I am so sorry you have to go through this ----one of the things that emergency doctors would say to me during my episodes of panic attacks, depression, etc. was "you sound so rational"..... as I try to "keep my head" at all costs ( which can be difficult at times)....as I was once in outpatient and ran into a doctor that, I think, wanted to keep me as a "permanent" client....I am very very suspeptible to drug reactions, good and bad....and thank God, I have an MD that listens to me...but dealing with some heavy duty depressions lately(see my previous posts for the rest of what I deal with) I have found a new P-MD who put me on a medication that I have had a bad reaction this morning...if a person "keeps their head" if able, when talking with emergency or doctors, the less likely they will try to "force" you to take medications you don't want. Ask for the patient's bill of rights at the hospital when you go...you DO have rights...and I am blessed with a supportive husband that will stand by me...I am in a mess today emotionally due to myself not standing up to my new doctor and making him realize that I need to start on a much lower dose for a longer period of time(he wants to put me up to 200 ml of this drug within two weeks)...and I can't handle even 25ml without panic attacks, nightmares, etc....get the patient's bill of rights, laminate it and take it with you wherever you go ---call an Ombudsman if necessary...hang in there girl.....E.
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Originally Posted by jennifer774477
I am in a medical emergency. I had my first porphria attack from taking pharmaceuticals. I sufferd seizure and heart failure. I was treated with more pharmaceuticals at hospital and am in my second attack. I was unsucessful in my attemts to educate hospital staff and protect myself from inappropriate treatment. If I have seizure and heart failure again I will be unable to access life saving treatment safely. I am awaiting test results and trying to get in to see a specialist in order to resolve the problem. Meanwhile I am trying to avoid seizure. Drinking water was helping me to eliminate the pharmaceuticals that provoked the attack, and was helping with the severe painful skin burning symptoms(I have no tolerance of any form of light-not a window or even a light bulb, can not wear clothes or be touched, spent weeks naked under a sheet covered in ice packs)I am suffering neurological symptoms, muscle weakness, ringing in the ears, foaming at the mouth, auditory disturbances, fainting, nausea,painful bowel movements as well. At hospital my porphria was ignored, my neurological symptoms mistaken for psychiatric and they believed I gave myself heart failure through poor behaviour(water drinking). My refusal to eat processed junk foods and demand to have the natural organic foods my husband brought me was interpreted as eating disorder. They believe eating organic vegetables ,grains, meats and eggs instead of cookies , canned soup, tea and coffee is dangerous and can provoke heart failure. They are able to take ideas like this and use them to deny me my human rights and much needed medical care, and force porphria provoking drugs on me against my will. I don't know what I can do. I am eating a perfect high carb organic diet, and minimizing water drinking because of the way it effects salt levels. With porphria salt levels drop which leads to heart failure. I am trying to keep my salt level up. Less water is making my skin symptoms bad but I must avoid the hospital. Does anyone know if I can protect my human rights some how?
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