Sunday, May 27, 2012

My Journey With PFO

By Leeloo Wednesday, August 29, 2007

Since August of 2006, my migraines have become chonic.  In regards to the pain, there are times when they aren't so bad, but the fatigue and confusion really dominate the attacks most of the time.  They've changed over the past year, they've wreaked havoc on my life, they've forced me into a hole sometimes where I am unsure of who I am, and sometimes the depression is all too overwhleming.

 

When I had scheduled my first appointment with my migraine specialist, my mother alerted me to an article she'd read that linked the PFO with some migraine sufferers.  This really excited me, because I was told when I was 14 that I had an irregular heartbeat.  I now know that PFO normally does not exhibit any symptoms like an irregular heartbeat, but had I not known my 14-year-old diagnosis I may have never pushed to have the dopplar test.  My specialist was at first skeptical, because even if I had the PFO, I was having too many attacks in a month to qualify for the study.  More than 20 days out of the month were devoted to migraines or other headaches, so our first priority was stabilizing the number of attacks I was having.  This in and of itself was some major work.

 

Since I abused OTC medications like Tylenol and ibuprofen, the first thing was to wean me off of those medications, since they cause rebound and aid transformed migraines.  Unfortunately the spade of medications they had me on (DHE, HTP-5, a muscle relaxant and antidepressant) did not work for my pain, I was then swapped to the nortriptyline only with Axert as an abortive.   I avoided OTC medications expect to take Excedrin or Aleve with the Axert as instructed.  For me, dropping the OTCs was not as difficult as I thought it would be.

 

In January of 2007, my PFO was discovered.  At that time, I was placed on Topamax as well.  The Topamax and I did not get on very well, and I admit that I probably didn't give it much of a chance to work.  Working in the environment I do, it is unfortunately demanding and I needed my wits, which the Topamax took away.  I was then swapped to Inderal LA, which seemed to have a positive effect on reducing my migraines with none of the side effects.  In that time period, I also dropped the Nortriptyline since it had no effect on my migraines prior to the Inderal.  Topamax is a medication you MUST try and fail before being considered for the study.

 

After having some success with the Inderal, I was swapped to Toprol since it is easier on asthmatics.  I had more success, but immediately developed Persistent Migraine Aura--a stumbling block in my effort to get into the study.  An upped dosage of Toprol had an immediate effect on reducing the aura, and at my last appointment I was granted entry into the ESCAPE PFO closure study, just this past August.  I've had to undergo another dopplar and ECG for study purposes, and now keep an electronic journal of my migraines that I transmit to the study coordinator every week.  My migraine medical records are now closed to me until after a year is over with.

9/ 7/07 12:36pm

Hello,

My name is Carolina and I'm in a similar situation. I had a mini-stoke in June '07 and the Dr's told me that the cause was due to taking birth control pills and having migraines with aura. They also found that I had a PFO. My cardiologist told me that I did not qualify for the studies but that he highly recommends for me to close the PFO. But Im so nervous! Im scared about what consequences this could have on my future. Im only 25 and I want to have babies in the near future! And what if this puts me at a high risk for another stroke or blood clots. Im with you on being devasted about the changes that life has.

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By Leeloo— Last Modified: 09/04/10, First Published: 08/29/07