Just a year in : Hi, I got meningitis just... - Meningitis Now

Meningitis Now

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Just a year in

Fiona-bennet profile image
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Hi, I got meningitis just over a year ago. It started as tonsillitis which fed an ear infection to cause conjunctivitis. The headaches and pressure on my skull caused my eyes to haemorrhage and two weeks after being diagnosed with BM I was diagnosed with mastoiditis. I suffer with so many issues after it all that I don’t understand what’s wrong. The migraine, loss of peripheral vision, hearing impairment, mood swings, anger, depression and the fact that every 3 weeks I get put on more antibiotics for another infection is becoming too much. They don’t know what’s wrong with me but I just want answers and it’s all becoming too much to bear. I’m just wondering what I can do to feel like I’m being heard because up until finding this I thought that no one could ever understand, because I survived so that must mean I’m healthy. Please help me before I help myself feel nothing

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Fiona-bennet
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sdjohnson231 profile image
sdjohnson231

Fiona - I am so sorry to read about what you've been through. It sounds like a lot! And you are continuing to fight every single day. May I ask what doctors are currently working with you? Do you have a neurologist on your team? Are you still working with an infectious disease doctor? It sounds like you could benefit from a patient advocate who would help you juggle all the different information you are being given by your various doctors. It's all so much to take in and digest at one time. Does your doctor's office or hospital offer such a service? My heart goes out to you. Susan

Fiona-bennet profile image
Fiona-bennet in reply to sdjohnson231

I have a neurosurgeon and an ENT on my team of doctors. I just had my last appointment with ID and they said that the 4 months of antibiotics helped and that it will still slowly heal.

LMains profile image
LMains in reply to Fiona-bennet

Hi Fiona. What country are you in? If the US, are you anywhere near California? My ENT replaced my mastoid bone (normal mastoid bones look like swiss cheese, with air pockets in them that infection hides out in) with bone "pate" (chips of bone from my skull, mixed with my blood).

It stopped the many ear infections that I had for my whole life. This is all before I got BM and unrelated to BM, but I wonder if it would help in your case.

In any case, hugs to you and so sorry for all you are going through!

Fiona-bennet profile image
Fiona-bennet in reply to LMains

Australia. Thanks for the kind words

Lippistix profile image
Lippistix

Please give my daughter's story a read on this site. Rosie S's Story. Here lies sugnificant success (from what we know so far), for complete recovery from VM!

She suffered for near on two years before discovering meningitis now, subsequently trying cranial massage by visiting an independant cranial osteopath in her area.

All the symptoms you are experiencing are pretty much similar to what she suffered. It seems the key, and recent breakthrough, is releasing the spinal fluid which VM leaves a blockage for...and enabling it to flow again through your body, particularly your head.

There are some on this sight who have now given it a go after reading about it, and after just a couple of sessions, felt considerable relief.

I the last few days Rosie and I have been contacted by the media, news papers and radio to tell our story of this potential breakthrough!

We now feel we want to help as many poor people who have suffered this dreadful illness for which before now seemed there was no light at the end of the tunnel.

Rosie coupled this with acupuncture, having alternate treatments once a week, now a couple of months in. I understend that you suffered BM and not viral, but this treatment may help you in some way. Worth a try! Xx

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