Menengitis

[Tracy290571]

contracted meningitis in December 2022 and although unwell I put my symptoms down to just feeling unwell until I wad found by family delirious and very confused and extremely unwell.I was then taken to hospital in January 2023 and was diagnosed with menengitis.

I was immediately put on 3 weeks of constant intravenous antibiotic abt every 4 hours and eventually sent home with more antibiotics for a further 2 weeks.

Since contracting menengitis I have sever memory issues and can remember little to no information related to me and have to rely on my daughter to remember the slightest thing.

I still to this day after 4 months have memory problems.

Constant headaches

Back pain,leg numbness and both my hands are painful and numb..

Which in my opinion is getting worse and not better.

I am due for more scans on my back to see what's going on there and hopefully to see why my hands are numb and painful.

I have constant ear I fections that only seam able to cure with the strongest antibiotics a doctor can give but once the course has ended the ear infections just keep coming back.

I would really be interested to know if any other suffers of menengitis get anything similar to myself as it all seams to be baffling the doctors.

I am very concerned abt my hands being numb but painful as without hands I am pretty much useless

I also gave anxiety which has been with me since breast cancer 2014.

And major sleep issues.

I think I must sleep no more than 3 maybe 4 hours in a 24hr period.

All which docs tell me is related to the menengitis

[Fozzy81]

sorry it’s affecting you this way, I contracted bacterial meningitis in march 2021 then had viral meningitis summer 2022 been left with cronic pain everywhere , hearing loss , memory loss, confusion, cropping headaches , still all there 2 years on. It’s a hard fight just to feel normal again ,

[Tracy290571 in reply to Fozzy81]

Hi Fozzy81.Until I was pointed to this group I thought I was going quite mad.

Doctors look at me like I have 3 heads when I tell them about all the constant symptoms like the memory..headaches.ear infectio s and pain all over the place.

I personally don't think people are very aware of the lasting impact of menengitis until they experience it.

Xx

[Fozzy81 in reply to Tracy290571]

You have to constantly fight the medical professionals as I’ve found in my case they don’t believe me and think I’m faking it. Before meningitis I was working 60 plus hours during covid , I ended up losing my job after meningitis because I couldn’t physically get out of bed , also get tired easy …

[Tracy290571]

Hi Yep I know exactly what your saying.

I used to work day and night caring for alzheimers n dementia suffers..personal care . Medications etc etc but can't do any of these things now as my memory is shocking. My brain won't retain information and I see myself as a risk to the elderly in my care.so at mo stil unable to do my job.

My daughter has to come with me to most appointment as I can't retain the information reeled off at me.

And most times I feel as though they don't believe a word I am saying and like you faking it all.

I wish I was.but unfortunately it's all too reel.

One doctor even said that I have had memengitis once so won't get it again lmao.. so not true

[11765]

Hi Tracy, I got meningitis in 2017. I have memory loss. Pain in my hands at times. I still have extreme headaches. Drs say it's migraines from meningitis. I also have back,leg pain. I've had several scans for all without a significant diagnosis. I've had main scan and have been sent to specialist for brain. Drs say I have grey mass caused from meningitis. Like scars I think. They're still working on that. Also sleeping problems..been diagnosed with narcolepsy w/ cataplexy from meningitis. It's been a long struggle . I pray we all can find answers to this disease. 🙏 This group has helped me alot. God bless you and take care.

[Tracy290571 in reply to 11765]

Hi 11765I am so glad I got pointed to this site.

Docs would have me thinking it was all in my head I will be pleased to point him in the direction of this site too when I next see him just to confirm to him the aftermath of menengitis is real.

Good luck with your future health.

Xx

[agapelmh]

Like you, I had meningitis in December 2022 and was hospitalized most of January. At one point in the hospital I took a downturn after doing better which caused doctors to run a smattering of tests to include an MRI in which they found brain abscesses. As a result their plan to keep me on antibiotics for a couple weeks turned into three months until they verified that the brain abscesses were fully cleared up. Might be worth pushing doctors to run a brain scan to verify that all the meningitis is fully cleared up. I particularly mention this because the antibiotics to take for ear infections seem to help but then when you stop the treatments the infections come back. As the brain abscesses cleared I could feel myself improving physically and mentally. Walking and balance got significantly better during that time and all around mental clarity got better. Still have significant hearing loss which is longterm and the exhaustion and sleeping issues stuck around for a while but have been slowly (key word "slowly") improving. Hang in there. Keep giving your body time to heal, it has been through a lot!

[11765 in reply to agapelmh]

I've also had several brain MRI's. Since 2017 they're still trying to figure out what's going on. My sleeping problems drs say is narcolepsy.

[Tracy290571 in reply to 11765]

Ime going to put this info to my doc.. ime lucky if I get 3 hours a night for months now.They call it insomnia.

But was never thus bad until menengits struck.

All useful info thanku.

[Cstach1]

hi Tracy,

I was diagnosed with meningitis and ensephalitis in October of 2022. I had been having immunotherapy treatments for advanced metastatic melanoma at Sloan Kettering Cancer a center in NY, although I live in NC. The doctors in NC could not figure out what was wrong with me each time my husband took me to the ER. They would pump me full of steroids, and I would recover slightly…just enough to go home with a diagnosis of vertigo. Several days later, my speech began slurring, and I could no longer walk. My husband called my doctors in New York who immediately ordered a spinal tap, and found it was meningitis. I hear many people saying they were on antibiotics, but my doctors gave me high doses of prednisone, from which I am still tapering after seven months.

Doctors aren’t sure if my contracting meningitis is due to adrenal gland failure, but that is what they suspect. If I don’t take my steroids, I have awful fatigue, dizziness and headaches. But with the steroids, I am playing tennis and staying active. Maybe you can ask your doctors to test your adrenal and thyroid glands? I now have an endocrinologist, neurologist, medical oncologist and surgical oncologist managing my medical care, but they seem to have found the proper plan. I just wanted to contribute to give you hope that things can get better!

Ps I did lose my hair after the trauma of the meningitis and ensephalitis, which my drs say is normal….but it still stinks to have survived cancer twice but now lose my hair because of stupid meningitis!!

[Tracy290571 in reply to Cstach1]

Hi thanku for all that information. Very interesting.I have never felt so bad after any ill ess to be honest.

Headaches constantly.memory issues..I dont gonout in public alone apart from app or shopping due to the noise over load I now experience and send my anxiety through the roof..my daughter co.es with me every where when I have to go out.

My anxiety is through the roof.

Constant ear infectio s one after another and still not improved now.

Back hip and knee pain

Arms and hands hurt so much and are constantly going numb.

And I am lucky if ibget 3 hours a sleep in a 24 hour period.

Sleeping tablets did work as the knocked me out which I was quite happy about I ha e to say but docs said can't ha e any more and they introduced me to an APP called sleep station.. what a load of nonsense.. they put the lack of sleep down to insomnia..I just don't under stand hiw they can not see its all related to the menengitis and at the moment I am banging my head again a brick wall.

[Mar879]

I had meningitis four times and the first time I had it I had memory lost for around 4 months. The other times I forgot how to say some words or type but all came back within days after me being awake. I was told memory loss was normal the first time until all the inflamation in the head came down as it could take time. Hope that helps.

[Lilypad56]

Hi Tracy,

Sorry to hear of your plight. I had bacterial meningitis, encephalitis, pneumonia and hyper calcemia. I lost hair, memory problems, sleep, balance, stamina and couldn't string sentences together. Had emergancy op in lockdown when found out had hyper parathyroid - so it removed. That was Dec 2020. I had good consultant and Gp. However I had to find good quality magnesium tablets with a relaxing herbal tea to ensure I sleep. It does work most times. I took everything to help the brain supplement wise. Researched everything and went down the natural route. I also 'ground' myself which helps bring down inflammation in the body. I try to organise my home so everything in certain space so I don't forget. Finding natural cures and I suppose alternative therapies have help calmed my whole system down. I'm disabled but more able now.

If your interested in what I purchased and do let me know.

Im classed as three brain injuries, meningitis fatigue with memory problems and balance issues so use stick sometimes. Im a happy 57 year old most of the time 😁.

Take care. 🙂