Known Triggers & Known Good

I use extreme caution using these terms.  For instance, in my family, cucumbers are a know trigger; however, many porphyria sufferers enjoy cucumbers with no adverse
affects.  On the other hand bananas are “known good”, in my family; while many in the porphyria club cannot eat bananas. Please be aware that what I write on this is what I see and hear about…that is why the title of the blog is My Porphyria.  I do try to call attention to foods that bother others and not me; but, I cannot cover everything for everyone.  Please be careful with all suggestions on this blog and every blog.

This goes well beyond food; the medical community has lists of safe and not safe drugs that are nothing more than guidelines & expectations.  For instance, phenobarbital is a “known trigger” for porphyria; but, I have been taking it for over 20 years in the form of Donnatal (belladonna + phenobarbital).  My prescriptions started when I did not know that I had porphyria; my diagnosis was irritable bowel.  Before I added glucose and magnesium, Donnatal was my only method of addressing attacks…and, it worked (and still works) wonderfully.  Additionally, when I recently had carpal tunnel surgery, all the doctors (hematologist, neurologist, surgeon,  anesthesiologist) & nurses involved researched porphyria & had numerous conversations with me.  There was so much prep that doctors & nurses not involved in the procedure came over and talked to me about porphyria.  Even though they meticulously used “known safe” drugs, I had a massive attack.

“Known triggers” and “known safe” are as common as unicorns.  When you hear these terms, please consider looking at other sources of information.  However, consider anything they say is a “known trigger” as dangerous to you.  If you see me using
those terms, please point it out & I will make appropriate corrections.

While on this subject, I use extreme caution choosing foods & putting together posts to this blog; the consequences of an error are extreme, as we are all aware.  If I make an error, please forgive me and give me a shout out.

This entry was posted in Attacks, Diet, General Porphyria Discussion. Bookmark the permalink.

6 Responses to Known Triggers & Known Good

  1. Zibbi says:

    Noted. I still think you are fabulous and a godsend!

  2. Zibbi says:

    Greg, how often do you use the Donnatal?? I’m just thinking… if the reaction is mild and stretched over a few days (like mine with alcohol) might that not leave you chronically primed for reactions?
    Z

    • Greg says:

      I only use Donnatal when I am feeling pain start to develop. The only side affect, that I can detect, is that I get tired; I don’t know if the tiredness is from the attack, the meds, or both. And, it does not appear to linger in my system. Fortunately, the number of painful attacks has diminished greatly over the last couple years; this is due entirely to strict control of my diet, liberal use of glucose, & avoidance of triggers. Now, if I can just get rid of the general blah, susceptibility to infections, etc. I do try not to take Donnatal, if I don’t have to. My first response, with the onset of physical discomfort, is to consume glucose & magnesium, then eat.

      Like you, when I do have a drink of alcohol, the affects linger for a few days. I strictly avoid red wine. But, I will have a sip of white wine, when someone has stumbled upon a particularly great bottle. A sip of amaretto & rum is ok, too. A sip here or there is not a problem. The day after sluggishness is if I drink a whole glass of wine or a full beer. One thought is that I should probably switch from IPA to a real light pilsner, like Corona Lighter or Colorado Kool Aide. All that said & done, I only have about 7-10 beers in a year.

  3. Ashley says:

    I can’t find the blog but I remember reading that lactose can be a trigger. Can you explain why that is if you know? I’m trying to keep the attacks down and would cut out dairy if it is a trigger

    Thank you,
    Ashley

    • Greg says:

      Hi Ashley,

      I consider milk to be dangerous. But, we are all different. Do you keep a food log? I’ve found that is helpful when trying to figure out what is causing problems.

      You might want to look at the page on sugars. http://www.myporphyria.com/sugars/

      Lactose is a disaccharide; galactose + glucose = lactose. The problem may be with the separating of the galactose from the glucose or in the conversion of galactose to glucose. I’ve heard that there are lactose free milk products; but, as I don’t have an affinity for milk, I haven’t taken the risk of trying any of these products.

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