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  • About Meningitis
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    What's New in Meningitis
    Community Voices

    I'm new here!

    Hi, my name is MistressPlaid. I'm here because I'm struggling with adult-diagnosted ADHD and anxiety disorder, and am having a hard time getting timely and useful care from my psychiatrist, and am struggling with adulting on almost every level.

    My ADHD symptoms have been getting progressively unmanageable the older I get, and tonight's late-night tunnel-vision research was centered on trying to find out if my childhood spinal meningitis (and resulting 2 weeks in a coma at age 2, right-side brain damage and inner-ear hearing loss, and more) would help explain my ADHD, and see if I can find a path to manage it.

    I'm a former sex educator and sex toy expert (though that one might be something that never stops being a super power) and have used my ability to be in the flow to be present with people and help them know they are *normal for them* and are worth loving. I'd love to flex those neglected helpful muscles here, too, if the opportunity reveals itself.

    #MightyTogether #ADHD #Anxiety #SexEducation

    2 people are talking about this
    Community Voices

    Chasing Ghosts

    <p>Chasing Ghosts</p>
    4 people are talking about this
    Community Voices

    Given and grief


    Not really sure why I'm posting this, I guess I need to tell someone how I'm feeling without seeing faces. In January this year our amazing 15 month old grandson passed away. After a 6 week fight against strep throat, which somehow got into his blood stream causing pnuemoccal meningitis and sepsis he lost. That doesn't really explain the fight he put up but it is the basics of what he went through. He was so healthy, had been vaccinated from meningitis just not the variant he caught, who knew there are over 90 variants of pneumococcal meningitis and the vaccine only covers the 13 most common.

    I look at his photos and have to remind myself that I'm never going to have a hug from him again or see his smile when I walk into the room. I am hurting from this massive loss while trying to deal with my fibro, and be there for the rest of my family, sometimes I just want the world to stop spinning so I can get off.

    I know I'm not the only person going through grief so for all those I'm sending huge hugs

    9 people are talking about this
    Sara Bohling

    Finding Little Moments of Joy While Enduring CSF Leak

    December 2016: The holiday season was in full swing. I was busy wrapping gifts for our young girls, baking cookies, doing holiday and year-end activities at work, all the usual things. Fast forward two weeks, to early January 2017; I woke up one day with severe body aches, elevated temperature but not an official fever, and more-than-usual fatigue. Being a nurse for nearly two decades, I assessed the situation and determined that I was well enough to go to work. No official fever, no cough, no GI symptoms, means I can make it through the day. I survived that 12-hour hospital shift, but barely. By the end, I was in so much pain — every joint and bone ached, especially my back. From the base of my skull to my tailbone felt like someone had shortened my spinal cord and it was being stretched beyond its limit, just to connect one end to another. The following days were the same. On day four, I woke up, put my feet on the floor to shuffle to the bathroom, and BAM! I was hit with crushing pain in the back of my skull — like someone had taken a baseball bat to the area where your head and neck connect. The pain was unexpected and took my breath away. I knew I needed to be seen by a medical provider, today. Nurses are often reluctant to go to the doctor, unless severe bleeding or loss of consciousness is involved, so my husband knew this was serious. We got an appointment right away and off we went. While waiting in the lobby, filling out the usual intake paperwork seemed extra challenging. I was having trouble focusing, reading the questions, and answering the easiest of things — home address, phone number, etc. I chalked it up to distraction from the pain and waited for my name to be called. The provider assessed me; nothing drastic was noted but I was sent for a CT scan, just to be safe. The results came back normal, so it was assumed I was having a migraine. I was told to go home and rest. The following days turned into weeks; I continued to see a worsening of my condition. I returned to the doctor multiple times. More imaging, tons of lab work… all normal. Yet I did not feel normal, in any sense of the word. They decided I must have viral meningitis due to the symptoms I was experiencing. As many know, meningitis can involve a lengthy healing process, with the main prescription being rest. So I was to continue resting and things should improve. However, I continued to have excruciating pain when I transitioned from laying to sitting or standing. My confusion and sense of disorientation and brain fog were overwhelming at times. Nausea was in full force when upright. My heart was racing and pounding out of my chest. I experienced major sensitivity to light and sound. I was now wearing sunglasses inside, with all the blinds pulled, and could no longer stand to watch TV. The noise of the microwave beeping sent me over the edge. By May 2017, I was staying in my pitch-black bedroom, curled up in bed, in silence. Sometimes sleeping, sometimes just existing for hours on end. I said daily “I love yous” to my family, but that was all the interaction I could handle. My husband was continuing to work full time, coming home to prepare meals, bathe, play with and raise our girls, as I was being held captive in a body that was abandoning me. I began crawling as my mode of transportation, the limited times I got out of bed, because my head didn’t hurt as much if I didn’t change positions to fully upright. I was eating meals lying flat in bed. I went through more doctor and specialist visits, more testing — all still normal. Some doctors even refused to treat me, saying it was “all in my head,” or “I don’t know what’s wrong with you, but I can’t help you,” before walking out of the room, leaving me to continue holding this heavy weight of illness and unknown. Finally taking matters into my own hands, I began to use my nursing knowledge to carefully and wisely search online for patients with similar conditions. I found many things — Lyme disease, meningitis, vertigo, the list goes on. Then I stumbled upon spinal CSF leak. I was most familiar with those affecting women after childbirth when using an epidural. But I last gave birth four years prior, why would this be affecting me now? More research, an incredible Facebook group, and the Spinal CSF Leak Foundation website helped me to learn that while it is a rare diagnosis, the most common causes of spinal CSF Leak are from surgeries or procedures. It is also possible to get a spontaneous spinal CSF leak. I found a local doctor who agreed with this diagnosis. We attempted treatment which resolved the issue short term, only to have it return a couple of months later. More research led me to travel 1,200 miles to be seen by some of the world’s experts in treating this condition. They also helped me uncover that the viral illness producing the body aches, etc. that started this cascade, was likely the trigger of my CSF Leak. While we will never know the specific name of that virus, when know it was powerful and impacted my entire nervous system. Whether the virus, the nearly one year in bed, or likely a combination of the two was to blame; I was also experiencing dysautonomia symptoms. When the body’s autonomic nervous system; responsible for heart rate, breathing, temperature regulation, digestion, etc. is in a state of dysfunction. I was fortunate to have my spinal CSF leak repaired after multiple attempts and multiple providers, and it has remained sealed since October 2017. An average patient with CSF leak symptoms can wait a year for an accurate diagnosis, so to have mine addressed and resolved before that timeframe was very fortunate! Today, I continue to recover and heal from my body’s unique history and medical challenges. I am using a unique interdisciplinary team approach to physical therapy, to explore and explain the science of postural adaptations, asymmetrical patterns, neuromuscular applications, and more. It has healed me in ways nothing else has come close to. Throughout my entire journey, I have focused on finding joy in the small moments, from giggling with my girls while I lay flat in bed, to making it to the front porch to feel the sun on my face, to the moment I was well enough to stand and when I “got” to do the dishes for the first time in over a year — all very intentional moments of joy. I have just published a book, sharing more of my story, fighting invisible illnesses and how the power of positive thinking along with fierce faith, has gotten me to where I am today. Check it out: “When Grit and Grace Collide: Persevering Through Life’s Challenges with Grit and God’s Grace.”

    Community Voices
    Community Voices

    Under the bonnet

    The reason I asked about neurophysiology is to get below the superficial in this diagnosis. "I recognised similar traits in myself" is all very well, but what's actually going on inside? I've some experience in trauma now, and recognise real understanding of this, backed by hard evidence, MRIs. That's pointed me towards NeuroTheology, likewise. Yet nobody's doing this in NeuroDiversity. Why not? Without some kind of understanding, our diagnoses are dodgy. The equivalent in General Medicine is the kid presenting with red spots: it can be anything from Sharpie to meningitis. Knowledge of the possibles and relevant testing homes in. This doesn't happen with us, as far as I can see: I had an MRI because something strange happened, and they needed to look, but I don't hear of that normally. It gave me data to hypothesise I'm pattern-making on a far higher degree than most, finding truths most people miss. That's a genius trait. Can we extend Dr Aron's thinking a long way further? I edge on ESP, for example. Reliably so.

    Now, one extreme individual's just a quirk. But am I so unique? Or are others on the same axis? Just because Dr Aron never came across anyone on the same scale doesn't mean they don't exist.

    1 person is talking about this
    Community Voices

    Still Working on Getting Diagnosed

    I have always had hypermobile joints. My shoulders and hips are the worst. They have been popping in/out of place since I was a kid. But my parents were the type to dismiss pain. I was also physically abused. I have been slammed, thrown, kicked, dragged, punched and much more. I never actually thought in all these years of physical pain that physical abuse, untreated dislocations and injury from accidents were the start of a long walk through hell. I have been diagnosed with Parkinson's Disease, Dystonia, Small Fiber Neuropathy, Ehlers Danlos, Complex Migraines, Anxiety, PTSD, Depression, Psychosomatic Disorder, Had a Hysterectomy, Galbladder removed, Cervical Dystonia, IBS-C, Spasms every where including my esophagus, GERD, Osteoporosis, and positive ANA for inconclusive reasons.
    This all began in 2008 when I suddenly couldn't see out of my right eye and the left was blurry. I had stroke symptoms as well. I was hospitalized but diagnosed with a migraine. I got treated for migraines with many different types of anti-anxiety and antidepressants for years. Started getting tremors and arm weakness, gate problems, memory and chronic pain in my sternum and shoulders and neck in 2008. I was 25 then. I have been tossed around from specialist to specialist. Now my entire body tremors. Treatment has mostly been mental so much that I can be a licensed therapist. I have been treated and tested for a ton of things and everything showed nothing despite my intense pain. I am labeled as a drug seeker, attention seeker, hypochondriac by everyone. Until today I thought that could be accurate but I have been doing tons of research to get the right answers. I don't feel like I actually have all of those things. Today I found it, connected every dot, Cervical Spine Instability. What led me to this was my injections in my shoulders by the pain doctor and in the back of my head by my neurologist. My pain doctor kept saying he thinks my shoulders are so painful because of my neck. My neurologist has always thought my Cervical Spine was causing the migraines because usually when they happen my neck back of head and my temple hurt pretty bad especially my neck. I also get vertigo migraines, migraines behind my eyes, stroke like migraines. I have a lot of weakness and numbness on my left side and not as much on the right. Lots of pins and needles. My shoulders, clavicles and top bones of sternum get so bad I can't use my arms. My sternum feels like it's being shredded and ripped out. Last year my neck started getting this really bad stuck feeling and severe knots and spasms. I couldn't move my head.. The ER thought it was early meningitis. Nothing they did helped so it was ruled as stress and migraine. I also started getting electric shocks in my head and limbs. I'm still dealing with the pain and unable to move my head because of the stuck feeling. I am finally getting a mri this week on my neck. I have only ever had neck xrays. So, I hope it helps.

    1 person is talking about this
    Community Voices

    The Electric Blanket is on again and yes, it is August !

    <p>The Electric Blanket is on again and yes, it is August !</p>
    3 people are talking about this
    Community Voices

    Seven hours on a stretcher in an ambulance - viral meningitis

    <p>Seven hours on a stretcher in an ambulance - viral <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce9b00553f33fe9977b8" data-name="meningitis" title="meningitis" target="_blank">meningitis</a></p>
    1 person is talking about this
    Community Voices

    How much can one person take ?

    <p>How much can one person take ?</p>
    6 people are talking about this