Category Archives: General Porphyria Discussion

Coffee, coffee, coffee…well, not any more

I’ve known for a long time that coffee is not compatible with porphyria.  But, I really like coffee and was able to get away with it for a long time.   I’ve become so sensitive to it, that I had to … Continue reading

Posted in Allergy, Diet, General Porphyria Discussion | 8 Comments

Sinus Infection – air filters and hydrogen peroxide to the rescue

One of my weaknesses is sinus infections.  I am allergic to many things and exposure causes my sinuses to be unhappy; then an infection sets in. For a long time, I have been relying in saline spray (Ocean brand from … Continue reading

Posted in Allergy, Doctors, General Porphyria Discussion | 2 Comments

My Responsibility

It is my responsibility to manage my porphyria.  This is not to take away from all of the support that I get from my beautiful wife; I don’t know how I would manage without her.  But, the bottom line is … Continue reading

Posted in General Porphyria Discussion | 2 Comments

Hangover

Every morning I wake up feeling like I have a hangover…and, I don’t drink!  Eventually, that eases up & sometimes goes away.  Those are good days.  Sometimes, I think that I might as well drink when I want, since I already … Continue reading

Posted in General Porphyria Discussion | 5 Comments

Snickers

The Snickers commercials nailed it.  You are not yourself when you’re hungry…especially with porphyria.   The effect is many times as strong because the glucose starvation is deeper & then you throw in those nasty porphyrins.

Posted in General Porphyria Discussion | 1 Comment

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

Fever

Back in June, I was running a little fever when I went to bed.   I awoke shivering so bad that I could not open my mouth.  Walking to the bathroom was almost not possible.   I had to use an electric … Continue reading

Posted in General Porphyria Discussion | 3 Comments

pH Curiosity

One of the results from a recent physical exam was that I saw my urine pH was high.  Normal is 4.5 to 8.0, preferably around 7.4; mine was 8.5.  Well, this concerned me; is this another problem or just a … Continue reading

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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