This is the sentence I have had said to me 100 times since going to hospital for 5 nights back in july 2022 for meningitis. I have constantly felt as though I should be grateful and have been told how lucky I am for still being here - which I am but I was discharged as soon as physically possible and given no support or help. Only through my own research I discovered I should get a eye test and a hearing test, was never told this by the doctors. During my hospital stay I asked everyday for an inhaler as I have asthma and I never received one so came out of hospital with a chest infection that took about 4 months to get rid of.
I was told I would be better in 2 weeks but I spent 2 months on the sofa and as a previously healthy 19 year old I found this incredibly hard missing out on summer holidays with my friends and it lead to my mental health seriously declining. No one seemed to understand I could only go out for a few hours at a time before I became seriously tired or that I couldn't concentrate on conversations and my brain would go foggy.
Fast forward to Feb 2023 and I am still recovering with my chronic fatigue - one of my main symptoms is morning sickness/ dizziness when waking up and going to university early, I have had multiple rounds of antibiotics and blood tests but they have come back fine and I feel at a loss for anything else I can do to help my recovery process speed up.
Viral Meningitis should not be treated as a lucky case, it should be taken seriously and given proper aftercare and support.
Any advice would be very much appreciated!
Written by
greentraveller
To view profiles and participate in discussions please or .
Hi, sorry to hear and have it confirmed that patients are still being disregarded like this. I have posted many comments on this site following my five days in hospital which was a complete and utter fiasco as well as leaving hospital after being told I would recover at home in two or three weeks with absolutely no after care or support whatsoever. Over a year after leaving hospital I discovered the virus, varicella zoster virus, had destroyed the vestibular nerve in my left inner ear which accounted for the constant dizziness, brain fog and disequilibrium I suffered trying to stand up or even walk a few steps without falling over. So many others have also suffered from the lack of understanding of actually what VM actually does. It is well reading posts on here by Jonad 724 which for me typify the sort of barriers people with VM suffer when trying to be understood and obtain any sort of useful care and treatment. Anyway all the best and good luck with your recovery!
hi, I’m so sorry to hear this. I had viral meningitis 8 yrs ago and it’s turned my life upside down. I’ve not been well since I have been left with chronic fatigue and orthostatic intolerance, dizziness, brain fog, memory loss, migraines and I’m no longer able to work, I have mobility issues and classes as ambulant disabled. I hate that 8yrs on people are still told you will be okay in 2 weeks, which is what happened to me as well. The charity Meningitis now can really help in lots of ways, from talking to someone to advise etc. so check them out. I’ve found pacing to help with my fatigue - look this up and the spoon theory, and listening to your body and when u need to rest you rest. I pushed and pushed and pushed to be seen by a neurologist who understands chronic fatigue, found myself a chronic fatigue clinic and a cardiologist who deals with syncope but that took many years and I had to research and find these people myself as i didn’t know what was wrong with me especially with the fact I collapse. It shouldn’t be like this, but unfortunately it is. Please keep on to your gp and get referred for all your different symptoms and contact meningitis now. Good luck and no that your not alone x
Hey, three years in and I am still suffering from the brain fog and dizziness. But I look fine so I try to act fine. I get worse when I am stressed. I have no advice just don’t feel alone and don’t think you are crazy. It’s real and the CDC and the medical profession in general are just wrong. Good luck. Hope just knowing this is real helps a little.
I had vm in 2018. I had to go back the emergency room after they sent me home and said I had migraines. I’m a teacher and I couldn’t go back to work for a month. And when I did I had to operate at a very reduced pace.
Before vm I was squatting 385 pounds for 3 sets of 5 and afterwards I wasn’t able to squat the bar for 9 months. I tried every couple of weeks because I had equipment at home. But my body would literally just give out or I would get extremely dizzy.
Most of the effects subsided by maybe a a year and a half to 2 years later, but I consider myself lucky given other peoples stories. I experience intense neck pain in certain positions for years before it subsided, and my memory has never been the same.
What helped me was just comparing my situation to how I felt a month or two prior and celebrating progress. I also kept actively trying to keep things in perspective. Progress for me was slow, but as slow as it was, it was eventually going to stop. So I was thankful for any movement forward.
Also, I assumed that my current state wouldn’t necessarily get better and continuously strategized how to live my life according to that moment, while also giving myself lots of grace. I still had extremely down moments and felt “depressed” at times. So it’s not cure-all. But I kept my feet moving. Like I said, I didn’t feel great a lot of the time, but if I had stopped “moving my feet” as much as made sense, then I know I would have felt a lot worse.
Good luck on your recovery and life! And there is some sort of light at the end of the tunnel. I am able to squat above 400 pounds again. It seems bro-y but seeing those weights increase visually helped me see my progress and kept me going. Keep your eyes on the progress real or manufactured. ✌️
I got VM in 2012.My Specialist told me that it takes 15 years for the Meninges to fully heal,the coating around the brain .I have 5 years to go.I drove myself to the ER after work.I had a 105 fever.The put me in ice blankets and pumped in several antibiotics.I was there for 5 days.I went home with a pic line so i could give myself antibiotics through a medical line for 3 months. I couldn't button a dress shirt for a year.I to this day have severe headaches. The only things that help are 4 motrin and an Ice pack. Sometimes i have to take 4 motrin 3 times a day,other days i can get by.I've been to 4 specialists who want to dope me up with Depakote to relieve the headaches,i tried for two days,i couldn't leave the house. The hell with that feeling. I get by now,but i'm starting to feel my age and i ask myself is this still the VM ?? I went through the same thing,people told me thank God It wasn't Bacterial !! I spoke to several people who had Bacterial Meningitis that said I didn't get that sick !!!!!!!!
When I went to the USA, I was told I couldn't take my meds with me, whilst there I discovered Motrin and was amazed at how much more effective they were compared to the Ibuprofen I was using back home in the UK!?
Hi, I really sorry to learn that you have suffered from viral meningitis and the difficulties you are still experiencing. Although many people do make a good recovery after viral meningitis, for others recovery can take a long time, and some people are left with long-term problems affecting their daily lives.
We can provide support and information for anyone living in the UK, following a meningitis experience. We also have a support programme specifically for young people up to the age of 25yr. If you would like more information, please do contact our helpline either by email: helpline@meningitisnow.org or by calling on 0808 80 10 388.
yes!!! I have recurrent meningitis. Just getting over 7th attack. Luckily this was a little more mild than some. But it had been 3 years since last attack and I was finally past the fatigue. Starting all over again sadly. Headaches, fatigue and vertigo/nausea for me. Brain fog but seems less this round.
My mother in law was getting over covid and just couldn’t bounce back. Doctor tells her to patience it’s just long covid. Could take a few months. Ummmmm her symptoms were EXACTLY those many of us suffer. Brain fog-crippling fatigue-tinnitus-etc. Long covid or just long viral???? We need the medical community to do some serious research into this.
And while her doctor at least acknowledged that she’d feel bad for months, he gave her no help. Just to go home. Crazy.
I was diagnosed with VM in 2019 and spent 10 days in the hospital and then sent home even though I showed little improvement. My husband refused to sign the release papers, so the doctors stuck them in front of me to sign, which I did, but I did not know what I was doing and didn't even remember doing it! It turned out I had a rare bacterial meningitis and a few days later I was readmitted to the hospital, this time with sepsis and kidney and liver failure. Obviously meningitis in general is not well understood even by specialists.
I 100% agree with you! I had viral meningitis and was in hositpal for 18 days, I remeber being so dissapointed everytime they told me I couldn't go home as I was struggling to cope mentally and emotionally. Looking back I'm glad I stayed as I couldn't imagine how hard it must be for you to still be experiencing those side effects. I am fairly new to my recovery and can't wait to get back to it however don't want to rush!
I am experiencing the same as you, going out wears me out and makes my brain seem really heavy and foggy! I can't imagine how hard it has been for you navigating this without any support from your hosptial, I've found the charities around meningitis have been immensly helpful for me to feel less alone as get support when I need it! Good Luck in recieving support and I hope you find support that works for you and helps you!
Hi there! I feel with you…!! I had viral meningitis a few months ago and i am still not able to work (home office) or spend my time with friends,as it is extremely stressful and causes brain fog,so I need to lay down for hours to get rid of it. I know there are serious cases of meningitis and I know I can be lucky that I have no further problems and damage,but I also think that doctors only tell you that you are physically healthy and a few weeks later everything will be ok.but it is not….the fact that you cannot be part of your social life anymore, that your daily routine changes completely and psychological impact of viral mentingitis can be life changing! They offered me antidepressants that i refused. I hope I can have my normal life back after a few months time.Did you recover after one year or do you still have issues? Many thanks!
Hi! I’m 7 years post meningitis (bacterial) & still have days of foggy brain & crowds or loud talking gets on my last nerve! Walking & balance are terrible some days. My neurologist prescribed Amitriptyline & Duloxetine which helps tremendously but I have not been able to wean off. When I was released from the hospital I too was not given any info. (once you are physically better you go home, there is no psychological or emotional support given). My PCP only treats my chronic conditions. Any other symptoms I might have are attributed to the episode of meningitis or being overweight. I have started exercising daily but sometimes that is more torture than benefit. I really appreciate this site & those who use it, as it really helps to know you have people who listen & have experienced the same “odd” symptoms that others can’t empathize with. I have learned to finally slow down but it has been hard. I think we all have been given the “you are lucky” speech😕 I hope you find yourself feeling better & in control!
HiI am 47 an I am a viral meningitis warrior contracted back in 2018 and just like you they told me it's just a virus and I'll be OK boy what in they wrong...I have a slew of health conditions vertigo hearing loss fibromalagia arthritis and osteoarthritis in my knees...viral meningitis is not to be taking lightly just bc it has viral doesn't mean it should....they don't tell us all the other side effects and possible complications ....I had to do my own research and join a support group as well bc things were happening to me that I didn't understand and didn't Iknow why... I also have chronic migraines as well. The Dr's treated me like I bopted in for viral meningitis...you should talk to your Dr abt vertigo that's what that dizziness is called and it sucks....
I am truly sorry that at your young age you are experiencing this and not experiencing life like you should...hugs....
I pray you have a strong loving support system that you can lean on and talk to when things get rough and who understands and helps you ...this is key a strong support system..stay strong and keep your head up....what medicines are you on if you don't mind me asking? I am an asthmatic as well and I have two inhalers and during my time I struggled with college working and raising two young girls but by God's grace and mercy He saw me through and gave me strength bc I had no help no compassion nor understanding from the majority of Dr's that I went to they wanted to just shrug me away and said I shouldn't be having any symptoms like I was it was just only viral meningitis....so stay strong and fight for your health you know you better than any drs...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Viral meningitis - I'm struggling 
INSOMNIA - after Viral meningitis
Viral meningitis last month
Viral Meningitis recovery experience
Viral Meningitis Recovery
