So I got the necessary EKG and the Domperidone was shipped to me. Side note to anyone considering this medication it is not covered by insurance here in the states due the lack of “approval” by the FDA as I mentioned in my prior entry. I’ve seen multiple people in support groups that I belong to post drastically varying prices. For myself I was prescribed 10mg three times a day to begin with, and that prescription cost me just under $45.00. Compared to some of the other pricing I’ve seen people say they have encountered I think that was a good price. I suggest that if you are going to be taking this medication that you look around at pricing and availability, and just remember that your “cost” will very with the amount of the medication you are prescribed. So if your taking 10mg four times a day, you cannot compare your monthly cost to someone taking 10mg once a day or twice. I do think it’s worth “looking around” though, and I would also caution to be certain you are using a reputable pharmacy. In my case my motility program picked the supplier, contacted them on my behalf and handled everything for me; and that worked out quite well.
So the EKG was done, the Domperidone arrived in the mail and by the end of the first week of April I had begun to take the medication, 10mg three times/day with meals. So how did that work out for me? Was this my miracle cure? I was so hopeful and excited when I began taking it that it’s disappointing to me even now to have to say that Domperidone was a bust for me on all fronts. First of all it did not have any impact on my good days vs. bad days. I had just as many bad days, and honestly in April of 2014 I had MOSTLY bad days, more so that I had been having in the last couple of months. I do not think the medication CAUSED the “bad days”, it’s quite common as I’ve learned from everyone I’ve spoken to who has gastroparesis for there to be no real rhyme or reason as to when or how your body decides if it will in fact be a good day or a bad day. So I do not attribute my increase in “bad days” to the Domperidone, those days are just a very real part of this condition. However, Domperidone also did not HELP me by any means. For the period of time that I took it I saw no relief and no improvement in my ability to eat food without suffering the pain and nausea and vomiting that are the trademarks of gastroparesis. I did not find any relief from this medication.
Realistically, one’s doctor would “play with the dosage” a bit (I was not on the maximum does allowed), and in fact give it a “good chance” at working over time and with a tweaking of the dosage. However, the Domperidone did in fact have an effect on my heart and by May of 2014 I was not able to continue taking it. By May my heart had started to have some arrhythmia that was causing me to pass out, multiple times a week. Not just “lightheaded” which I am on any normal week due to my notoriously low blood pressure, but full out losing consciousness and hitting the floor. So the medication was stopped, and I ended up on a heart monitor for a month and also had a number of tests done on my heart.
The “good news” was that my heart suffered no permanent damages, and the cardiologist cleared me as having a “good heart”. The arrhythmia ended with the conclusion of the medication and I was in fact doing alright at the end of it all. The “not so good news” is that Domperidone was officially and forever off the table for me as an option to deal with my gastroparesis, and that was a bit disheartening. I was fast running out of realistic treatment options for my gastroparesis, it seems that all of the “tried and somewhat proven” methods were not working for me, or I could not continue them as was the case with this medication and there did not seem to be much else available. Tomorrow I will talk about my follow up visit to the motility clinic in June of 2014 and what the “new plan” for treatment was to be. As always I thank you for reading!