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.
- 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:
- Found a sufferer of AIP that has a replacement for ice cream: put frozen bananas, vanilla almond milk & carob powder in blender. http://acuteintermittentporphyriarn-cm.blogspot.com/
- Abstract of research on variegate porphyria, where the delivery of vitamins or placebo was with almond drink: http://www.ncbi.nlm.nih.gov/pubmed/19883519
- Did not find it on any of the lists of foods to avoid.
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: http://flakehq.com/archives/0510c.htm; 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. http://www.ncbi.nlm.nih.gov/pubmed/14674906
- Treatment of congenital erythropoietic porphyria with superactivated charcoal. Improvement not statistically significant; but, increased constipation suggests this is not beneficial. http://www.ncbi.nlm.nih.gov/pubmed/2084460
- 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): http://www.cpnhelp.org/activated_charcoal_porphy
- From Vanderbilt University School of Medicine, advocating charcoal therapy for porphyria secondary to Chlamydia treatment. http://dynamics.org/Altenberg/MED/StrattonMitchell.v.4.html
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.