Brain injury white matter, encephalopathy, and encephalitis

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.

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.

When you talked about a book on misdiagnosed it reminded me of the John Hopkins encephalitis clinic. A professor and also medical doctor his father was complaining about his head hurting. So he took is father to the hospital and they ran all these test and they told him everything was normal. So the son (per doctor) took his father home and the father went to bed. The son came back to check on him and found him dead. So the son opened an encephalitis clinic the first in the US at John Hopkins for patients and also they are training doctors about misdiagnosising. The professor/ doctor said that healthcare is spending billions of dollars because of misdiagnoses which has cost patients and their families unnessauary hardship, grief and even death. When l was having my issues in the hospital because they didn't know how to treat me they wanted to put me in a nursing home. They told my daughter if l didn't get better the next morning they would have me transferred. I just thank God for grace. My daughter said mom you got better that morning. And l started to think you know how many people are in nursing homes, mental hospital, prision and etc. Just because of misdiagnoses. My mother is in a nursing home and she has dementia and for 4months they didn't give her dementia medicine and she can't talk to you and make some sense in the conversation. I had a neighbor next door to me who was on antidepressants and they had just changed his meds. My husband and l just came home from vacation. He was smoking in his garage as always, he asked us how was our vacation. We talked to him about it. Then the next day he was tazzed by the police because he had a reaction to the meds and was beating his wife. Now this a man that wasn't abussive to his wife. It was the medication and he had to lose his life. And instead of monitoring the drugs he was given and it probably had an ingrediant he had on his allergy list. I have given my general practice doctor of all the meds l am allergic to in writing and i also go on the website. One day when l went to the office with my list because they kept prescribing meds with acedeminophine with it and l am allergic too. His nurse assist said l don't have all these allergies on my list. I told her l bring them to the office and also update my allergy list online with notes. She told me well l will update that now. So if something would have happened anywhere it could have been unfortuant for me and my family. And no one would have admitted they were at fault. I found out about my liver in 2014. I had my procedure done in 2015. My doctor was told and he never had anything about me having liver disease on my chart. When he was told about my liver disease by my gastroenterologist he put on his records i was diagnosed in 2011. Seems kind of suspicious you say you knew something but you never told the patient or proceed further to not entail any other danger to the patient. Then my gasterentologist said you don't have cirrhosis of the liver but symptoms. When you look on your records on your general practice records it says cirrhosis. So you have to call there office and tell them and they change it but you have anxiety. And this is happening everyday. We need to clean house and get rid of healthcare workers who just want a paycheck so l am so glad they are doing something in oklahoma finally. So l don't want to dwell on my fustration l just want to help others to understand its not in your mind. If you feel its not right move on because it is your life and it will affect you and your family. I am so glad we can share our experiences, concerns and questions with one another. I listen to Joel Osteen and Joseph Prince and they talk about faith, grace and destiny. And l know l going to get a good report when l finish with all these test. Because my destiny is to be a help to others with disabilities that's why l went to school and l even had doctors wanting me to work for them when l had my brain injury, l couldn't understand why? But that was God showing me l can put the knowledge, memory, love, joy and anything you can imagine if you just ask and trust me. So l know we are both going to have bestsellers and our books will help others.

Has anyone been diagnosed with having white matter in the brain after a brain injury? And do you have sometimes have symptoms of a stroke? I was told l have white matter in the brain and sometimes have symptoms of a stroke. And then it could be my ammonia levels. And one time l was diagnosed as having ms which wss ruled out.

I have been diagnosed with white matter disease. After installation of a shunt to control normal pressure hydrocephalus, I had a brain bleed which was described as something like a stroke. Subsequent evaluation showed no sign of the brain bleed. I have improved in general functionality since then. I still have the white matter disease but I am improving over time, so apparently improvement is possible.

How does ammonia fit in to the white matter disease?

Hi @jeancary, How are you doing?

Pretty well. The shunt was installed on 3/2/16 and I’ve been improving ever since. I did have a brain bleed subsequently but testing at the Lou Ruvo center showed it is now gone. I have no tangles, etc, but do have white matter disease. My balance is bad and I continue with therapy for that. I have proceeded with placement in less restrictive environments over time and am doing well. I was able to get someone to house sit in my home in nj which was a great relief and allows me to be comfortable here in a senior and assisted living facility near my family. I’ve found some really good medical services here and I’m resolved to use them until I feel ready to go back home and sell my house and follow through with my original plan to move to a continuing care facility with my friends, some of whom have already moved. I’m 74 now and it seems that the last 20 years just sped by. I’ll focus more now on myself and my physical health, as I feel I will profit more by pushing forward. It’s hard sometimes but worth it.

My diagnosis was normal pressure hydrocephalus and if I had not had a shunt installed, I would still be in memory care and getting worse instead of better. Another person who posted on this connection may have the same problem. It’s important to get a good diagnosis so that appropriate action can be taken.