Post viral meningitis symptoms

[Nezzaj]

So, my story goes like this.....

At 34 years old, I was on maternity leave from my employer who i had worked for 10+ years. I was lucky to have a great boss who granted me a second year of maternity leave - allowing me to spend time with my family & also look at studying for a more 'family friendly' career. During this time, i commenced a uni degree & contracted VM 5 weeks into my first semester.

What a change in my life!

7 days in intensive care & i was discharged back to my 'new' life. Little did i know that my world had changed forever. 2 years on & new world reflects:

- memory loss - particularly short term

- concentration

- regular headaches

- daily medication for headaches

- anxiety

- frustration like nothing ever experienced

- weight gain (medication related) leading to self consciousness

- inability to understand simple concepts at different periods

- extreme irritability at times

- irrational behaviour

- periods of exhaustion

- self consciousness at meeting new people due to my perception they will think Im not listening as i cannot often think quickly enough for the conversation to flow freely

- extreme stress on my relationships with family, friends & co-workers

Where am i at now?

I have had a fantastic GP listen & explain this is NOT normal & ive been referred to a neurologist. The neurologist has indicated i do have a brain injury & is sending me for psych tests to identify how much damage has occurred. I am about to commence botox injections to see if this will address the headaches so i can wean from the medication Im on.

I would really welcome hearing from anyone else that may have experienced these after effects. Please let me know of anything that might work. Im at my wits end & the effects its having on my life are life changing.

[Jonad724]

Hi, sorry to hear you have had such a rough time of it but believe me to have a GP that understand how serious VM can be and doesn't just think it's like flu is a major blessing. I had near fatal VM in 2002 and I was left with short term memory loss, gaps in my memory from before VM, weight gain (3 stone in fact), inability to grasp even simple concepts (although being male my wife tells me that's not necessarily the VM!) and I have an acquired brain injury which affects my metabolism and has left me with intolerances to alcohol and cocoa so that's beer and chocolate out the window.

The only real thing which works with recovering from VM is rest, rest and more rest and I know only too well how frustrating this is. You want to get back to 'normal' but you can't. I write a blog on here about my experiences of VM which might help (One of which is 'Oh no it's Angry Dad') which you might find helpful in identifying the same things I went through that you're going through now. I have been left with some residual side effects, constant headache which I no longer take medication for since my neurologist told me the body gets used to it so it stops working after a short period of time anyway, Molarett;s Meningitis, short term memory loss for names and directions and the continued intolerances.

On the plus side after five years away from sport to allow the brain injury to settle down I went back to triathlon. I was never quick and after VM I was even fatter and slower but in 2013 I did my first half ironman (1.2 mile swim, 56 mile bike ride, 13.1 mile run) and I have since done it again and my third one is in August.

If it helps I do know exactly what you're going through except that I didn't have anything like the medical support that you have but there is light at the end of the tunnel. I couldn't walk after VM and had to learn to string words together to make sentences again but 13 years on I am as fit as I have ever been, 3 stone lighter and living with the after effects rather than letting them live my life for me. It just does though I'm afraid take time and it's good that you have recognised that this change is now a new life for you, believe me this is crucial in overcoming this awful disease.

Please feel free to message me though if you have any other questions or you think I can help :-). Jonathan

[PRae]

I've read your story as well as many others on this forum. It is amazing how much our experiences mirror each other. I had BM three years ago January. In short meningococcal meningitis. I came so very close to not making it that I have a true near death experience story. Please know that you are not alone. I too am lucky enough to have a wonderful primary physician. My neurosurgeon actually showed me a full view of my meningitis that shows up on mylogram. I can't imagine what a brain scan would look like. It sounds like you are doing everything correctly. This is a new normal that is hard for us to get used to. Keep doing what you are. I'm here anytime you would like to talk to someone who gets it. All if it. God bless and take care.

[Hidden]

Hi,

I've had VM three times now and totally understand how you feel, its really difficult to explain to people how it effects you after your recovery, well I say recovery! its a very long recovery time and you have to take it a day at a time, my last bout was in Nov 2014, I still have the long term effect of my first attack.

All I can say is, it takes time and people have to be patient and understand what you've been through, just because you have no visible injuries or wounds, that doesn't mean your not suffering.

A day at a time.

[Sylkim]

I too have all of your symptoms and I am 4 year post VM. My GP doesn't recognise the symptoms as post VM. You are lucky to have an understanding GP. I continue to struggle through life and struggle to hold down my job of 25 years .

[Nezzaj]

Wow, it seems to be a bit of a common theme. So I guess its now adjusting & accepting my new normal.