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 cannot even fathom the complications that ensue…

Bean writes:
“I am trying to determine my triggers, but I still get cant always avoid them. Basically, my question is if anyone else has issues with severe vomiting. I vomit frequently and I stay hydrated when I can keep fluids down, but when I even vomit from sucking on a wet rag (attempt to wet mouth because of dryness and also it gets tiny amounts of water in me, a sort of trick I use) I then have to worry about replacing electrolytes. I get consumed with chills, to a terrifying degree due to the fact that I cannot sweat. When I went to the ER recently, they gave me IV fluids and I poured sweat right away. and it felt so good! I know that sports drinks are dangerous but simply water is not enough. How do we keep our fluids correct when you vomit almost daily? I am writing this so fast because I am at a public computer so sorry for grammatical errors ! Thanks yall!”

This was posted on the “Diet” page & it is the 35th comment; so, few people will make it that far.

Any suggestions?

This entry was posted in Attacks, Diet, General Porphyria Discussion. Bookmark the permalink.

4 Responses to Nausea?

  1. Zibbi says:

    Wow! That sounds awful, Bean! Sounds like you have no choice but to go to the
    ER. I know they give oral rehydration fluids by the teaspoon to children in the Emergency Room if they want to avoid IV, but I wouldn’t want to take chances being that sick.

    Has anyone’s doctor checked their thiamine (and Mg) levels? I understand that can cause nausea & vomiting if it’s low… ?

  2. Ara says:

    I mentioned chicken broth but now I’ve realized that liquids can aggravate vomiting. Pregnant women eat small amounts of dry food when nauseous, like crackers, if you do not have bad reactions to gluten maybe a regular cracker could help.

  3. Mary P says:

    If you are drinking tap water, chlorine could act as a trigger. At the porphyria handbook it says:
    Chlorine is a product that is found just about everywhere these days. And chlorine is essential and is even beneficial overall. But unfortunately for most porphyria patients chlorine is considered a chemical toxin which can and does trigger acute porphyria attacks from time to time.

    What is often unknown to many porphyria patients is that chlorine is lurking just about everywhere in the hospital or clinical medical setting.

    Porphyria patients find themselves so often in a medical setting, and yet many are so unaware of that chlorine is lurking just about everywhere. This includes even the medications that most people take commonly and even on a daily basis.

    One common drug is acetaminophen. Others include antibiotics. Chlorine is also found in anti-cancer drugs including cisplatin, and mintotane.

    Other drugs containing chlorine include xanax, vancomycin, lorabid, ceclor, benedryl, chlor-trimeton.

    In addition, almost one-third of central nervous system drugs contain chlorine, and 98 percent of gastrointestinal medications are made using chlorine.

    At the same time chlorine is what makes our tap water safe and keeps our “whites white” during laundry.

    Chlorinated compounds are essential to the development of potent new drug therapies. Of the nearly 400 new drugs approved for therapeutic use in humans since 1984, more than 60 are chlorinated compounds, and many others use chlorine’s unique chemical properties in their production.

    In the medical world chlorine does not just stop with the pharmaceuticals. Chlorine is essential to a wide variety of medical equipment. An estimated one-fourth of all medical devices in hospitals contain chlorine, ranging from some of the most commonly used to some of the most specialized and advanced.

    X-ray and mammography films are made with silver chloride. Chlorine also is a basic building block in the silicon used to make the semiconductors upon which many electronic medical devices depend. And surgical sutures, artificial blood vessels, and osmotic membranes are all made with nylon, a product made using chlorine chemistry.

    Chlorine-based plastics also are widely used in medical devices and equipment. Of the 14 families of plastics made using chlorine, the most common is polyvinyl chloride, a plastic known for being light, easy to bend and shape, and inexpensive.

    As a porphyric if your are super sensitivity to chemical toxins including chloride be aware that the IV and blood bags are made of chloride. Same with the oxygen tents and even prescription eyewear.

    Chlorine-based vinyl packaging also adds to the safety of medicine. Many pharmaceuticals also are supplied in vinyl packaging — such as the “blister” packs that help extend the shelf life of tablets and capsules and make it easier for patients to take the proper dosage.

    Much of the aforementioned is safe for porphyrics however if contact is limited. What is neeeded to be mindful of is the chlorination of drinking water, and especially chlorinated water in swimming pools. This has always been a problem for the general populous and with porphyrics it is even more so.

    Skin irritation is a great concern for porphyrics with the cutaneous manifestations. However AIP also can be affected by chlorine.

    Play it safe, read labels, ask questions, and do not be afraid to refuse use of some products.

    Robert Johnson, MD
    Retired Clinician

    • Amber Sutton says:

      This was very interesting to read. I had no idea. I have been dealing with my symptoms for 30 years now and still have not received a diagnosis. I was just tested for Porphyria and was told my blood test results were normal. I have several “allergies” that cause a burning sensation and one of them is Chlorine. I can not drink tap water, only distilled. I can not bathe without a dechlorinater in my shower. But I have never heard that some medicines are made with chlorine. Is there somewhere I can find a list of those medicines or where I can see if what I take has it in them?

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