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DiscussionBrain injury white matter, encephalopathy, and encephalitis
Brain & Nervous System | Last Active: Jul 20, 2021 | Replies (70)Comment receiving replies
Replies to "Thank you for that answer. I always knew it was all the meds i was given..."
Thank you. Since being on these meds they are now talking about how it effects your liver. After my brain injury i was sent to a psychiatrist. She had me on antidepressants for years and the only reason l was depressed is because l was let go because of my disability. Which is against ada laws and l just moved in a house we were buying and we had 5 small children. But praise God we didn't lose our house and all the children are grown and have children of their own. So she kept giving me drugs and then she kept increasing the dose. I ended up with taking about 10 medications a day. Now l was in the hospital again because of constant falling. I had to have 4 surgeries and now l have so many different diagnoses that they can't even explain. I been told for years l had heart disease and when l went to the mayo clinic Dr Miller said you only have uncontrolled high blood pressure. Praise God for him. Then its always your depressed and you have anxiety instead its the meds you were prescribed. Now our state is retraining doctors about pain meds. After so many people are messed up. I had to have 5 shunts on my extra veins in my liver. When l asked my cardiologist about my liver he said it was the meds. I was in rehab and they gave me a muscle relaxer and l was allergic to it and l went into cardiac arrest. But God kept me. So l turned all over to him. And l so blessed to be able to help others. I am getting ready to write my book and my church asked me to do it too. Also they want me to give my testimony because it seems like everyone knows what l've been through so if l can be a blessing to someone elss then it was all worth the journey.
Yes, @techi, my liver was significantly, negatively-affected by P450 drugs and especially PPIs. To prep for my Nissen last October, I had to go back on a PPI for six weeks to heal my esophagus. I hated it, but I knew it was necessary even though I got sicker and sicker and sicker all over again, and my liver enlarged and caused a ton of pain all over again. Interestingly, my Nissen only required my surgeon to work with my esophagus, diaphragm, and stomach, but the first thing he had to do when he got in there was to cauterize my bleeding liver. He also said it was enlarged, "floppy", and in the wrong location. All of this didn't surprise me at all; I had been complaining to my my home doctors for years that my liver hurt and was enlarged. I also believe that PPIs are the cause of my liver's hemangiomas.
My anxiety is much better now that I am not taking these meds. And I kept telling them that I was a little sad because I was sick all of the time, but that I wasn't depressed. I just wanted to feel better.
I am also planning to author a book about this experience... misdiagnosis, a brain surgery that was never needed, brain damage from the surgery I never needed, and five undiagnosed conditions by my home doctors. Thank god for Mayo Clinic.
I agree... helping others give purpose and meaning to what we have been through. And I don't want to see anyone else go through what I went through. This was entirely preventable.
Yeah, looking back, I innately knew I had medication problems. Things like not getting any relief or loopy symptoms from prescription pain meds, gaining weight very quickly when starting PPIs, etc. On multiple occasions, I remember telling multiple doctors that I felt like I was "full of medication." And we came to learn that I was correct.
Meds very much affected my brain and caused significant brain fog. I started detoxing from these meds in January 2016, and today I am still detoxing, and every few months I still realize that some of my memory abilities come back (despite some brain damage).
If you have always had a hard time with meds, including not bed but atypical reactions, you may want to consider the testing I had. Its called pharmacogemic testing. I've had two sets of tests done. The first was onsite at Mayo Clinic, and the second set was done via mail order by a Mayo company named OneOme. They have a kit that's very reasonably priced ($249 including shipping for 22 gene tests). You have to live in a state that has certified OneOme or have a doctor in a state that has certified them order the test for you. There are other companies that do them too, but I stuck with OneOme to ensure that I still had Mayo quality.
Many doctors, I'd even say most, are have such rudimentary knowledge of the liver enzyme system that metabolizes most of the body's meds (called cytochrome P450), that they don't realize that even people who are polymorphism-free can experience significant drug-drug interactions because so many drugs inhibit and induce these enzymes to work more slowly or quickly than intended. When I first started coming to Mayo, my home medical center had me on 12 medications. Once I learned about the P450 system and how all of these enzymes and meds work, I was stunned that none of my doctors knew what was going on because when you are taking that many meds, you are basically always having drug-drug interactions. Last May, I met with my Mayo Allergy/Immunology doctor as he's the doctor I work with most on this stuff, and I told him that now that I'm educated about this stuff, I am stunned that none of my 20 doctors at home had a clue what was going on with me because they should all have know what was going long with me. He told me that I was absolutely correct and that he had no clue how that with taking 12 meds how that many doctors didn't suspect this either. (This is actually what medication TV ads are talking about when they reference grapefruit juice, but there are actually more foods that cause these interactions and a TON of meds.) It all just stuns me.