Bad Attack

Saturday morning 1 AM, I had a brutal porphyria attach.   Normally 1 Donnatal and 1 ibuprofen do the trick; but, after more than an hour I took another round of pills.  Around 4 AM, my wife found me and convinced me to take a Percocet.    That finally stopped the pain.  I slept most of Saturday.  Sunday my urine was orange; but, it gradually lightened up.   Sunday it was still a bit darker than normal.  My hydration level has been normal to above normal.  My urine is normally almost colorless.

Cause?  Probably a number of factors.   I’d been dealing with a bit of congestion Thursday & Friday.  Friday night, we had a couple over to watch the Olympics ceremony & I had a glass and a half of red wine, over a 5 hour period.   And, over that same period, I had a couple meringue cookies and a couple York Peppermint Patties.  Plus I was given a bite of mango pie (we suspect mango may cause me problems).   Of course, during that period I had a bowl of chicken vegetable soup (thick enough to be called stew), Triscuits (low fat version), and a bunch of water.

To complicate things, we both had raging colds on Saturday & Sunday.

Whatever bug we had/have may have been the tipping point that caused the attack to be so severe.   The last time my urine turned colors was after rotator cuff surgery when it was not known that porphyria was an issue.  Normally, when I am having porphyria problems, my urine is not a clear.

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4 Responses to Bad Attack

  1. Chris says:

    I’m sorry for your pain. I suffer porphyria attacks on a daily basis. Wine actually produces the enzymes for porphyrins. So they are elevated. Especially red wines. Grape juice can also create production. Alcohol is a big no no with porphyria and can cause a severe attack. Of course those are what different dr.s at finding and some say it depends on the person. Red meats can really cause productions. I’m miserable with my attacks and went to a dietician to help me with the high carb and the no nos for a porphyriac.

    • Greg says:

      Grape juice, too? Darn. Too bad…it has a decent fructose to glucose ration. I am going to have to really evaluate that in regard to my health, as I like to use fruit juice to mix with magnesium. Most fruit juices have too much fructose. My wife has said, for some time, that I don’t do well with red stuff.

  2. Kate says:

    I know this post is from several months ago but I just wanted to draw attention to Donnatal also being a trigger. Donnatal has a barbiturate in it which is a major no, no.

    • Greg says:

      That is a good point. Barbituates are in the list of bad drugs. But, Donnatal causes me no trouble & is really a life saver; and, my system is very sensitive to triggers. I really believe this falls into the category of triggers aren’t the same for everyone with Porphyria. For example, last year I had carpal tunnel surgery. The anesthesiologist did a lot of research on safe drugs for AIP; he also consulted quite a bit with my hematologist & neurologist. They came up with what was considered safe & very conservative; I had a pretty back attack & it took me weeks to recover. There are a lot of items on the “safe” list that are devastating to me.

      Then again, maybe the belladonna is masking or counteracting the barbituates. When I have an attack, in addition to Donnatal, I drink something with magnesium mixed in to relax the smooth muscles that are in spasm mode.

      Anyway, I’ve brought this up with my hematologist & neurologist and they don’t have an answer, either.

      But, I would really like to thank you for reviewing my blog for accuracy & commenting on the complicated situation. Chris (above) commented that red grapes & plums contain triggers; so, after some research, I removed them from my diet & the number of attacks diminished greatly…of course, I changed the blog to reflect what I am using.

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