The hidden after affects - emotional

Hello

I was diagnosed with Meningitis on holiday. I was initially in ICU for one night and brought to the main ward when it was thought I had the viral strain. Within 24 hours however, the pain in my head was worsening, I was becoming agitated, pains in my legs was increasing, losing consciousness and violently vomiting.

A few days later I woke up back in ICU with no memory of what happened. I was told I had bacterial Meningitis. I had a central line going into my neck, my god those things bleeped all the time. I stayed in ICU for 3 weeks before I received repatriation back to a hospital in my home country. All together I spent 7 weeks in hospital. The Neurologist was amazed at my strength, grip in arms and legs. Throughout my stay, I suffered from fever and drug seizures and some issues due to having a catheter.

I was discharged from hospital in my home country without any information about after affects, not even a discharge letter for my GP. The followup by the neurology team has been rather poor. It was a teaching hospital and felt like my duration there was just an academic exercise and they became to repeat all he test I had on holiday, even and additional two lumbar punctures. In total I had four. Anyway, I made good physical recovery and was determined to be back in work in January which I did.

But I am suffering after affects.

Numbness, tingling sensations on my head and down the left side of face, arms, legs. Sometimes when I am very tired it feels like my left leg is pulling.

Headaches - sometimes they can be bad but most of the time its like a hangover

I have Papilledema

I felt great just after Christmas even had some red wine of the period and gradually started to get out and about. But I have noticed that alcohol has an negative affect. I can blank certain parts of nights out. For eg., i can be out for an hour and not remember 10 mins of it etc.

My concentration is poor

But the worst affect for me if that colleagues and friends and commenting on the change in my behaviour since the illness. This is really really getting me down. They are not only commenting to me but also BF who has been my main support. I am being told to just snap out of it or stop using it as an excuse. I dont like big social gatherings on nights out and can only cope with small group of people. When there is a big crowd I go into myself and become withdrawn. This was not me before.

I am irritable, overly sensitive and unable to think clearly at times. One friend even asked if I was bi-polar. Peoples reactions towards me are making me feel worse and with that then comes the increased headaches etc.,

When I phone the neurology team in my home country they didn't says much only that my MRI back in November was clear.

As I recovered so well physically, I feel slightly lost by these emotional challenges. I have all my limbs, no epilepsy and field vision is improving. I have no reason to feel so up and down at times.

There is a lot written about the physical after affects but little about the emotional aspect and I would like someone to share their experience with me and also if it is an after affect, how can I get people to understand that and give me the breathing space I need.

Thanks in advance.

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  • Sadly you are not alone with these issue. If you look on the uk website Memingitis Now, you will find some factsheets that you can show to "friends" and work colleagues and BF. It sounds like you have been through a really bad case of VM and in my view you are doing remarkably well. Those factsheets will also reassure you of that. I had VM in June 2016 and havnt worked a full week since (plan to do so in next few weeks). Only recently have I started to feel like my old self. I went to a big family party in January, I am mormally life and sole of the party but I only stayed 1.5 hours, didnt drink,didnt dance & hardly ate snything. It is tough so you are doing well. Wishing you all the best.

  • I also feel mostly all of the same things you described. I had VM in Nov 2016 and just started back to work this week only part time. Somedays I think I'm going to be "Me" again. But other days I don't know me. My husband says I've changed since the illness. I have also noticed that if I do too much physically my head feels like it's swollen and pounding inside, also my face gets cherry red all this is new since November. I've been signed off by the doctors. But these after effects somedays drive me to the edge of crazy. I'm very thankful I have found this site because it reassures me I'm not crazy or alone. Thank you everyone for sharing. It helps.

  • Hello Innes

    Firstly I congratulate you on the amazing and remarkable recovery you have made already! You have been VERY seriously unwell, and you should be proud of yourself and your body for the progress that you have made.

    I had VM, I know this is different to BM but can relate to so much of what you're saying. How long ago were you diagnosed can I ask?

    I also suffered with tingling, numbness etc right down the left side of my body. This was made worse by walking, or even just wobbling my head! I'm pleased to say that this strange and worrying sensation did pass in time.

    The emotional impact does last a lot longer. I feel as though some colleagues, friends are almost bored of hearing about it. My social life now is very different to how it was prior to falling ill with VM. Sometimes I'm fine and can join in with the best of them, then on other occasions I'm completely wiped out, and even a sniff of a drink brings on a pounding head. I have been made to feel that it must be 'all in the mind' now as the initial illness was ages ago. It can feel really isolating and agree, that only adds to increase stress and headaches. This probably upsets me more than the physical symptoms.

    I'm so grateful to this site, or at times, I would be convinced that I was going mad!

    It really does sound like you have come so far and proves just how strong you are. Well done!! Please take care of yourself, and I really do wish you all the very best with your continued recovery. As this site shows, you're definitely not alone.

  • I should also add that I too still had terrible headaches & could feel the pressure building up inside my head months after falling ill. I have since had sessions of cranial osteopathy which has been marvellous and I truly believe that the headaches would not have improved without it. She explained what was happening in my head and why I was feeling the pressure build up and how what she does would help. She also reassured me that she was not a bit surprised that i still had so many physical & emotional issues after what is essentially a head trauma. I also had massages as my body felt like i had flu every day. Again she easily found where the problems were and was super lovely to me & threw in a bit of Reiki. I wouldnt normally do that but was desparate to feel better & was amazed at how it made me feel. I had some financial help but also thought that my health justified the cost especially as i was not able to socialise so was spending less eslewhere. I am still off the booze but to be honest, if I can get the rest of me back then I am not too bothered about that. This discussion has prompted me to update an earlier post of mine later today with some 'positive recovery markers'. I hope this all helps you.

  • Hi Innis , Were you consious enough to know that you had meningitis? Or how many days you were in uncounsious state? Can you please brief it because my grnad mother is suffering badly from it. She hasn't opened her eyes for past 3 weeks. She still under antibiotics

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