was the first time I had ever heard of MAV or the migraine brain. She started me on Topamax daily,zolfram for nausea, and another med for when aleve and zolfram wouldn’t cut it.

This worked okay for headaches for about 9 months, except the dizziness continued and I had a few scary incidences, including one that involved having to pull over on the freeway when I suddenly lost feeling in my hands and became disoriented. My topamax was upped and then my hair started to fall out, in addition to the dizziness.

Now - I am on topamax, aleve, zolfram, the emergency med, celexa for dizziness, alpha lipoic acid for the numbness, biotin, CoEnzymeQ, Flaxseed oil, vitamin E, and a B Complex to try and keep my hair from falling out.

I do my yoga, drink my water, swim, meditate…I’m just frustrated because my symptoms are less, but they are still present to a point that impacts my life. I’m not sure I can maintain this level of medication and hair loss at my age, let alone upping it if this concoction isn’t working or the hair loss doesn’t stop. However, I’m not sure if I can commit to a heart surgery that doesn’t have very conclusive evidence that it will help either.

Has anyone here had the PFO closure or in the process of making this decision? Part of me feels like, worst case the PFO closure is a pretty easy surgery that would reduce my risk of stroke and best case it would help with my MAV symptoms. The other part of me feels like I might be putting myself through a needless heart surgery at 26.

Hi,
I, too, have been diagnosed with a pfo. My first neurologist thought I should close it…the two cardiologists I spoke with said they wouldn’t, and didn’t believe it had anything to do with MAV since I’ve obviously had it since birth. I’ve struggled with the “what if’s” of getting the surgery. My husband says I should close it, like you said it’s a straight forward procedure. And would minimize my stroke potential. I also tested positive for the MTHFR gene, which is a blood clotting issue and predisoses one to stroke as well.
There is a doctor at UCLA who was doing a big study on this. His name is Dr. Tobis…I would consider going there for another opinion.
I haven’t heard much about Topamax and hair falling out…that is a bummer. DId you say you are taking folic acid? What dose are you on?
You could try switching to Lamictal? I have heard good things about that med.
Sorry you are going through this. Have you been on any of the tricyclic antidepressants?

Kelley