Meningitis long-term symptoms

[jgciii_Folsom_LA]

My son 28 years old was recently diagnosed with coccidioidal meningitis, a fungal form of the disease. He is currently on antifungal drugs and had a shunt installed to control intracranial pressure. He is currently at home recovering. He has double vision, has some balance problems, and has memory lapses and occasionally makes nonsensical comments. Does anybody have any experience with symptoms like this and have any idea how long they might last?

[Luckycat23]

Hi, i hope this mighy help even if its not the answer you are looking for but, i had menengitis 1year ago and still suffer those symptoms you explained. I then got it again and am currently on antibiotics for the future 🤦‍♀️ just got 2 take the good with the bad !

[Cryptococcal_Ninja]

I got slammed with cryptococcal meningitis 5.5 yrs ago. Thnx to a pathetic neurologist it escalated to the point of causing permanent profound hearing loss in both ears as well as a host of issues that slowly improved. Early on in addition to being deaf in a matter of weeks I had no balance, short/long term memory, loss taste/smell, had facial paralyzation. Took a ton of aggressive antifungal treatment to get it eradicated, as in daily treatment for a bit over 2.5 yrs and a lot of determination to recover as much as possible. I did my own rehab from relearning to walk, talk, chew, etc. Also did lots of thinking to force memory to return, came up with my own version of vestibular/balance therapy to regain control. Over time, day by day, things did slowly improve. The majority of my function has returned, would say maybe 70-80% overall. Still permanently deaf, balance and endurance still suffers a good bit as times, but I do recall how deteriorated I was, so I am far ahead of that.

I will say do be aware of the treatment involved as it caused a 2nd stroke in my case as it and the infection affected how my blood was processing and a drastic spike in triglycerides caused the stroke. Apparently I also had a 1st small stroke, but honestly think that was the infection forming on the MRI.

To sums things up, my Infectious Disease Dr told me early on to be patient as recovery from cryptococcal was going to be quite slow and he wasn't kidding. I never lost hope, pushed every day to do a bit more and here I am back to doing OK. I will say that your son, family, friends will likely need to accept his new 'normal' way of living as that's the single best way to describe it.

[IndieRabbit]

Hi, I think you'll struggle to find personal accounts of recovery from fungal meningitis as it's extremely rare. Full recovery from meningitis is possible sometimes and I think a forum like this is more likely to consist of people who haven't made a full recovery or aren't recovering quickly.

The type of meningitis even down the the actual pathogen (bacteria/virus/fungus name) has a significant impact on what to expect in terms of recovery. Bacterial meningitis generally has the worse prognosis regarding both death and permanent after effects. I had this type when I was baby (before first words) and my speech and writing is still affected 27 years later (comprehension is fine so it just takes me longer to get my words together).

Viral meningitis generally has a better prognosis regarding permanent after effects and its rare for it to cause death.

I had a quick look and there isn't a lot of info on fungal other than most people make a full recovery but that wasn't specific to the fungus you mentioned. I'm not surprised at the lack of information, for reference I live in the UK and even the NHS says that up to 1 in 2 to 3 people suffer from permanent after effects from bacterial meningitis. You'd think they'd keep better track of survivors and have a more accurate figure.

I wish your son the best and I'm sorry about the lack of information available surrounding fungal.

[Cryptococcal_Ninja in reply to IndieRabbit]

I can honestly say based on what I have dealt with and researched I would choose viral or bacterial if there was a choice, lmao. At least both are more recognizable, easier to treat early on. My Healthcare team told me cryptococcal is quite rare and mimics human cells, making it so difficult to discover and treat. It took over 2.5 yrs of aggressive daily antifungal treatment to finally get it out of my system. That was 2 rounds in the hospital followed by 2 rounds of at home treatment. Remainder of that 2.5 yrs was daily oral treatment. I never would have believed a fungal infection could be that involved had I not experienced it. Not saying other strains would be more pleasant, but cryptococcal is severely life altering as the damage is done and often permanent before the infection can be properly diagnosed. Then the treatment needed can cause organ damage/failure in the process. Definitely wish there was much more knowledge on it as most in Healthcare seem to know little about it. Even Infectious Disease told me it had been quite a long time since they had to deal with it.

[CareGiver6]

Hi, my wife (60) had viral meningitis starting October 2023 and was in the hospital for 2.5 weeks. Of those weeks and two weeks after, she has no memory. A few other events within a few months prior to getting sick, she has vague memories. Her balance was bad at first, could stand without help. Once home, it took 2 weeks to improve to use a walker on her own. Another two weeks, she was walking unsteadily without a walker. Now, 4 months after her hospital stay, She can walk a mile solo. But she’s still not 100% with her balance. I’d say 90%. Improvement has slowed but is still happening. When she’s tired, all residual symptoms worsen somewhat. Eyesight is fine, though she says one eye has developed a noticeable number of floaters. Rest is key. Hope this helps.

[Witchy46]

Hi I had bacterial meningitis May 2023 I have lost all hearing on the right side and a bit on the left my balance was terrible for months but was slowly getting better my eyesight has been affected but not by much but it is still changing I’ve had to have 2 new sets of glasses since October as it is changing. When I’m tired my right eye starts to close I have a near constant headache and my neck hurts a lot. Rest is key. As to memory loss I’ve had some but not enough to worry me. It’s the brain fog that’s my main problem since returning to work as it makes me feel like an idiot when I can’t remember what some things are called like a bag or receipt. (I work in a shop on the till). I’m in the UK and the wait time for anything on the nhs is long, I’m still waiting for a hearing aid that I need but my hope once I get it, it will make things easier.

I’m sorry your son is going through this but rest rest and more rest is what I’d advise and to take each day as it comes.

Hope this helps.

[Carole4Jesus7]

I have systemic coccidioidomycosis, and have meningitis symptoms, but they are not constant. I have been having the symptoms for about 4 years. It's a progressive disease. Fungal meningitis can last for years. I can't take the antifungals due to the heavy side effects, so l do it naturally. Diet, essential oils and lose cannabis for pain and sleep... anxiety. My internist told me that he wished all of his patients would do it this way. The antifungal drugs are hard on the liver too. God bless you and your son.

[Cryptococcal_Ninja in reply to Carole4Jesus7]

No doubt some natural approaches might be OK, but that of course depends on the severity of the fungal infection. In my case my hearing was destroyed, no balance whatsoever, taste/smell wiped out as was long/short term memory as well as facial numbing/paralyzation. There was a 2 week stretch when this really hit that I don't really even recall. For a few months no labs, scans, etc. could detect it. Then finally a lumbar puncture was done to have an answer. They had to act quickly/aggressively with treatment to get the infection under control. I was told of possible risks with treatment, but at that point it was clearly the only option.