Attack, attack, attack…repeat

This is frustrating.   After suffering almost daily pain killer level attacks for years, we isolated most of the triggers, so that I’ve only had a few minor pain killer level events in the last 14-15 months.  Previously, the attacks would always require at least Donnatal; but, sometimes Percocet or morphine (hospital) was required.  So, after a little more than a year of just a few minor Donnatal, I’ve come to expect that my porphyria is just a major inconvenience (extremely restricted diet, frequent infections, general yucky feeling, etc.).   Well, I’ve had 4 Donnatal level attacks in the last 3 day; 2 have been bad enough to wake me in the middle of the night.   Kind of like that commercial where the kid is laying in bed telling himself “I don’t have a sore throat, I don’t have a sore throat….MOMMY!   Waking to the feeling that my chest & gut are in a vise being squeezed too tight, is not a lot of fun.   Quietly go get some Donnatal (don’t want to wake the rest of the house), chew a bunch of glucose, and gut it out until it subsides.

Now, the puzzle…what is causing this.  The only thing that is new, that I can think of, is I tried a glass of almond milk on Thursday.  I researched almond milk on line & read the ingredients & it seemed like a safe bet.  I wasn’t thrilled about the taste, until I added glucose powder; wow!  It tasted like a milk shake.   I guess this was about 2:00.  That night we handed out Halloween candy.  No problems, yet.  That night around midnight, I awake in pain.  What the heck?  Deal with it & figure it out in the morning.

We decided that it was too much chocolate.   Yep…chocoholic, here.   Normally, I stick with York Peppermint Patties; I think I have the best luck with them because of the dark chocolate (less fat?) and peppermint.  I find peppermint very soothing to my stomach. Funny thing is that spearmint bothers me; go figure.

Why the other attacks?   I did not drink any more almond milk & stuck completely to the “safe” diet.   Soup (more like chicken vegetable stew) and turkey sandwich wraps; ok, a couple cups of coffee in the morning.

Our suspects:

  • Almond milk is the problem and taking awhile to flush from my system.
  • We just changed the Brita filter.   These are probably made in China…’nuff said.
  • Maybe the latest batch of glucose powder was processed after using the same equipment as a trigger.   I highly doubt this; but, the latest bag was opened in this timeframe.
  • Baked asparagus with olive oil and salt.   Skillet is coated with safflower oil before storage.   I am always careful with this because of the oil; and, asparagus is on lists of foods that are suspect.
  • Smoked Boar’s Head turkey was purchased Thursday.  Maybe they had cut something that  I can’t deal with on the same cutter they sliced my turkey with.
  • We recently had some different dish soap; maybe that was the problem.   Ok, we are stretching, here.
  • Eating a baked potato before bed?   I’ve wondered about this before.  But, it would only account for one of the attacks.
  • Was it the barbequed chicken, that we had frozen, then re-heated?  Again, that would only account for one of the attacks.  My foodie wife says it is ok to freeze & re-heat chicken; but, the porphyriac in the house (me) says that what is safe for other people is not necessarily safe for us.

Our plan (to be re-evaluated depending on results).

  • Stay away from almond milk
  • Switch to Publix purified water
  • Use only glucose tablets, avoid the powder.

If this works, we are going to throw out the Brita filter & either replace it with a new one or try a different system.   Almond butter is on the scrap heap.   There are probably other foods unfairly relegated to the scrap heap; but, testing can be very painful & expensive.   Who knows, it might be something in the air.

Some almond milk research:

Brita Filter research:

  • All the pro-charcoal seems to be for cutaneous types of porphyria (though, I did find some negative views); I did not find anything positive or negative in regard to charcoal and acute porphyrias.
  • Found many warnings about charcoal broiled meets.
  • I searched on “Brita & Porphyria”.  Well, I found out that “Brita” is a name; so, I had to filter all that out.   I did find someone with anecdotal evidence that her trigger is the charcoal in the Brita filter:; but, the mention that Gunther’s (a form of cutaneous porphyria) is exacerbated by medical charcoal.  So, then next step is to research charcoal.
  • Some people recommend oral ingestion of activated charcoal to absorb fat soluble porphyrins.  This is a paper that evaluated oral activated charcoal in variegate porphyria; the results were an aggravation of VP.
  • Treatment of congenital erythropoietic porphyria with superactivated charcoal.  Improvement not statistically significant; but, increased constipation suggests this is not beneficial.
  • Examples of people who take activated charcoal and chlorella daily; they believe it helps (site is for Chlamydia patients – drug treatment can cause secondary porphyria):
  • From Vanderbilt University School of Medicine, advocating charcoal therapy for porphyria secondary to Chlamydia treatment.

I did try activated charcoal; but, it irritated my diverticulitis; so, I will never be able to give a firsthand opinion on this.

UPDATE: No attack yesterday (Saturday) or last night; thank God.  Ate baked asparagus & re-heated barbeque chicken.  They are off the target list.
UPDATE: No attack, on Sunday.  On the road, so I ate a few turkey sandwiches.  Turkey is ok.
UPDATE: No attack, on Monday, even though I had a sore throat & felt a cold coming on. Used glucose powder.  So, glucose powder is good.

CONCLUSION:  Almond milk is a trigger.

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7 Responses to Attack, attack, attack…repeat

  1. Zjbbj says:

    Q – How are you with cinnamon? And cantelope?

    • Greg says:

      Cinnamon doesn’t seem to cause any problems; and, I do like it. But, I don’t load up on it.

      Cantaloupe is not a problem for me. But, I am careful with fruit, so as not to get too much fructose.

      Are you having trouble with cinnamon & cantaloupe? Or, trying to isolate triggers? Identifying triggers is challenging & sometimes painful.

  2. Ann says:

    My suggestion is sulfites. The processed meat, the candy, the bbq sauce, even the water filter. Some water filters use coconut and is a big no no for me. For me, almond milk only if organic and in moderation. The sulfites build up and can stay in your system for as long as 4 days. So some days something can trigger an attack and other days it’s fine based on whether or not I have over indulged.

  3. Fiona says:

    Greg – from your personal experience, how long does it take for an attack to start when you’ve eaten a trigger food?

    • Greg says:


      If I eat something that I consider a trigger, such as cucumbers, the attack happens very quickly…2-3 minutes.

      There are other foods that I consider irritants; they don’t cause an immediate painkiller level attack. But, I can feel “off” and possibly have a painkiller level attack later. If I have more than one of these irritants, I can have an immediate attack.

      So, I group foods into triggers, irritant, not good, and safe. The not good include things like sweets; I avoid most of the time…but, if it is wedding or birthday cake, I will have some, knowing that I might pay for it later.

      I hope this helps you.



  4. Chis says:

    I just thought I’d chime in! A lot of non-dairy milks these days have carageenan or a type of gum in them. Very bad for tummies and guts.

    Just thought I’d let you know. I can’t have anything to do with stuff that’s a known gut irritant, and I have EPP.

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