Category Archives: Attacks

Nausea?

Wow!  How to handle nausea, when it is absolutely mandatory to eat or have a porphyria attack.    Everything that I write about is based upon my experiences & research related to those experiences.   I have no problem with nausea and … Continue reading

Posted in Attacks, Diet, General Porphyria Discussion | 4 Comments

Awake to pain…glucose…relief…for a bit, darn.

1:00 sound asleep, then ouch!  My chest hurts very bad.  Roll over, grab some glucose tablets, as the first one dissolves, the pain fades.  Relief.  Chew a few more, to be sure.  Lay back down; but, before sleep returns, the … Continue reading

Posted in Attacks, General Porphyria Discussion, Uncategorized | 2 Comments

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 … Continue reading

Posted in Attacks, Diet, General Porphyria Discussion | 6 Comments

Sleep or Food

What a tough choice.  Wake up hungry, at 4:30.  If I get up for food, I may not get back to sleep…and, I really, really need my sleep.  If I don’t eat right away, I will be hurting, when I … Continue reading

Posted in Attacks, Diet, General Porphyria Discussion | 3 Comments

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 … Continue reading

Posted in Attacks, Diet, General Porphyria Discussion | 4 Comments

Cucumbers

Really.  I haven’t eaten cucumbers in a few years, since seeds & diverticulitis don’t go well together.   I have kept growing them for my wife, though.  And, we have tons of cucumbers coming in right now.  So, we decided that … Continue reading

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What Kind of Porphyria Do I Have?

And, does it really matter?   I know that I have an acute variety, because of the seriously painful and debilitating attacks; these attacks require Donnatal, Percocet, or Morphine to control the pain.  Cutaneous?  Not really a big issue.  I can … Continue reading

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Maca & Porphyria

I read that the abundant energy and resilience of a South American soccer team was due to their use of maca as a supplement.  Apparently, maca is not only good for energy, it helps improve healing.   So, I decided to … Continue reading

Posted in Attacks, Diet, General Porphyria Discussion, Supplements | 1 Comment

Hemin

I have never been given hemin.  There were some hospitalizations, in the past, where this may have been considered (and possible have been appropriate), if it had been known what I was suffering through.   My hematologist doesn’t think it should … Continue reading

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Grape Juice

Well, it was just pointed out that grape juice is one of the foods that stimulate heme synthesis (thanks, Chris!).  After doing some research, I found that he was right.  In the process I stumbled upon sulfites being a problem, … Continue reading

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