Meningitis

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    The Incandescent Light Bulb Ban Harms Many

    I have photophobia and over 10 years dealing with it, I have found incandescent bulbs are the only light I can tolerate for long periods. This year, the US president, Joe Biden has pushed forward on a ban of all incandescent light bulbs in an effort to support reductions in carbon emissions. I am terrified of this because it means I will never be comfortable in my own home anymore. I cannot tolerate the greener options available (fluorescent and LED) and being around these lights cause me significant pain and mental distress to the point where I become non-functional.

    Does anyone know where I can start to get the needs of people with photophobia and other visual sensitivities heard on this issue? I was thinking about contacting an optometry group, a news station, The American Foundation for the Blind, The ADA, writing a letter to local state reps, even the president.

    There isn't really a group specifically for photophobia and light sensitivity and our needs often go overlooked because eye problems that require brighter lighting are more common.

    Also I don't have all the illnesses I hashtagged, I just wanted to bring other people with conditions that can cause light sensitivity into the conversation.

    #Photophobia #EhlersDanlosSyndrome #Autism #Migraine #ChronicMigraineSyndrome #HemiplegicMigraine #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Meningitis #BrainInjury

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    I’m new here!

    hi im here too try and make sence of the health issues I have I had bladder womb removed due to severe intisital cystitis and oab I have no children i was 28 ,ive since lost half if my bowel too no blood supply, and persumed slow transit , I have a parastomic hernia behind my transverese colostomy ,im reliant on 2 pickolax twice a day if not my bowel doesn't want to work im now awaiting further surgery too create a iliostomy, I have issues with pelvic floor , intussuption and ive had a rectal prolapse fixed but has since come back , ive had 30 surgerys but im scared that the iliostomy won't work , ive never had answers too why this is going on ,I also have widespread chronic pain fybermygia, ostiarthiritus in neck top of back and right knee , last few weeks ive started sweating really bad I just generally feel unwell , is it all linked, im 39 years old and ive had tons of issues but its always been put down too meningitis as a baby , I also suffer from recurring overian cysts as overys were left in due too age , ive had ectopic pregnancy, appendix, laoaroscopies 3 laparotomys I have a urostomy and a transverse colostomy at present

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    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

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    Chasing Ghosts

    #MentalHealth #PANSPANDAS #Anxiety #AutoimmuneEncephalitis #Genetics

    Our son’s story of finally getting diagnosed with Pediatric Acute-onset Neuropsychiatric
    Syndrome (PANS)

    It was 2013 when I found myself at the local library thumbing through a book about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). I was scanning the pages for a solution on how to “fix” our son but nothing in this story sounded familiar. My husband told me I was chasing ghosts and maybe he was right. But I was still slipping into a yearlong obsession to find answers.
    At the time, Chris was six years old and we had already weathered through a handful of disturbances. With little guidance from our pediatrician, all of Chris’s issues had been explained away. The night terrors, the constant infections and fevers since birth - all were “normal”. But it wasn’t normal to us - he was having two or three a night terrors a night and their effects were spilling into his daytime life; he was exhausted, anxious, and started panicking every time I left the house. We were eventually given the anxiety diagnosis and Chris started meeting with a child therapist to learn how to talk down to his “brain monsters” (if only it had been that easy). Our pediatrician also offered an anti-depressant and we declined. He was only six years old and none of this felt right. A final blow, the pediatrician asked the dreaded question, “Does anyone in the family have a history of mental illness?”. I found myself confessing that at the same age, I also had panic attacks and separation anxiety. I explained that it eventually went away, however, as an adult, it morphed into a generalized anxiety that would rear its head during times of high stress and interestingly, during times of illness. In that moment, after I confessed my little secret, Chris’s health issues seemed to be immediately filed under the “Apple doesn’t fall far from the tree” folder or at least that’s how it felt.
    Through all of these appointments what was never discussed was Chris’s health history. His actual medical file, if anyone had bothered to look, was full of emergency room visits and hospitalizations. By three weeks old Chris spiked a 104 fever and was rushed to the hospital for a full septic work up. He was admitted for five days until the fever subsided. Bloodwork was inconclusive and we were sent home only to be readmitted four days later when another high fever spiked. No explanation from either hospital stay but now our nerves were rattled. In addition to the random high fevers, Chris’s first year of life was riddled with ear infections; ten in ten months to be exact, and two burst ear drums. By the time he turned three, the high fevers seemed normal to us. And then there was the Cervical Adenitis episode - an infected and inflamed lymph node in the neck. After a CT scan and another scheduled surgery, his lump was eventually drained under anesthesia and we were sent home with a three month supply of antibiotics and zero explanation of how or why this happened.
    These medical events from Chris’s infancy and toddler years were never brought up during therapy sessions. And I wanted to know how these awful fevers and infections were related to his night terrors and his growing separation anxiety? These questions wouldn’t leave me and instinct finally started to kick in. I had to stop shying away from pushing the doctors because I was embarrassed about my own history with anxiety. So that’s how I ended up at the library surrounded by medical journals that I barely understood and stories of children with Obsessive Compulsive Disorder (OCD) that came on overnight.
    Life marched along for us and we started chalking Chris’s anxieties to him just being “difficult” or “overtired”. However, after Chris’s 11 year old well visit, life as we knew it would be thrown off course for good. This visit included two booster vaccines (DTap and Meningitis) seven antigens at once. The appointment had been on a Friday and by Sunday night Chris was feverish and complaining of a headache. On Monday the school called, Chris was having a full-blown panic attack and I had to come get him right away. I took him straight to the pediatrician and after a quick eyeballing of his state (dark circles under his eyes and ghost white skin) and a glance at his file (you know the one) the pediatrician dismissed us with a “maybe he’s just afraid of shots” comment. This was the norm for us now. Any time I questioned the connection between Chris’s health and his anxiety I was told again and again that “anxiety just runs in families”.
    Chris sat on the couch that afternoon and sobbed and sobbed.... for hours! I had never witnessed anything like this and that night he started having night terrors again and every night after that for the next month. The school mornings became torture; we had to scrape him off the floor and wrestle him into the car. This was a new hell for our family, the intermittent night terrors and separation anxiety was one thing to deal with, but this, this was sheer awfulness.
    I started chasing ghosts again, but this time I saw them for what they really were; our genetics. With the help of a few selfless academics that took the time to answer my desperate emails I was pointed in the right direction. And that direction was 50 miles north in Boston. The day had finally come and we were seated in front of a doctor that specialized in PANDAS and PANS. He listened to me rattle off Chris’s symptoms, illnesses, lumps, fevers, the whole time he patiently took notes. I had been bracing for the mental illness confession but instead I found myself answering questions about my mother’s sisters that had rheumatic fever as children, my grandmother (their mother) that suffered from debilitating rheumatoid arthritis, and my own mother who had Polymyalgia rheumatica. It was becoming apparent how relevant it was that Autoimmune Disease ran on my side of the family. This doctor discussed with us that Chris most likely had a fever syndrome as an infant and toddler (random fevers and cervical adenitis were hallmarks of an autoinflammatory disorder called Periodic Fever, Aphthous Stomatitis,

    Pharyngitis, Adenitis (PFAPA)). We walked away that day with a diagnosis of PANS. The next stop, tonsillectomy and antibiotics. The ghosts had spoken!
    Chris had not inherited an anxiety disorder; he had inherited an immune system with a roadmap that had mistakes. Slowly, he started getting better. The night terrors disappeared and along with them, the day time anxieties.
    For our son, symptom onset was not overnight. He had so many health issues starting the first few weeks of life, which continued throughout his early childhood. His body was in a near- constant state of infection and inflammation. Add in his medical history to a family history riddled with autoimmune and strep-related health issues and it is no wonder that our son has PANS/PANDAS.
    Today we know the flares will come but we now have a plan. We have doctors to call for advice and treatment and we have a village of families just like ours that we can reach out to. Our hope is that all of this hell that Chris has been through has some purpose. I hope his story resonates with a parent out there searching for answers. It took our family 11 years to get Chris diagnosed and on the path to healing. I hope someone reads this and the time it takes to find help is cut in half. Please remember that the ghosts and secrets we carry with us are there for a reason. #Parenting #Gaslighting

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    Given and grief

    #Fibromyalgia

    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

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    Warning signs for a primary immunodeficiency #RareDiseaseDay

    This day is special for many of us because it is one of the few days we feel heard. I wanted to raise a little awareness and thought I would share the warning signs for primary in adults.

    Known Immunodeficiencies in your family.

    4 or more infections that have to be treated with antibiotics in one year(e.g. ear infection, bronchitis, sinus infection, pneumonia,…)

    Recurrent infections that need severely prolonged antibiotic treatment.

    Two or more lifethreatning bacterial infections (e.g. sepsis, meningitis, …)

    Two or more radiologically confirmed pneumonias in three years.

    Infections with normally non-dangerous bacteria/ viruses.

    Infections in unusual locations.

    Please note that the warning signs are different in children. This is in no way meant to be for self diagnosis but rather to inform you about it.
    #RareDisease #RareDiseaseDay #PrimaryImmunodeficiency

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    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.

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    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.

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

    The past few days have been awful pain wise. The aftermath of the viral meningitis is taking its tall. My pain bank is full yet there is still more pain that keeps on needing depositing and it overflows. Trying to cope in every way I know and as I can not get to the cold water then heat is my only friend as the little pain relief I have is doing nothing to curb the edge.
    I fought as long as I could before I relented and had the electric blanket was put back on. Yes it is supposed to be the height of summer but my body thermostat is faulty. I might have lost this battle but I will not loose the war. I am a warrior. Chronic pain is a tough and so far I have a 100% rate of surviving. I got this. Even though it is agony right now. #ChronicPain #Pain #Meningitis #warrior #AutoimmuneDisease #ChronicFatigue