altered state after viral meningitis

[mslindag]

I had viral meningitis the beginning of July and my brain swelled up so much, I lost consciousness and stopped breathing. Since then, I have had two incidents of "altered state"- total mental confusion. after not being able to sleep. The doctors at Banner accused me of drug overdose *um, no) amd were horrible to me. I've been reading about acquired brain injury and permanent brain damage which is scary. I want to know what I can do to recover. I am taking a vitamin b supplement. What else can I do?

[Gnugoo]

Firstly I would recommend reading up about “sleep hygiene”, and do as much as you can to improve the quality and quantity of your sleep. Things like regular bedtimes, no bright screens or overly stimulating reading matter, wind down of an evening, and so on. Lots to work with and worth doing since, not only does sleep deprivation exacerbate mental confusion, but bodily (and brain) repair happens whilst you sleep so you’ll heal yourself if you sleep well.

I’ve not had severe mental confusion on waking, but I have had perceptual confusion during the day. I drive as little as possible at present because of it, and am hyper vigilant when I have to. However, the brain’s “plasticity” is encouraging in that it lets us know we can heal and improve - so I look forward to not being quite so batty or gormless in the future.

[9215 in reply to Gnugoo]

Thank you for sharing your experience. I'd like to share my story.

I am 26 month post VM. I have a history of Extremely painful Migraines for 8 years. I always end up at ER by day 3 with migraine headache. I was always given Demoral and Vistaril to relieve my pain. Stayed in observation for 6-8 hours then released. Migraines stopped in 1987 after receiving Acupuncture in my right eyebrow.

Migraines started again about 5 years ago, but not as severe until August 2016. Went to urgent care day 3 of Migraine, on a Friday, RX for Norco then told to see my Primary doctor on Monday which I did because pain was still present. she gave me a shot for the pain and nausea. The next day went to work for a morning meeting, by 3pm I started talking but not making any sense; I told my staff "I feel strange I'm going home. Got home at 3:34pm, my husband helped me to lay down in bed. No sooner he closed the door I felt as though my head exploded. Immediately I was having the worse severe pain I couldnt open my eyes. He took me to ER, they said it's just a Migraine. NOT!!! Tried Diaudin, Morphine, Norco. Nothing eased my pain, I was crying so bad which made it worse.Did a CT scan and Spinal Tap at 3:00am, results menegitis. Now they know why I'm in so much pain. I told them to give me DemoraI but they said that it's only given after surgery. I was immediately quarantined for 7 days enduring head pain level at a 15 out of 10, yes that severe. I was barely alive by day 4, on oxygen, my lungs were bad, i could not urinate thus had to be catheterized, which stayed for 2.5 weeks. My pain level was off the charts, given pain meds, combo of dilaudin every 2 hours, then Morphine followed by Norco. Since it was VM not BM I was sent home on day 8 with Norco and Morphine to be taken every 4 hours. By day 11 the pain started lessening to a 7, each day thereafter it eased up. Took 6-8 weeks to get to a 3 out of 10. Recovered but My nerves are shot due to extreme pain. I fear having that pain again so much I have panicked attacks, with severe depression. I now see a Therapist.

I went to bed at 11pm after taking pain meds for headache, woke up at 5am due to headache. Took 2 500mg of Tylenol at 5:15am and at 11:30 headache is back.Another 2 Tylenol taken since I hadn't eaten. Finally at 12:30pm the pain was coming down.

I'm so scared that VM might occur again!

Do we really ever get over the effects of VM?

[Jonad724]

I'm 16 years post near fatal viral meningitis so I do understand what you mean. Firstly though I think you might have been told incorrectly about meningitis. It's the cavities surrounding your brain which fill up with cranial spinal fluid and then pushes down on the brain. The brain doesn't swell it has pressure applied to it which is what makes meningitis so painful because there's not a great deal which can be done to relieve the pressure.

The pressure your brain received can result in changes, it would surprising if it didn't but this is where you would be surprised how little the medical profession knows about the brain and what impact meningitis can have on it.

After discharge from hospital I was very confused, couldn't walk, couldn't sting a sentence together and couldn't respond to simple questions (would you like a cup of tea) without having to spend time working out what it meant and then processing it. This eased over time but I have been left with what I have called Microsoft Windows moments, 'this brain has stopped responding' where for a few minutes I wouldn't know where I was and what I was doing. I avoided driving because of it and they have pretty much gone now but they do once in a while occur. I was left with an acquired brain injury, panic not it doesn't mean that every single one is serious and life altering. For me it has left me with a range of after effects, constant headache, irritable bladder syndrome and I have developed intolerances to caffeine, alcohol and cocoa, Ok for some people might think they are life altering but like everything you learn to live with them.

Your brain has suffered an injury, the long term effects are difficult to predict and there really is no point about worrying what they will be. To quote Baz Lurhman, worrying is about as effective as trying to solve an algebra equation by using bubble gum.

Focus on resting, recovering and I think you'll find that you will make progress although it may be a slow process, patience was never a strong point for me but after VM it now is.

There are things about recovering from VM which are pretty difficult to get away from, tiredness, confusion, feeling like you've done ten rounds with a heavyweight boxer all the time. There is light at the end of the tunnel but it takes time to get there and I'm afraid there are no real quick fixes or diets you can try to solve things quickly. Rest and sleep are the most important. I wrote some blog posts about my experiences recovering from VM, please just click on my profile and then click 'posts'

I'm also now a Community Ambassador with Meningitis Now so if I can help further please message me via this site. Good luck, Jonathan

[VMroom in reply to Jonad724]

Not being a Windows fan on a good day, that made me laugh out loud. It cheered me up too as I'm struggling with the invisibility of the ABI & no one 'normal' understanding, it's frustrating me to the point of getting me down. Think I will make an ABI flashcard with your Windows quote!