Balance issues after bacterial meningitis?

[Taisey]

Hi all,

I was wondering if anyone could help or relate to some issues I’ve begun experiencing over the last few months which have been getting worse.

I had bacterial meningitis in May 2021 and came away, luckily, relatively unscathed but a few months recovery.

Recently over the last few months I started to get vertigo every now and then, no real pattern to it, and I’ve now started losing my balance. It gets worse as I get more tired. I saw an ENT specialist and had hearing test and MRI of my balance nerves so am awaiting results. He did some balance tests on me and I couldn’t do them without wobbling when I had to close my eyes. I am currently on betahistine hydrochloride tablets ongoing. I have been referred to a vertigo/balance clinic so am now awaiting an appointment. If it is too long a wait via NHS I will go private as it is affecting my day to day, especially as I have 2 kids under 4, which is a challenge in itself!

Has anyone else experienced similar balance issues after meningitis?

[Lidldidl]

morning Taisey 👋🏻

Yes, I had near fatal meningitis in 2023 & am 73, so a wee bit older. I was affected by balance & neurological issues & was discharged from hospital with no explanation, told it would take a while for recovery. Reading the discharge medical report, the word Ataxia was used twice, so we looked it up as had never heard of it. (Not saying you have it) but those were some of the symptoms 2 year waiting list to see neurologist so we managed a private consultation. My advice would be to- if you can manage the costs - see a neurologist who specialises in movement & balance issues, privately.

Stay strong , positive & confident 👍🏻 wishing you wellness soon xx

[kcpuden1 in reply to Lidldidl]

Hi, I also had meningitis in 2023. A few months after I thought I was on the road to recovery, I had serious balance issues. Falling down a number of times. I told my neurologist about the problem. She told me I needed a PT doc. Fortunately for me, my wife and I have a Doc friend who does just that, PT for balance issues.

The solution to the problem is : "It is called lymphatic and glymphatic drainage. Glymphatic drainage is basically lymphatic drainage of the brain which helps with balance issues".

Find a PT doc that specializes in this problem. It worked wonders for me.

[Cryptococcal_Ninja]

6 yrs post cryptococcal meningitis that destroyed my hearing permanently which of course also destroyed my balance for some time. Early on anytime I spotted a weakness in balance I purposely repeated that movement over and over until I forced it to become a strength. At first my head felt like a 50 lb bowling ball on my neck rolling around. When I had my first follow-up with neurology 3 months post diagnosis he was so impressed with how I pushed myself mentally and physically he had nothing to recommend and said I had recovered so much in just 3 months he simply had nothing else to offer. Even now at 6 yrs out my balance still isn't what it once was, but far better than existing in a hospital bed being considered a moderate fall risk.

In my case no doubt losing all hearing seriously affects balance and depth proximity around me. There are ways to adjust for it and I have rehabbed myself based on what works for my case/daily function and personally wouldn't take advice from any healthcare advisor as too many stick with what they have been led to believe and meningitis is very much misunderstood and misdiagnosed.

[SunflowerGirl]

Hi Taisey,

Yes, balance issues as well here, diagnosed around a year after pneumococcal meningitis, (when I was around 43). Same as you, noticed problems when my eyes were closed. With my eyes closed, I could hardly stand up!

This resolved by using eyesight to compensate. Now at 59 I am a competent surfer. I hope you get the same recovery, it can happen and worth being positive. Wishing you the very best

s