Meningitis

This is actually Waterlily but no matter what email I sign on with, I can't get to my personal account moniker.

Hypogammaglobulinemia describes low levels of immunoglobulins in your body. Immunoglobulins are antibodies that fight germs like viruses and bacteria that can make you sick. Having low levels may increase your risk of infections and other diseases. Antibiotics, immunoglobulin replacement therapy and stem cell transplant are potential treatments. I get Chemical Asceptic Meningitis whenever I get an IVIG Infusion. I have very low IgG1 and IgA's in my blood. That in turn creates almost untreatable Pneumonia, Bronchiectasis, cancer, and organ failures. There are only two immunologists in Minnesota. Fairview University of Minnesota and Plymouth Minnesota. I got IVIG infusions for years without issue and then one day I started getting Chemical Asceptic Meningitis within a day or two of IVIG administration. After not taking any for 5-6 years, I tried it again. The first infusion went well except for a little headache. The second required emergency hospitalization because it causes the lining on my brain to swell and then I go downhill fast. This information doesn't always make it to the doctor's attending me from the emergency room. I have to wait to talk to the doctors directly and at that point I can barely speak. I can only go to one hospital for that reaction, and there's only a couple doctor's there that know how to treat it. It starts with a lumbar puncture to test the spinal fluid. I think that they test for high white blood cells and other information. So far I've healed with their assistance. One of these times I won't be as lucky. I am off any type of IVIG Infusions now, but I know I will need to get IVIG Infusions again when I get too many infections and, organ failures or cancer. I've also had a hard life from childhood on up. Almost my entire family struggles with mental health issues. My mom had lupus as I do. A Rheumatologist told me it was inherited. I have a daughter with some early symptoms that I've been keeping my eye on. I will help guide whenever I feel I have knowledge that might help. Bless all your hearts through your struggles. I'm currently in the hospital healing from a bilateral L4-5 decompression lumber spine surgery. I have a wonderful care team and my daughter is here when she is able. She's carrying a 4.0 in college and I'm so proud of her. She has 3 types of epilepsy. Finally she found an Epilepsy doctor who knew exactly what medicines she needed to control them. She occasionally has break through mild seizures, but shes finally able to function. She had a stroke last month at 51 years of age and was temporarily paralyzed. Our lives are a journey. That is how we look at ours. It helps immensely. This is an informational post in case someone can use this information. I'm here while recovering from surgery. Feel free to reach out any time. It may take me a little while to reply, but I will do my best. Bless you all on your life journeys. #Hypogammaglobulinemia #Epilepsy #Stroke #Immunedisorders

It is clicking and I hope it stays.

Since my second brain injury it has been different how I can use my brain. I have now short term memory loss, more easily distracted by little stimuli, movement around, lights and sound or change in lights and sound… but most of all when trying to talk/communicate with anyone, words make me think other thoughts and forget what is going on.

My brain used to be over intensely exhausting from electrical output. My brain made too many connections at once, I saw everything from every single angle or point possible. I ran into problems of people not knowing what I talked about in conversation, because my first thoughts were 10 thoughts ahead of who I was talking to. I had to explain until they would say “ooooooohhhhhh” and they would have an “aha!” moment. I had more control in being able to keep my thought while helping someone get to theirs.

This was easier because I could keep dozens and dozens of trains of thought straight in my head. I didn’t forget. I always have a lot to say.

After injury, I get a lot of thoughts but they go away before I can try to remember or write down. If I try to speak out of my mouth, I get distracted by anything and it is gone.

Even with words hiding, I still feel all of the thoughts. I still have so much to say but not ways to say it and have deep conversations on it. It is lonely and exhausting. It is weird because I physically feel my thoughts, it is like the urge to make a quick witty joke at the right moment, but when you go to open your mouth to say it, no words come out. Everything inside was ready to speak, but my brain disconnects and I am left with a “just about to” feeling. Like something is forever right on the tip of your tongue, but can’t come out.

Now, I see more in my head than I have the words for. I say to people “my word bank is gone”, I still have some and have knowledge, but when I go to retrieve knowledge I have, my brain gets lost and I can’t find any of the words, but I can feel it.

What happens now is not words that come to me quickly or in response. Instead of words in my head I see pictures, video clip replays, some memories, colors, gestures, movements, charts, graphs, diagrams and more. The problem is, I do not have words for these things I see in my head, I cannot translate what I see into words.

What I see though is in direct response to what someone is trying to talk to me about. So I have times I know what is being talked about, have responses, but cannot translate to words.

I get frustrated a lot. I used to talk a lot and be able to help many people a day.

With my brain injury, when I have a change in any emotion at all, function goes down. When I get frustrated with all that I have to say but do not have access to the words, it then instantly drastically harder to try to speak. My speaking gets choppy and I think I sound like a baby, which frustrates me.

I ask “what should I do?” “What do I do when this happens?” My therapist tells me to write again.

Writing got fun for me just before my injury. I had mild brain damage from meningitis as a 6 month old. At 19 my psychiatrist ordered a QEEG to see if there was a physical reason my mental illnesses are so treatment resistant. We instantly found the brain damage from meningitis as a baby. Before knowing about the damage, I was blamed for not trying hard enough, not having enough self control, being too overdramatic, wanting attention, etc…but it was brain damage.

In 2021 I was 27. I had a breakdown and had a plan to take my life. I was sent inpatient and was assigned a doctor who coerced me and forced me to have electroconvulsive therapy. I had said no, and was told this was my option for treatment, or I could get released to go through with my plan.

After first ECT, I learned the excruciating pain it causes. It feels like what I imagine getting hit by a bus feels. Whole body feels like it was crushed and jelly. The jaw feels like a baseball bat full force at the hinges of the jaw.

Aside from pain, I was thinking responses in my head to nurses questions, in Spanish. I took Spanish throughout high school and into college.

The nurses thought I was speaking gibberish because they did not know Spanish, and put me to bed. I was forced to spend a month in the hospital getting these treatments.

It got better. Then instantly worse than before.

It got better because I had memory wiped and did not know traumas that happened to me anymore. Did not have societies thoughts in me anymore.

Was discharged from the hospital and medically abandoned, no follow up care, no answers to call backs requesting referral or asking where to go for help.

I started to notice after 8 weeks, what was lost was not coming back. More issues communicating and with memory, have never been able to contact Doctor who did this to me. Was told by many random doctors after, that what I described “can’t happen”, but it did happen.

I used to be able to bring these writings more full circle, for now I will just be proud of what I was able to write today.

Ptsd mine and my veteran husbands

My husband is a veteran who always reads news and wants to discuss. Believes civil breakdown coming with November election. I have ptsd from surviving bacterial meningitis of my brain 10 years ago. Husband believes everyone should keep up with current events and be ready to react. This relationship caused me psychological damage. He is a good man means well. I cannot live off grid due to medication and would not want to. I am back in therapy. He has refused this for himself as well as couples counseling. We have arguments over and over power and control who is right etc. He has said people who do not read news can't handle it. Well I do not have to because it has all become pathological. He is buying self defense weapons he says to keep me safe. He already has enough. This situation for 4 years has caused me so much fear I have lost site of the good things he has done for me. At this point I will not discuss current events with him. I no longer read the news.

Hi, my name is gertrudemcfluff.

#MightyTogether #Anxiety #Migraine #OCD #Meningitis

Hi, my name is TPain87. I'm here because
I have been dealing with nonstop everyday migraines for the last 11 years. I am tired of going through this. Multiple doctors I've been through who I've switched to diff ones because I wasn't getting help when I asked them to please do certain tests. They continously put me on different meds. I take sumatriptan when it's BAD and I also take propranolol for my high blood pressure and to help with the migraines as well as monthly aimovig injections. I hate nobody around me will help! I've been to the er so many times over the years even once with a fever of 104 and they thought it was meningitis but they never tested me. Sent me home on an antibiotic to see if it'd help. It did for about a month. Over this 11 year period, I have gotten worse. They're more severe, I start to see things that aren't there, I have lost 40 pounds in 3 mo ths bc I don't want to eat or drink. I also have crohns disease and stage 3 kidney disease so not sure if it has anything to do with those? I am irritable, my personality has changed significantly with one second I'm happy and with a switch I am pissed off. I have excessive sleepiness, eyes were rece tly checked bc I'm having issues with light and driving is somewhat of an issue now. I have been put on a cpap machine bc of my sleeping patterns or nights I don't sleep. I'm confused and can't remember things how I use to. I'm struggling really bad. I'm 35 years old and have been dealing with this since I was 24. I am always feeling ill and always go to bed to wake up with fevers. Something IS WRONG and no neurologists seem to help. I have gone through physical therapy and it didn't help as well as chiropractor apps 2 times a week and still didn't help so .y insurance seen there was no improvement so they stopped paying for it. I can not work right now bc of it. My last job I was sent home a lot! If ANYONE knows anything, please help! I am struggling just to manage them every day just to live! 😔 If anyone might know what it could possibly be? or who is going through the same thing, I'd like to know! I feel alone. 😩

#MightyTogether #Anxiety #Depression #Migraine #Crohn 'sDisease

I am new. I have a seizure risk since May 2014 from cranitomy. I have never had a seizure. I am on 1 anti epileptic medication. I also follow PTSD forums here. I had bacterial meningitis of my brain from chronic sinusitis and access left temporal lobe. I almost died. I was incubated in a medically induced coma septic multi organ failure. I had to relearn everything.
#Epilepsy

Hi, my name is Mwoodard. I'm here because

#MightyTogether #Anxiety #Depression #Migraine #AutismSpectrumDisorder #ADHD #PTSD #Grief #EhlersDanlosSyndrome #ChiariMalformation #TraumaticBrainInjury #Syringomyelia #PosturalOrthostaticTachycardiaSyndrome #HidradenitisSuppurativa #Meningitis #ADHD

I have ptsd. I had a craniotomy May 2014 for bacterial meningitis of my brain. Access in left temporal lobe removed. Was incubated on a vent multi organ failure. Today health is pretty good. Now the political situation in the US has increased my trauma

All my life, I’ve caught bugs, colds and flus very very easily. But in the last ten years or so, it’s been much worse. Because of this, I have every vaccination available to me. The flu one, the pneumonia one, the meningitis one, the hepatitis ones, and five COVID vaccines. I avoid sick people like they literally have the plague.

But then I get my sister and nephew that come over, and the gremlin will crawl all over me. Which I don’t mind. But then just as she leaves she tells me that he’d been throwing up ALL NIGHT.

I run and wash my hands again (I do this repeatedly when he’s here cus my nephew likes to slobber). But, right on schedule… 3am this morning I wake up and had to sprint into the bathroom and even then, I didn’t make it to the toilet to be sick. I projectile-vomited all over the sink. I then spent nearly an hour curled up on the bathroom floor, shivering and being sick. My stomach muscles are so sore. My head hurts.

She KNOWS I’m immuno-compromised. Yet she repeatedly pulls this crap when she feels lonely and wants to spend time with someone.

I’m just really fricking frustrated and sore. 😞

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #NAFLD #LiverDisease #Diabetes #InterstitialCystitis #Migraines #ImmuneSystem #immunosuppressed #StomachBug #stomachflu