Bacterial meningitis story/ advice needed

[Sam-0]

Hi,

I am around a month into recovery from bacterial meningitis. I contracted the infection only a week after my 18th birthday and at first was really confused about what was wrong with me. I didn’t sleep all night because of a blinding headache, I was constantly drinking water and my body temperature was changing all the time, in the morning I just sat in my dark room hoping that what I thought was just a migraine would soon clear but it didn’t… I soon noticed that light made it worse and got up and started being sick and a rash started to appear but being so young I didn’t really think much of it. My friends needed a lift so I forced myself to my car and gave them a lift, this was when I realised how bad I actually felt… somehow I managed to drive but when I got home I put my car straight into my house wall. I stumbled out of my car nearly unable to walk and phoned my parents. I was taken to my local minor illness unit and then found out how critical my condition was. I was rushed to the nearest hospital in an ambulance in critical condition and after many scans and tests I was diagnosed with bacterial meningitis. This is the worst pain I have ever felt in my life.

But for me now I am just scared of the long term effects of the illness. At the time I didn’t realise how serious it was and thought I would be fine in a couple of weeks. This is not the case. I am still getting consistent headaches and struggle to do anything at school and I have exams in a month and if I’m honest I’m scared because I am not the same as I was before the illness and really struggle with school work now so I don’t know what to do. The illness has appeared to have ruined any of my future aspirations so mentally this has had a huge effect on me. Does anyone know how long these effects will last or if they last forever? I just don’t know what to do and just desperately want to go back to being a normal teenager again. But I survived… that is the most important thing. But if anyone has any advice it would be much appreciated.

Thanks

Sam

[Taisey]

Hi Sam,

So sorry to hear you have gone through this, it’s so traumatic. I had pretty much exactly the same experience.

My recovery for the first month was migraines, extreme fatigue and almost like a head-rush feeling. It does feel like it’ll last forever but it does settle. I spoke to a nurse from Meningitis Now who helped me as I was so worried, and she told me that although the infection had gone, the inflammation takes about 4-6 weeks to go down and so to listen to my body and when it needs to rest, then rest. She was right, it took about 6 weeks for me to feel like somewhat of a normal human again but each person is different. You should have follow up appointments and they may send you for an MRI too, if you haven’t had one already.

It’s rough, but you’re already doing amazing having pulled through the worst of it! 💪

[rugbychief]

Hi Sam

I'm 39 and contracted bacterial meningitis in November 2019. My wife and 12-month old son had both been very ill with a terrible flu for 2-3 days before I was affected – when I slept in the spare room because I felt rough, I assumed it was just flu. The next day I was unresponsive and I was rushed to A&E, after my wife explained my symptoms over the phone.

I was in ICU for a week and hospital for nearly 4.

I was told that it would take up to 6 months to get over it – in truth, in my case, it was more like 12 before things settled down and I felt consistently the same. This was particularly true of the 'balance' issues that could make me very uneasy on my feet. This has eased a lot now and means I can keep fit, which makes a huge difference to my energy levels (I can't recommend this enough).

I lost nearly all my hearing in my right ear but am hopeful that I can pick this back up with a hearing aid (had an audiology appointment yesterday!)

Not everyone's experience is the same and I really hope that you don't suffer long lasting effects. It's fantastic you are messaging a month into your recovery, I wasn't ready to do that, so can only be a good sign.

Look after yourself and I wish you all the best with your recovery.

Dave

[sorba]

I had bacterial meningitis 31 years ago, made a good recovery having been very I'll and now live a normal life. I suggest you ask to have your exams deferred for a year and concentrate on getting rest I'm sure you'll feel better if you think positively

[JLJB]

I would like to add my encouragement. I had a rare bacterial meningitis (erhlichiosis) in 2019 at the age of 65. I was hospitalized for 3 weeks and in rehab for 3 weeks. Recovery was long and difficult. Exhaustion and headaches that gradually waned. Loss of balance lasted longer and is still a slight issue when I make a quick turn or look up for more than a couple seconds. Four months into recovery I lost most of my hair, so I had it cut very short. When it grew back, it was curly, so that was another adjustment. But after 6 months, it began to grow in normally. What a ride! But I will forever thank God for my recovery Take your time to heal and don't overdo it even though you will be tempted to. I can't stress this enough! You are not alone and you will get there,

[TheBillman]

Hi Sam-

Glad to hear you're making such a strong recovery in just a short time! The headaches will wane and you will get back to normal with time. My only suggestion is to be patient and to listen to your body. Overdoing it will cause the headaches to come back. You may want to consider taking a little time off of school so you can heal - perhaps a semester? Stress is likely to make the symptoms worse and cause the healing to last longer. Give it time, see how you feel, and reevaluate. Believe me, it will get better, way better! Just give it time and don't push it. I know it's hard to do, but try to stay positive for it will help with healing!

[FFFred]

Hey Sam,If it makes you feel any better I know what your going through. I had terrible migraines for about a year after my BM. I ended up having a small hole in my meningeal sack (the sack our brain lives in) and was leaking spinal fluid. I had to have a surgery to correct that and to repair where my mastoid bone had been broken apart. I’m in no way saying this is what you have going on. One thing that has helped my tremendously is the supplement Magnesium Citrate. If I run out or stop taking it my headaches get much worse and happen much more frequently.

I know it’s hard recovering and we all want to be “all better” like yesterday. But our body’s went through an enormous amount of stress. It feels like we might never get back to normal. Slowly you will start feeling better. Your going to need to stay rested and physically active. I’m four almost five years post BM and if I don’t get enough sleep its like I was on a week long bender and I’m hungover for a few days.

It’s a lot to wrap your head around what happened to you. It’s even more daunting to try to figure out what life will be like after. This recovery will take time. It’s hard to allow that to happen first of all and second of all no ok with it taking time. But you will feel better!! You might not be the person you were before this happened but I promise you you will be stronger and wiser! Don’t ever forget that you survived something that has a 90% fatality. Your stronger than you think you are!!!

[proudmamma]

Hi Sam

I'd like to offer some encouragement. My daughter had bacterial meningitis almost 2 years ago. She was in hospital for 2 weeks and a further 6 weeks on a cocktail of antibiotics at home through a PICC line. Even though she improved so much in the early months and wanted to get back to school and socialising, we realised over time what a huge impact this disease had on her and the best thing for it is rest, time and learning how to look after herself.

I think for you being just a short time into your recovery, give yourself grace and time to recover. Unfortunately it seems recovery can't be rushed. For my daughter any time she pushed herself it was like she would go backwards. She still suffers from fatigue as an after effect, but we can see that improvements have happened over months rather than over weeks.

Wishing you well

S

[kelpie25]

Hello SamWhat bad timing for you. If you haven't alone so, please contact Meningitis Now, and you'll get sound advice and excellent support.

I think you, with your parent/s, should have a meeting with your school, to discuss your options. You might be advised to "miss" your exams next month, concentrate on your recovery and take your exams next year.

At 18 you're possibly thinking your life is over. It isn't- you've survived BM - and while that might mean you need to put immediate plans on hold, nothing is cancelled, just delayed. Taking things slowly, listening to your body, is the best thing you can do.

Wishing you the very best.

I had VM a few years ago in my 60s, but a car accident 6 weeks after my 21st did affect my life thereafter - although I didn't realise that it would, and that was in the days before Disability Discrimination Act 1995 and it's replacement the Equality Act.

Kelpie25