Thank you. 
Interesting. What about neck stiffness? That’s the one thing I’ve heard a couple of times.
edit: and headache.
Yes. Exactly, the classic meningitis symptoms would be fever, headache and neck stiffness. Encephalitis would be fever, headache, neck stiffness and altered mental status.
Hi. Tonight while fertively searching the internet for verification that yes, VIRAL meningitis CAN have permanent brain consequences…I ran across all your posts. I was completely compelled to join & post! Back in summer of 2000 my husband, then age 29 years, began suffering illness at work. Due to the nature of both his work & the illness, he was temporarily forced to go “disabled” until he got better. This illness all began thus with his legs suddenly & completely losing feeling & control to hold him; he simply fell down and had no idea why, or how to make them work again! Shortly thereafter the terrific headaches began–much like the worst possible migraines (which he had NEVER had in his life! Btw…we’ve been together since he was 16 years of age, so I know most of his health history!) Over the course of several WEEKS, he struggled between bouts of massive vomiting, complete mental confusion & inability to speak a language recognizable by anyone but himself, the inability to decipher who anyone was besides me sometimes (not even our 3 children, or his/mine parents!), and of course, the severe headaches where the veins on his bald shaved head would stand out high enough to be measurable!! Two separate times I had to call the rescue for assistance as his blood pressure (on meds) climbed dangerously high, as did his confusion, and constant repititive behaviors (shutting on/off lights & going in to the toilet to pee, but never doing it…for HOURS on end MANY nights!!) As I said, this continued for WEEKS! He was hospitalized locally (the world’s shittiest place!) where his Doc claimed to me (after only bloodwork–dunno what he even tested!) that my husband was suffering a nervous breakdown!! They called in a Therapist who completed an eval & told me that diagonsis was simply laughable & to take my husband elsewhere as soon as possible! I was desperate to get him stable enough to do that!! I had 3 young children at home, a full-time career, and was recovering from severe leg & knee fractures myself at the time…so this was NO easy task! After 5 days, with the cycle of symptoms continuing & no further into diagnosis or help…I brought my husband home. Of course, it all continued. Finally, his brother & I “tricked” him as he came “off” one of his “aggressive” phases, morphing into the headaches where he would be completely passive as he was laid up sensitive to all light & noises for at least 24 hours (this was a passive phase) we loaded him into our van & drove him out of state a couple of hours to a better known, respected teaching hospital in Vermont State. Oh…a local neurologist I had finally found & taken hubby to nearer our home had previously been on this hospital’s neuro team & set up our arrival in advance. We were instantly admitted to the E.R. where a lumbar puncture was completed. I WITNESSED THIS COMPLETE PROCEDURE BEGINNING TO END WITH A FRONT ROW SEAT!!! He was NOT lain down, but rather told to lean forward toward the edge of the bed in front of him, so as to “stretch” his spine for better access. NO LIDOCAINE OR ANY NUMBING AGENTS OF ANY KIND WERE APPLIED. She attempted AND FAILED access THREE TIMES. I watched as my hubby broke into a raging sweat and it literally POURED off his soaked body after her 3rd miserable failure, grinding that horrible needle around between his vertebrae. She told us she would try one more time BEFORE she called for a device which (I think she said used sonar??) would help find the tiny space she needed to insert the needle!! (REALLY, LADY??? WHY SO SOON!!!) Luckily, this time she hit her mark! Now…please understand that I make NO exaggeration, and I WITNESSED THIS MYSELF, OR NEVER WOULD HAVE BELIEVED IT!! As soon as the needle went in (even before we realized it had!) murky-white’ish liquid came SPURTING out, she DOVE/ROLLED on her stool away (slightly covered) and it hit & SPLATTERED all over the wall behind her!! Ok. I am not so good as measuring. So. I wear a woman’s US size 8. The distance this liquid SHOT was 7-9 of my paces!!! She literally screamed, darted for the phone, shaking, & requested assistance. She quickly put some measurement “cap” on the fluid, explaining that it was very bad for the fluid to have SHOT out so extremely…and within 5 seconds (she counted ALOUD) the meter (reminded me of a rain measurer from the farm–haha!) was up to the level “20”. She told me again that this was bad. She said it should take about 5 minutes to fill to half that, when healthy. A team of other Doctors arrived, whisked hubby off to MRI. While I waited, they explained that had I not arrived when I did–hubby would have suffered permanent brain damage within 24 hrs…and dead within 48 hrs. (My home Doc had LAUGHED AT MY REQUEST FOR A LUMBAR PUNCTURE, TELLING ME IT HAD NOTHING TO DO WITH HIS SYMPTOMS!!! HE ALMOST KILLED MY HUSBAND!) Howev, according to the law (we were later told) one cannot sue for NOT treating the Patient…only for MIS treating the Patient. Swell. I am NOT sue happy…but felt this warranted saving others lives!! So…they kept him in this Vermont hospital for 5 days, while giving him “special antibiotics reserved for high viral illnesses” (as they explained to me at the time), IV fluids, pain meds, & tummy meds. After the lumbar puncture he improved pretty rapidly. They informed us the culture grew nothing, therefore it was viral meningitis. (I forgot to mention I several times requested him being tested back home for West Nile disease as it was rampant in our area in NYS then! I believe they scoffed at that, too, until Vermont, where they said the test was negative.) He was tested for seizures due to continued “blanking out” and other “odd” behaviors. He was quite easily aggressive for the 1st time in his life with me. It was all BEYOND terrifying. Although we were told he had no seizure activity, he was prescribed Depakote ER, which managed him symptoms very well! We followed up back home with the neurologist who had basically saved hubby’s life, helping get him help in Vermont. This Doc continued the Depakote ER for 6 more months and explained hubby could suffer permanent TBI, including behavioral changes. Here’s one of the real kicks–hubby remembers little to none of this ENTIRE experience!!! He remembers none of the 1st 2 follow-up apts. I should also mention that before discharge, we were “strongly requested” to sign extensive releases to the CDC & the Mayo Clinic, with follow-up bloodwork submitted through a special protocol for a full year afterwards! NONE OF THESE RESULTS HAVE EVER BEEN ALLOWED TO US, NOR IS THERE A RECORD OF THEM AT THE HOSPITAL!!! NONE OF THE RECORDS WERE ALLOWED ACCESS TO THE NEUROLOGIST WHO PROVIDED FOLLOW-UP TREATMENT. After several months, and multiple contacts to his prior partner Docs, he was sent brief notes, no details or tests/test results. This past year, 2012, I finally wrote a strong letter to this hospital requesting hubby’s records…and was sent VERY brief notes. Tests were included, but not the MRI results, or a record of the seizure tests. There is NO MENTION of CDC, or all the follow-up bloodwork submitted to CDC through this hospital & subsequent visits!!! Had I more time, maturity, & experience THEN, I would have known to seek info/assistance through our health insurance!! Now…here’s what’s troubling me the most. Hubby has had personality changes, that I have no real way of knowing if they came from this brush with death (which, btw…every website just casually casts off viral meningitis, saying people recover at home…no perm issues…yeah. WRONG!) and I have searched in vain for answers, such as–what tests could I request to prove that there is TBI from the meningitis?? Hubby can say something, then argue to no end 5 seconds later that he NEVER said it–or didn’t DO something he just did!!! It seems these symptoms have increased over the past couple of years (or is he just being a absolute & complete jerk and denying it!!!) It’s scary & bizarre!! His anxiety & “aggression” (maybe better defined as impatient agitation) to me have always been amped since this (he never is physical, but can be verbal & deny it HEAVILY after!) He avoids most scenarios that keep him involved for too long, is constantly “on the go” and even suffers terrible “Restless Leg Syndrome” but all limbs are wont to jerk, act agitated, restless, … We have visited the neurologist previously when I was confused about his behaviors, and I think it’s time again, I am disheartened to say…Any help is SO SO SO welcome!!! Has ANYONE ELSE EXPERIENCED THIS!!! Thanks!! Sorry such a drawn out story, but I wanted you to have it all.
Hi,
I’ve added paragraph breaks to your post to make it easier to read. I hope you don’t mind.
We were warned when my mother was first ill (a few years before your husband) that some permanent damage was likely. She remembers very little of her illness and not much more of the first few months of recovery.
The damage is apparently caused by the build-up of pressure. WhyNot posted at the beginning about the body producing more fluid - which can’t go anywhere so it squeezes the brain. We were told to think of it as a brain injury rather than an infection.
When my mum returned to the doctor recently (15 years after the first infection) he said there could be ongoing effects from the meningitis. Luckily, she was cleared of all traces when he tested her. She was absolutely terrified that she might have to undergo another lumbar puncture.
I don’t know enough to comment on your husband’s prognosis. I think going back to the professionals is a very good idea. I do hope you can find a good neurologist who understands what’s happening with your husband and can offer something concrete.
For what it’s worth… {{{hugs}}}
Thank you very much for the paragraph breaks! It was late at night & things have been so very difficult here lately… Didn’t your mum suffer bacterial? whereas my hubby was viral, and the Doctors kind of blew it off after (except the neurologist) that it was “bizarre” he became SO ill…but yet they never aided us truly after!
Can the possible damage actually show more, though, as time goes on?? Although, a couple days ago hubby’s Mom told me he has stopped one of his meds!! I knew nothing about this from him & he’s so precariously listening to me right now…in truth our marriage (after ALL THESE YEARS & ALL THESE things we have lived thru together!!!) is in grave jeopardy. I am in utter turmoil to if any of these behaviors of his could be latent brain issues!!! Now the meds…sheesh!
I can only bring it up at our next counseling session in hopes, with her assistance & support (and KNOWLEDGE OF ANY OF THIS!!!) he will be much more suggestive to going back to his neurologist…that there is something indeed going on… Thank you so very, very much for your response! Just the smallest gesture of support & kindness is what keeps me going right now. Bless you & your mum.
I’m sorry you’re going through this. It’s obviously a very difficult time for you. No-one here can give an accurate diagnosis for you or suggest a treatment option. They would be negligent to do so for a patient they’ve never met.
From wiki:
So as far as most doctors would be concerned, it *was *“bizzare” he didn’t just recover by himself. Something was unusual, even at the beginning of this case.
If there’s changing medication involved, all bets are off I’m afraid. No-one here has your husband’s medical history, access to his test results (current or historical) or can ask him relevant questions.
As for symptoms reappearing or growing worse over time, well this whole thread started because my mum had to get tested for it again after over a decade symptom free - and her doctor was as relieved as the rest of us when she came up clear.
So, it’s possible, but only your husband’s medical practioners can tell for sure.
ETA - during that first year or so, she had many of the symptoms you described in your husband - and they came back years later when she got very stressed. She had to quit working quite literally ‘for her health’s sake’.
Hang in there. The only honest answer to most behavioral changes after anything that involves the brain is, “We don’t know for sure, but…yeah, could be.”
Less important to understand the why (although, yeah, I completely understand the desire to understand!) and more important to find a way to fix it. If you and/or he need to blame it on the meningitis rather than each other, sure, do that. It could very well have been the meningitis. So go with that.
More important is how to fix it. The meningitis is done, so that’s irrelevant. They can’t go back and do anything differently now. Now you need to work with your counselor, maybe a neurologist and a good nurse and pharmacist to find a drug and behavior regimen that helps him and that he’s willing to stick with. Don’t expect easy answers or overnight fixes. Minds/behaviors/brains are really tough to treat.
I’m sorry you’re going through this, too. Please take care of yourself.