Another Attack

We all know how it is…we think that we’ve eaten the right stuff and avoided the bad stuff, the day is looking to be a decent one & blam!  The pain starts.  What did I do this time?  Sometimes we think we figured out what caused it and other times we draw a blank.

The other day, I started off with a couple glasses of fruit juice (apple & mango), then a banana, and after a bit, some vegetable & chicken soup.   The soup is really like a stew; it has a lot of veggies and very little chicken.

Well, about 45 minutes later I am sitting in a meeting & the pain started.  I didn’t have Donnatal with me; but, I did have 20 dextrose tablets with me.  I was able to stop the attack by chewing on the tablets; it took about 12 of them.

What caused it??  I know fruit juice has fructose & dextrose; but, I have always considered them safe…until recently, that is.   For about the last 6 months, I sometimes have irritation (weak attacks) after eating a bowl of apple juice and Cherrios (or equivalent) at night.  So, I have been wondering if apple juice can be both an aide in stopping attacks and an irritant, depending upon the situation.

We need the nutrients of fruit; but, fructose is processed in the liver, while dextrose goes right into the blood stream.  It is such a complex variable, that I am at a loss some times.

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4 Responses to Another Attack

  1. Kit says:

    Greg – Back before I even knew about this monster, I used regular sugar in water to stop the pain and body crashing that no one could explain. It was not until years later that I learned about porphyria and many more years later I learned why sugar helped. I had also tried glucose tabs, but it took so many for relief, I could not afford them. Then I read a debriefing interview of a porphy patient done by a hospital in Australia. They recommended 2 fast liters of glucose solution IV, and then a 3rd one administered slowly. Evidently it is the flushing effect of the water that does the most good. Based on that, I tried drinking a lot of water with dextrose (the same thing as glucose), but I found that I did not get as good a result as using a lot of water with beet sugar. (I cannot do cane sugar – causes seizures). I do realize that all of the beet sugar in this country is GMO tainted, but I don’t have much choice. I don’t use it for anything else, so maybe I’m not getting too “poisoned” by it. I’m really curious how the fructose in beet sugar compares with cane and other sugars. I am seriously allergic to fructose and vitamin C (both cause immediate diarrhea), so I get to eat almost no fruit at all – grapes once in a great while (galactose). Sorry for the jabber. My point here is that drinking a lot of water with your glucose tabs might reduce the amount you need to use.

    Another thing you might want to consider with your sudden, unexplained attacks is amino acid or other imbalances. In one of your posts you mentioned potato before bed being a bad thing. Maybe it wasn’t the potato per se, but something else you had with it; and the combination pushed you over the edge. An example of this: I rarely get to eat eggs (sulfur), but if they are deviled with mustard AND paprika, I can eat several with no trouble at all. Also at one time I could not eat any white chicken meat unless there was some bacon with it. Just something else to wrap your brain around. You’re doing a good job with your research and blogs. Keep on…..

    • Greg says:

      Hmmmm…quite a bit to think about there, Kit.

      Have you read the “Sugars” page on this site? I’ve got to update it, with a note about powdered glucose; it is considerably cheaper than the glucose tablets. I get it on Amazon, from Home-Brew, for about $25 for 10 lbs. The cheapest tablets that I’ve found are at Walmart or Target in 50 count. When I am out & about, I carry a couple tubes of 10 each, just in case. I’ve got to be careful; but, I can overdo the glucose & then I end up getting tired. I’ve read about the body’s reaction to too much sugar; but, I haven’t bonded with it…I just know it makes me tired, if I use too much.

      I am surprised that you do well on beet sugar; it is mainly sucrose. Your body has to break about the sucrose before it can work on the fructose & glucose; once the sucrose is disassociated, the liver has to process the fructose & the glucose is used immediately. I can tolerate sucrose; it is a great sweetener. I do wish that glucose was sweeter.

      Water – I drink quite a bit…40-60 oz a day. But, you are right; it is good for flushing water soluble porphyrins.

      And, you are right about the potatoes. I’ve been able to eat a potato, before bed, without trouble. Maybe, I had too big of a meal; that is occasionally a problem for me. I like to get a good meal in me before bed time, so that I can sleep the whole night without having to get up to eat. I’ll go back an put a comment to that affect on that post. Good catch.

      Thanks for the post, Kit.


  2. Sarah says:

    Just came across this post rather accidentally and wondered if you have ever tried Cimitedine or Tagamet to ease your attacks. I can’t live without it, and it ALWAYS works for me. Please consider giving this a try! It has saved my life!
    “Cimetidine may offer a more cost-effective and easily administered alternative to hemin therapy. The optimal dosage and duration of treatment with cimetidine have not been established and are likely to be patient-specific.”

    • Greg says:

      Hi Sarah,

      Thank you for that very useful post. This information could save a lot of trouble and prevent needless suffering. I am glad that you you found this solution. I’ve been fortunate, in that I have not had to resort to hemin therapy (yet?). Glucose & painkillers have done the job, so far, when I am having an attack.

      I am looking at the link you shared. I am going to try to find a prominent place to put that on this site.

      Thanks, again!


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